History

Tuesday, March 21, 2017 11:17 AM CDT

Hello.

I know. It has been months and months since I have updated.

I have realized some things about my inability to use words the way I used to—where I used to have trouble stopping the endless flow of words that helped me deal with our journey, in the last 2 years or so I have found it very, very difficult to put things on paper. My blog stopped…and then I stopped writing here. The effort to update just became sort of an uphill pushing a giant rock kind of moment. I have tried to make some healthy choices to get some oomph to keep walking uphill; I think they are helping.

I ended up unexpectedly not having to work this week—only realized yesterday that for the first time, I don’t have to substitute for middle school while our high school goes on its choir tour, so I am trying to catch up with about 4 years of my life all at once.

And I decided to make myself put some words on paper.

Phoo.

G is doing great. Her last scan, right before Christmas, was gloriously mom-stable. (Doctor stable allows for some growth, and seems to me to be a semantic trick. If there is any growth, momma is NOT going to call it stable. This scan was mom-stable). It really looked good, in the context of “hey, there’s a hell of a lot of tumor in there”, it looked better than it has in a long time. G happily told Dr. B how she made the Dean’s List in her first semester at community college. We are so grateful for the Disabilities Office at Raritan Valley Community College, they go above and beyond to help students succeed. Any time G has an issue, she marches up to the office and folks always help her—whether that be enlarging something she can’t get bigger, or working out issues with the testing center and G’s vision needs, getting a note taker who will type notes so she can read them . . .they have been amazing.

To not have to work so hard to make things happen for her is a relief. She advocates so well for herself.

School is still challenging; G works harder than most people just to get things done, but she IS getting things done, and we are really proud of her. She plans to work through her course of study in 3 years instead of 2, which takes some pressure off.

Rosie is doing great, too. Her new school is a fantastic fit for her—she has so many opportunities to serve in a variety of different ways—with the elderly, with special needs children and adults, with a soup kitchen, with making blankets for folks in Appalachia, and she is doing well in all her Honors classes--and she did in fact do competitive cheerleading this year, which still boggles me. Aside from a broken hand a month before the Florida trip to Nationals (imagine how THAT day was here—yergh—granted, this mighty kid did another 40 minutes of cheer practice AFTER breaking her hand by whacking a girl in the head, accidentally—and yes, that girl was fine! And yes, onco mom wanted to see all the films, *cough), and a snowstorm the day they were supposed to fly out, it was a pretty amazing season. Rosie learned so much.

To my great delight, Rose will be going on a service mission trip to Appalachia in June. She is growing up, and we are really grateful to all the folks at Immaculata.

She also still loves Circus. Circus is joy. Everything about Circus is joy.

Except that she gets dizzy ridiculously easy, which we think (from asking Dr. B) might be related to the plexiform, but that is what it is. R’s last scan was stable. We are holding our breath a bit because of the age she is – and she IS actually growing, she is only about a ½ inch shorter than Genna—she might actually break 5’! (cue music of extreme amazement).

Andrew is a SENIOR IN COLLEGE. His summer in Massachusetts was the best experience of his life—and so far his spring season is off to a great start. I hope to get to see him play, soon.

Because the girls are at new schools, and I have had some challenges at work, I have been drowning a bit. Until a few weeks ago my entire life was driving—some days I would be in the car 3 hours. I am grateful for the time to be with my girls, honestly, I really and truly am grateful. I just need to get more organized so I can balance things better.

Facebook keeps reminding me that I say variations on that last sentence about 57 times a year for the last 8 years or so. That does not bode well for my success, does it?

Don’t answer that.

This fall, we lost one of our longest-NF friends, Gabbie, and a long time BT friend, Winter. My kids knew Gabbie, we have spent time with her family, we...it was very, very difficult. Pray for her momma, Ori, and Winter's momma, Michelle. These mighty ladies literally spent every moment caring for their girls. We love you, mommas.

Next MRI for G is in June. Actually, I need to set that up (add to to-do list). She will volunteer at Camp Sunshine this summer, which she is SO EXCITED ABOUT, and then I hope we can get in for the Low Grade Brain Tumor week as a family. I need to do that paperwork this week, I have R’s forms, but I won’t have G’s until June. R will scan again in August. . .

And so we go on.

And while this is no literary tour de force, I got words on paper. Well, digital paper. And that is going to be my personal victory story for the day.

I might need some Cadbury. . . I have had NO kind of mental block with the Cadbury, so never fear.

Peace,
k

Thursday, July 14, 2016 2:28 PM CDT

Howdy, all.

I have so procrastinated on updating, even though things have been a fest of hooray on many fronts—putting all of the last bit of time into words has just been challenging. So I avoided it. The end of school was such mayhem, I have just felt singularly without words.

But here it is:

Genna graduated high school in May.

When I started this page in 2004, I could not see this happening. In 2006, we weren’t sure G would get to middle school. In 2012, 8th grade graduation took on a particularly poignant feel, as we just weren’t sure what 2016 would look like for our family.

She did it.

And I have been at a loss to figure out how to put this all into words, all of what this means.

She will be 18 in less than 2 weeks. EIGHTEEN. To quote the Princess Bride, this was “INCONCEIVABLE!!” rather a lot in the last 12 years.

Not only did G get through chemo #5 in the summer of 2013, she survived high school. Academically, it was challenging. Very challenging. G works so hard, and gets so boggled sometimes, and trying to find the best way to help her succeed is sometimes a great quest into the unknown. Brain tumors are not conducive to brain stuff like learning. But she did it.

Socially—well, this year was tough. I think that is part of the reason I have been so. . . wordless. It was a tough year. As mom/teacher, seeing what happened at school was excruciating. It was literally painful to me, to the point where I was not sure I could continue. For G, well, she now recognizes when people are mean. When people exclude. When people bully. When people make snarky comments at her expense. She understands it now. That is pain on top of pain for a mom and dad and family. And if I let myself REALLY type out what happened, my computer will be engulfed in flames. So I will leave it at: it was a tough year. I hope and pray that county college is a new start for G.

But G also has some good folks who really look out for her. And I am so grateful for those people who have her back, and for the administration that took very, very seriously how bad things were. I appreciate that.

So—I have waited to update. I can’t lie, and to not acknowledge G getting through the tough moments is to lie by omission. Sigh.

She is a mighty girl.

And at her graduation banquet she sparkled in hot pink glitter tulle and ribbon roses, with sequined animal print high top sneakers. The girl knows how to rock a look. She was radiant. We were all so proud.

G also was awarded the Josh Gonder Memorial Scholarship, for persevering like Josh did through his illness. We are so, so honored that Genna received this award. Josh was an amazing young man, whose positivity and humor belied his physical limitations. We hope G can be just like Josh as she gets to college.

We are still trying to get together the last bit of paperwork so G can sign up for fall classes at the county college. I botched that, I missed one document which is proving hard to get (not because of unwillingness, just vacations and proximity to Philly are messing us up). Hopefully we can get G signed up soon. She is very worried about placement tests, but working hard at preparing as best she can. In the middle of vacation and camps and such she has an eyeball check in Philly on Monday. I am not super worried.

Rosie also graduated this spring: eighth grade! May was insanity here, R also had Circus galore, and we went to Cape May for a few days (June), and graduations and finals and mayhem. She also decided that she would try out for cheer at her new high school, because cheer seemed “circus-y” (ie there are pyramids, Rosie LOVES a pyramid). We hoped she might get to do JV football cheer, she has zero experience but she works hard and I was thrilled she might know some people before school starts.

She made the varsity competition team. The coach followed her out of the second day of tryouts and asked if she would consider varsity competition. . .

Um. . .

Yes. Egads.

Of all the improbable things a child of mine would do. . .
Newsflash, I am not super perky. But I love cheering for people doing stuff, so. . .

Yeah. Super improbable.

But she loves it. She loves the practices, the team, the coaches. She loves conditioning HARD. (She is a beast). She loves flying. At 4’11” she is the tiniest on the team, and she FLIES. We are agog, but I did ask God if it was meant to be, just open the door. VOILA! BEHOLD THE GATE HAS OPENED!! And I have learned a lot about cheerleader stereotypes (these girls are nice, they are a TEAM, they are funny, and they are athletes), which has been good for my personal growth.

Her MRI is in August, but I am choosing not to think about that yet.

Andrew is in Massachusetts playing for a college baseball league. He is mostly being used as a lefty specialist, but he has done really well in that role, his ERA is 1 something. He is living with a host family and plays with a lot of great guys on a great team. We were really impressed with the program and the people up in North Adams. He will be a SENIOR in September. His hair is near Rapunzel length at this point, but really, I don’t care. He will be 21 next week.

Ay caramba!

So things have been busy and crazy and mostly normal. G is fully over the whooping cough, and so far. . .
well, I am not going to jinx anything. But so far so good this summer on weird medical say Whaaaaaaat? Moments for Herself. Knock on all the wooden things in the tri-state area. . .

My mother in law is having some health issues (prayers appreciated), and we are trying to help out. It’s a different situation, but some of our hard earned experience is proving helpful.

So. . . that is that. We are on the brink of a new moment for G and R, and it’s a little scary and exciting and for G, really huge. I hope and pray we can figure out how to navigate this new moment in joy, and not trepidation, even though I do trepidation super well.

Peace out, all,
k

Sunday, April 3, 2016 2:17 PM CDT

Hi, all. Happy Easter.

Figured I should follow up after my recent update of massive dismay. Genna is doing pretty well. Well, in between coughing spells she is fine. Brilliant. No problemo at all. A few times right after we saw the pulmonologist I thought that perhaps we made a mistake and she was fine. . . and then she'd have another scary, scary episode.

The 100 Day Cough is no joke. I am still aghast that this is the MILD form of pertussis (whooping cough) thanks to the vaccine booster G had 6 or 7 years ago. But YIKES. It is awful. I can see how this could kill a baby too young for vaccination or an elderly person or a child who is immuno-compromised (and you know those kids are close to our collective heart here). My frustration over all aspects of this has not abated.

G has gotten remarkably good at handling the episodes. She can usually sort of ground herself, not panic, and try to relax, which is much easier said than done while you can't get air in. That said, we've had a few pretty scary times. Knowing that it won't kill her only goes so far in helping her through a bad episode. We are all pretty jittery here, now, any time she starts coughing--and G has gotten adept at giving us a quick "I'm ok" if appropriate. If not, we try to get outside to cooler air, or I just try to steady her and say things like "it's ok, it's ok, just take it slow, you're alright”, all of which are stupid things to say. But what else can I do?

Sigh. Nothing. Aside from the tessalon (which has helped a lot, we think), there is nothing to do but wait the thing out. Stupid things trigger coughing fits--laughing too hard; a sip of water; breathing. It is a really annoying and unsettling sort of ailment.

Still, the episodes are spacing out a bit, we have had one or two breaks of a full day or two, which is nice, and the midnight running has diminished greatly. I still wake up WORRYING about G coughing, but that is just because I am mental, so no worries there.

In more cheerful news, in the middle of next week Genna goes on her final choir tour, this year to Vermont-- she is very excited about that--I am worried about the cough, but again--there is NOTHING to do about it, and she has had some epically bad episodes early on while at school, so folks there know how to handle it. She is REALLY EXCITED. I will look up the nearest big hospital in the unlikely event of some shunt related disaster, and I will plan to NOT text my colleagues every single day to see how G is doing. That is the plan.

We also had some family fun yesterday/Friday--Rosie DESPERATELY wanted to do the Hot Chocolate 5k in Philly. She got Dave to sign us all up at the Half Marathon Expo last September, so without any running or training or anything since Thanksgiving (for me and R-- Dave runs all the time), we went off to Philly. Friday ended up being GORGEOUS after a dismal forecast of rain, so we ran to the Philly Zoo for a few hours- our first trip there since spring of 2004, when we brought the kids because we had NEVER BEEN TO PHILLY. Oh, the irony, come September 2004. But anyway, we had a great time, the zoo is super easy when your kids are big. :) The animals all seemed happy, the weather was gorgeous, it was a great day. The only animal G could not see right away was the Hippo, it took about 5 minutes, many pictures with my phone, lots of pointing, and the Hippo finally twirling his ears for G to see it. But that's not bad, considering how things sometimes blend in with the background. And the rest of us had fun at the 5k on Saturday; despite some rain, we got fondue at the end, which we shared with the non-running G (proud of her for waiting for us, she was nervous about that). We realized we are BIG fans of running for chocolate.

And next Saturday is Friends of Jaclyn Day at RU LAX. We figure since G is graduating this year, and then will be the same age as her big sisters, this really is her last time of this. This moment is the poster event for Bittersweet. Yay! G will be graduating! A win on a mind-blowingly Escher-esque number of levels-- And boohoo--RU LAX has been such a part of our life since 2008. Even if G is too old to be a little sister after this year, we are forever committed to this amazing organization (led by Coach Laura Brand-Sias, who LEADS her team both in the sport and in the life lessons of being strong, awesome women).

So many positive things are on the horizon - - and so is MRI day, which is in just about 4 weeks. This is only our second time in recent memory making it to 6 months, and with the other health issues of recent days, AND the upcoming long awaited and never promised graduation getting close - - sigh. I am glad I stocked up on Cadbury eggs. We just have to hold on to hope. That is all we can do.

In the meantime, I have to make G a spectacular gown for her graduation banquet (the fancy fest in lieu of prom), we couldn’t find anything spectacular enough (translated: hot pink and sparkly--although I did talk her out of the metallic silver and pink zebra print chiffon), so I have to dig out my sewing machine and go back to my days of sewing dresses for G. She is pretty psyched about the material we got, and I am kind of pumped to try and get back into sewing again.

Making it to graduation is such a victory--I really wasn’t sure, based on how bad things were in 2012, what this season would look like. I am really, really grateful and stoked to have the privilege of losing my mind over this pink sparklefest for G. I am so lucky. Truly, a thousand times over, we are so lucky. The last 2 months have brought that to mind in a whole new way. We are so lucky.

Peace,
k

Friday, March 11, 2016 4:49 PM CST

Hi, all.

Thanks to all who came out and supported our efforts at the Coffeehouse. Preliminary numbers are around $5,000 raised for the Children’s Tumor Foundation. Thank you so, so much for helping us in our efforts to get some research DONE. The night went really smoothly, and we are so grateful to all our performers, donors, and guests.

Hopefully this year I will get thank yous out before May.

Yergh.

So far that does not seem all that likely. . .

Genna has had a bad cough since the end of January. At first it was just a cough, kind of annoying. And, full disclosure, as a long time oncology mom, unless there is major fever or weird neurological symptoms, we don’t freak out about a cough. Until Thursday 3 weeks ago—G had a coughing fit and started wheezing, it sounded like she could not get air in. My mom kind of accidentally called 911 (long story), but G caught her breath after about 30 or 45 seconds. It was pretty scary, I called our pediatrician, they advised that since she seemed fine, we could just go into the office the next morning.

We trot off to the doc the next day, G seems fine, the doc says G is wheezing, puts her on 17 meds, nebulizer, yadda yadda. We have to follow up 2 days later, and then again 2 days after that. We do all the things they recommend, I get a humidifier, we prop up G on pillows, I wonk on her back 2x a day, but still she has these terrifying coughing spells where she makes this horrible wheezing moan and can’t get air in. . . usually at 3 a.m., which is super awesome. I legit can go from asleep to running in under 3 seconds. No joke.

The docs keep telling us it’s a bad cold, maybe she is panicking and can’t catch her breath, there’s a lot going around. . . at G’s last follow up (that would be visit #4) her lungs are declared clear, she is good to go. BUT WHAT ABOUT THE SCARY COUGHING MOANING WHEEZE THING???? It is probably just viral, it will run its course, there’s a lot going around. . .

Yeah, we were going around. In circles.

Sigh.

G continued to have scarier episodes of coughing/not getting air in. On Sunday she was at a diner with a friend and had a spell—the diner called 911. It’s not just us who find this terrifying, apparently. Police checked her out, she assured them she was fine, and then she was happy because the diner comped her burger. Only G. . .

On Tuesday morning I had had it. On the advice of G’s neuro-oncologist (yes, I was nervous enough I bothered poor Dr. B) I called to try and get an appointment locally with an ENT, figuring if it’s her throat (which it sounds like) they could help. Receptionist set us up with a pulmonologist (not sure how that transpired), but the appointment is next Tuesday. I nearly keeled over with despair.

Work was hard that day. And THEN Dave texted me. He had been researching, and he thought G might have whooping cough.

MY VACCINATED CHILD.

Ok, so this kind of put me into a panic, especially knowing that we did not have an appointment for another week.

Tuesday night, 5 minutes after I got home from my day/chauffeuring/etc, G had the mother of all coughing fits, and turned blue. She raced upstairs to the shower, I guess she thought the steam would help- - I was running after her, somehow I had the presence of mind to grab my phone, I tried to record what she was doing, but somehow screwed it up. She got to the bathroom, but not before my poor R was totally freaked out seeing her sister turn blue, she ran downstairs screaming that we needed Grandpa (from next door). . . G caught her breath, but 3 minutes later she started coughing again. Within about 2 cough/whoops she was blue. I did record that (mostly you hear the shower and me crying and saying I am sorry for recording her). . . and then called 911.

This was really, really not a good day. Seeing my poor G. . .

Breathing stuff is no joke.

EMTs came, they were really respectful of what I had to say (since of course in about a minute G was ok).

Paramedics came, since G was still having some trouble when the EMTs were there, but then she was fine. Paramedics saw no real issue (although the one kept asking me about brainstem tumor. No. No no no), but EMTs were willing to take G to the hospital. We opted for a new ER (G’s appendix experience soured us on our local place), G got to ride like Miss America. The stretcher was so high when we unloaded from the ambulance, G could high five all the door jambs in the hospital, which is a most excellent way to be taken seriously as you enter a hospital.

Silly/sad note, Andrew texted when we were en route, a friend had driven by our street and seen all the hubbub and texted him that ambulances and police were at our house. Eek. We sent him a pic of G giving a thumbs up to let him know that things were under control.

Long story. . . well, shorter, the resident and then attending both listened to us and totally heard us. For the first time, someone agreed that this was not just a cough. From our story, the chronology, and my 10 second video, the docs decided G has pertussis like syndrome, aka whooping cough for vaccinated kids. The 100 day cough.

We were so relieved to be heard, and have an answer, but somewhat despairing. G cannot do 100 days of this. There is NO REAL TREATMENT for this. Hello. That is way not acceptable, but unfortunately true. BUT the attending did think of this weird medicine that could sort of numb G’s throat to help the spasms lessen, and with that bit of hopefulness, and the knowledge that we were heard and that this would not kill G (she was really afraid), we were discharged and got home around 2:30 a.m.

I kept everyone home on Wednesday.

This one has been really hard. My brain is having a really, really hard time with this. G is doing a thousand times better, the Tessalon has helped so much, she has only had 3 or so episodes since Wednesday and they’ve been far less severe. The ER doc said she should be on the upswing, and that is our hope. Still . . .

This really rattled me. It’s been a rough month or so in other areas with G (she is fine), this just about put me over the edge, a short trip, admittedly, but. . . yeah. Seeing her turn blue, tears streaming down her face, pounding her own chest to try and get air in. . .

I am not feeling super zen remembering that.

Side note, this kills babies. Protect your babies. I get that for older teens, etc., the vaccine can wear off. We did what we could to protect G. But this would kill a baby, and it is horrible, horrible to watch. Please vaccinate your babies. G’s version is apparently MILD. She was turning blue, and this is mild?—and it’s only this mild because she had the vaccine. Sigh.

G is super tired, but not contagious, and determined to do her thing. Tomorrow we are going to look for a senior banquet/graduation fandango of a dress (I think she hopes for some kind of hot pink animal print quincenera dress; and you know what, if that is what she wants, SO LET IT BE DONE).

ER doc said she should be fine for her MRI, which is the first week of May, right before she graduates from high school.

So, if you can spare a prayer for G-bone, we appreciate it. The medicine has helped her SO MUCH, which is a huge blessing—we know we are lucky in how well it’s working. Please pray she shakes this fast.

Just need her to catch a break, you know?

And again, thank you. I am on facebook, and thus terrible about updating here. . . but thank you to the folks who still wander over. We are so grateful.

Need to go clean something, my piles have piles.

Peace, and get your tdap booster,
k

Monday, February 15, 2016 7:31 PM CST

In a shocking turn of events—two updates in a single week!!!

Ok, that is only because I promised a post scan update. Rosiebud is stable—optic glioma and plexiform both look totally stable. The other weird spot looks stable-y weird. We were to Philly, MRId, resulted, and back in about 10 hours, which is a new world record.

Phew.

So we have a 6 month reprieve—after a somewhat hilarious exchange with our doctor about when 12 months could happen (I said nothing. DAVE said no way, and Dr B laughed, she had hesitated when filling in the orders and ultimately put 6 months because she knew that We are Us—I commended her on the valiant effort, and pointed out that it was DAVE who protested. Heehee. In all seriousness, need to get through another year or two of stability before a year can be reality, and Dr. B agreed with our reasoning). I so love our doctor.

Rosie is such a tough cookie, she did a great job today.

The new scanners are a bit sleeker than the old ones, and faster. R could hear her music, and I had a wheelchair to sit in (don’t ask). . . it was all good. AND we got home before the ice started, the snow wasn’t too bad until we were 10 minutes from home.

Thank you all for praying for us.

We will follow up with an audiogram in a few months because of R’s hearing situation (related to the plexiform), just so we have a more recent version of stuff for high school. EEK. My baby is going to high school . . .

R has been exhausted since we got home, and we did NOT Lent today (bring out the brownies, people!), but hopefully we can bounce back into things tomorrow.

Finally—in 2.5 weeks (ish), on March 5, we will have our 11th Coffeehouse for a Cure for NF at St. Mary’s Church in Watchung, NJ. The night is a lot of fun—we have some great raffles, some great acts planned, and yes, I better start baking soon! If anyone is in the area, we’d love to have you join us. All the money raised goes to the Children’s Tumor Foundation to keep researching for a cure for NF.

I am so tired. My mind is so weary. It’s weird, the new oncology clinic has no history for us, so my anxiety there tends to be so much less (so far). We have no bad news there. It is interesting to me how my brain reacts to that lack of history. The snow heebie jeebied me out more, since the only time we ever drove home in the snow was after one of our very worst scans ever, in January of 2006, right before our first ever Concert for a Cure. That was in my mind a bit today, I can’t lie.

But we are good. Back to wrapping raffles and thinking about paper goods, no back to CHOP until the end of April or the beginning of May for G’s MRI (and R’s audio test).

Phew.
Peace,

Friday, February 12, 2016 7:04 PM CST

Hi, all.

Um, Happy New Year? And almost Coffeehouse time?

Eek.

I am the worst in the world at updating. I put things on our G-foRce! Page on Facebook and then forget I haven’t put a paragraph here. Things have been busy but uneventful, really, so that is good, right?

The last month has been all Rosie for CHOP stuff. She had a stable eyeball check (woo) and two weeks later we followed up on something that had been bothering her, which is benign, thankfully. Monday is Rosie’s scan day and neuro-oncology follow up. We have been doing an every 2 weeks thing at CHOP, which strangely enough I did not miss. But things have been good, so I cannot complain. I hope things are ok on Monday. And yes, I did try to get all 3 appointments on the same day. Did not even get the same month, but it’s all good.

Meh.

We just had our History Fair at school, and both girls received awards for creating Projects of Excellence (aka they were one of the top projects in their respective divisions-Rosie made a website and G made an exhibit). I am proud of their hard work. . . and glad that things are mostly done, since I have a pathological need to NOT LET ANYONE STOP WORKING UNTIL IT IS DONE TO PSYCHO TEACHER STANDARD. Ahem. They survived me. ;) R is doing the regional contest this year, I let G off the hook for that (in honor of her being a senior. . . and in the interest of mental peace). I still have grading to do (I am not involved with judging, but still have to grade for 52 students), but then I am all Coffeehouse all the time.

Our Coffeehouse for a Cure for NF is on Saturday, March 5, 2016 .

This may be our last one for a while, since G is graduating and we just aren’t sure if we should continue. . .I am so weary. But we need to keep working for a cure, so I am sure we will be doing SOMETHING. We have some nice raffles, some great singers coming to help us out, and I am almost ready to start baking/freezing cookies. If you are in the area of St. Mary’s Stony Hill in Watchung, NJ, some on over!

Phew. I know this is an anemic update. Work has kind of flattened me, and stuff has just been. . .stuff. But G is doing well, getting excited about graduating. One more scan I have to set up before graduation, which gives me some trepidation, but it is what it is. I was going to follow up on something after her last scan and did not—I just decided not to, our doc was not super concerned and I ultimately just wanted to not be concerned. But now that the scan is starting to lurk on the distant horizon. . . meh. I will try to update here again after Rosie’s scan. I think things are ok right now, but we are getting to a precarious age.

As a side note, I had my first root canal this week. The science of it was so cool, and I was super relieved that the weird symptoms I had been having were just a 34 year old filling cracking my tooth a bit, NOT a horrible disease. In a silly moment, the doc told me I must have some sort of autonomic response to shift my head to the right when he was taking xrays…I told him (once I wasn’t all full of xray mouth) that I was actually trying to see the films on the screen, I needed to see the pictures. . . once an oncology mom, always an oncology mom. . .

Anyway, prayers for Monday are super appreciated, that day always stinks. Even a good day looking at tumors is kind of not super awesome, in context.

And if anyone is around on March 5, we would love to see you at the Coffeehouse!

Peace,
K the Worst Updater in the Universe

Friday, December 4, 2015 9:25 PM CST

Happy Advent, all.

And Thanksgiving, and Halloween, and Labor Day…

ack.

So at the beginning of November G had an MRI—and it was totally stable. First time we made it to 6 months, and she was totally stable. One tiny thing I need to follow up on, but the tumors were totally stable.

And a happy day to all.

The new hospital building was quite a fandango. I almost didn’t have massive waiting for appointment anxiety because the space didn’t feel like the hospital. Weird.

G is doing well. She went and visited the county college and felt really excited, her class has its big yearbook fundraiser tomorrow (ok, that has been stressful, but I am glad that she is involved). She is enjoying youth group and art classes, and generally senior year has been less academically stressful. I am so grateful that we are in this place. I still kind of can’t believe it.

Even as I am totally swamped (hence no update for months), I am grateful. G gets to go back in another 6 months. Rosie will have a bunch of appointments in February, but I have not set those up yet. Trying to get 4 appointments at the same time is daunting. School and the graduate course I am taking (only one more week!) are collectively whomping me.

Dave ran the Philly half marathon, this year moved to Halloween because of the papal visit in September. It was a great day, my sister Elizabeth ran, too (her first half). Thanks to all who supported their efforts for CTF.

I am not sure if I mentioned the 10k I ran…it was the hardest race I ever did. Yes. 10k. I didn’t quite get how TRAIL the trail run was, I figured park trails, this was all roots and rocks and hills and I fell twice. I still have scars on my legs, hip, and face. I got WAY UP CLOSE AND PERSONAL WITH THE TRAIL. Twice. Ow. I earned my medal for that one. Thank you to the folks who supported my fundraising on this one. I literally bled for this one—actually SAID, “merely a flesh wound!” to a police officer who asked if I was ok after fall #2. But hey, if it funds a cure, it’s all good.

Things are crazy busy now, but for the first time in ages we really have no medical stuff in December…or January. Egads. That’s a good time had by all. I am hoping that we can have some moments as a family in the next month, to not let life just gallop away with us.

So apologies for never updating. I do put updates on facebook, putting together multiple sentences just is a lot sometimes. That is pitiful, I know, but true.

Peace to all in this holiday season—and please pray for so many of our friends, Gabbie, Emma, Amie, Tommy—Mike -- just so many more, so very many.
Peace,
k

Sunday, August 30, 2015 7:59 PM CDT

Howdy, all.

Summer has been insanity, a lot of wonderful things, some stressful things, just busy out the wazoo. Today is just a super fast moment of update before I go into full bore Last Week Before School Panic tomorrow. I am so not ready. Just so not ready. Even with the stuff I have done, I am not ready.

But first things first: last week Rosie had a stable scan. Scan day was tough. Really tough. The scan takes about 2 hours, and R was doing great, and then something in the head gear thing was hurting her, she tried to tough it out but ultimately they had to pull her out for a minute and try to fix things, but she was being so quiet and trying NOT to express her pain. . . that kind of flattened my mom brain. I really hate being by the MRI machine, that Siemens Magnetom. I hate it. Not like it is the machine’s fault that my kids have brain tumors, but it is an easy target for maternal venom.

ANYWAY, I digress: everything was rock solid stable. Rosie is so tough. We are so relieved. Beyond relieved. Another 6 month reprieve, and I really have to make that orthodontist call for Rosie now.

We did ask again about another NF thing for R, our doc sent us for a test to check it out, and while benign, (truly, not like “benign” brain tumors which are anything but), we do have another issue that we need to keep an eye on. I just don’t feel like adding more details now. We will see another doctor at Rosie’s next MRI day to discuss, but I am not super concerned at this point. Our doc wasn’t, so I am not. It will just poke at the back of my mind now. For now, that will have to do.

In other news. . .

Today marks 11 years since Genna was diagnosed.

11. Years.

Today G Had a Plan For Celebration involving fresh mozzarella from A&S (her buddies there were quite happy for her today) and pizza from Ciros. We went to Mass, and then played a round of mini-golf (sweltering, but a good time), G kind of melted in more ways than one, she just cannot handle the heat at all, she took a nap at home while the rest of us ate frozen treats (she just wanted to sleep), Dave took the girls to the pool while I did a quick yoga for runners workout (my left quad hates that I ran 5 miles yesterday and forgot to stretch. Or eat. Or anything) . . .now she is watching an America’s Got Talent that she missed. She is LIVING today. LIVING.

11 years ago I could not see today. Today was not even a glimmer.

11 years ago today was one of the very darkest days of my life.

11 years ago today we were so afraid. David and I were so afraid.

11 years ago today my kids were 9, 6, and 2. Now they are, well, 11 years older than that. I feel like that chapter of our lives is so long ago . . .but the legacy of G’s early treatments and relentless tumor progression stays with us today.

11 years ago today I was so young. Already not all that naturally brunette, but gosh I was young. I don’t normally feel old now, physically I feel no different than I did years ago, but mentally and emotionally I am a wizened old crone.

11 years ago today our future was so dark. Black. Pitch black.

TODAY my G is owning her survivorship day. She has challenges. She does. I do worry for her future. But 11 years ago today I thought we would never SEE the 1 year mark, let alone the 11 year mark. Today is a victory.

We are battle weary. We are a lot lonelier now than we were 11 years ago, walking this path for so long has made it very hard for us to find our way in the paths we used to walk. We just don’t fit anymore. But we are so grateful for the people who carried us through all these years. . .especially our doctors, Dr. Storm (the first person we met at CHOP), Dr. Jean Belasco, who has so expertly and compassionately led us through the last 11 years, Dr. Liu who has cared for G’s eyes since the first day we brought a weepy post shunt surgery 6 year old into his office. So many nurses, and other CHOP staff have so been there for us, for G.

Our families: our families are everything to us. Everything. Dave and I both come from massive families, and both of our sets of parents have been there for us every second. G loves all of our siblings so much. We love you all.

To the very few old friends who don’t steel yourselves when you see us coming—thanks. Just—thanks. We so appreciate sometimes just being able to NOT think about this overarching context of our lives. You help us do that.

In 11 years, the people in our neighborhood have made about 47,000 meals for us. These people, friends to us (and really close friends to my parents) have never wavered in their support of us, even when I hide from everyone. To the people of Mary Street, I thank you. Your kindness and love for my G has been a major reason that we stayed here long past when we thought we would. She loves her neighbors, and not just because you fed us all so much over the years. You help her feel like she belongs somewhere. You smile and wave to her. You text her pictures of your cute babies. You chat with her when she is walking the dog. You make her feel loved. Thank you.

Sigh. I was doing so well just going with the celebratory vibe today. But remembering is important. I am just choosing not to focus so much on the terror of that day. I just can’t let myself do that this year. I have to not do that.

In 11 years, we have met so many mighty, mighty people. Our hearts have broken for so many families who walk for a while alongside us and then find healing only beyond this life. It is a tough club to hang out in, the brain tumor/ nf club. We speak a common language, we live and die by each other’s scan days, we rejoice with good news and feel crushed with bad news for ANY child in this community.
Some days it is very hard to bear, in 11 years we know so many people—for something so “rare”, we know So. Many. People. Who suffer and fight and live and laugh and love. But our friends in this community keep us going. The constant support is indescribable. AND it is good to have that kind of weird niche audience for my now much darker brand of humor. Day hospital jokes are only funny in some circles. Thank you for being our circle.

11 years is a miracle for us, and a victory, and while everything in life overwhelms me most of the time, today is a day for hooray.

Yesterday we had the opportunity to go to the soup kitchen our church helps sponsor. We go 4 or 5 times a year if possible, I wish we could go more. Genna jumps right in prepping food, chatting with the other volunteers, working. . .when it is time to serve the clients, she likes to give out the drinks, her cheerful “Here you go!” to each person and “you are very welcome!” to every thank you is a bright ray of sunshine. She is awesome. Yes, she still needed to rest when she got home. Her energy levels will never be great- but she can do things. She can help others. She can make people smile. And you know, even 11 years ago the kid could do that.

I am so proud of my G. So proud of this mighty, loving girl, even on days when she goes all normal teen on me- - I LOVE those days. I love those days, because 11 years ago, having a teen freakout did not seem like it could be possible.

11 years. Not sure how we made it here, but so grateful we have.

Peace out, all.
k

Sunday, July 12, 2015 12:03 AM CDT

Howdy, all, happy July.

I realized that I have not updated in ages, and quite honestly, no news tends to be good news for us here at the Casa Camiolo.

Summer is finally in full swing. I am still recovering a bit from school - - my piles still have piles. But I am trying to get my game face on so I can be less stressed out in the coming year, even if I do take the grad course I hope to sign up for. That tends to tip the stress a bit, but I would love to do it. After bringing some students to the National History Day contest in Maryland in June, I am pretty pumped about teaching history (even more than usual). 

Genna has already slogged through the first of her summer reading books, 8.5 hours of A Brave New World on audio book. She plays the audio on her phone while using the Bookshare large print version on the iPad. THEN she follows up with reviewing the Cliff Notes for each chapter. It is a WORK. She is so tenacious. She hopes to get the paper for that book done this week.

We also hope to get her to a tour of Raritan Valley Community College in the next few weeks. She is EXTREMELY excited to go there, and honestly, I think it will be the best fit for her. Genna is mighty. The challenges that come along with brain tumors are no small thing in terms of learning. I sometimes wonder if I am making mountains out of molehills, and then I get smacked upside the head with reminders that No, This Ugh is Real. But G has dreams. She has tenacity. She WILL do great.

She very much wants to get a certificate in early childhood education, maybe a secondary certificate in special ed, so she can be a one on one aid for a child with learning issues.

THAT is my G.

And with the summer off from major medical for her, the schedule is way more open. Eyeballs have to get checked in a couple of weeks, but I’m not inordinately worried about that, really, since her scan was stable.

You know, on my first pass through here I did not type “famous last words”. I hope you are impressed by my almost optimistic attempt at restraint. Ahem.

At least we got vacation this year. Granted, the weather was not super awesome. Understatement. Good thing I pack multiple sweatshirts any time I go anywhere. But we got to go. So woo. Beats a blown appendix any day.

Rosie did her week at circus camp. I cannot speak highly enough of Circus Place and the amazing things they do there. It is the most collaborative, positive place in the world. Bonus, Rosie got to be an Evil Robot, a long time hope of mine for all of my children. She had so much fun, and she FELT HEARD. In her normal social situations (at school), Rosie never, ever feels heard--she is told she is weird, etc. At circus, her words and ideas are valued. WIN!

She has a week at church camp (probably her last year) and then she and Genna will go to Ronald McDonald Camp (oncology) in August. Busy times, good stuff, but busy.
Rosie scans at the end of August, right after onco camp. I am not feeling great about that. So many of our friends have had bad news recently. So. Many. It is hard to stay positive when we are hurting for so many of our friends. And Sandy’s anniversary was the beginning of July. NF is no joke.

But we have a lot of sunny days left this summer, a lot of fun moments planned. I am trying to embrace the sunshine, not spend the day sorting papers in my basement office, and do things with my girls that are NOT just “let’s get this house clean already!”. Hopefully this week we can finally just chill, since I won’t be driving to circus every day.

So this is a non-update kind of update. Andrew is busy, Dave is busy, life is busy. But today at least, we are in the almost-zen of stable time. Even if I am not good at being normal, I do not want to miss THIS moment by worrying about the next.

On that note, I may carpe diem some gelato or something. 
Thank you all for thinking of my girls, and for all your support. We are so grateful.

Peace,
K

Tuesday, May 5, 2015 11:01 PM CDT

I am the worst updater in the history of Caringbridge updaters. I embrace this, but I am sorry. I know a lot of folks follow us on Facebook, and there I don’t have to come up with coherent or semi-coherent paragraphs.

May is NF AND Brain tumor awareness month. Woo. Definitely aware.

Short version of the last 2 months: G scanned yesterday, and it was stable. Legit stable. Mom stable.

The only odd moment was the observation of a small low grade glioma that neither Dave nor I remembered. . . it was on a prior scan, but. . .??? HOW DO YOU FORGET A BRAIN TUMOR? Or, you know you have too many tumors WHEN...But our doc said, “It’s a ditzle!” ie super tiny and it seems to not be all up in the middle of the brain’s business like G’s other tumors, so we will ignore it. But really. HOW do you miss that?

In another weird moment, this time the radiologist measured at least one of G’s tumors. I don’t have the report yet (long story) but we NEVER see numbers. Bizarre. It was that kind of day.

Probably because for the first time in 10 years, I forgot to set up the oncology follow up for yesterday. It is a long story, mostly centered around the fact that for a day or so after scan day I should do nothing meaningful, certainly nothing involving scheduling of anything oncology related. But our doctor is a goddess and really very generously squished us in at the end of her day—I had a panic attack about this most of Friday, when it occurred to me that I had not written down the time of our non-existent appointment, mostly because an appointment has to exist for its time to be written. . . ugh.

So grateful that Dr. B fit us in. And since it was the end of the day. . . literally empty clinic . . . G was a bit more awake.

The sedation thing yesterday was a bit stressful. One stick
(hooray!), at least one new joke after versed (phew! Of course sick alligator returned, but . . .yeah); but the scan ran long. We know exactly how long it should be, and once 15 minutes PAST that time happens, I start to pace or stand by the door of our room. And then I heard them call for a doc for scanner one, it was quietly said but I HAVE TEACHER EARS, PEOPLE! I knew which scanner my kid was in. Not an emergency, but they needed a doc. I was waiting for the doctor when she got back, I am sure she was overjoyed to have me all up in her face all barely contained anxiety in a sparkly END NF t-shirt. G just woke up and they needed to make some medication decisions—hence the call.

Yet another reason I am no longer naturally brunette.

The speck of thyroid medicine G started in January seems to have evened things out (if only everything in life was fixed by so tiny a pill, taken before breakfast), and we got the ok to go to 6 months for her next scan if Genna is comfortable with that (Dr. B offered her 4 months so she could come right BEFORE school instead of mid semester - - we have THAT kind of doctor). G is thinking she might be able to manage 6.

Since August of 2004, we have made it to 6 months between scans for Genna exactly One Time.

I have been psyching myself up for this possibility, the sort of creeping dread that accompanies this kind of good thing is hard to explain.

But it is a huzzah, really.

G did well at our state history Day competition, she was very pleased with her interview (“they told me I did a wonderful job!” she said) and she was ECSTATIC to NOT advance past states. For the first time our school does have a National Qualifier, so I will be heading to Maryland in June with a couple of 8th graders to celebrate History Day!  This is a really big deal for us.

G is also preparing for SATs and her senior trip (she is a junior, but the trip is after the seniors graduate so. . . yeah). She is excited. We also are looking into what community college needs in terms of documentation for G to get some assistance with things. She really wants to get a certificate in Early Childhood Education from our community college . . .

I have not yet formulated a coherent thought about that. Especially in the road-kill-haze the day after scan day, that just makes me remember some really, really tough times over the years where this was not even something we could ponder. Not so long ago times, really.

But today is good. Today is hooray. And G is happy.

And it is nearly midnight, but I realized I hadn’t updated and felt remorseful. I also have not sent Coffeehouse thank yous yet (very remorseful) and we are out of milk (not remorseful, I told everyone I would get to Costco tomorrow).

Thank you all for praying for G. We are hopeful that maybe this is a good run for her…we are almost at 2 years off chemo, chemo #5. Maybe she can stay stable longer, and let science get a move on things already.

Next up, Rosie scans in August some time. I have to call to schedule that. . .

BUT NOT until we are a few days out from this one. Eek.

Peace,
k

Friday, March 6, 2015 1:35 PM CST

Sigh, how has it been TWO MONTHS since I updated?

With winter and work and Rosie’s scan day and our school History Fair (for which I have kind of a lot of responsibility) and then our Coffeehouse—the 10th!—I just have not had any mental energy to update. But things are rolling along…

Rosie’s scan was really stable. We were very relieved, as we were both pretty worried about this one, Dave & I. Rosie is getting to an age where NF tends to go a little berserk. We have a lot of apprehension about what is to come, but for now things are stable.

Of course the report did not exactly SAY IT LIKE THAT. I know our doc talked us through it and we got to stable, but not every word gave that message. So we are just going to keep chugging along, running to circus classes (R’s happy place) and the library (her other happy place) and living life until the next scan in July or August.

Ergh.

But yay, too.

Both girls got awards at our History Fair (mom won’t let them stop until the projects are GOOD); G is going to compete at the Regional competition tomorrow, Rosie could not get her website done by the (early) deadline, she wishes she had, as there is little middle school individual website competition. Maybe next year.

G had a super special treat sponsored by Joy Juice and Ronald McDonald Camp, she had a makeover day—to see her look grown up was very surreal. Just. . . in context. . .really surreal.

In a good way, but the BT moms there were definitely feeling that moment for our girls. Nothing is promised us. Everything is a blessing.

Our Coffeehouse was one of our best years ever, $5600 raised that night, we had 20 more raffles than usual, which is astounding. The music was great (funny, the first 3 or 4 acts were all Christian songs, which just happened, but it was nice), the cookies were pretty tasty, and folks seemed to have a great time. Special thanks to everyone who donated things—I know I shout out to folks on Facebook, but not everyone reads there (we have a page called G-foRce! CURE NF! , come join us!), and we are so grateful. We just have so much to be grateful for, so many people who literally have carried us since 2004. It’s unreal.

We are also grateful that people show up at this event, we are always really nervous (well, one of us is) that nobody will come. So thank you for coming, peoples! Especially our NF friends, (and surprise NF friends!), and Angela from CTF, our first time having someone from CTF come…and our Camp Sunshine friends who nearly shocked me into next week. Thank you all.

Philly just found a date for the half marathon, Halloween—so our fundraising from this event will go towards that. I am NOT running this year, especially with the later date I know I will not get the necessary training in, once school starts I am swamped, but I am happy to be support crew for Dave. I am really good at cheering, actually far better at cheering than I am at actually running.

The next several weeks are so busy: RU LAX goings on, maybe some baseball once Andrew’s games come north again: he is getting some innings this year in relief and doing pretty well, we are glad (and he came in in relief of Mariano Rivera Jr. last week, which looked pretty cool on the written out play by play!), a trip to Great Wolf Lodge with the girls (our annual celebration of G’s Make a Wish, we realized having a little trip to look forward to in the winter is really awesome), no medical stuff until the first week of May. EGADS. No CHOP until May?

Honestly, I am ok with that.

G has her choir tour in a few weeks, she is very excited about that, and then her junior trip to North Carolina at the end of the year, and hopefully an attempt at the SATs.

Three years ago I did not know if I would get to type that last sentence.

We are so grateful.

Thank you to all for all of your support. This road is so very long, and we are so grateful to all of you for not running the other way when you see us coming. At least not every time you see us coming. ; )

Peace,
k

Tuesday, January 6, 2015 8:08 PM CST

STABLE.
G’s scan was truly rock solid stable.

Relief is the word of the day.

Waiting for results over the weekend was epically not fun (and the understatement of the century award goes to Kristin!), but I am glad G got to see Dr. B NOT post-sedation. Dave rearranged his work schedule so he could come—we lost a brain tumor friend very unexpectedly over the weekend, and I think Dave was concerned that bad scan results might put me over the edge (a reasonable assumption), so he came along. I am glad. G told a few awful jokes, kvetched about school, showed Dr. B some of the 1850s CHOP reports G found at the archive, and then left so as not to see the scan pictures. We had friends in clinic yesterday, I don’t blame her, she wanted to do crafts.

Dr. B was really happy about how the scan looks. Comparing it to the mother of all bad scans from May of 2012 is always a little sobering (I can’t even. . .), but today nothing has gotten bigger. So today, we say huzzah.

There is a small endocrine issue we need to deal with, that’s a new thing, but not a big deal, and pretty normal for kids with tumor in the area where G has had the most issues. What’s a pill a day among friends?

Thank you all for praying for G, and for all of us. The unrelenting pressure of living with this becomes overwhelming in scan time. You’d think I’d be two dimensional by now, this feels so flattening sometimes, but my penchant for Cadbury keeps me quite 3D.

It was the feast of St. John Neumann yesterday, which I forgot. . . we have visited his church/shrine in Philly a few times, as a local saint we have bugged him a fair amount about G over the years. I think it is cool that our day of good news was his special day.

There’s a funny (well, now, 10 years later) story about a saint I used to pray to a lot for G, before G got sick, and I was SO MAD at St. Teresia Benedicta of the Cross I wouldn’t even speak to her for years.

I know, I will not win any prizes for spiritual maturity or theology any time soon, but dang I was so mad at her. Now it seems funny to me. I mean, she’s not exactly AROUND for me to be mad at. But. . .yes.

The first months after G’s diagnosis were not my most rational, I know.

In a side note, we found out today that Rosie needs glasses to see the board at school. I a) nearly got verklempt in the eye doc’s office b) then was nearly giddy with chattery delight and c) WAS SO FLIPPING RELIEVED. While Rosie is past the age where optic glioma tends to impair vision, she has NF and other brain stuff and full oncomom freakout is never more than one headache or “hey, mom, I can’t read the tv screen” away. We are so thrilled that this is normal kid nearsightedness. SO relieved. New stuff is never cool.
Way, WAY happy about that. Now when Rosie goes to her neuro-eye check (with G) in a few weeks I can be less in freakout mode. R’s scan is February 3, and I am worried about that already because of some stuff, but I am almost too busy now to let those thoughts be more than just nagging corners of yikes in my mind.

Dave is Polar Plunging for Camp Sunshine on February 7, and we are gearing up for our Coffeehouse for a Cure for NF on 2/28. We are starting to get some very festive raffle items. . . just today G’s FAVORITE American Idol winner/country singer sent an autographed picture (her world is complete), and Grandma Appert donated stuff for TWO wonderful Bath and Bodyworks Baskets. Rosie and her cousin have already been planning Their Grand Production Number. A good time will hopefully be had by all.

If anyone has any large fabulous thing (or small fabulous thing) you’d like to donate as a raffle, we are super appreciative. This year I hope to make a Board of Thanks for everyone who donates. . . we so could not do this without you all.

So—that is that , for now. School is crazy right now, G is stressed, but our reprieve continues, and I am grateful. We need to make the most we can of this time. Live. Laugh. Love. Hope.

Peace,
Kristin

And please pray for the Hebberd family, who lost Peter this weekend. He was such an awesome kid. . .

Saturday, December 27, 2014 2:38 PM CST

Merry Christmas and Happy New Year from the G-foRce!

I had such great ambitions about writing a lovely Thanksgiving message, to express our gratitude for all of you and all you have meant to our family . . . gratitude for good health for my girls right now, gratitude that Andrew is doing well at college, gratitude that we have a dog, jobs, etc.

I had such great plans.

After I run any race, I feel so drained, not in a bad way, necessarily, just really drained, like a tub with only a little water left, or a balloon that’s kind of been hiding behind the couch for 2 months since the party. Somehow, after 10 years in this brain tumor journey, I am just weary, drained and deflated. Not necessarily in a sad way, just tired. We have had a good few months here, and I am so grateful—I just can never, ever escape the reality of things, the special needs we live with here because we are blessed with survivorship to this point.

And when I get like that, I have a lot of trouble finding words to write here.

Rosie had the legit flu several weeks ago (she got it before her flu shot took effect—luckily G and I, who got our shots the same day, were ok), that kind of flattened everything here for a bit, I missed nearly a week of work, Rosie missed nearly a week of school, she has never been that sick. Thankfully she is fully recovered now. But holy cow, that is one nasty bug, ol’ influenza.

ANYWAY, we are so grateful for the respite G has had. Her MRI is Friday, and for the first time in years we will have a few days before we get results. Yes, this is insanity. Yes, I will be climbing the walls here over the weekend. But since G doesn’t see Dr. B that often now, we decided it would be best for G to have a neuro exam when she has NOT just been roused from sedation (although those neuro exams are kind of entertaining to all concerned, even G). G did not want to miss 2 days of school, and because of the holiday scheduling our doc is not in this week. . . so G will scan Friday, and we will get results Monday.

Of course that also means Dave can’t miss 2 days of work after the holiday time off, so G and I will be getting results alone.

You can totally hear the ominous music, right? BUT NO, I AM TOTALLY CONFIDENT THIS WHOLE CONVOLUTED PLAN WILL WORK OUT GREAT.

(*filed under Lies, Lies, and more Lies).

Of course if something is really bad, they won’t let us come home Friday, so. . .yes, there is that. And then G will miss her youth group Christmas Party scheduled for next Saturday, and hell hath no fury like G missing a party. She is STILL mad about missing the school Fun Day back in ’06 because of ear infection/neutropenia/inpatient week at CHOP.

Ergh.

We will be in Philly earlier this week too because I told G I would take her to an archive to do History Day research. She picked an impossible (but cool) topic, the guy who founded CHOP. She just can’t find any primary source information about him. Hopefully the trip to the College of Physicians library will help. G is so tenacious. This kind of project is excruciating (she works very slowly, or impulsively), but she is so tenacious. If she can find the right materials, this project will be epic.

And then. . . on to midterms, and the eye check for both girls on January 22, and then Rosie scans February 3 (which was NOT my plan at all—but due to scheduling snafus, we have to wait until February)—honestly, for a variety of reasons, I am almost as worried about Rosie as I usually am about G. We may make one local doc visit first for R, just to rule out (or hopefully rule in) some normal kid stuff before I go into oncomom freakout mode. THEN she has to get to the orthodontist, some of her teeth just don’t fit—but I needed to wait until after the MRI due to artifact from metal of braces . . .

And then February 10 is History Day at our school, and February 28th is our 10th (TENTH!!!) Coffeehouse for a Cure for NF. Save the date, friends!

THIS is why I wake up at 5:43 a.m. every day worrying.

I am so weary.

That said, oncology /NF stuff aside, we had a really nice Christmas with family. Christmas Day is one of my favorite days of the year. Today is sunny, Rosie is reading her new Harry Potter books, Andrew is watching sporting events on tv (channel surfing multiple events), G is working on History Day. . . everyone is in a nice post holiday spot.

The tree is beautiful, we have 2 million cookies here still, and today, things are good.

Things are good today.

Scan months, and scheduling, and weird pains/symptoms with the kids put me in a bad spot. But truly, today is beautiful, and things are good.

So, that’s about it for now. I have started working on Coffeehouse stuff (if anyone knows anyone who would like to donate a raffle item, we’d be so grateful), and Dave signed up for the Camp Sunshine Polar Plunge (I believe right after Rosie’s MRI?)—if anyone wants to join THAT insanity, he’d love insane company. I hear the beach is lovely in February, last year there was snow when they plunged…ay caramba! Please, if you think of it, pray for G this week—and Rosie – I HOPE to update in a timely manner this time. . . hope springs eternal.

And to all of you—have a happy and blessed New Year!

Monday, October 20, 2014 2:38 PM CDT

Ok, WORST UPDATER EVER.

Sigh.

But usually, with us, no news IS good news. And on September 6, G did have a stable MRI—she got to start her junior year of high school without having to restart chemo.

That, my friends, is what we call a win.

And we survived her 10 year mark. That week was rough. The whole week. Starting school that week was tough for my brain, but honestly, teaching is probably the best sort of thing for my battered maternal brain. I have to do so much thinking, it keeps my brain from thinking about other things.

But so far, Genna is doing really well. She is getting a lot of support (especially from Grandpa, who is her math teacher; he figured out how to scan her entire math book so she can access it in large print on the iPad, he is now helping her do the same for Physics), she is working hard, and so far her stress has been mostly manageable.

This is a challenging year on a lot of levels. This year has a lot of milestones for kids, and some of those G will never reach (she isn’t going to drive, for instance); as we reach some of those moments, where I see how things are for other kids (I teach this age group, so I do see it every day), I find it kind of challenging. G got to go to her first college fair a couple of weeks ago--a huge, huge hooray, we know that this day was WAY not promised us--and then last week she could not take the PSATs because her accommodations request is still under review. Doh.

It’s not a big deal, really, and we’re SO GRATEFUL for every moment, and really most of the time G is pretty chill about things, but it is sometimes a challenge when we have to ponder the fact that G’s path is always uphill and not in the same direction as other kids. But she is on the path, and we are grateful.

See why I put off updating? I don’t even know what my head is doing.

Rosie is chugging through 7th grade, with all the challenges of changing classes and carrying her weight in school books each day. She LOVES her circus classes; I love to see how hard she works at circus, she just loves it. She and Genna will both have their next MRIs in January , after a December eyeball check. We actually have TWO WHOLE MONTHS without being at CHOP, fingers crossed. We haven’t had that long a break since…gosh, since 2011?

And no, I am NOT going to schedule the scans for the same day. G had an issue with sedation last time (long story), we need to have the girls go on different days. So, yes, I will completely lose January. Meh.

I am back working, and taking a graduate course that I think will really help my teaching—I am learning so much. I am SO BUSY, but I am learning so much. Andrew is back at school, Dave is busy with work...life goes on.

Dave and I did successfully run the Philadelphia Rock n Roll half marathon in September; it was REALLY hot and humid, but we got through. Thank you to everyone who supported us…I have to actually ORDER the thank yous I made, but please know that we are so grateful. And I AM SO GLAD THE RACE IS DONE. Amen.

My girls are actually the NF Heroes for the NF Endurance Team’s crew at the New York Marathon this year. We are really honored to be able to encourage the runners who are tackling this epic race. We may try to go into the city to cheer, but I’m not sure if that will be able to happen.

So—that is where things are at with the G-foRce! We are tired (so tired) but trying to make the most of this respite, this time where things are stable. We know too well how precarious stability is (G’s stable scan took a lot of looking over before we were satisfied that it’s ok for now), and I don’t want to miss this season of medical peace in the chaos of every day.

Thank you all for checking in on us—
Peace,
Kristin

Oh, and Dave & I celebrated 20 years of marriage. Yay us. It has been a roller coaster/log flume/spinny ride thing where the floor drops out/haunted house/bungee drop kind of a life, but if I have to go this road I know I am so blessed to scream on down it with Dave. ;)

Friday, August 29, 2014 2:11 PM CDT

Hello, all.

Well, when a dear friend texts to ask if Rosie scanned and if G ever got her appendix out, I realize that I never did actually get past my whatever and update Caringbridge.

Alas. I am sorry. I know there are folks NOT on facebook (where I do put short updates) and I just sometimes get daunted by trying to put all sorts of life into manageable paragraphs. I still wish I knew why that has gotten so difficult…

But yes, Rosie DID scan in July. Overall the scan was stable. There were a few disturbing words around the plexiform part of the report, but our doctor looked through all the images with us, comparing them to past images, and she was not concerned, so I am not being concerned. Ok, that’s an overstatement, I am TRYING to not be concerned, I have managed to avoid full out dread-filled panic and just keep the worry to a nagging feeling in the back of my head. But otherwise things looked great.

Rosie was super busy this summer with circus camp and Camp Sunshine (our family went) and church camp and then oncology camp. Phew! Next week she starts 7th grade. Sigh.

My baby is old.

And two weeks ago Genna finally got her appendix out. We did opt to do the surgery at CHOP, just to be close to our neurosurgery folks should a shunt issue arise. This did add another 2 trips to CHOP (pre-surgery and then the actual operation day), but I really liked the doctor (recommended by Dr. B) and he was so calm – always a good thing when you are as neurotic as I am, you want the surgeon to be the picture of zen. He was able to do the surgery laprascopically (I know that’s not spelled correctly), 3 small incisions, and he told us that the appendix HAD ruptured back in June.

Um, yes.

We are kind of super crazy lucky blessed woo. That could have gone all kinds of bad/ugly/yikes. Thank you to all who prayed for G that week. We are so grateful.

Anyway, G came through surgery great, we mostly kept her pain managed, and less than 24 hours after surgery we were busted out of CHOP and on our way home. Whaaaaat? Insanity. We’ve had eye appointments that took longer than this surgery.

Phew!

After just a few days of recovery, Genna ALSO went to oncology camp, and had a wonderful, wonderful time. That is so her happy place.

G also celebrated her sweet 16 in July. We did have a fest (I have learned my lesson: life is too short. If a fest presents itself, carpe festivus, or something like that). G had a blast, her classmates came (!) and some friends of our family, an amazing group called Icing Smiles made her the most spectacular cake ever seen , all bright animal print sparkliness (this group makes cakes for kids who have been on chemo, etc. as a beautiful gift. We are so grateful), G wore a fancy dress and a sparkly hat and generally had a lovely time.

You see why it is hard to update? I feel like I have not caught my breath all summer. We left the morning after the party for Camp Sunshine, which is the best medicine a family could ever have…just so much love, and laughter, and sharing, and strength, and hope, and a yogurt bar, all in one place. G’s actual birthday happened at Camp, and she experienced SO MUCH LOVE that day, I really have no words.

Sigh.

And then. . .for you calendar watchers. . .

Tomorrow marks 10 years since G was diagnosed with her brain tumors.

In other years I have had so much to say about this.

Anniversaries are huge. August 30, 2004 was literally the day our entire world unraveled. Everything changed that day. Everything.

Half of my married life has been lived in the shadow of that day. Icing Smiles and Camp Sunshine and Ronald McDonald Camp (oncology camp) and Friends of Jaclyn and the CBTF events and NF Endurance and our Coffeehouse and the racing we do and Make a Wish and so many other things all only happened for our family because of that day.

Most of our friends now are in this community of smite; it is so hard to find our place in the regular world after so many, many years in the post 8/30/2004 world.

I am so tired. Trying to be strong for G for so many years is very tiring. Holding on to hope for so long is very tiring. Being afraid for so many years is very tiring.

I have so little tolerance now for certain things, for people who promise easy cures or prevention of the kind of illness my child has, if only we get our back adjusted or eat more veggies. I have zero tolerance for pseudo-science or people selling false hope to vulnerable people. I take that so very personally, after all these years, that insult to our children and our friends whose children have fought and perhaps succumbed to the beast of cancer or brain tumors.

As a coworker told me, I am scary. After 10 years, I kind of have to agree.

That is not to say we haven’t had some amazingly joyful times, of course we have, and we count each of those as a blessing. The shadow of that day is so long, though, it weaves through every day, every minute. Out of the blue things will hit me like a ton of bricks, even this long after that day, because really, that day was only the first awful day, the first awful day of many.

But my G is so mighty. She is so mighty. And Rosie, my baby who literally does not remember life before brain tumors, she is so compassionate, and so. . . deep. Tomorrow is also our day at the soup kitchen in Newark, we go every few months (5th Saturdays), and Rosie said, “it’s good we can help people on that day (the 10 year day), since so many people have helped us.”

Yes. I am not worthy to be mom to these kids.

And my Andrew . . . sigh. Growing up is hard, and he was only 9 when G got sick. . .so much of his growing up is shadowed by this. I pray that he can find good people to encourage him, to help him find a good path. He has a good heart, such a good heart.

Genna is strength. Genna is hope. Genna prevails. She understands now, so much more, what the stakes are—she knows now what we shielded her from in the past. She’s a smart kid. She rarely speaks of it, but she knows. And even in that, the child has such faith. She tells people her favorite verse is “I can do all things in Christ who strengthens me”. She is so strong. I don’t know what G would have been without the last ten years (taller maybe?), but through the last 10 years she has just been a continuous light to us. SHE encourages other folks who are suffering with anxiety like she does. SHE tries to make little kids smile, to give anyone a hug, to share love.

We were not sure we would get to 10 years. In 2006, that seemed impossible. In 2012 things were not heading in a good direction. We are so blessed, and so grateful (a bit of a refrain in this post, right?). We don’t know why we got 10 years. We super hope we get like, 80 more. We are just so grateful for all of you who have stood by us even when we are hard to stand by. We are so grateful for time, time is so precious, so ridiculously precious.

I think I stopped updating here because I cry every time I try to write this stuff down.

We are so grateful, too, to our doctors. Dr. Philip Storm (neurosurgeon). Dr. Jean Belasco, G’s neuro-oncologist and one of the smartest, most compassionate women I have ever met – she has endless patience for me, even after 10 years. Egads. Dr. Grant Liu, G’s neuro-ophthalmologist. These 3 especially have been with us since that first week 10 years ago. All the nurses, so many nurses (Mindy, Pat, and Cindy! Cindy Lou! As we used to chant). . . Sue the art lady, Miss Gina, Dr. Armstrong (neuropsych), Brett Kramer, Merritt Jensen (back in the day, she talked me off some significant ledges in 2006) . . .gosh, how do you even try to thank everyone?

This road can feel so very lonely, but we know, we know that we really don’t walk it alone.

So tomorrow, get some cake. If your family wants to know why, tell them, “what are you , crazy? Just eat the cake, don’t ask questions!”

Ok, no, don’t say that. But tell them that it is a day of
fest. Of survival. Of hope. Of 10 years of walking not alone.

And if you can spare a thought, G has an MRI on Tuesday. I really, REALLY tried to NOT have it be around this weekend. Fail. My head isn’t in a great spot about this, she seems fine (in the context of G), but. . . you know.

And then school begins, and all the stress that entails. . .

AND then in 3 weeks Dave & I are running the Philly Half Marathon for the Children’s Tumor Foundation. 10 years ago I would have told you to stop smoking crack if you told me I would be running my 4th half marathon this year. But I am. And I am trying to raise some $ for research. So I will post the link. I hate doing that on this post, but God only knows when I’ll remember to post again.

http://ctf.kintera.org/faf/donorReg/donorPledge.asp?ievent=1108426&supId=411569088

Oh my gosh this got long.

Enjoy Labor Day weekend, all, and a blest 10 years to you, too.
Peace out,
k

Sunday, June 29, 2014 2:24 PM CDT

Tuesday...

G is doing a thousand times better, the last two days have seen a vast improvement. Sorry that last update is so poorly written, it was just such a bad day. :(. But now her pain is nearly gone, she has been up and about three times today, and the shunt cultures so far are clear. This afternoon the surgeon told us we can bust out tomorrow after g gets the last infusion of antibiotics! Hallelujah!

Hopefully we can pick up the meds for home, shower, throw a few things in a bag and dash to lake George for two days of vacation.

This has been a tough few days, and the impact on the rest of he summer is kind of depressing... G will still need surgery later this summer...likely at chop...sigh.

But at least it seems like we will get through this ughish moment. Thank you for praying for g, and for everyone who called and visited...we are grateful.

Peace, k
....................................................
Hi all. Sorry for the delay in updating again..and I am on the iPad, which I can't type on...but a lot is going on.

G was successfully de ported at the end of May, rode the star ledger munchmobile to eat cupcakes (amazing day)! Worked so hard through finals, and finally got to summer. Phew!

G is working for my mother in law this summer, two mornings a week, she loves helping...and Rosie is a reading machine.

We were supposed to go to lake George yesterday...
Thursday night g told me her stomach hurt, I gave her a hot pad and sent her to bed. In the middle of the night she woke me up to say it reAlly hurt...all day Friday she stayed on the couch, crying on and off about pain...by later Friday might I was concerned and called the pediatrician. He told us to go to the er. Ugh.

Note to self, local er is a nightmare.

Night to the mare.
Ugh.
Got there At 11:30' took hours and hours to see doc, to get any sense of anything. I cannot type on this thing. IV was a debacle, took three hours to rule out constipation...finally saw a surgical doc who was awesome, told us about half of G's symptoms were textbook appendicitis, half were not, but we opted for a ct scan to get a clear pic of what was going on .

G started to really perk up, so we figured we would leave late for lake George but it would be all good...
And then the er doc told us g had appendicitis.
Ugh.
But we got info on laparoscopic surgery, etc etc. we felt pretty good about things, figured maybe Dave could take Andrew And rosie up late on saturday and g and I would recover by Sunday and we'd drive up together...
Got to pre op, doc came in and said no go. G had too much inflammation, surgery had to wait, g needed five to seven days if Iv antibiotics , then surgery six weeks later...

And we all fell apart.

Sigh.

Fast forward through the hours of weeping and despair and disappointment and exhaustion...I may have made a scene.

G's pain got pretty terrible, and we had questions, and things were awful. Pain management was completely inadequate, we were devastated about vacation, and misery prevailed.

Last night I called chop, I had concerns about the shunt catheter and the area of infection, concerns our doc totally shared which made me even more nervous. We arranged for a neurosurgery consult here this morning, I ran home to get clothes and such for the week (and a much needed shower). The one upside of staying local...we can run home to get things...

When I got back to the hospital g was much more peaceful, the pain meds given at continuous intervals really helped.

I was tipping over with tiredness, Dave went home and I fell asleep in about two seconds. The night was ok, g needed help a few times but otherwise we were good.

This. Morning chop neurosurgery called at eight to see if we needed transfer, everyone was concerned..ugh. G's pain was a lot better, and she loved the room service. ;). I spoke to the surgeon, and then the neurosurgeon came...

Phew. The neurosurgeon(who looked way, way young) was great, he explained everything, and then called dr storm right there...they spoke, and agreed what we were doing here was appropriate and safe for g. I was so impressed with how he handled things and how much time he gave us. I was so grateful. Just knowing g was ok with this plan took so much pressure off...

Sorry this is incoherent, it is hard to type over the full house marathon going on.

And then the Eucharistic minister who cAme to us was a friend , which made my day. And after that, g has had visitors and visitors...the other perk of being local..

We hope and hope we can bust out Wednesday and maybe get to two days of our vacation...it was hard to send Dave and Andrew and Rosie off today...this is the one week we do something as a whole family, and we work really hard to get ready for it...the bitter disappointment has been a challenge. And this just was so out of the blue....sigh.

But At least g's feeling better, that pain thing was way not acceptable...and after the awfulness of our 13 hours in the er, the folks on the peds floor have been fantastic, every one. Just wonderful, even when I was flipping out yesterdAy...

Sigh.

So that is today in camiolo land.

non brain tumor related ugh...all new smite.
Meh.
So our hospital free summer is not so much the plan now...the appendix has to come out in a month or so...and we have follow ups with the surgeon ad local neurosurgery...sigh. I am so grateful we Dod get this checked out, it would have been much more serious had we waited and much worse to deal with up at lake George. So while I am disappointed and sad and beyond tired, I truly am grateful for finding this out before we went on vacation...that was a legit blessing...

But I am bummed. Dave is horribly bummed, he works so hard , to lose this week...sigh. But thank God G should be ok.

Please pray for her...and my Rosie scans in two weeks...
Ergh.

Peace, k

Thursday, May 15, 2014 6:38 PM CDT

Oh, the updating FAIL!!

You know, with facebook I can do a one line or two line update when things happen and that’s all my brain can manage, and then I never get over here. And when I think about getting over here, I just have no words. Alas.

But on May 6, Genna had a rock solid stable MRI.

Seriously, NOTHING in the report made me frantically email our doctor.

I am trying to be completely zen. This is great news, and we are so relieved (I only just saw the report a few days ago, even the preliminary report was not ready when we saw our doctor). This has just been such a very, very long road. And honestly, there is not really an end in sight, it’s hard to believe we have had stable for almost a year.

Our doc even cautiously mentioned the idea of waiting a little longer to scan again, to which I responded a rousing, “pffft NO!”. Our wonderful amazing doctor just laughed and said we could do 3.5 months (my compromise, even 4 is too scary at this point).

Of course waiting even a little will put Genna’s NEXT MRI almost exactly on our 10 year anniversary of brain tumor diagnosis.

Sigh.

But TODAY, today we have a good scan to be happy about.

Well, since I am such a fail at updating, we’ve had that for a week and 2 days. Oops.

And in epic follow up to that . . . we decided it is time for G’s chemo port to come out.

Cue John Williams-esque Fanfare.

We do feel apprehensive about doing this. But it’s the right thing to do. I know it is. Just . . .sigh. It’s hard. But as of yesterday it is also SCHEDULED, next Friday morning Genna and I will head to CHOP at the crack of dawn to get her officially de-ported.

You know, the last time she was de-ported, in 2007, we got a Costco membership so we could have cake.

Someday that might be a final Jeopardy question, I just thought I should let you know.

So, we have de-portation next Friday, then an eyeball check in mid-June, Rosie will scan late July (need to schedule THAT) and G will scan again probably after oncology camp. But we will NOT be worrying about chemo for most of the summer, and that is a blessing, a huge, huge blessing, especially in May, which is both brain tumor and NF awareness month.

In other news, G did great at the NJ History Day competition, while she did NOT advance to Nationals (only 2 kids from the state advance in her category. . . she was SO relieved to NOT advance, heehee). Her scores were great, the judges loved her project. I am really proud of her.

I also had a really hopeful IEP meeting about G today. Really hopeful. That is not something I can often say. I am grateful.

And there is a big fandango of fun coming up in 2 weeks. . . I will update more about THAT when it happens. 

No, really, I will.

In another week my baby turns 12. This is also pretty huge. Andrew will return home from his first year of college. The school year will wind down (THANK GOD). We will go to Lake George (a bittersweet trip this year, some difficult losses there in that place we love so much) and hopefully we will get to go to Camp Sunshine. The girls have applied for onco camp, and after the long winter here things are finally looking green and beautiful.

We are blessed. Even as I am so tired, and so demoralized about certain things in life, we really are so very blessed.

Once school is out we can start to plan Genna’s sweet 16 party. I never was into the idea of a big sweet 16, it seems a little silly. But birthdays are so not guaranteed here, this 16 is going to be Sweet Out theWazoo.  That is something else to look forward to, a blessing to come.

Also, this week we got to spend some time over a few days with dear friends we met through Caringbridge. Ray and Diane are doing a whirlwind tour of the U.S. – they live in AUSTRALIA! – and came early to see us. We laughed so much over the last few days, we ate cake and shared stories and hugs and laughed some more. It was just an amazing and beautiful few days. I am so grateful for such good friends, friends we ONLY met because of our difficult journey and because of this page.

Thank you all, all you friends out there who still check in despite my wildly infrequent updating, all you friends we have not met yet. We are so grateful for you all.

I need to run G off to youth group in a few minutes, and then re-watch parts of Gettysburg so I remember what I’m teaching. Life keeps moving. And I am so grateful this May that we can move a little more freely with life.

Peace,
K

On my blog last year I wrote our entire brain tumor/nf journey out for May. I can’t do it again, it really shut me down for months. Yes, I need therapy. I know. I tried. It was lame. I quit. But anyway, if you want some May awareness you can check out last year’s entries . . . OR just read the most recent entry, Making Sense of May, which is more cheerful.
http://www.kmc-movingrightalong.blogspot.com/

kc

Tuesday, March 25, 2014 1:03 PM CDT

Worst. Updater. Ever.

March has been a marathon of busy stuff, and I have literally not had my head above water until the last day or so¡Kbut I am sorry, it is awful to go this long.

Our Coffeehouse for a Cure for NF was really wonderful (March 1), we had a fantastic turnout (over 150) and raised around $4000 for the Children¡¦s Tumor Foundation. We are so grateful to everyone who donated, the magnificent performances, all those who helped bake and set up and clean up¡Kso grateful to our parish for letting us use Fr. Platt Hall AGAIN, grateful to the Giving Nest preschool which normally uses that space and takes EVERYTHING down so we can turn the room into a Coffeehouse.

Rosie and her cousin sang a festive Sandra Boynton song about broccoli, and G read a poem about lizards (by Jack Prelutsky). A grand time was had by all.

I have yet to write thank you notes, that is my job for this week, hopefully. But thank you to EVERYONE who was a part of this event.

Right after the Coffeehouse we had History Day at our school (which I¡¦m kind of partially in charge of. Ok, sort of most all the way in charge of, but I have WONDERFUL parents who help with all the logistics and truly save the day every year). Genna is EXTREMELY tenacious with these projects, due to her learning issues we have to talk through everything 57 times; I have to let her come to the answers and connections on her own, I cannot tell her things, the process is kind of excruciating but she did place in the top projects again this year (we did not have winners, we tried to follow the National History Day model and have the top 30% or so of projects recognized as Excellent). We spent 20 hours the weekend after the Coffeehouse working on G¡¦s project. She painted her display board, read through a hundred or so primary source documents multiple times (thank GOD for the iPad, being able to enlarge documents opens a whole new world for G in terms of research). It was an insanely busy week. I also had to judge middle grade papers for New Jersey History Day, those were due the Friday after the Coffeehouse¡K INSANITY. But good.

Our History Day at school is very awesome, it does mean I have 50 kids to grade, so that next week was THAT kind of mayhem, interrupted by a trip to CHOP for port flush / neuro check. G seems great. We enjoyed seeing our doctor, we got to give a radiation oncology med student the long version of G¡¦s story while our doc took a page, and G got flushed without incident. One more flush in April (Holy Thursday, so we won¡¦t miss school) and then scan day is the first week of May. Oh frabjous day. Ish.

IF that scan is ok, we will consider de-porting. But it¡¦s been a very rough few weeks in our brain tumor community, so I am finding optimism hard to come by. Maybe that¡¦s also part of why I have had trouble finding what to say here. Obviously the Coffeehouse has to be talked about, everyone is so supportive and wonderful - - we felt REALLY loved that night. Beyond that, I have been really struggling to keep my head above water in terms of work and then just the over-arching sense of yikes that sometimes settles in my bones.

This whole NF/brain tumor thing is no joke, you know?

ANYWAY, History Day safely past (well, the regional competition is this weekend), we had a lovely celebration for my sister¡¦s birthday in NYC, then G got to pack up and go on her school¡¦s choir tour. She was BEYOND SO EXCITED. Beyond. Last year this trip was a game changer for G, socially. It is such a blessing, the entire (super small) high school goes, even kids who sing NOT like soloists (kids like my G) - together they sound beautiful. She was SO excited to go. Our house is weirdly quiet without her. I will be glad to have her home tomorrow.

And at least so far, the folks running the trip did not need to use the ER ¡§Duh¡¨ List I made (which pretty much is CALL CHOP. DON¡¦T DO ANYTHING TO THIS KID UNTIL YOU CALL CHOP), or make the 43 minute drive to Johns Hopkins or 2 hour 15 minute drive to CHOP. Not that I mapped that all out or anything.

Ergh.

Tomorrow she will be home. Phew.

Also, I have realized that I am very rusty on my ¡§substituting middle school¡¨ skills. I need my high school students back. ƒº

This weekend Dave and Rosie and I went to New Rochelle to see Andrew¡¦s team play. He did not get in to pitch, but he was really glad to see us (I think) and it was a gorgeous day for baseball. And Mariano Rivera¡¦s son pitched the second game, so Mo was there. Like, THE GREATEST CLOSER IN THE HISTORY OF BASEBALL was sitting with the Iona parents, watching his kid pitch. And then he was tossing a ball with his youngest son and another little kid who happened to be there.

Yes. THAT.

Sunday I took Rosie to a craft festival, I am DETERMINED that we will do some creative stuff, and it was important (I thought) to spend some special time with R while G is away. We had a great time. We also rearranged her room while G was gone, I took apart the bunk bed, gave R Andrew¡¦s loft bed, gave Andrew half of the bunk bed, gave G the OTHER half of the bunkbed - - I needed to do some project where I could see progress, and this definitely was THAT. Assembling things always makes me feel better.

So that¡¦s where things are with the G-foRce! ¡V life in ¡§stable¡¨ land is pretty good. I am trying NOT to feel how precarious it is, I so long to be like folks who can celebrate being done with chemo and have a fest and a half, we just ¡K I know what our reality has been. But at the same time, I just started yesterday looking at how to get accommodations on a College Board test, ie the PSATs. G will take this in the fall.

Yes. I am blessed that I get to assemble piles of documentation and forms and this and that to get a large print test. I am so freaking lucky. No sarcasm. I am really, really grateful to have to do this kind of annoying task. SO GRATEFUL.

Ok, better go chip away at more wallpaper in Andrew¡¦s room. Ugh.

Please pray for our friends from Camp, the Ramirez family, as they lay their sweet Arianna to rest. And for our friend Emma, and Tommy, and Hailey and Jenna with a J¡¦s little sister Abby - - just so many people I could list. Please pray for all these mighty kids.

Peace,
k

Tuesday, February 11, 2014 2:42 PM CST

So the problem with Facebook is that I forget to update here…

Between snow and sleet and gloom of sedation, Genna’s scan was stable. Truly rock solid stable. Granted, that’s rock solid from last time’s stable-ish (this report referred to the progression noted last time, the P word is not our favorite here)…but we’ll take it.

G was a trooper, and we were totally lucky, the storm shifted north a bit and Philly got WAY less snow than originally predicted. Home got slammed. Our house is a permanent winter wonderland these days, a solid foot of snow on the ground, snowbanks 4 feet high, and more snow coming.

I think because of the snow it was the fastest scan day EVER. We literally saw Dr. B at 2:05. Our appointment was at 2. She already had the report. G’s scan was around 9:15ish. Astounding ! I didn’t even have time to get a migraine!

So we have a reprieve for another 3 months, Genna is thrilled, of course, and this time Dave and I can actually breathe. We didn’t feel that way after last time.

We even discussed (tentatively) de-port-ation, aka the removal of G’s chemo port. That prospect terrifies me, after some thought (once home), I talked to Dr. B again and we agreed due to G’s school schedule, choir tour trip, etc., we will wait until right after her NEXT scan, if that’s stable, to take out the port.

For the first time since 2011 I am cautiously breathing.
In celebration of this, Dave jumped into the Atlantic on Saturday (it was about 29 degrees at plunge time, the water was 35 I think? ) . . . all for Camp Sunshine! It was an awesome, wonderful day, and getting to hug some of our dear Camp Friends was the best moment ever. Thank you to all who donated, SINCE the plunge Dave is now up to over $500!!

And now we are in full on Coffeehouse for a Cure preparation. The Coffeehouse is March 1 at 7 at St. Mary’s Stony Hill in Watchung, NJ. It should be a great night, we have some amazing raffles, the entertainment looks to be good, of course the cookies will be amazing. ;) Please come join us if you are around . . . and start your No Snow! Novenas NOW. 

Girls are home from school, I need to run. . . Thank you so much for praying for us. Scan times are such a challenge, this one was worse than usual. We are just so weary here. But we are determined to USE. THIS. TIME.

peace--k

Wednesday, January 15, 2014 2:13 PM CST

Hi, all—

The word of the day is stable.

We are very relieved, of course. I’m even mostly not twitching too much. This could be considered a win.

Clinic was a ZOO yesterday, I knew it would be bad when there was a traffic jam in the parking deck. Now there’s a perky disembodied voice in the elevator that says cheerful things like “Second floor! Going up!” . We were rather amused by this, the girls and I. Dave had to work, so I was flying solo. This is always a bit precarious when getting scan results, but we decided it would have to be ok this time. That’s why the scan was Sunday, so Dave could come. We figured if something was catastrophic and we had to stay, he’d be there.

Ah, the reasoning of an oncofam.

Anyway, we almost could not find a seat in clinic, and after an hour and a half I told G to go find a nurse to mention her LMX had been on nearly 3 hours (we stop near Titusville to put the cream on. Weirdly, the little building we used to stop next to has disappeared. I almost drove by our spot. Bizarre). The nurse came to find G at the EXACT minute Dr. B was ready to see us.

Murphy’s Law, Oncostyle!

We eventually got through G’s access/labs/flush/de-access and then scurried over to see Dr. B. I was a little nervous because she did not give me the quick all clear, she chatted with Rosie and G and saw Rosie’s circus video.

Several times she had to step out for pressing concerns. I am cool with that, we have BEEN the pressing concern enough times. . .

Rosie gave Dr. B the picture she had made (a “Dr. Bee” saying “your scan is stable!” on rainbow scratch art paper), G told some awful chemistry jokes, we had a jovial kind of time, around the elephants.

Finally, she did give me the all clear. Well, the all stable. Clear the scan is not. Rosie has 3 areas of tumor. I generally do not speak of this, because it is the first mile marker on the road to madness, and these areas are stable. But even with my neurotic questions upon questions, everything looks stable even to me.

There’s not much we can do (translated: nothing) for Rosie’s discomfort with the plexiform by her ear, but stable is a huge relief. AND Rosie is still clinging to the bottom of the growth chart. Woo! Almost 5th percentile! We were joking that somewhere there ARE kids smaller than her. And that's cool, too. ;)

We were out of clinic by 12:40, home by mid-afternoon. The ride was a little challenging (really rainy), so I kind of collapsed on the couch when we got home.

So we have a 6 month reprieve for Rosie, G goes back in 3 weeks for HER MRI. Woo.

My heart has been pretty heavy these last few days for some friends who’ve gotten devastating brain tumor news, and for the reality of where we are. I can stuff that down sometimes, scan days just remind me that even a GOOD day in a pediatric oncology clinic is still a day IN A PEDIATRIC ONCOLOGY UNIT. And it occurred to me last night that stable NF tumors are kind of like riding the Titanic and watching the icebergs floating nearby. Right now they are just floating along. . . but it’s hard to shake the sense that at some point, sometime, you are going down with this ship.

Meh.

BUT Rosie is thrilled. We are relieved. Now to get G through midterms (oh the despair!) and then have our ONE night at Great Wolf Lodge, and then back into regular life for a week or so until G’s MRI.

I am weary.

But due to stress I never opened my Cadbury balls, I’ve been scarfing them today in the post-scan-stress mode. Yum.

Anyway, thank you so much for praying for us. We are so grateful.

Peace,
k

Sunday, January 12, 2014 6:57 PM CST

Hi, all.

I hope everyone's year is off to a good start.

We are just back to school, we've had some weird weather here (one snow day, one -20 wind chill day off). Midterms are nearly upon us, so G is in a state of near constant panic. I still have to rewrite 2 midterms & write one for the first time; I’m getting close to panic
too!

But today we had our first denial derailment of the year, aka Rosie’s MRI.

Sigh.

We had to leave pretty early, 6:30, but there's ZERO traffic going to CHOP on Sunday. My Rosie is so brave. She was really dreading today. We got her a bagel, and I kept trying to think of what treat I could promise her for after, just to try and give her something good to focus on. Rosie does her scans awake, and that is very hard.

Today, she could not so much be distracted.

Once at CHOP we got situated pretty quickly. We had one moment of almost ugh (a nurse thought that I might not be allowed in the room with Rosie. I kind of went to the edge of Onco Mom at her, in a nice way...but the policy still allows for one parent to go in, phew!), then Rosie got her little pjs and began dread in earnest.

She was so afraid of the iv, she told me , "mom, I might cry just a little," and her eyes filled with tears as the nurse came over but then she held my hand SUPER tight and did NOT cry...she is so brave. My baby girl is so brave. And then it was time to dash, we went into the scanner room, she climbed onto the bed and got her earphones for Pandora and the big cage thing got put over her face (but at least it did have the funky periscope mirror arrangement so she could see the techs in the outer room)...and she was up and into the scanner.

This time I got a real chair, not the odd hamper like arrangement of last time. I plugged my ears with the handy yellow earplugs and spent only the first 5 minutes cursing out the Siemens Magnetom in my head.

It is very hard to express what it is like to see your child in this machine, just lying so still for an hour and change. My poor baby.

But then I read Runner's World and got inspired (came home tonight and booked our favorite hotel for Philly in September. Not sure if I’m running, but Dave will), read Guideposts and got inspired, and then she was done.

We were home by 12:30, which is insane.

We get results Tuesday, and G will get her port flushed. She is really upset about missing exam review, but I could not get the appointments next week when I hoped to.

Dave came today, but I have to go on Tuesday alone. I really, really hope we don't get bad news. Rosie’s had some weird stuff recently, not new, just timed perfectly to scan time. I am trying not to panic. Failing, mostly, but trying.

And G gets to scan in 3 weeks. Oh frabjous day... glug.

But I am trying, REALLY trying to not give in to the glug. We are going to Great Wolf Lodge for one night next week (midweek; with midterms, I can do this and G won’t miss school and neither will I--Rosie will only miss a half day, which is fine). We are just starting to think about G's 16th Birthday this summer (I know, it's way early. But we need joys to focus on). We are thinking about our Coffeehouse on March 1--so much work to do!
These are all good things. We are trying, TRYING to focus on the good.

Thanks for thinking of us, for checking in. We do appreciate it. I will update on Tuesday when I have scan results. Please pray for us.

Peace,
Kristin

Thursday, December 26, 2013 7:38 AM CST

Merry Christmas and Happy New Year to all our friends¡X

I hope that all of you have had a blessed holiday season. In the busy-ness and mayhem I have once again been way beyond remiss in updating here¡Kbut life off chemo tends to be quieter, which is good. This time last year we were a year into treatment again, and G was starting to feel pretty discouraged and dreadfilled about chemo days. I am so grateful that this year we have this moment of stability, for however long we have it.

At the beginning of December the girls both had their eyes checked¡KR¡¦s were rock solid stable, we are almost out of the danger zone for her with eyeballs and optic glioma (and since she¡¦s past 10, she is in a lower risk for vision loss now¡Xan NF og thing), G¡¦s eyes were doctor stable (which means one line worse in her bad eye, which of course Rosie and I both noticed, alas). But it was a cheerful kind of visit. We also stopped in clinic for a quick port flush, and then went on our merry way.

We miss our nurses and doctors in clinic. I know that sounds insane, but after being there so often for 20 months¡Kit¡¦s weird to NOT be bringing cookies to clinic.
But having my G healthy at Christmas is truly a blessing.

Andrew was pretty sick his last month at school, first he got the flu at Thanksgiving (thanks to our flu shots, G stayed healthy), and then mono. He seems to be perking up now¡Xit is good to have him home. I do not do well having one of my kids sick and NOT at my house. And even with sickness, Andrew did great in his first semester. I¡¦m really proud of him (and yes, relieved. Come on, you know if you have a kid go off to school just having them survive the first semester is a relief. ƒº ).

In G-foRce! news, we did a Santa 5k as a family last weekend. Dave ran. Andrew jogged with Rosie. I walked with G. Two seconds into the race G was miserable and we were almost dead last. Out of several hundred people, we had like 3 folks behind us. And one looked to be 80. He eventually passed us, too (but was so encouraging on the one big hill, he really helped G). I was pretty frustrated, trying to MOTIVATE G to move (a little too drill sergeant, admittedly)¡Kbut as we went along, and G said, ¡§MOM, I AM DOING IT!¡¨, I kind of realized the magnitude of this. She walked 3.1 miles. For G, this is a big, big deal. Within the race I had kind of a major attitude adjustment¡Kevery step she takes is a miracle. Really, a miracle.

And you know, the last tenth of a mile G sprinted (well, for G), she passed the 80 year old guy, she passed a santa elf, she smiled for a camera, and crossed the finish. We were really proud of her.

Then she was all dizzy and looking for a bagel. But hey¡Kwe were really proud.

And honestly, as we move into 2014, into a January scan for Rosie (which I¡¦m feeling some trepidation about) and a February scan for G (can¡¦t even speak of that, based on some of the spots in our last ¡§stable¡¨ scan), the race is kind of everything. We aren¡¦t sprinting. But as long as we keep walking, one step after another, we can keep our head above water or something.

This Christmas I kept thinking about friends in our brain tumor community (and NF community), friends who didn¡¦t know last year that it would be their last Christmas with their children¡Kfor folks now who know that this is likely the last Christmas with their child¡Kthese thoughts have been much with me over the last weeks. Two years ago we were in such an uncertain place. And honestly, the future is anything but clear, especially for my G but also for my Rosie. I just want to make sure we embrace each moment, that we live to the fullest, that we let no opportunity pass to find joy and hope.

This is a work for me. My children naturally seem to gravitate towards joy and hope¡Kbut for me, it is definitely a work. I pray that in 2014 I can do this work better.

Thank you all for sticking by us. I know it is not easy sometimes, I feel like I turn a bit more into a porcupine every day. But we truly are grateful to everyone for all the ways you love our family, bless my children, and help us along this long, long road.

Peace and blessings to you all in the New Year¡X

Kristin, David, Andrew, Genna, & Rosie

Monday, November 11, 2013 3:54 PM CST

Hi, all.

FIRST THING: Please pray for our Camp friend, Hailey. She is in the PICU in Boston and really, really needs prayers. G is upset that her friend is in this spot, please pray for Hailey and her family.

So, epic fail on the update.

G’s MRI last Tuesday (I am so sorry) was stable. Mostly.

Our doctor was happy. We are mostly happy, to match the mostly stable report.

We spent a good while going back and forth and back and forth over this scan and last scan, this scan and May’s scan, this scan and May of 2012 (that puts EVERYTHING in perspective). After reading the report I did kind of push our doc on the one not so stable phrase, but the spot in question Is VERY small (like, millimeters), so Dave and I are trying to be at peace with it.

But with each scan, making peace with this seems to get harder, not easier.

The “good” scan of August looks grim if you don’t see it next to the Extremely Grim scan of May 2012. That was my thought as the first pictures went up. Our GOOD pictures are really not super awesome. Context is everything in MRI world.

That said, G is good for 3 more months, punctuated by 2 port flushes (we are NOT taking out the line until G is stable longer) and one eyeball check in December.
G is happy. We are (now nearly a week out) more at peace with it. It is what it is. At least it wasn’t horrible, some post-Avastin scans are.

G’s proteins are STILL not quite normal, but they continue to improve, now 5 months out from G’s last dose of the Avastin.

Phew.

G is really struggling with school, she never gets a break, I am just trying to encourage her to Keep On Going! She is so diligent, she works so hard for the decent grades she gets. It’s just such a battle to get through all the work.

We have taken to planning activity kinds of things on weekends, just to make G STOP doing schoolwork. We went to the Big Apple Circus with the Children’s Brain Tumor Foundation, G went to a Rutgers football game with Dave, we got a groupon-esque ticket to Godspell yesterday in New Brunswick, we are having some really lovely moments. NOT having as much dance this fall has been a blessing in terms of our family time, as much as it was a hard choice to make. G has enjoyed all these things.

It is just very important to us that she has joy in some moments, that school and stress and anxiety don’t steal all of her joy in life. She is generally such a happy kid, the school thing kills me.

But we are trying to keep up the festivity as best we can, at least on weekends. Or at least on one weekend day.
We also are signed up for the first Santa 5k in our area, in Morristown on December 21. This race benefits CTF! Not sure who set that up, but huzzah! We are the G-foRce! Jingle Joggers, and everyone is welcome to join us. I am making G do it, so there will be a walking squad of the Jingle Joggers, and a running group. I will get some kind of jingle bells for everyone on our team…not sure if I can manage t-shirts that approximate Santa costumes, I’m still pondering that (generally instead of doing school work. ;) only kidding). I will get the link up soon, but if you google search it, you should be able to find us.

Ok, so I better go back to G’s homework, and pondering dinner, and maybe trying to excavate my dining room table yet again. Thank you all for your continued prayers and support for our journey. The road is so very long sometimes.

Peace,
Kristin

Tuesday, October 8, 2013 1:29 PM CDT

Ok, so howdy.

I have no real reason for not updating for ages, just somehow every time I tried to organize my thoughts, I just felt kind of paralyzed, and had no mental energy to put words to screen. Back to school is always SUPER busy here, and this year Andrew moved to college (he is doing REALLY well, please please just pray that his shoulder feels good as he gets back into a throwing program after months of rehab—he’s nervous; but academically he’s doing GREAT)….Genna is a sophomore, a challenging year, and Rosie is in 6th grade, definitely a big step in terms of academic challenge. I am teaching 3 classes this year instead of 2, and I am pretty swamped all the time, although for the first time since I’ve returned to teaching I am not inventing a new class, so in that respect my swampiage is manageable.

Anyway, G is chugging along pretty well. She is constantly in deep panic about school; she is an intensely hard worker, but her work takes her a LONG time, and her anxiety makes it worse. Every afternoon I stay by her while she works (not right next to her, but within calling distance) just to try and keep her calm and on track. We got her an iPad to try and help with school stuff. We are still figuring it out, but as a tool to help manage her stress it is already a great thing.

In an amusing side note, this year for the first time I have G in one of my classes every day. I must be doing ok with this, a new student didn’t realize for the first 2 weeks that I was G’s mom (until she told him). Excellent.
And in one little perk, when I walk out of my classroom I can just see Rosie in her classroom (across the hall), she sits right by the window and smiles at me. I love that.

Mid September the G-foRce! ran in the Philly ½ Marathon. Thank you to everyone who supported us. This was a challenging year on a lot of levels, and we are super grateful to everyone. I ran my best time ever, 2:13, and nothing hurt during the race! My knees and foot held up fine, unlike other years. I was agog, especially since I wasn’t able to train as much due to plaguing foot problems. But I felt GREAT! It was such an awesome weekend, we saw so many of our NF friends, met some new folks, and generally had a wonderful time—aside from a disastrous moment before the start when I dropped my only bag of sport beans into the portapotty. Do. Not. Ask. Thank God Rosie had some fruit snacks, I was trying not to panic, since after about 6-7 miles I need a little sugar boost (but can’t do Gatorade or Gu). I think our fundraising for the year is past the 10k mark, but I’d have to check that…

Thank you all.

I also just got some sneaker charms for when I run, one says CURE NF! And the other has a pic of my girls. Love.

We are now in the weird limbo of life off chemo. G had headaches before our September visit, but her shunt was fine. Last week (on my 19th wedding anniversary…um, yikes!), G & I went down to CHOP for a port flush/labs visit. After some confusion (and some mildly assertive pushing by me) we got everything done I hoped to do…we didn’t see the doc, which was a surprise to me, but since G has been ok I was ok with that. G’s labs seem good, I have not heard back from our doc to confirm, but the base protein level was finally down almost to normal.

Our next CHOP visit is G’s scan day in 3 weeks.

Poop.

This one really matters. This is our first real post-treatment scan, and avastin has a nasty habit of working SUPER WELL and then the tumor has a little Growfest as soon as treatment is stopped. So while I’m glad G’s tests show less avastin in her system…I am sure as heck hoping her tumors haven’t noticed.

But honestly, only having to go to CHOP once a month makes my teaching life MUCH easier, even if I have more students this year. Those lessons for CHOP days killed me in terms of prep & then correction. And since I’m G’s teacher, I can exempt her from the work her class does for me when she’s not there (I would do the same for any kid with a medical excuse). Add to that Andrew being in college (and thus off my daily driving to-do list—we never had an extra car), I feel like I have a lot more time. It’s still full, and I am working more/helping G more/still doing activities for the kids, but there is less stress in the afternoons.

I’m really grateful for this.

So that’s where things are right now. We are chugging along, prepping for family fests and starting to think about holidays. I’m trying to get to some of the deep cleaning I never got to this summer, trying to keep my head above water with work, trying to help Genna enjoy life and not get so consumed by stress over school. She is quite pleased that her baptism day is this week, she has only asked 87 times for Scotty’s new De-LUXE album (that’s how she says it), I think she’ll be happy on Friday. ;)

I’m also trying to get G up for a CTF 5k in Morristown in December, a Santa Run on 12/21 . The G-foRce! is going to be there (hopefully in silly hats and some sparkles), when I have more info I’ll post it…we’d love to have anyone join us. I hope to get G moving some so she can manage it. Her fatigue is still pretty intense most days, but I need to get her moving. That said, that means at this 5k I will be looking at a 14 minute or so pace (with Genna), so folks who walk fast can feel free to join us, too! ;)

Ok, better go clean a rug or deal with the papers I just put in a basket because I didn’t know what to do with them. Thank you all for sticking by us, I’m sorry I’ve just not known what to say for so very long.

Peace,
k

Friday, August 30, 2013 8:55 PM CDT

Today is 9 years.

9 years ago today was G’s first MRI.

At this time 9 years ago I was having panic attacks, sobbing on a phone with our pediatrician, a nurse, the nurse for a neurosurgeon at Columbia Presbyterian…trying to feed the kids (thanks to Jen Browne, we had food that day).

Tonight, 9 years later…Genna just spent 2 hours talking to various brain tumor friends around the country on an iPad. She giggled and laughed and commiserated with kids already back in school.

9 years ago, Genna was about to start first grade.

10th grade starts next week.

9 years ago we felt very, very alone.

Now, we are blessed with a community of people who understand. We’ve lost many, many friends along the way (which is largely on us, no question), but we have gained so many, too.

9 years ago Rosie was a toddler, barely 2 years old. She starts middle school next week. And my fourth grader, Andrew? Muddling his way through his first week at college.

9 years is a ridiculously long time.

Today we took the girls to the Cheesecake Factory, Genna has always wanted to go, and then we went and got the iPad, which is technically a FAMILY iPad but is for G to use at school…we can get a lot of her textbooks here, enlarged, and in read-aloud form. Win! Genna was beside herself when we walked into the Apple store….

9 years ago we were so desperate and afraid.

Now…well, we have a tentative truce with the fear. Some days it flares, badly. But some days it just sits there, like a lawn gnome, watching and quiet. We may not like it (well, I don’t mind lawn gnomes, but my sister hates them, so I try to buy her one whenever I can)…but we can live with it.

We are very deeply grateful. Every anniversary is huge. We were promised NOTHING. And multiple times this many years has been…well, not promised to us. At all.

At the same time anniversaries make us deeply aware of the children who started the journey with us, and finished too early. Many of their names are above. I love those children and their parents. We walked together down a very tough road, and we miss them so much.

This weekend is crazy busy…and then school ramps back up (I am utterly not as ready as I hoped to be, and I am teaching one more class this year. Not inventing anything new, but I always, ALWAYS want things to be better). We have a CHOP visit Tuesday for port flush/neuro check, and then the kids start officially on Friday. Genna is nervous…

But we’ve made it this far. We can keep going.

And finally, on the 15th Dave & I are both running the Philadelphia Half Marathon. This year is a little harder, due to what seems to be a shift in vision we are running without a large CTF presence this year…which a lot of folks do every race, but it’s a change after the happy mayhem of the last 6 years. I am So. Done. Running. It is humid and I am tired.

ANYWAY, we are running, and if anyone can help out, we’re grateful. If not, that’s ok, too, we hate to keep begging and begging, I hate asking for help at the deli or the post office, asking everyone in the world for cash is hideous. But no donation is too small, and we are grateful for any kind of help…dollars, yes, but also prayers for race weekend and just any kind of good thought.

My page is http://ctf.kintera.org/nfephiladelphiarnr2013/mommacams .

This is for me as part of the G-foRce! team, I think you can find our general team page THROUGH my page (I just have this one set for easy cut & paste…I’ve been begging.
Sigh. )

At least the trip to Philly should be fun. I love race weekend. Not so much the 13.1, but everything else.

And for my 9 year survivor…I am going to keep on going. I have to.

Peace, and have some cake this weekend to celebrate with us.

Kristin

Friday, August 9, 2013 8:44 AM CDT

Sorry, all—

I should have posted the other night, Genna’s scan is utterly and completely stable. Woo!

Between family wedding (awesomeness!) and drive to church camp for Rosie near Scranton (ughulous) and scan day (meh) this has been more a week of road kill than Super Productivity, which is kind of not how I planned it.

But thankfully, Genna’s scan is stable stable stable stable. Yes, the word appeared that many times.

Ok, not because the radiologist was feeling unusually chipper, more because that’s how many parts of G’s brain have tumor. Which is stable. Key point there.

Our doctor (who I love and deeply respect) showed us last May’s scan (the pre-Avastin baseline, which was essentially a repeat of The Scan Which Shall Not Be Named, ie April’s post-Sorafenib scan) next to Tuesday’s scan. The difference is remarkable even to the untrained eye (ie us). The mass decrease on the non-contrast scans makes us feel a little bit cautiously optimistic that we are ok stopping chemo for now. Not that we have a choice regarding Avastin, she had to stop that. But if we can buy some time of stability, that leaves Avastin open as a future option if needed.

Genna did really well. She is so mighty. The day is long and hard, but she did well.

Now we don’t have to go back until September 3 for a port flush and neuro check (I am not THAT confident, our doc and I agreed that a check would be good). Thus August 18 or so will be the first time since December 2011 that we’ve not had a regular checkup in Philly for a month or piles of meds at home. G is back down to 2 meds. It’s a little unnerving. Good, but unnerving.

And now I have 18 months worth of chemo house again. Meh. This time it has manifested in piles of school stuff and too much clothing for my children. I am hoping I can start to dig out before we get swallowed by the fall.

Thank you all for praying for us. Tuesday was the exact one year since Miracle Monday (date wise), and we are just so grateful. I don’t know how long we’ll have, if this respite will last…and life is so different, trying to help G learn grown up kinds of stuff now, helping her navigate teen-ness in brain tumor context. But she is indomitable. She can do it.

My head is killing me, so I’m going to sign off, we are in training for the Philly ½ (my training has been a mess, I am falling apart, but if I have to I will walk the dang 13.1 miles), eventually I will start begging again. Meh.

Anyway, peace to all,
Kristin

I forgot, both girls go to Ronald McDonald Camp this coming week...that's a big wonderful deal for both of them, I hope the week is good! I hope I finish helping them pack...ergh...

Friday, July 26, 2013 8:44 AM CDT

TUESDAY, JULY 30
Rosie was officially stable yesterday!
On the way down to Philly she told me she had a dream in which her tumors grew and she had to start chemo. The worst part of her dream (the part she returned to several times throughout the day) was that she was no longer allowed to eat sugar. Not sure where she got that from (because sugar and chemo are unrelated entities, and we certainly don't avoid all sugar here!)...but that was her big fear.

Hearing about this dream while going to the hospital was singularly unnerving.

Still, after some extremely dumb snafus down in MRI, Rosie bravely did her scan awake, I found ONE coke in the fridge of the snack shop (a rare, rare find), and we sat in the sunshine for a bit before heading up to oncology.

Everything truly is stable. The issues the plexiform gives Rosie are just what they are, we really can't do much about it, but nothing is worse, so we are relieved. Even the report was slightly wrong (Dr. B caught the error), not sure what was going on in radiology yesterday!
Anyway, thank you for praying for my Rosiebud. We are very relieved.
peace, k

******************

So it’s been a big week.

My firstborn turned 18. Yikes. I am trying (failing) to not be plagued by a sense of maternal failure, all the things I should have done better before 18. It came so fast… in a little more than 4 weeks he will be moving to college, starting to live on his own … and he still has so much growing up to do. Sigh.

Tuesday the girls and I went to see Annie on Broadway, thanks to Marta Blumberg…we were able with a coupon to get good seats so Genna could see, the girls LOVED THE WHOLE SHOW. I realized I have reached a different point in my life…as a child, my entire life’s goal was to see Annie on Broadway (I was a little kid when it opened). This week, I was admiring the shoes the maids wore in their big dance number, these black and white Mary Jane character type shoes. Lovely. Heehee. Thank you, Marta, for this wonderful evening.

And on Wednesday, Genna turned 15.

She was actually still up at midnight Tuesday, we got back from the city around 11:30…so she got an early Happy Birthday, but needed assurances if we said it THEN that we would still say it again the next morning. ;)

Last year at this time we were in a frenzy of anxiety and dismay as we waited for our first scan post-protocol switch. Things were so dire in April and May, so dire…so to get to 15 this year, not even to get to, to CELEBRATE fifteen is just huge and awesome and mind boggling and hooray.

Genna LOVES her birthday. Loves. She delights in every single aspect of the day. She had her birthday breakfast with Daddy at the local diner, wore her birthday t-shirt, got FREE fresh mozzarella from the lady at the Italian food store (who said, “IT’s your BIRTHDAY??? I need to give you a present, I love this little girl!”...which pretty much made Genna’s century. And the cheese was still warm and fresh and buttery and delicious, which only made the whole thing more delightful.

Genna helped make her pizza, she tried very hard to NOT see her cake (she likes it to be a surprise. I wish I was better at cake decorating. Meh). She snuggled with the dog, took a little nap, had dessert with all her grandparents, skyped an NF friend for the first time, skyped with family…it was a beautiful day.

Genna just exudes joy on her birthday.

Yesterday she went out to lunch with 2 friends, for the first time EVER I dropped her off at a restaurant (and did school work in the parking lot) while she went in alone. She had a blast.

Every one of these tiny moments is such a victory, a victory for science and prayer and G’s endurance.

Hooray and hooray.

Thank you to everyone who texted her (she was DELIGHTED every time her phone beeped out its little song), for the cards and gifts and love. She just basked in it all, and that makes me so happy.

Tomorrow we are taking the girls to the CBTF Kid’s Cruise, a fun thing we haven’t done in years…I saw the paper at clinic and decided to ask if we could go, they said yes, and the girls are THRILLED.

Monday is Rosie’s scan. My scanxiety is kind of bad, I just…I can’t help but wait for another shoe to drop. Things have been decent here, in context, and…sigh. Please pray for my Rosie. We will get some results that day. Then we have the joys of Emily’s wedding, and all my family in NJ for the first time EVER , and then Rosie goes to church camp and Genna has HER scan day. Yes, bookending the wedding week with MRIs was perhaps NOT the best idea, but scans have to happen when they have to happen. Ergh.

But today, we have leftover cake in the fridge and some cooler weather…I got my run in , (I need to set up a race page, I am SO BEHIND). Now I need to be productive…and hopefully find something to WEAR to my sister’s wedding…

Thank you all for your love and support of my family, it means the world to us.

Peace,
Kristin

Ps please pray for our friend, Lisa Temple Yacone, who has had a serious medical crisis and needs prayers. Thank you.

Monday, July 15, 2013 5:01 PM CDT

Hi, all…

I am so ridiculously behind in updating, a familiar refrain, I know, but I was truly offline for the better part of two weeks. I am only just now trying to find which way is up.

I am going to do this all backwards, but I kind of have to start at the top of the information pyramid.

We did have a great time at Lake George, and then the girls and I raced almost immediately to Camp Sunshine (Dave joined us VERY late Tuesday night), that week was astoundingly awesome…

And then today, back to clinic. G was all glooby about it pretty much mid-Saturday on. Without the manifold distractions of Camp, she had Chemo On Her Mind.

So we schlepped down early (LOVE Philly traffic in July, there just isn’t much), got G a pile of fluids, talked to Dr. K (mostly giggling about Tommy from Camp and his refusal to hug G and what G would do if she had 50 quadrillion dollars—in light of a recent 50 million dollar donation someone made to CHOP), got more fluids, and waited. And waited. It was a long wait kind of day, I knew the fluids would set us back a bit…

And after all that, G’s proteins were still double what they were last time, both in numbers and ratio.

Proteins are really more of a “less is more” kind of thing, we’ve learned.

Meh.

So with that, Genna’s kidneys finished their Chemo Coup and we are officially stopped treatment now.

Yes, I thought we had another 10 months to go.

Yes, Genna is happy.

Yes, I agree this really is the only reasonable option, based on the way things have been since April, and G’s scans, and my reluctance to continue Temodar one second longer.

No, I am really, really, reeeeeeeeeeeaaaaaaaaaaaalllllly not comfortable with this.

See, G has piles of tumor. Piles and piles. Heaps. Mounds. Globs. Lots and lots. Not metaphorically. Literally. Tumor Galore.

And see, tumor brings out my inner Chuck Norris. I feel a need to have nunchuks in hand at all times (preferably the glow in the dark ones like the little boys had in the talent show at camp). I want that tumor (ok, those tumors) to be actively getting their tumor backsides kicked at EVERY POSSIBLE MOMENT.

So…I am not super comfortable with this, even as intellectually I know this really is what has to happen, this chemo-stop.

Meh.

Of course Rosie scans in 2 weeks (fastest way to Blow the Minds of Everyone In Clinic…show up with a different kid), and then G scans in 4 (although I expect she still has residual avastin in her system, I don’t expect the feared rebound growth that quickly…how much of a bummer would THAT be, a year nearly to the day after Miracle Monday to be thrown back into despair? Sigh. Ok, so maybe “don’t expect” is overstating things, but I know that the avastin should be working still, it’s the NEXT scan I’ll be freaking about). So we will still be bopping down to CHOP a few more times this summer no matter what.

And I am not popping that port out until we have some sufficient time stable under our belts.

Sigh.

I’m not sure this will really sink in until late August when (if) we don’t go back for our regular chemo.
It is what it is. I am just not sure how I feel about this.
This odd day (we waited over 2.5 hours for the doc and STILL got home by 4) follows on the heels of an amazing week at Camp Sunshine. At Camp I am not just scary insane lady like everyone thinks I am here (or at least I’m not the only SIL ; ) ), this year I was less shell shocked by disaster so I could speak (likely to the dismay of the poor research people who talked to us. I have strong feelings about Sorafenib. And pictures. I was almost well behaved, until they said that NF kids do better than other kids with carb/vin and tpcv. Sigh. ). This year I just felt so blessed EVERY SINGLE SECOND literally to be able to be in the same room with the people who cyber-carry me the rest of the year. Being able to laugh and cry together, to joke about peripheral vision loss and share insights about hypothalamic dysfunction while running in slow motion to Chariots of Fire (ok, so not everyone did the slow-mo-running)…it is such a blessing.

To everyone who helped with Dave’s polar plunge last winter, thank you. YOU helped our family receive this respite, and all the other families there. We are grateful. This last year has been so hard, and to be with these fellow parent/warriors is the best mom medicine ever (especially since I am generally too nervous to take anything stronger than Dayquil, which doesn’t do much for brain tumor isolation/fear/dismay/angst).

Camp is nearly otherworldly in how it helps families like ours.

And in a Whoa Nellie moment, when some of the teens came to talk to the parents about brain tumors…Genna was one of the 3 teens who volunteered to come. I couldn’t look at her at first, I WAS NOT GOING TO BE THE CRYING LADY THIS YEAR because I so monopolized that role last year (see, local people who see me? Are you not so glad I save this for camp? Sigh). G amazed me. She just amazed me with her poise. She struggles with answering questions on the spot, but she did great…led by her amazing friend Lexie and new friend Michael.

For G, Camp is a miracle of friendship. Watching her and Hailey and Lexie have a pill party to encourage little Tommy with his pill taking…watching her sit with other kids/families at meals and programs, watching her chat with counselors…it was all like watching her just blossom and flourish right before my eyes. Even Rosie was braver this year (after the first day, when she was a barnacle), she did gymnastics at the talent show and made some attempts to talk to other kids (she is SO shy)…

I am just so proud of my girls, so grateful for what Camp is for them. Especially this session. This session was singularly amazing.

And I know, as we navigate this odd new place, that these friends from Camp will help us figure out which end is up, or at least not run away when I finally start processing what this all entails and go stark raving mad.

OR, try to embrace the moment and live in it and try to not go stark raving mad at all. That is likely a better plan.

Since G had no chemo today she is wanting dinner, and I did make some pesto last night for us to have tonight…I better go do regular mom stuff. Who knows, maybe I will actually get to unearth my dining room table, now that we are going to have some off-chemo time….hmmm… and my firstborn turns 18 this week (Whaaaaaaaaaaaaaaaaat????) and G herself will be 15 next week. She wore her “It’s almost my birthday!” shirt to clinic today…so we will be busy the next week or so, and then we have Aunt Emily’s wedding …and then Camp for the girls…with scans scattered throughout…

Yeah, my table is doomed to be forever buried, I think…

Peace,
k

Tuesday, June 18, 2013 5:56 PM CDT

Hi, all.

First: G survived exams. One or two barely, but some she did amazingly well on. She works SO HARD. So flipping hard. We are all relieved that things are over. Freshman year is Done. Huzzah.

And Father’s Day was really nice, a rare day where my children were all happy at the same time at least a few moments during the day. And Coco loved her first hike.

Quick Chemo Day update. It was a looooooooooooooooooooooong day.

G and I schlepped off to Philly bright and early, 6:35 a.m. we were on the road. Even with a bagel in hand, G was so quiet. Reading over old cb entries, about how G was a wall of sound going down to Philly…this change is kind of sad. Admittedly she drove me crazy then (knock knock jokes for 2 hours? Help me, Rhonda!), but she isn’t quiet now because she has achieved zen. She’s quiet because she so dreads going for chemo.

Sigh.

My poor G.

Anyway, we got there fine, now there’s new high security what not at CHOP, I had to go basically give them some DNA so I could get a visitor’s pass (because that’s what we call it now, chemo days…”visiting”)…and I promise I wasn’t so obnoxious in the moment, although I did go back and forth with the parking guy for a minute or two about where we needed to go…it wasn’t our usual guy, I said, “going to oncology” like always and he said “2nd floor, get a visitor’s pass” and I was all “what? Um, no, we’re going for chemo, we aren’t visiting” and he said “2nd floor, get a visitor’s pass” and I was all like “uh, ok” since there was a car behind me…apparently it’s been like this since May 1, just nobody told us until yesterday. Ahem. Good thing I am not a horrible crazed maniac bent on mass annoyance. At least not on Mondays.

These little moments of “different!” are what differentiate these days one from the next, so…yes.

ANYWAY, G got in, we got her triaged etc, then she gave her new little friend Ella a tutorial on port access, we had a port party (Nurse Cindy was a very good sport about the crowd in the room. G has zero issues showing off how the port works). Ella is so like G was at 7. It’s almost unnerving, she is SO like G.

That whole Port Fest cheered G up a bit. Then she talked to Dr. K about how to relax some (and this time she listened, poor Dr. Matt was so thwarted when he tried 7 months ago. After that G got an iPad to play with and then Dr. B was ready to see us.

We went back to the exam room and there was new ALARMING WALLPAPER. At first I wasn’t sure what it was, I thought it was a science slide gone awry, but it was actually insanely close close ups of dandelion floof. BUT there was a weird patch on the one wall, the pattern was matched great but it was obviously taken from another dye lot.

My mom is a wallpaper maniac, when she hangs wallpaper it is Perfect. So I was very distracted by the not-perfectness. Again, any little difference in the set up of things really throws us.

Apparently the bad patch was to cover an “inspirational” verse that was totally TOTALLY NOT inspirational for a pediatric oncology room. Yeeks.

This kind of stuff is very entertaining to me.

But then, on to business.

G’s proteins were almost ok. The levels were way down, and the ratio was Just off one (it has to be one for things to be good). But…sigh. This is after what, 8 weeks? Yikes.

So after MUCH, MUCH discussion back and forth (with G hollering things in between about how she did NOT want atropine! She did NOT want irinotecan! IT GIVES HER A BAD TASTE!), we decided to give G a full Avastin dose with gallons of fluids (to flush her kidneys), to hold the Irinotecan so as to maximize G’s chances of avoiding stomach upset (and thus undoing the kidney flush), and to do Temodar again so as to not have the Avastin be lonely, or something like that.

We discussed all kinds of things (at one point G was getting worried, we had to tell her we were just talking science, not about her at all…which is why I love our doctor, she will talk to me about plexiforms and NF2 trials and protein kinases and how we figure out what to do next based on all kinds of research over a variety of smites). I had to write stuff down (I’ve gotten so lackadaisical about that, which is terrible, but normally there’s not that much to say). Because of our Lake George vacation (and still hoping for Camp, although it is so late I am trying not to despair), we won’t be back at CHOP for 4 weeks…which is why G could get the full dose, not a half dose.

In four weeks we will re-evaluate dose/combos/pre-meds/etc. We will also give G fluids BEFORE we check her proteins. Then there’s only one more visit after that before we are back to a scan day (and that chemo visit is also Rosie’s scan day…ooooh yikes).

This world is too much with us.

The actual infusion took hours and hours, adding gallons of fluid equals gallons of time, about 3 hours total, with the “short” chemo, Avastin (only 30 minutes). G was pretty wiped (we need to figure out one of her premeds at bit) , but before she napped she got to have her picture taken with Flashes of Hope.

In 2006 G had her picture taken by the Flashes of Hope folks during what was a very, very difficult time for our family. Those pictures are such a treasure, I take lots of pictures but my camera isn’t fabulous, these photos are works of art. Yesterday G was posing and smiling, sporting her Superman shirt with her tubes coming out the top—and I was like dear God, is there a more appropriate way she could look right now? Mid-battle?

I am so grateful they let us do the picture again. The lady in charge remembered us (I remembered her, too, it was kind of a joke in ’06 that every time we saw them in clinic we ended up needing platelets)…it was great to talk to her about her survivor girl, and about mine, and just the wonderful work this organization does. And I got to thank her for visiting our friend Caitlin in the hospital for photos…that just means so much…

So after a very long and kind of tough day (G was sort of melting down in the day hospital, and we had some other issues), we finally made it home. Thanks to Peg who took Rosie after our day went super long (and Andrew had to go to work).

I am still so very tired. The day after CHOP is always sort of fraught with yikes, I tried very hard to avoid being scary today. But oh, I am so tired and achy. Today G felt pretty good , after a rough start. She slept a lot, then we all went to the library while Andrew was at physical therapy. The girls and I signed up for the summer program, what fun! Of course my first book is all about depressing stuff (um, literally), but I so plan to read and read this summer and not just play Candy Crush to avoid thinking. Ahem.

Behind me, Genna is singing “IT’s RAINING MEN! ALLELUIA IT’S RAINING MEN!” and now do re mi fa sol la ti do all in the same song while waiting for her turn in Scrabble. Yes. Summer is here…

Thank God. And thank you all for praying for my G, I am so glad she got to get her chemo yesterday, even if the day had a few more challenges than I planned for.

Peace,
k

and now behind me she is giving the dog a neurological eye exam and giggling. Phew, Coco passed her exam.

Monday, June 10, 2013 2:00 PM CDT

FRIDAY, JUNE 14
G's eyeballs were stable, thank God...always a little yikes to watch that exam (she has ZERO peripheral vision. Like NOT ANY) , but she is stable. Next week we go in search of new glasses locally, which is always a trip. G's eyeballs scare people. She is already pining for sparkly animal print glasses so...yes.

We avoided all the scary weather and had the fastest trip ever, so...phew!

Today is the last day of school; a tough week for G, and I know some of her exams were a trial, but she is officially DONE with her freshman year of high school in about 19 minutes. So relieved, so hoping she can have a truly beautiful summer free of worry.

I'll update again after chemo on Monday (pray G can GET chemo on Monday...sigh. We need those proteins to be down!)

And ps I signed up for the Philly 1/2 marathon again. Sigh. I better start running, right? Need to keep moving, need to keep fighting for a cure.

peace,
k
***********************************

Howdy, all, Happy June.

With blogging every day in May, I kind of forgot I hadn’t updated here in 47 years. If you want a close up recap of life in nf/brain tumor world, you can check out my blog for May. The address is below.

We are in such an odd moment here, missing chemo last week due to G’s elevated proteins from the month prior (3 sets of labs elevated). NOT going to CHOP when we were supposed to felt really weird. Not bad, just weird.
G was thrilled to have that Monday. I really needed it at school (finals are this week), so I was grateful, even if I am worried about not whomping tumor whenever possible.

In the meantime, Andrew graduated high school. Egads.

He was 9 when I started this page.

Sigh.

Please pray for him this summer as we try to get him to 100or the fall.

Yesterday we had a very small fest for him, it was sunny and lovely and he had a great time, I am glad.

G is in full bore final exam panic mode. My entire existence this week is to keep her on track. Only 4 more days of school. My poor girl is So. Done. With. School.
This has been a challenging year (what else is new?), and I know high school only gets harder. Heck, the history teacher she has next year is a MENACE….

Ok, that’s me, folks. Peace, already. I teach 10th grade history.

Right now she is translating Spanish sentences behind me. Nonstop. Reading of Spanish. Sometimes she is addressing me, but she doesn’t actually care if I answer, she just keeps on talking.

On Thursday we have G’s 6 month eye check, these days are always kind of stressful, since with G’s kind of tumors vision is often the first thing to indicate a problem. I know she had a stable scan a month ago, but she hasn’t done chemo in a while, and this makes me nervous…

We have to leave ungodly early, probably by 5:30 at the latest due to construction on I95 southbound, and her appointment is at 8:30…hopefully we can race back so I can collect my exams at school, and maybe G can do part of her exam there…she is missing TWO that day. Sigh. I set this appointment BEFORE the school year was extended to compensate for Superstorm Sandy.

She is only moderately freaking out now, for weeks we’ve been talking about how we will work this out.

If we can only get through until Friday, I am enforcing One Week With Nothing Academic to start the summer.

Rosie only has 2 more gymnastics classes, G has two more art classes, Andrew’s baseball dinner is tomorrow…and then we are TRULY done.

A year ago at this time we were awash in fear and despair. Reading through that month of blog entries, I’m a bit surprised we still get up in the morning. I make no claim to having a monopoly on yikes. I think some folks are tired of the fact that this marathon is wearing on our family as a whole. We are worn down. And I know we have no monopoly on that. But at the same time, the marathon is real.

Now I am erasing things. Ahem.

But THIS year, THIS year we have a respite, at least for the next 2 months. I want to just enjoy the little moments. Saying goodbye to Caitlin brought that moment home again...we need to enjoy Every. Little. Moment. Always.

We don’t have any BIG trips planned or anything (I can hardly believe it’s been a year since I took each of my girls away ), just our Lake George trip and camp for the girls (hopefully—I did get the paperwork in on time, barely, due to Rosie’s need for a current physical and our pediatrician’s reluctance to do it early…tough when kid’s birthday falls on Saturday, May 25, and forms are DUE June 1. YIKES! ), but anyway, I hope they will go to Ronald McDonald Camp. And my sister Emily gets married this summer, that will be awesome.

And in between I hope to take my girls to the library, and maybe Grounds for Sculpture and the old Duke Estate, places we’ve not taken them. Maybe we’ll introduce Coco to Hacklebarney (if we can convince G to go!). Maybe we will make different kinds of popsicles each week.

Last summer, so much, the fear paralyzed us and won. Last summer Andrew played extreme baseball, which took a lot of time (he has to rehab his shoulder this summer). Last year, everything was so dire and uncertain. New chemo, new fears.

This summer has to be better.

And we are almost there…

I will try to put a quick update up after G’s eyeball check on Thursday…then Monday it’s back for chemo. Meh.

Peace,
K

Thursday, May 23, 2013 1:41 PM CDT

Hi, all.
Yesterday we bid farewell to Caitlin.

The sorrow and grief is tangible. You can see it and taste it and beg it to leave, but it stays.

Fly free, sweet girl....and all our love to Meri, Jim, and Jacob.

*************************************

Monday was a CHOP day. G was dreading it. Dread times infinity. Took us almost 3 hours to get there, which was stupid (95 south is a mess due to construction). As we pulled into the parking deck, G broke out in an anthem about how CHOP was stinky and it smelled and it was awful.

Literally, she told me it was an anthem. And she sang it to the tune of the national anthem. "Oh, CHOP is so stinky! it smells really bad" etc...

We were actually still a little early (I left time for traffic), we got G triaged, she showed everyone her Scotty McCreery picture and her yearbook from school, everyone loved her Chemo Ninja shirt (I am trying new motivational things...we needed a new t-shirt). We saw the doc G talks to and then after a very short wait, Dr. B was ready for us!

G's proteins hardly budged in the 2 week break...which was really a 4 week break...from 4:1 a month ago to 2:1 2 weeks ago to 1.8 :1 this week. It has to be 1:1 .

Alas!

We did talk some more about how to move ahead...we have to keep doing chemo, I want to drop the temodar due to long term use risks, and Dr. B agrees, but until we can get G back on the Avastin/Irinotecan we can't really stop the temodar. Sigh. So we are taking a full month to let G's kidneys recover, then we'll try again with the Avastin. We started temodar last night.

G was ECSTATIC.

I was twitching.

It is scary , to hold chemo so long. I know we just scanned, and it was stable/a speck better, but to NOT do chemo...ugh.

At least G will only miss one more day this school year, that is good (and that's for eyeballs).

So if you can pray, pray that G's kidneys get rid of the Avastin already...this one is the one that's whomping the tumors, so we need her to be able to take it again.

Ergh.

School is almost done...G is really struggling, and then there are other issues on top of her normal issues, and I am getting little support for her, which is frustrating for her and just so sad to me. She fights so hard for every. single. thing.

I have to hold off on details, but just if you can pray for G to survive the next few weeks of school, I'd appreciate it.

Being at Caitlin's stuff this week just reminded me again how precious every single second is. Every second. I hate hate hate wasting one second on stress, or mean kids, or stupid battles. I want G to just be happy, to save her strength for fighting the tumors, not everything else.

Sigh. Rant over.

Only a few more weeks...

And Andrew graduates next weekend. Egads. I've been so fuzzy because of everything going on, I almost haven't even processed THAT. But my firstborn is finishing high school... phew!

AND Saturday, my sweet baby Rosie will be ELEVEN. 11. She is my sunshine and my love, my life is better every single day because of her.

Ok, need to go get ready to pick up G and bring her to art therapy, her favorite thing in the world...

As a reminder, I am posting a full recap of the last 8.5 years on my blog, in honor of May being brain tumor AND NF awareness month. It's a lot to read, it's put me in kind of a ptsd frame of mind (hence some of my rant), but it does give light to the reality of this marathon.

Ok, have to run...
peace, and please pray for Caitlin's family...and for Gage, and all our friends battling...

k

Saturday, May 18, 2013 11:10 AM CDT

Please pray for our friends from CHOP, the Dickey family.
Yesterday, their 9 year old daughter, Caitlin, passed away.

Brain tumors are horrible.

Caitlin was a spunky, smiley kid who was so friendly and enthusiastic about life. She was in Rosie's cabin at RMC last year, and all of us parents had hardly gotten them checked in when she dove right in to the coloring activity the girls were doing, I just remember how EXCITED she was by it all...

About a month ago Caitlin rolled down to visit G while G was getting chemo...her beautiful smile and kisses and just love were so remarkable.

There is nothing right about this, nothing at all.

Please pray for Meri, and Jim, and little brother Jacob.

Genna just wanted to know "why, mom? why does this happen?"...

I wish I knew.

As you can see from our new picture, Genna met her other favorite singer, Scotty McCreery, last Sunday. It was awesome and joyous and just the best night ever for G.

Life is too freaking short, we have to make these moments happen when we can. Grateful to Scotty's management team, who allowed G to come say hello...

School is still hard. G is struggling to the finish...the end is in sight. I am relieved. She needs a break.

On Monday we are going to try and figure out what EXACTLY we are doing for chemo; I would like to drop the temodar if we can (lots of reasons), G would like to drop the irinotecan (not going to happen), we need to figure out better management for the irino.

sigh.

I will update again after Monday. Tuesday is Caitlin's wake, Wednesday is her funeral. Please pray for her family, and all the kids who are her friends.

peace,
k

For May, which is brain tumor AND NF awareness month, I am re-telling our entire story from the beginning on my blog, http://www.kmc-movingrightalong.blogspot.com (I may have that first part wrong, but the right link is in the last entry). Just in case anyone wants to know.

Wednesday, May 8, 2013 12:58 AM CDT

ack, I forgot, between texting and facebook, to update HERE.

G is stable.

The awful area that drove our current need to treat was possibly a speck smaller, we have yet to see an official report, but Dr. B discussed things with the radiologist before talking to us.

We are relieved, those moments while we waited in the exam room, when I KNEW Dr. B had gone downstairs to get the info...my insides were shaking so badly. It never gets easier. The stakes are just so high.

But G did really well, getting accessed up in onco clinic makes a huge difference, and then she listened to Baby Monkey Riding on a Pig (on youtube. if you dare watch it, the song will be stuck in your head for all eternity), then she switched to Scotty McCreery, her favorite (besides Matthew West!). She giggled and saved her awful jokes for after she got the versed (yes. It is quite a ritual, the stoned joke telling), and then slept a solid hour after the scan , which is weird for her.

G did have a super hard time hearing that this doesn't mean she is done with chemo.

sigh.

I am not sure how she thought "we can talk about the irinotecan" meant that, but she did. There were many tears, loud proclamations of defiance, and general dismay.

We talked about adjusting the pre-meds more to try and alleviate the side effects that make Genna so upset, and I am going to try and restart the Motivational T-shirt Mondays or something to help her get through the hard stuff.

We are so grateful for prayers and the good news...just seeing all that tumor again, there is so much, it is just really crushing Every. Single. Time.

But we are through it, and school is winding down, and the weekend holds some pretty astounding surprises for G, I will post AFTER the joy. Let's just say we are very blessed by the kindness of some folks...you will likely hear G's squeals of joy sometime this weekend.

And she needs some joy. It is hard to fight for so long.

Thank you all for praying for us. Since May is Brain Tumor AND NF awareness month, I am trying to post a piece of our story every day on my blog,

http://kmc-movingrightalong.blogspot.com/

It's a hard read right about now, but things do get better!

And please storm heaven for our friend Caitlin, she really needs prayers right now.

peace,
k

Wednesday, May 1, 2013 12:32 AM CDT

A short update, in honor of May being both NF awareness month and brain tumor awareness month.

I will start wearing my Wall of Courage t-shirts TODAY. www.wallofcourage.com . Yes, I have two children on that wall, because of NF.

G has been doing ok, she felt GREAT since she only had to do temodar last week, she was bopping about for days. She is struggling to get through the end of the school year, but she is feeling pretty good.

In one really bright note for G,she decided to write a little piece about her brain tumor story for a devotional magazine called Devo'zine (a great teen magazine, I used to write a lot for them). G wrote out her story, we did some minor editing together (writing is tough for G), but not much, more word count/transitions kind of things, and she sent it in. The other day she got an official contract in the mail, her piece will be published in the November /December issue of Devo'zine!

This is huge for her, she is so happy and so pumped to try and write more.

Hugeness. These little victories are SO BIG in our world, just so big, and I am so proud of her.

We had Rosie's dance recital last weekend, she was awesome and won an award for her upside down class (the child is so flexible!), and we are continuing to try and help Andrew with some shoulder issues he's been having.

On Monday, Andrew's team has senior day...but it's also Genna's MRI day.

Sigh.

Looks like I'll be doing MRI day alone, hopefully the news isn't terrible, bad news alone is really hard. THAT is a t-shirt I'd prefer NOT to wear this week.

So we are a tad stressed here.

But spring is here, the weather is gorgeous, and school is almost done.

Over the next few weeks, in honor of this month of awareness of NF and brain tumors, I am going to be writing out our story on my blog. It's long, I apologize, but I am trying to collect years and years in 31 days. If you'd like to check it out, my blog is

http://kmc-movingrightalong.blogspot.com/

You may have to cut & paste that.

Reading old, old caringbridge entries has been kind of amazing. My G was so mighty from day one. So mighty.

Please pray for us on Monday, I will try to update when I can. We have History Day state competition on Saturday, so I'll be busy this weekend, at least.

sigh.

peace,
Kristin

Monday, April 22, 2013 6:14 PM CDT

Alrighty, friends, just a quick update.

I meant to update last week, but with events in Boston I just . . . did not.

Genna’s choir was in Boston on SUNDAY. Thank God they were not there on Monday. I would have been on my way to New
England faster than you can say crazy lady.

We did have a friend running the marathon, Suzanne wore her NF gear for my girls. . . I had been tracking her all day, it was the only good thing in what was otherwise a very tough anxiety day for me. I prayed for her at Heartbreak Hill, just sent every mighty prayer and thought her way (and found out later she had prayed for my girls at Heartbreak Hill. Yes. I cannot even tell you what that means to us). I saw her little stick figure guy online finish and then went back to doing schoolwork, looking up Fugitive Slave Law documents for my US I class, when a friend texted me to see if Suzanne was ok.

Um, what? Yikes.

Thankfully she was. Thankfully anyone we personally knew at the race was safe. Our hearts are with all of our friends in New England during this difficult time.

Genna had a wonderful time on the choir tour. Won. Der. Ful. I mostly did not frantically text her teacher too much, but I did get reports about how much fun G was having, how she got her hair straightened one night, how the girls helped her put on eye shadow for a concert (big times!—and thankfully she had help, G does Not See Well, a fact driven home any time she tries to put on her own lip gloss. Ergh). She had a blast. No medical issues (just one tiny cut while helping slice muffins. Only noteworthy because it took an hour and multiple bandages to stop the bleeding, thank you, Avastin). Lots of fun.

This is the FIRST TIME IN HER ENTIRE LIFE that she has done anything with her peers in a sleepaway kind of way, the first time she was in a normal social situation for this long.

This was huge. Huge. Gigunda. Massive. Earth-shattering. G had a week with the girls in her class (and the rest of the high school) and it was awesome for her.

G has never had a sleepover. She rarely (maybe 3 times in 9 years of school) gets invited anywhere. This is huge, how much fun she had.

But dang our house was freakishly quiet, especially in the early mornings when G is the first one up. This creeped me out pretty intensely.

We were so happy to have her home on Thursday. So happy.
The weekend was crazy full, we went to an NF fundraiser in PA on Saturday (and met some NF friends, old & new) and then RU LAX senior day on Sunday. Even all of this fun could not distract G from impending chemo day.

Ugh.

We headed out bright and early this morning, on the road by 6:45, we got to CHOP by 9:15, did the whole triage/access/labs thing, found an iPad for G to play music & Candy Crush on, and then saw Dr. K, G’s new helpful doc. I hope we can help her again with some of her massive anxiety, most of which is centered around missing school.

Not long after that we got in to see Dr. B. G was exceedingly reluctant and upset about having to do irinotecan/atropine again. . . and to her massive delight, her labs were awful so she couldn’t get chemo today.

Yeah, wild rejoicing by all. Ish.

Ok, maybe worrying by mom, rejoicing by G.

Apparently this is normal, we’ve held Avastin before but the protein values were WAY higher than they were even back in January, and G’s liver enzymes were somewhat off (which can possibly be attributed to the irinotecan). . .

can I get a yikes?

Ergh.

I found it wildly unsettling to just. Go. Home. Without any kind of chemo to our name. Well, except the Temodar, which G will take every night this week at home, but that came UPS. So we went home without chemo. ;)

I did notice, while G was having her neuro exam, that our post-scan appointment HAD BEEN PUT ON THE WRONG DAY. That was how I noticed it, in all capital letters in my brain. And yes, I shamelessly read the computer screen while we are there, just to make sure I know what’s going on. We had some issue setting up this appointment, but how it got put on the wrong day I will never know. I mean, I set up the appointment WHILE AT CLINIC. Thank God I noticed it, thank GOD, can you imagine how THAT would have played out, all of us traipsing upstairs to clinic post scan, on the verge of complete mental freakout, only to be told she wasn’t on the schedule?

A zombie apocalypse would pale by comparison.

Eventually we got that worked out (after I got home, but at least it’s fixed now).

So we got home insanely early, I am doing the laundry I never got to this weekend, I cleaned up a little and actually cooked real food for dinner, which G can EAT, to her joy. She won’t miss school tomorrow, she is one happy happy camper.

Sigh.

May 6 is scan day. And for whatever reason, maybe because last April was, in fact, the cruelest month, leading into the ugh of May, I am utterly heebie jeebied by this day.

This time is bad again. We’ve had some other issues here (please pray for us, just on other unnamed fronts), so things have been very stressful and anxiety producing, but scanxiety is a horrible beast. Please pray for G.

I guess that’s it for now. The end of the school year is in sight, thank God, Genna needs a break, the trees are finally blooming and the grass is green again. This week is Dave’s birthday and Coco turns 1! (we also have several other family birthdays; this could be a cake every night kind of week if we play our cards right).

Just noticing G fell asleep doing homework. . .

NF and brain tumors are hard. Even on unexpectedly chemo-less days. . . Just really hard.

Peace,
K

Please pray for our bt friend, Caitlin. She needs prayers right now, prayers galore.
And our friend Michaela, who is having major brain surgery tomorrow. These are G's friends, please pray.

Monday, April 8, 2013 7:20 PM CDT

Ack, I am SO behind as always. . .

Since the last update I think we've done chemo 2x, driven to Florida, had the Most Amazing Trip Ever, drove home, re-entered reality (um, ugh), had Rutgers Lacrosse Friends of Jaclyn Day, and rocked on!

And that¡¦s only part of everything. . .

Chemo has gotten tougher for G, emotionally and physically. Two times ago she was scary flattened by it.

The effect of most chemo is cumulative; that is, the side effects get worse over time. Our last chemo visit was a little crazy in a lot of ways, but at the end of the day we decided to add another med to deal with the side effects G is experiencing. Adding the little patch (the meds go through G's skin over a few days) made a HUGE difference last time. G still needed to sleep the next day, but she was willing to eat, which was a huge improvement,and she was FINE on our miracle joy trip to Disney.

We left Tuesday, March 26 around 6¡Kgot Andrew¡Kand headed south. We made it to Emporia, VA the first night and collapsed at a very nice Holiday Inn Express (great breakfast!). We liked it so much we booked the same hotel for the return trip! As we drove south on Wednesday we just drank in every mile that brought more and more signs of spring, the further south we went. We stopped and took the requisite pictures at South of the Border (soooo funny, so kitschy), we marveled at palm trees, we watched the temp go up on our dashboard thermometer- -even though it only went up to 65 that first day, compared to driving through snow to clinic (which was that Monday before!) it was gorgeous!!

We finally made it to the Sheraton Vistana (which I had booked through Costco Travel. I am now a believer). The front desk had some hesitation...I figured out they were trying to confirm some arrangement that had been made for my special request, which was for a room that wasn¡¦t a 4th floor walkup (I read reviews first), I said I had a kid who was on chemo and she just couldn¡¦t do piles of walking...

They put us in a first floor corner unit, literally ACROSS the street from the nicest kid pool/basketball court/shuffleboard area/playground ...it could not have been more perfect, we were there about 10 minutes and I was nearly verklempt at the obvious effort they made on our behalf.

The condo was gorgeous, full kitchen and two bedrooms and two FULL baths (more than we have at my house!), there was a palm tree out my window.

Happiness.

On Thursday we visited Give Kids the World, where G stayed on her Make a Wish trip in 2006. It is even MORE magical than it used to be, my girls were agog, and in a super blessing of awesomeness we got to see our good friends, the Welch family!! The day was just so wonderful...

This was such a litany during our trip, the wonderfulness, the things almost miraculously coming together for joy. I was almost (ok, not almost) worried by the end, things were just going so well...

The next day we headed to Animal Kingdom, our first trip there¡Kthe kids LOVED it! Dave and I loved it (even though it was Good Friday, so we were fasting...that was a little tough, we had Mickey Mouse pretzels halfway through the day and that got us through)...the day was magical, the safari, the roller coaster, the exhibits, Genna saw giraffes, my unofficial guide worked PERFECTLY for beating the crowds, it was all awesome.

Saturday: no rest for the weary! Off to Epcot¡Kand Rich & his girlfriend, Brianna, who we were so excited to meet. That is hard core, meeting family at a theme park. ... the day was just so great. I could go on and on (and I should write everything down so I don¡¦t forget), but just everything was great. We splurged on a fancy dinner at the Mexican restaurant Dave & I went to on our honeymoon...G was not amused by anything about it (I did forget the darkness would be hard for her), but everyone else loved it.

Phew!

Easter Sunday dawned gorgeous and sunny and with a palm tree STILL outside my kitchen window. ;) We went to early Mass at the Basilica down the road and then just enjoyed the day with Rich and Brianna . I bought a ham at Target (yes. Yes I did) and potatoes and made a real dinner. The only drama occurred during a basketball game between Dave & Andrew...you know it¡¦s NEVER a good thing when your youngest child comes running to where you are sitting by a palm tree to say ¡§mommy! Mommy! Daddy and Andrew hit heads and Daddy is bleeding a LOT!!¡¨.

Um, no. I am sitting by a palm tree. Just...no.

But yes, Dave looked like a crime scene. So. Much. Blood. All over the basketball court, all over his clothing. . . he was so upset, thinking we¡¦d be at a hospital on Easter, on vacation. . . but ultimately it was a small cut (and a HUGE swollen bruised black eye) that just bled a ton and really hurt (Andrew was ok). But yes, the ambulance had to come (once the security guy SAW Dave he called for backup. It was that ugly). I told the EMT that we are onco parents, the full goal of our trip was to AVOID hospitals at all costs!

And we did. Again, Phew!

Monday was our Magic Kingdom day...I wish I had 18 more pages to describe all the wonders of that day. There we did opt for a wheelchair for G. We had made it at the other parks without one (by the end of our tour around Epcot we joked about how ¡§Sitting in Each Country¡¨ had become the main thing we did in each land, G was wiped), but at MK she was done by the time we got to the front gate.

Using our Unofficial Guide plan, and the Guest Assistance Pass we had for G (it ended up working like a fastpass on every ride...which was a GODSEND for G, such a blessing), we blasted through the entire Magic Kingdom in an epic day.

Genna went on TEN different rides (which is huge for her), we got pineapple floats (vanilla soft serve for G the picky) and festive hot dogs for dinner, watched the parade (which was so great for G...she could see EVERYTHING), the Castle light show, and the fireworks, and then had NO trouble getting back to our car.

Seriously, yes, this was a CAMIOLO trip. And yet it was so awesome. Rosie especially loved everything, she was so little (only 3) on G's MAW trip. . .

We had to fly Andrew home early for baseball, our last day was quiet¡Xwe rented a little surrey bike which we have always wanted to do (well, 3 out of the 4 of us. Guess who did NOT want to rent a bicycle? ; ) ), then G got a sparkle tattoo and Rosie got a fancy braid in her hair. . . just such a happy day.

Our trip home was uneventful. . . and then off to my sister Emily¡¦s bridal shower, which was lovely! (ok, the day of re-entry was awful. It was a no-good horrible very bad day. But the shower was at the end of that, and the shower was lovely!). Woo!

Saturday was all laundry all the time (sigh), and Sunday was Friends of Jaclyn Day at RU!

We so love our Rutgers Lacrosse Big Sisters, G got to sit on the sideline, everyone wore purple R shirts that said Genna #1 on the back...it was just an amazing, lovely day¡Ka hard loss (almost a huge upset of a ranked team¡Xthe coach of the ranked team was so annoyed by how good RU was, yes, we heard his obscenity laden time out talk to his girls), but the girls played with piles of heart, and they fought to the end. We are so proud of them, and so grateful for all they have been for G.

And then today was chemo again. Ergh.

G hid under a blanket for most of the ride down to CHOP (after her bagel). She was crying before we got into triage. Sigh. Thank God for the child life specialist who brought G an iPad to play with¡KG was mesmerized by the fact that she could put on Scotty McCreery Pandora radio AND play Candy Crush (which she knows I play rather obsessively). The iPad was a fabulous distraction.

G did tell Dr. B that she wants to stop the one chemo that makes her feel gross. Dr. B said they could talk about it in May, and G was ok with that. I am so grateful for a doctor who so respects Genna and her wishes. I can¡¦t see that we can drop that chemo if May¡¦s scan is ok, but I so appreciate that Genna feels heard. That means so much.

The rest of the day went ok, we got in EARLY (ok, so I missed that our early appointment with another doc had been cancelled, alas), got through chemo ok (G eventually fell asleep). . . aside from a first day family being next to us (always hard, just brings back so many memories that really hurt) and a medevac helicopter landing overhead (also bad first day memories, just watching them land all night), the day went ok.

G is asleep on the couch again now, and she didn¡¦t want to eat dinner (tried, but it didn¡¦t taste good), but I am hoping tomorrow is ok this time.

So we have so very much to be thankful for. . . SO much. A special thanks to Ride 4 Erik (Norma Zimmerman) for the gift that really helped us TAKE this trip. . . and to the folks who gave our girls a gift last year that also went a long way towards making this possible. I am grateful, too, as always, for Dr. B and her stellar care of G . . . and just so grateful we got this time. Last May . . .

Well, I¡¦m grateful for this time. So grateful.

And on Thursday, Genna goes on her first ever choir tour with the high school choir. This is kind of massively huge for her and all of us, it¡¦s her first time doing a sleep away thing that isn¡¦t oncology related (and supported). Yikes. She is SO excited. So very excited. They are going to the Boston area, and she has all her official polos and choir garb and everything.

I am going to need massive therapy. ;)

Sorry this is so long¡Xbut I had to at least say some of the blessings that have come our way in the past several weeks.

And yes, I hit Easter candy clearance when I got home. No worries. ;)

I need to make Coco stop barking, G is trying to sleep on the couch. . .

Peace, and please pray for our buddy Caitlin still stuck at CHOP. ƒ¼

Peace,
k

Saturday, March 16, 2013 1:32 PM CDT

A new record for update fail…ack.

We just have so much…so much going on, some roller coaster moments as always, and I am left with no energy to type.

The Coffeehouse for a Cure was amazing this year…in some ways our best year yet in terms of turnout and raffles and music. We are learning how to do this (a much shorter evening than it used to be!). This year we had a gentleman from our church MC the night, Anthony did an amazing job. He is so relaxed in front of everyone! Genna gave a speech called “NF by the Numbers”…we talked about what SHE could say, I am trying to help G find empowerment in telling her story. Her voice is so important.

And for years, she really hasn’t looked that sick.

When you hear the numbers, her amazing mightiness becomes so clear…9 surgeries…30+ MRIs, 24 transfusions, 5 different chemotherapy protocols, 2 allergic reactions…we didn’t even mention vision loss (those are some miserable numbers, although much improved from 7 years ago), or years fighting (8.5) or anything like that. NF is a sorry son of a you know what.

We had so much amazing help this year, CCD kids, students, friends, friends of friends, we were thrilled to have Marta with us as always, and Kelly & Ryan Jarego (NF buddies from CANADA) , and Tammy and family (NF buddies from PA—running inspiration for me!)…

The performances were great…we are so grateful for all our friends and family.

We just felt really loved by how everything played out.

And in what is quite possibly the most epic example of
karmic justice EVER, the amazing Christina Ryan (who for years and years has come to sing for us, she is ridiculously good…even my 17 year old son was like, “whoa, she is really good”, which says something since show tunes are not normally part of his iTunes library, if you know what I mean)…Christina won the Kindle Fire, our biggest raffle prize. That made me so happy. 

That night we made close to $4000, and donations are still coming in. Thank you all…

I hope some year maybe someone from CTF will come out for
the event.

Around Coffeehouse time, Andrew was pretty sick…ok, the sickest he’s been in years. He said he didn’t feel good, I was all “no fever, get your sorry self to school” (I have zero sympathy for senioritis)…and then he spiked a fever and seriously in ONE day had bronchitis. Ack! G got a bad cold (likely from Andrew) but never got to the magic fever point of ER…phew. We had a couple of nervewracking days with her right after Coffeehouse. She was coughing and snuffly, and Andrew was feverish…I even had 2 days of horrible cold/cough/teeny fever. Yuck.

But everyone finally got better…Dave & I had a great dinner in the city with my sister & friends for Meg’s birthday (that is GOOD medicine, dinner with friends), and then G was back to chemo day.

This time was rough. Even with wearing a St. Patrick’s Day hat & shirt in early celebration, G was full of dread before…as soon as we left the exam room where we got the ok on ALL the meds (her protein levels were ok for the avastin to be resumed), as soon as we hit the waiting room she started to cry.

My heart was breaking, how can you comfort a kid in this position? She didn’t want to do chemo. She wanted to go home.

You know, these moments are harder than most other moments we have to negotiate in all of this.

Sigh.

She was crying and crying, I had to take her by the arm and lead her to the day hospital (and hold to my “no crying at CHOP” rule for myself. Sigh) . It was a rough moment.

Once we had her settled, the nurse and I distracted her by talking about shopping for our upcoming trip to Florida. Yes, we are having a Make a Wish redux (well, that’s what I’m calling it). Thanks to the generosity of a few individuals and the Ride 4 Erik Foundation (and a year and a half of me saving up), we are heading to Florida over Easter. I know it’s going to be Mayhem down there, but life is too short. We don’t know what tomorrow may hold. We are going to Florida. We are going to be together as a family and have an adventure in the sun.

Anyway, talking about buying flip flops distracted G, and then thankfully the ativan kicked in and she slept.
I did some schoolwork, but mostly just sat. I couldn’t even think, I was so tired and just wrung by all of this.
There is no greater reality check than a few hours in a pediatric day hospital.

But G got through…she was pretty wiped, we were not able to meet up with our friends Meri and Caitlin who are stuck inpatient right now (please pray for Caitlin, she is in a really, really tough spot. I have nothing printable I can say about brain tumors). As soon as we got home G went back to sleep.

Tuesday was also really tough for G. Maybe it was the addition of the avastin, maybe it’s just cumulative chemo, but she was willing to go to school late…and when I saw her at lunch I made her come home with me, she was sitting by herself, staring into space…no food out, she didn’t want to eat…

She slept most of the rest of the day. At 8pm she suddenly perked up (I made her chicken nuggets, a ridiculous treat for her) and she was willing to eat, finally, and she perked right up and…

yes, started doing homework. Ack!

Urp.

Wednesday was the school History Fair…G worked with a partner this year, which had some unexpected stressful challenges (understatement), but the girls won their group at the fair. G was thrilled. Next Saturday is the regional competition; G is totally ok if she does NOT advance to states, it stressed her out last year. School is a source of intense and constant anxiety for G. We collectively cannot wait for summer!

Although honestly G will be freaking out about her summer work on the FIRST DAY of summer vacation. Alas!

We did all rejoice in our new Pope this week. That was a source of great joy for us.

Phew. I need to NOT wait so long between updates.

It is snowing, I need spring. The bulbs are coming up, the snow is coming down. Eek!

Thank you all for supporting our family. Thank you for praying for us…and please keep praying for G, and Caitlin, my student Bernadette, and Joe Pascale, a young dad who really needs prayers right now.

Peace,
k

Wednesday, February 27, 2013 7:50 AM CST

Hey, all—a superfast update, I am drowning in school/coffeehouse/life.

Yesterday was Sandra’s birthday. We love her and miss her every day, especially in Coffeehouse week, she was so awesome at the Coffeehouse. Hugs to all the Blumbergs.

Rosie’s scan on Monday was stable. She is a trooper, the IV and the hour and 45 minutes lying perfectly still are hard for her, but she is so mighty. The scan report was … not super satisfactory to me, one area of oddity that now is called tumor wasn’t mentioned, and a new spot that isn’t actually new was now referred to as tumor…this is the reality of NF, there is so much oddity associated with it that deciphering a scan can be a challenge…I always hope to get the same radiologist as last time, but that did not happen.

At least Dr. B had her friendly visiting Italian neuro-radiologist friend there on Monday (we’ve met her several times before), so she looked through the scan for us too…everything is stable. It’s just really stinky to see that even my healthy NF kid has odd things going on inside her beautiful head.

Normally I practice very disciplined denial about this.

So yesterday I was road kill.

We saw our friend Meri in clinic, her daughter Caitlin (Rosie’s friend from camp) was inpatient due to some odd symptoms, it was good to see Meri but so hard, we all know the reality of this and at a certain point there is just nothing to say other than we love you guys and we are here for you. Monday evening Caitlin had an MRI that showed new tumor, she had surgery yesterday. We are in knots of worry and sadness with this, even in the face of Rosie getting a 6 month reprieve…sigh.

Again, this contributes to road kill-it is.

I hate brain tumors. Please pray for Caitlin as final pathology gets done.

G still could not get avastin on Monday, but her numbers were nearly back to normal. Getting her to drink a lot has been a big challenge. She was VERY needy on Monday, her iPod wasn’t charged, her headphones broke, I was with Rosie while Dave was with G…it was not a super awesome day, she had trouble falling asleep, then she was done with chemo (feeling gross) while we waited for R’s results…it was a long hard day.

And we are in the home stretch for our Coffeehouse. I know it will come together, but I am drowning…due to a schedule change I DO teach on Friday, originally that was my half day off the schedule…alas. I need a snow day or something. But it will all come together and we will try to raise some $ for research. The Coffeehouse is this Saturday at 7 pm at St. Mary’s Stony Hill, $6 a person, $15 a family, reasonably priced raffles (I hate overpriced raffle tickets, I want kids to be able to buy some), good music, lots of donated cookies (long gone are the days when I could make 1000 cookies alone—it takes a village to bake a Coffeehouse, I guess)…my kids are excited.

We did tell the girls that we are taking a surprise family vacation over Easter—the time is not ideal, but between G not being able to miss school (her anxiety is such that she would not enjoy the most fun trip in the world if she was missing more than a day of school) and Andrew starting baseball, we have to mush a trip in. Thanks to the generosity of some folks last year at our Coffeehouse (who gave us a gift specifically for each of the girls , to get something for them), and the generosity of the Ride 4 Erik crew (Norma Zimmerman, thank you), and a year of saving up since G had to restart treatment, we are taking the children to Florida. Rosie doesn’t remember G’s Make a Wish, so we are taking the kids to Disney for a few days, we’ll get to see my brother for Easter, and hopefully just have a blest time. There are details to iron out (um, the furball? Sigh), but we finally just decided to go for it.
Life is too short. We are not promised anything, we are not promised tomorrow, and several of our friends have recently had ugly reminders of how things can change in a day…

So we are carpe-ing some diem and heading south on a massive road trip that hopefully will be good.

I seriously have to go do schoolwork, I am drowning. Just drowning. But I hope folks can come out to our Coffeehouse…we so desperately need better treatments for this horrible disorder.

Peace,
k

Tuesday, February 12, 2013 7:42 AM CST

G-foRce! COFFEEHOUSE FOR A CURE FOR NF: Saturday, March 2, 2013 at St. Mary's Stony Hill in Watchung, NJ at 7 pm ... music, raffles, cookies and fun...all to benefit the Children’s Tumor Foundation. Please join us!

Hi, all—

STABLE! The entire report reads stable...AND "the nodule abutting the right foramen of Monro has decreased in size, in T2 signal intensity and in enhancement”". So the part that was catastrophically huge last May is, for the 3rd scan in a row, smaller.

Of course it isn't as dramatically smaller as the last 2 times, but to get ANY shrinkage 3 scans in on Avastin is insanity. I was hoping for all stable. This surpasses that.

This, of course, is great news.

Genna, of course, still had to do chemo, and started to cry.

Sigh.

But it is wonderful news, our doctor is very pleased. We did also discuss some of the ongoing issues G is experiencing due to this chemo; once again we had to hold the Avastin because her proteins were stupid high. Some of that may have been exacerbated due to the pre-sedation fast, but we need to try and get G to drink 2 liters of water (or something) a DAY for the next 2 weeks.

Yuck.

We also discussed possibly eventually dropping the temodar if things continue to go ok AND if we can restart the Avastin. Temodar has risks of secondary cancer. We needed to throw EVERYTHING at our situation last May, but I would like to maybe remove this risk factor if I could. We will re-evaluate this at our next scan, which will mark one year on this protocol. We will also check a few other things next time we go. Sigh.

G was so wiped yesterday, MRI intake was running late (apparently I was verging on extremely scary about that—yes, I married into a chronically late family, but I HATE being late, it gives me massive anxiety, it's so rude--we had scheduled port access for oncology clinic, so putzing around in MRI registration/waiting area for 45 minutes put me very close to the edge), we had had to wake up at 4:30 to leave in freezing rain/ice at 5 a.m.—we were verging on miserable before we started. Finally we got up to onco (our safety land. It’s bizarre but true, seeing one familiar face in oncology just helps everything seem better—and they had worried a little when we didn’t show up on time, ahem), G got accessed, we got back to sedation, she fell asleep fine, the scan only ran 4 minutes past my Start Pacing NOW mark, and then we went up to clinic to wait. G fell asleep on the little couch thingie, so when Dr. B came to find us we had to work to wake G up...she was a bit emotional before we started.

I was about to lose my lunch, we had passed THAT milestone of "Cue Nausea Now" by about 30 minutes.

But even G, who did NOT want to hear results, was pleased, at least until she realized again that she had to go get her chemo.

I can’t bear that for her. I can’t bear the discomfort, the ew of what the 4 meds she had yesterday do (3 pre-meds and a chemo). So while Dave & I were all WOOHOO relief yay phew and G still has to battle.

This is why we are perpetually lost these days. It is so hard to watch your kid struggle and suffer all the time, to fight constantly to help the child and to never be able to gain a whole lot of ground. We embrace each small victory, just the battle is so huge. G puts on such a good face (a genuine face, she is never fake) out at school and in public, but she is struggling all the time. Her medical situation is an Everest, and the summit is always just another icy climb away. I am so grateful for the people I know (who of course don’t live HERE, alas—with a few exceptions, and I am so grateful for you few here, I am so grateful) who get this, who get the pain, who don’t judge us because of it. It makes me feel less insane when everyone here is like “whoa, that girl is a rhymes with unprintable, why doesn't she ever get over it, look at how great her kid is doing” when I see next to me on this desk that even a scan that is stable and hooray mentions more than half a dozen brain locations in discussing all the tumor that is stable. Not gone. Just waiting.

More than half a dozen.

And see, I thought waiting to update until this morning would have me more together and less crazy lady. Oops. :) .

Last night was brutal, G felt awful, Dave & I both felt horrible from lack of sleep & food, and then Dave lost his keys with his work passcode thing on them, so we were digging through snow trying to see if he dropped them outside (found them this morning in the ice by our recycling bins, thank God). Sorry. I just needed to get it out of my system and move on.

G did eat a bag of Doritos and plan to celebrate. And we will celebrate, I know Lent starts this week, and this year I am determined (as every year) to NOT fail at Lent, to actually attempt to better myself in some way for the greater good, but we are going to celebrate. This merits celebration, even if in this minute I feel like road kill.

We need to really get on our Coffeehouse prep, my preliminary set list is done-ish, I have baked zero cookies and have only arranged baskets and designed raffle signs (I make the display pages for all the gift cards we receive), nothing is actually WRAPPED yet. Yeeks. We would love to see folks there, please come, it's a fun night and we do have some great raffles (even if they aren't wrapped yet). This is our big CTF fundraiser of the year, and even though I am barely together enough to SPELL CTF, this night is important and we hope it is awesome. People have been so generous…as my Rosie said, "mom, people say so much bad stuff about New Jersey, but everyone is SO generous here!"

Yup.

Of course Monday before the Coffeehouse is Rosie's scan day. No respite on that front.

SIGH.

But this is the reality of NF, of life in a family that has NF. So we will try to just keep chugging through.

We thank you all so much for your ongoing prayers and support, the 4.3 people who still check in here, it means a lot to us to know that 8.5 years into it, people are still standing with our brave girl. That means a lot to us. You all make a FABULOUS support crew.

Please pray for all our friends, we have so many battling right now, just so many.

Peace,

Kristin

Ps. I really tried to focus my yikes yesterday into prayer for a young man named Joe Pascale. I went to high school with Joe's older sister (she was a year ahead of me) and her brother (a year ahead of Dave—and super cool because he could sing barber shop quartet music, which says something about my eclectic musical taste as a teen, right? Ok, and now, I still think it was awesome). Anyway, Joe really needs prayers and support. Years ago we were given a book about St. John Neumann, a saint who happened to live in Philadelphia (we have visited the church where he worked), and in this book of miracles attributed to his intercession was a story about Joe when he was a young child. This story gave us a lot of hope, since we knew who Joe's family was from years and years earlier…and we had so little hope then…

Now Joe is facing an intensely difficult medical situation, and he has a wife and 2 little kids…if anyone can visit his website and help or just add prayers to the pile, that would be great. I prayed so much for Joe yesterday…and his family who are caring for him right now…
www.care4joe.com . Thank you.

Monday, January 28, 2013 7:54 PM CST

Howdy, all-- I can tell the formatting is weird, not sure why, I am sorry, I have zero time to fix it now...sorry!

Not sure where to start. . . Arctic tales? Chemo Day? G Triumphing Over Daily Obstacles? Coffee & Songs for a cure in just 5 weeks¡¦ time?

The moral of THIS story seems to be that I should update more often. ƒº

In business news, today was chemo day (I will get the unpleasantries out of the way first). We left crazy early, got our bagels in Flemington, arrived safely (only flurries near Philly, no scary ice), saw Dr. Matt and met Dr. Lynn, who G will be meeting with now due to schedule changes. G was FLYING this morning because her wonderful science teacher texted us last night to let her know that she had gotten a 96 on her science midterm! SHE WAS FLYING last night, just kept giggling to herself about it, this morning she was chipper and perky talking to Dr. Matt (I¡¦m not sure he¡¦s ever seen her like herself), she told EVERY nurse/child life specialist/tech/doctor/human being that we saw all about her science grade.

That act of kindness, telling her the night before chemo that she did so well on this test she studied for for 87 hours? It¡¦s hard to express what that meant to G. No joke, she was smiling about it until the very moment we had to plug her in for chemo.

G was giggly and happy and all. . .we had a good chat with Dr. B, unfortunately G¡¦s kidneys are showing some signs of Avastin toxicity, so we could not do Avastin today. G still got her irinotecan, and I will start her Temodar round in about 15 minutes. Our doc wasn¡¦t super concerned, this is pretty common, but we did reach the point of Do Not Do Avastin Today. Sigh. 10 rounds in, I guess we were bound to have SOME side effect, right? She has tolerated this ridiculously well, and we feel really blessed/lucky/relieved about that.

I am just a speck freaked out after researching Avastin toxicities, some other issues have me a bit on edge¡Kbut hey, chemo is like that. Meh.

That said, she did manage to sleep today during chemo, and we left CHOP at TWO PM!!! 2. O¡¦clock. Egads! We were home by 4, the promised ice/sleet was just rain, so no big deal. Woo!

The logistics of today were extremely yikes , but getting home early made life easier all around.

We return to CHOP on 2/11 for Genna¡¦s MRI. Yikes. YIKES. And then Rosie¡¦s scan is on 2/25. YIKES.

In MUCH jollier news¡KSaturday David (and Ceril & her friend Sonja) jumped into the Atlantic Ocean for Camp Sunshine!! As a team we raised over $1000, which is all thanks to YOU!!! The day was SO COLD, oh it was cold, the weather has been brutal here¡Karound 20 degrees at plunge time, the water temps were in the 30s¡Kso cold¡Kand so awesome. It was so good to hug some camp friends, see the crowds of crazed maniacs leaping into the surf (ok, the ocean was super calm, but yikes!)¡Xjust everything about it was awesome. At plunge time the plungers had collectively raised over $70,000 for Camp!! That¡¦s almost an entire week funded!! WOOO!

In related jolly news, Dave and I DID get away for the weekend, and we actually managed to do NOTHING for an entire day. I read the New York Times (now I feel smarter). We TALKED. I said hello to a sheep. Yes, this involved saying Baaaaaaaaaaaaaaaaa. It was such a blessing to have 48 hours just to remember that hey, we were friends before we did this whole parent thing. ;) A great reminder, and I am so grateful to my parents for helping out with kids & dog.

G did NOT get Rosie¡¦s fever¡Kso PHEW! It¡¦s remarkable that so far, G has only had a cold (knock on everything). Yay.

Finally, we are now past plunge and into Coffeehouse preparation. I am so behind already, between double scan month coming and my first year teaching US I, I am drowning just a speck. But we already have some awesome items for raffles, some great numbers planned (ish), and a lot more requests to make! If you are anywhere around St. Mary¡¦s Stony Hill on March 2 (7 pm) we would LOVE to have you join us for our Coffeehouse.

This has been an unbelievable year, in so many ways, both good and bad. The Coffeehouse is our main fundraiser for CTF, mostly because I never seem to manage any other thing¡XI always have ambitions to do more, but¡Kalas. So this One thing we are going to try and make awesome, and we are so grateful already to everyone who has offered to help.

I promised Rosie some ¡§post-chemo-day-snuggle time¡¨, she does NOT like hospital days. Better go be mom.

Thank you all for praying for us. We deeply appreciate your prayers. Even on the very dark days, the days (oh so frequent) where things just seem really hard, we are so grateful for your prayers. G¡¦s spirit is what it is because she is sustained by the love of so many people.

Thank you.

Peace,

K

And ps. Happy 70th birthday to my father in law, John Camiolo!

Wednesday, January 16, 2013 2:33 PM CST

Howdy, all.

G got through another chemo day. This one was a logistical yikes, but we managed. Thankfully my sister Elizabeth came with us. We left at 6:15…I cannot WAIT for the days to get longer, leaving and coming home in the dark is such a bummer. At 7 the first doc we were supposed to see called us, he was sick and had to cancel…alas…but what can you do? So we were nice and early…but Dr. B had planned for us to be seeing that doc first…can you see how this played out? Ergh. At least Elizabeth got the full Experience of Much Sitting that CHOP trips tend to be.

G’s labs look great (her counts are ridiculous), her proteins are still ok (apparently a more significant concern than I realized, if they are off), her bp was ok…Nurse Cindy made sure we got in to see Dr. B in time for me to run 6 blocks to meet with another doc (I have to stop missing work)…G looks great, she got her questions answered…we were whisked off to the day hospital and just as she got plugged in I left her with Elizabeth and raced off.

I found the other building fine, I had so much anxiety I monster power walked there, felt like the old days back at Rutgers (especially since I was walking through UPenn and Drexel areas). My meeting with Dr. Armstrong was depressing but informative. Last year’s growth did some damage for G learning, on top of years’ worth of struggle…
These meetings are always hard, and they always get harder as I ponder them longer.

But we will find a way to help G. I just think I have to start pondering alternatives for after high school…which is presumptuous, right? But oh, how desperately I want to presume…

Yes, it is gray and sleeting and a depressing day, I should NEVER post on this kind of day, but I had a little time now…
G did well with her chemo, almost no side effects AGAIN (which is insane), we had minimal traffic on the way home, the day did not utterly rot, except for the meeting.

Phew. Another one done.

G is in her first set of midterms this week, a real challenge especially in light of what I learned at this meeting. Sigh. She has been freaking out (yesterday she made 83 index cards for her English exam. Eighty. Three.), but I think she is sort of pulling herself together.

Today’s drama is Rosie has a big fever…started out as headache/stomachache/tiny low grade fever, now she’s full blown 102.6 kind of fever….aside from work yikes (thankfully I had off today, I proctor exams tomorrow), and the fact that poor Rosie feels awful (and the dog is so confused, she keeps wanting to snuggle with Rosie) , we Cannot Let G Get Sick. A fever for G means ER now.

And Dave and I are trying to get away this weekend. We desperately need 48 hours of nothing. I plan to mindfully Do Nothing except maybe have uninterrupted conversation about life. It’s been 2 years, and things have been so hard this last year, my parents offered to watch the kids AND the dog (yes, that is staggering to all of us, including my parents! ; ) )…we desperately need this.

But if G gets sick, all bets are off.

Ergh.

We’ll see how things go, but please pray…

I also set up both scans now, G goes 2/11 and R goes 2/25 (and hopefully G will get chemo that day, too, if 2/11 goes ok). February looks to be freaking awesome!

I am also selling lovely bridges across the East River, if anyone is buying…

And then our Coffeehouse for a Cure is set for March 2! Yikes. I am so behind on everything, but I am also so grateful for people donating things for our raffles, friends making things for raffling, friends making phone calls to help with details, family pondering what we can do to make it Awesome…I have some ideas, I just have to get moving.

If anyone knows anyone who can donate stuff, or if you have any brainstormish ideas for how to make this event awesome, please let me know!

I have to help G study for history, a giant multiple choice test (the worst kind of test for her, apparently, SIGH), I think I made my US I exam too easy, ugh (and yay, I am sure, from the 10th grade!), and I need to get my 2nd quarter grades done. Things move on…

This is such a lame update, but I like to try and update after chemo days…but the dog is barking at a car, G is talking to me about exams, and Rosie is feverishly asking for Gatorade every 2 minutes. I am not that focused. ;)
Peace out, all—

OH WAIT! I forgot, Dave is jumping in the Atlantic NEXT weekend, if anyone has 2 dollars to throw at this, we would be so grateful, he is Polar Plunging for Camp Sunshine in Maine, our respite/haven/joy. I still have the keychains I promised everyone last year…sigh, FAIL FAIL FAIL, this year I am only promising gratitude, that I KNOW I can deliver. ;)

Peace,
k

....AND I FORGOT THE LINK. SIGH.
www.crowdrise.com/G-force is it. Thank you!

Friday, January 4, 2013 7:09 AM CST

Happy New Year, all!

I am determined in this new year to keep more up to date here on CB and on my blog-of-non-medical-stuff-that-so-often-turns-medical. I wouldn’t call it a resolution (since those, of course, are made simply so you have something to feel guilty about!), but I am Determined.

Well, most of the family had a lovely time at the family wedding last weekend…except that I got a wicked awful stomach bug THE DAY OF THE WEDDING. Sigh. SIGH. I am still really disappointed, trying to just move on…but it was sad. We so rarely see all of our family, and we so love Jon and Ellen, and we had literally been looking forward to this for a YEAR. Dave kept calling to see if I felt well enough to come…he has hardly ever had a real stomach bug in his whole life, so he didn’t quite get the level of “I am literally puking my brains out every few minutes” thing that was going on here.

Hopefully nobody was eating. I am sorry.

ANYWAY, that kind of put a damper on the rest of the weekend, I felt like road kill, and then we were back to chemo day. At least as of yet I have kept the girls healthy (oh, Purell, how I love thee!).

This one was really hard for G. Really. Hard. We thought the day would be great, no traffic, we got to leave at 7:45 (which is blissfully late), we were seeing the nurse practitioner so we figured things would zip along…yeah, not so much. We hoped we would zip through and get home for the end of Grandpa C’s 70th birthday party…

2.5 hour wait for the nurse practitioner. Then some of G’s levels were a bit concerning, not YIKES, just something to keep an eye on in the pantheon of known Avastin toxicities, so that was a discussion…it was kind of nice to meet the doctor who talked me through all the consent forms for Sorafenib last year, she is great. Finally we got to the day hospital, but by this time G was already nearly beside herself with how long everything was taking…

Her pre-chemo dread has gotten worse each time.

The pre-meds were not quite as magical this time, the order was changed slightly and G took longer to fall asleep, she was just crying and saying she wanted to go home…

And a Happy New Year to you all, too, right? I am sorry.

This day was hard.

I really don’t write this down to complain. I think it’s important to acknowledge (and record so I can remember) what this really all IS. We are so grateful for this chemo that works. We are so grateful that we are not in the spot we were in this time last year, when I was frantically waiting for the go-ahead for the experimental drug. We are so grateful that G is doing so very well on this protocol…and yet I think it disrespects how mighty G is to not acknowledge the hard days, too.

Emotionally, it is hard for G to do this, much harder than it was when she was 7.

That said, we got through the day, and when we left she was SO HAPPY to be done, we got a 2 second hello to the family at Grandpa’s party before everyone left (sigh, didn’t get home until nearly 6:30) and then we went to my sister’s to ring in the new year. I was so wiped out emotionally from trying to help G, getting to be with my sister and brother in law and my other sisters and some dear friends just was the best medicine ever.

We are back at school now, I am still behind and overwhelmed and trying to figure out which end is up, but 2013 is a fresh start. I don’t want to presume that it will be awesome or terrible, it will be what it will be, but I am determined to just keep going as best we can. Last night G had her first Youth Group holiday party, she was SO EXCITED to wear her fancy dress and her sequined boots, she was flying when she came home, she didn’t even fuss about taking her chemo…today the girls have a fest at school, there are smiles and joy around. I hope that in 2013 we can continue to find smiles and joy amidst the battle…

And hey, I still have a lot of leftover cookies, that ALWAYS helps with smiles and joy. ; )

Please remember all our battling friends…especially Amie & Emma, Bernadette, Camila, Isaac, Jaxon, Michaela, Hailey, Gabbie, Maddie and everybody else …there are so many, just way too many.

Peace,
k

Wednesday, December 26, 2012 1:39 PM CST

Merry Christmas, all!

I have again been so remiss in updating…I have been just non-stop for the last few weeks, and today is the first day
I really have stopped moving.

G is doing well. We pushed back chemo a week this time so we wouldn’t have to go on Christmas Eve day…not gonna lie, I am very glad we had a week off. I think G can use the break, even though she is really disappointed that now she is going to miss Grandpa C’s 70th birthday party on Monday (and likely New Year’s Eve festivities). I feel bad, but we have been SO lucky in that chemo has not really made her miss anything huge in the last year…we really have to go next Monday. We had already scheduled it before the party time was set…alas.

Beats last New Year’s Eve day, when we were doing a “pre-chemo hope the shunt revision held up ok so we can use this as a baseline for the chemo trial” kind of day.

Anyway, G’s last go around went better, we talked to Dr. B about some of the issues G was having and she suggested we might give G some pre-meds to make things easier…and thus G slept through chemo. She was SO MUCH more peaceful…I was grateful. As much as I hate the idea of this route, having her just sleep peacefully through that which gives her such anxiety and discomfort was a relief for us both. Normally she kind of scrunches up in a ball and looks sad while she’s trying to sleep…this way, she just slept peacefully.

We have a few other things we might need to follow up on, side issues related to chemo, things G was wondering about ( a new moment, for G to want to pursue certain questions—kind of bittersweet). We will deal with them in the new year.

But Christmas was really lovely here. Sooooo busy, but really lovely. We did Christmas with my parents on Christmas Eve as a light snow fell (we had a speck of a white Christmas!), and then a low key morning just us (my favorite, all time joyous, wish every second of my life could be like that kind of morning), then Andrew got an awful stomach bug (sigh), and then my in-laws and Dave’s 2 brothers & sister and their respective families came, and Rita B…it was really lovely, very hectic (oh, the cooking!), but just a happy fest, aside from Andrew being sick. We got to know the newest nephew (and his momma!) better, got to see our beloved fam who moved away years ago (I told my godson I needed to know where my little Owen was, this big Owen must have eaten the one I knew. He was so cute trying to convince me HE had simply GROWN and HE WAS THE OWEN! : ) ). Beautiful times.

Rosie said, “this was the best Christmas ever”.

By 11:30 pm Andrew felt better, he seems to be perking up today. Now we are praying nobody else gets it, we have a big family wedding on Saturday!

We are very blest this year. When I remember how hard last year was, and how uncertain this Christmas had become, I am so grateful. The pain of last year is hard to explain…seen from the light of this year…sigh. We are grateful. Overwhelmed a bit as always, but very, very grateful.

Today we are having a quiet day, the kids are watching Elf right now, and we are planning to surprise the girls with a trip to the theater to see Sound of Music (it is pouring snow right now, but I think it’s supposed to switch over to rain). We are just having a quiet quiet day…

And I am grateful.

Merry Christmas to all of you…praying your new year is blest, and that we find health and hope in each moment of the coming months.

Peace,
k

Wednesday, December 5, 2012 2:17 PM CST

Hello, all.

So tomorrow we have an eyeballs trip to CHOP, we need to BE THERE at 8:30 (ugh). Gotta get those St. Nicholas Day shoes out REALLY EARLY. I am not looking forward to the extremely early/trafficky drive. I am not particularly worried (hopefully not famous last words), everyone’s eyes seem pretty stable. G is hoping that we can get home in time for her to hit the afternoon at school. Rosie is hoping to NOT get home in time to go to school. ; ) Her teacher has been very ill, and a month’s worth of substitute teachers has gotten to her. We’ll see how the day plays out.

But really I am updating because a year ago today we learned that some of Genna’s tumors had grown, particularly that part right smack in the middle of her brain. A year ago today I had to break it to her (nobody else ever volunteers for that) that we were not only going to have to restart treatment, but that she was likely going to need surgery the next day. She started to cry, and I started to cry, and we just hugged each other.

That night in our hospital room, reeling from this turn of events and terrified of what lay ahead, I mushed into the bed next to G…she is so much bigger than that first awful night back in 2004 when I did the same thing…but she still needed me right there.

This year has, if you will pardon my use of the vernacular, sucked.

Last Advent was a misery, Christmas was so hard, not knowing if we would get to do Christmas again, not knowing what treatment would be best, weighing our options, finally choosing the trial…which was an EPIC FAIL. Truly, an EPIC. FAIL. .

Sigh.

A year later, I am grateful, grateful that we learned from the trial, grateful that the damage done with that has been resolved with the Avastin/Irinotecan/Temodar combo…grateful that G has been able to start high school…grateful for many things.

And in the same moment, this last year hurts. A lot. Dave and I have had a really hard time this last year, just knowing how serious this all is, how dire, how…marthonish. It’s been extremely difficult. We are so tired, and broken.
But still, we look at G, her smile, her bossy-pants-diva-queen-goddess-Jersey-Girlness, her compassion, her perseverance. She is so mighty. This is so hard, and she is so mighty.

So we fight on. Or slog, or march, or some days dance…but we are grateful, one year post relapse (I don’t know what else to call it, even though the tumors were always there, it’s not like they just appeared again)…we are blest to be privileged to keep moving on.

Peace to you all, and thank you for all the love, support, and understanding this year. I am sorry that we are so…scary?...we ARE grateful, just worn down. Thank you all…my Genna feels so loved by so many, and for me and Dave,
that is everything.

Peace,
k

Tuesday, November 27, 2012 7:55 AM CST

Howdy all, and Happy After Thanksgiving—

I am still not back on my A-game post Hurricane, but life continues on.

We did have a wonderful holiday with family, two of my out of state sibs came (with their significant others, so it was a festive time), the girls helped me bake our first ever lattice-topped pie, we tried a new “Pilgrim Pie” recipe (think pumpkin/cream cheese icing Whoopie Pies—YUM times 52,000), and we generally had a great day. Rosie & Dave & I ran a Turkey Trot in Morristown, and Rosie had a new personal record of 39:06 for the 5k. Way to go, Rosie!

And since I have not run much since Philly, I got to remember muscles I forgot I had over the next few days. Ow.

Yesterday was a chemo day, our first regular trip back after G’s 2nd in 8 years miracle scan. The scan report, while naming about 57 brain parts affected by tumor, actually used the words “significant decrease in volume” in referring to the part that grew so massively back in the spring. Um, those are not words you see in radiology reports. Our doc was almost giddy, as were we. I mean really, THIS IS INSANE! Smaller…

And I know, I know with Avastin how things can work out long term, but we had to get this part smaller, it was so critical, and to have shrinkage 2 scans in a row is even kind of a huge woohoo for Avastin, so we are thrilled…

At the same time (and I know this is incomprehensible to people outside of onco-world), I was still plagued by a deep sense of sad in the days following the scan. Ok, once I got the report a week later I felt better, but those first days are always rough.

Why? Well, there are still acres of tumor in there. We are so blessed, and at the same time we understand the context of that blessing.

We also have so many friends in deep crisis right now; friends we met at Camp Sunshine this summer who are loving their baby boy as he struggles through his final days…friends starting treatment…and one brutal new diagnosis that had us all reeling here last week (my poor G is so sad). We are SO LUCKY and blessed and grateful, and in some ways I think that just opens emotional room to grieve for our friends. Does that even make sense?

So if you saw me in the days post scan and you are thinking, wow, she is MENTAL, well, you are right, but it is not without reason.

In that vein, I actually finally filled part of my bargain with God made for G’s August scan, and I went to the doctor for the first time in 11 years (for a regular checkup, I’ve been for PTSD related “I am dying of a terrible disease!” moments that happened every August for 3 or 4 years). I am still kicking, and feeling relieved to have finally gotten this out of the way. I will also not give anyone Whooping Cough or Diphtheria now, so you can rest easy on that front. You are welcome. ; )

ANYWAY, G had chemo yesterday. It is getting harder for her, the emotional side of going. She just has this sort of feeling of dread about it, but she is mighty as always. I do get her a bagel on the way every time now, she often won’t eat once we are there (yes, this is Genna I’m talking about), and the bagel makes her happy.

We got through her first appointment and then only had to wait a little while to see Dr. B . That was a jolly time as always, and it was admittedly jollier since we were in a post-good-scan-haze. I have fewer neurotic questions when we’ve had such good news. Still, I came up with a few things. ; ) Thankfully, Dr. B answered all my concerns, we are going to try some simple things to relieve G’s crime scene style sneezes (Avastin has messed with her nose a bit, I am not kidding—G sneezes crime scenes. Ew. Sorry if you were eating while reading this), and run a few extra blood tests next time to check on a couple of things just to be proactive.

G kept proudly telling everyone about her report card…all B’s and a few A’s…she works SO HARD, 50 times harder than most kids, it was a joy to watch her tell every.single.person.we.saw. ; ) And everyone rejoiced with her.

Oncology stinks, but there is something to be said for doing the most awful thing surrounded by a lot of love.

After Dr. B we zipped over (ish) to the Day Hospital, we were in a new pod today (our first time in D. Oh, the excitement). G was struggling a bit, she hates getting started…but everything went ok, the zofran, the avastin, the atropine, the irinotecan…and then G started to get all yikesed.

Something tasted bad. I am not sure what happened, but she couldn’t sleep (she was so exhausted during the first 2 drugs, but she won’t let herself sleep until the Avastin is done because the blood pressure checks irritate her), she kept saying she could taste a horrible taste…ugh.

The nurse said it was probably the atropine, which G is taking to help with a DIFFERENT side effect…after yesterday she decided she’d rather be sweaty and have to change her clothes than have that horrible taste for hours again. We tried a jolly rancher, ice water, finally at home I gave her ramen noodle and the saltiness seemed to help. It wasn’t a big deal, but she was NOT amused.

We made good time getting home, only about 2 hours…G had some discomfort, but she perks up REMARKABLY once we are leaving the Day Hospital. She’s a different kid. Aside from some minor ugh, she wasn’t too bad last night(the taste was making her crazy), she had her Temodar before bed and did well. We have 4 more days of Temodar at home.

Phew. She bopped off to school this morning in the snow.

Next week is our one year since relapse mark. I am just so full with all that this year has held…relapse…shunt revision…chemo trial…trial FAIL (epically; hearing our doc tell another visiting doc about it yesterday was still scary to me, it was so bad)…very dark days…new chemo…miracle scan…tolerating what is supposed to be awful really unbelievably well…

And in the midst of all that, Camp Sunshine, Confirmation, 8th grade graduation, Lake George & Camp Sunshine again, getting a puppy!, Ronald McDonald Camp, starting high school…

It’s gonna be one heck of a Christmas letter this year, isn’t it?

Thank you all for standing by us this past difficult year. While so much of this is still very painful, we are grateful for the privilege of fighting on, of having my kid finally start to ack like a teenager (I am so happy to be exasperated!), for getting to have another Christmas. Last year I wasn’t so sure.

Please pray for all our friends…especially Kerri and her baby Kai, my friend Amie starting treatment, and our friend, the new diagnosis…for strength and might…

Peace,

k

Monday, November 12, 2012 7:37 PM CST

I know, we had a hurricane, no power for 10 days, mayhem, 2 weeks off school, general chaos, etc. I had no internet, and then just was so sluggified I didn't even know where to begin to post.

But today was scan day, and I am boggled to say that for the SECOND SCAN IN A ROW WE HAD SHRINKAGE.

Yes, this is Genna Camiolo's page. You are not in the wrong place.

We are agog and huzzahed and all that. Most of the tumor areas are stable, and the key areas in the middle of G's brain that necessitated the restart of treatment seem to be smaller again. We do not have the official report, but our doc talked to the radiologist and we looked at the scan together.

wow.

We are now the poster people for Avastin/Irinotecan. Our doctor was almost giddy (as were we), this is just unbelievable how well G has responded to this protocol.

While this day was epically long (left in dark, came home in dark), and I now feel like garbage, we are so grateful. Just so grateful for the privilege of getting to continue to fight.

We also got to tell the long version of G's journey to a medical student from the Netherlands on her first day checking out CHOP. She still wants to be a doctor after talking to us, so that's good. ; )

I need to eat something before my body completely implodes, and I need to snuggle these girls and get everyone to bed...

But we are so grateful tonight. I don't know why we get to be so lucky right now, but I am grateful.

peace,
k

Friday, October 19, 2012 8:16 AM CDT

Hey, all—

This has been A Week.

Monday was an early CHOP day for us (had to leave home by 6:30), G was in a bit of a Monday morning funk, but she was a little pleased to be able to tell her friends at CHOP about her first choir concert at school AND Coco’s big TV debut on Animal Planet’s Too Cute show. If you go to Animal Planet’s website you can see clips from Coco’s show (she is in the scenes with the baby goat)…although you can’t see Rosie and Genna’s “2 minutes of fame” (Rosie’s words) from “adoption day”. In an extremely silly note, the Child Life Specialist in oncology had randomly seen the episode, and had that moment of “holy cow, I KNOW those kids!”…which G found Very Impressive.

But otherwise, G was in a funk.

I was trying to grade papers when G said, “I hear Becca!” I hadn’t heard anything, and I didn’t see G’s buddy from Camp, but G declared, “I am going to find her!” and left. Since she was in a funk, I figured she could wander…but then a few minutes went by and she didn’t come back, and I had visions of her wandering the labyrinthine halls of CHOP, so I packed up my stuff and went in search of her…

She HAD , in fact, heard Becca, and they were playing on the Wii on the west side of clinic. Ha! This perked her up quite a bit.

Eventually they wandered back over to the brain tumor /NF side of the land, and G made a sign for Dr. B’s door, since it has become a running joke for us that the new “model” room Dr. B is in is extremely blah. That’s actually the nicer word, Dr. B has referred to the sickly beige color in more medical terms. ; )

And then…we were in! G looks great, all her neuro-checks seem good, she was quickly done and ready to go back to the art lady in the clinic. I took an extra minute to talk to Dr. B about unvaccinated kids and Genna, since that’s going to be an issue in a few months, and I am not willing to risk G’s health because other folks are willing to risk their children’s health (but let me tell you how I really feel). On that front, I just have to say I really, really love our doctor.

Almost immediately the Day Hospital was ready for us—and G was in. She slept almost the entire infusion time, which I felt glad about. I talked to Dr. Matt for a bit while G was sleeping about how we can continue to help with the anxiety stuff G battles so constantly, and I think we have a plan, so that’s good.

By 2pm we were DONE. Unbelievable. Why some days are so fast and some are so slow I’ll never know.

When checking out, we found out that Chandra ( the scheduling lady I always talk to for all my girls’ stuff) got a different job in CHOP (sounds like a promotion), I am glad for her but I am going to miss her. Thankfully she happened to walk by just before we left, so we got to give her a hug.

That’s 2 clear signs you’ve been doing oncology too long: 1. You have a favorite scheduling lady and 2. You ask if you can hug that scheduling lady goodbye. Hey, even for me, the Queen of Personal Space Measured in Acres, sometimes hugs are just the right thing. I have learned this now.

We got home in great time, and except for a near migraine for me, the day was pretty good. G had a full bore linear meltdown over school stuff when we got home, bad enough that I contacted her doc about some management ideas, but eventually the day was over.

And Tuesday, sure enough, G bopped off to school.
I have no idea why she has tolerated this protocol so well so far. I know it should get worse. She’s definitely more tired, etc., but she is holding up SO well, there’s really no explanation. The little girl next to us in clinic was having some significant issues while in Day Hospital with the same med G was getting. So I know we are stupid lucky on this one, at least for now.

We scan November 12, so…yeah.

And then, Tuesday night Andrew had a fall ball game, Dave actually came home so he could go to it (ie and so I didn’t give Andrew my car, I don’t like the idea of him driving 40 minutes home late, and he has to be in by 11 according to NJ state law). Andrew hasn’t been pitching, his shoulder needed the rest after the summer, but he has finally been allowed to hit again. He’s a great hitter (really, that’s not just mom talking, he isn’t a power hitter but he gets on base more than most guys on the team in the years he did get to hit), and about midway through the game he got a single.

Now would be the time to cue the menacing music. Sigh.

The next batter hit some kind of grounder, Andrew ran to second, saw that the play was only to first and slowed down right before the bag. But because he plays on turf, and the field is used a TON by all sorts of leagues (because it’s turf and lighted, part of a huge complex of fields), he slipped. The turf in front of second base is really worn down (which makes sense), Andrew lost his footing and just crumpled.

Apparently, watching it, it looked rather a lot like Derek Jeter’s injury just in the last several days.

There are times in life you do NOT want to be compared to Derek.

He thought he was ok at first, for about 2 seconds after the second baseman asked if he was ok…and then the pain hit. The coaches and some teammates got him off the field, the parents did their thing, and Dave called me on the way home.

My initial response was extreme nausea, but that’s not too surprising. We are about at the end of our coping rope here.

So, a festive trip to the ER,14 comments by random people about how that’s just like Derek Jeter, an Xray, and a splint later, Andrew has a fractured ankle.

Woo.

We got home by 2:15, and then all got back up for work at 6:30-7ish. Ughly. I am still feeling a bit like road kill.
We see the orthopedic doc today, I’ve kept Andrew home from school because I don’t want him getting whomped by someone in the halls before he gets the hard cast on. The ER guy thought he didn’t need surgery, but we’ll see. Granted, we freaked the ER doc out a little once we told him, hey, we don’t know legs much but that there break is FIXABLE. And we like Fixable on a scan, we DON’T EVER SEE THAT EVER.

Then he tiptoed around us a bit. But maybe that’s because I called him on the questions about when Andrew had last eaten. I know what those questions mean, but he assured me those were just precautionary, not necessarily an assessment of impending surgery. Dave and I were in full onco-parent mode, friendly but perhaps a tad more assertive without being freaked out than ER docs are accustomed to.

This is fixable, and that is how I am looking at it. This should not affect Andrew’s baseball, we have months for it to get better. It does pose an awful lot of challenges (we hoped A could look for a job, we had planned to go out Wednesday to look; his winter training program we planned to do is going to have to be put off; he can’t mow the lawn, and Dave doesn’t have time, so I have to learn how to use the massive mower we share with neighbors; his school is only partly accessible, so they are super accommodating but it will pose some challenges).

I am just so tired of challenges. I want to go hide somewhere with palm trees and sunshine.

So that’s the Cams Crew update for today…we’ll see what the ortho guy says later, we’ll see how the rest of the weekend plays out. We don’t have quite as much going on this weekend, so that’s a relief, since we are drowning in life right now. Dave and I have to find a way to escape for a couple of days at some point, just to regroup (ie sleep and maybe have an uninterrupted conversation) but I’m not sure it can happen in the next few months. But we are both kind of worn down right now, when Mr. Optimistic gets as beaten down by life as Mr. O seems to be here, it’s time to do something.

But until we figure out that something, we just keep holding on for dear life and trying to keep our heads above water.

Better go get ready for school, and I can’t see the puppy, which is NEVER a good thing. ; )

Peace,
k

and ps Dave, I will send you that stuff, I keep asking David where it is but never when he's actually HERE...thank you...

Tuesday, October 2, 2012 2:16 PM CDT

The weeks just slide by, I have so much to say, and so little time to actually formulate words…and so often the things that fill my heart and my mind are NOT things I can post willy-nilly here…sigh. But here we are, through a race, 2 more chemo days, Genna’s first youth group meeting, some significant challenges for our family that I can’t really discuss here, the discovery of an Amish market, the continuation of lesson plans and fall ball and Nutcracker rehearsals and all the things that make we wonder whether I am living life or life is living me.

But I have to say, first, THANK YOU to everyone who supported our race efforts in Philly just over 2 weeks ago. The race was fantastic. The day was sunny and a bit too warm in the early part of the race (once we got into Fairmount Park it was shady, and thus cooler). I had to stick very firmly to my plan and not let adrenaline in the early miles set me up for failure late. I walked every water stop (normally I skip a few), really tried to keep my intervals smart, and tried VERY hard to ignore the pain in my knee.

Seeing our friends there cheering for us, seeing my children at the 4.5 and 13 mile mark…those moments carried me.

Andrew did a great job keeping his sisters together for the race, this is a thankless task and he did a great job. Genna is a pro at kvetching while other people are running, so…yeah. I am grateful for Andrew coming along this year.

And once again, in that final mile, I carried my G-foRce! Team Sandy keychain in my hand, and as I crossed the finish I put one hand over the pic of my girls on my heart, and raised that keychain to the sky… and then I just hollered a hooray, I wanted to punch a hole in NF right that moment and dang it I felt like I could.

Only through really thinking about our NF heroes could I keep going. 13.1 miles is stupid hard, and I do not love running. But hey, I finished in 2:15, FASTER than last year. Yes, these old bones still have a little oomph left.

Well, they did until 9/16, now I’ve got NOTHING. ; )

My knee still hurts, I don’t know what I did. It’s fine until I stand up, then it’s stiff for a minute or two, which is an improvement but ergh. It’s not IT band, my normal injury…ugh. I have not been able to run at all since the race, partially because of my knee and partially because of schoolwork.

And because of all of you, we raised over $7,000 for this race alone. Added to some of the leftover Coffeehouse fundraising (since we couldn’t do Jersey Shore Relay this year), the G-foRce! crew (aka all of you) helped us raise $10,000 + for a cure.

There are no words for our gratitude, but thank you. Thank you.

G and I stayed over after the race; getting up in the morning, having a leisurely breakfast, and then driving 12 minutes to CHOP was so glorious. We only had one doctor’s appointment and chemo that day, so we FLEW through everything. It was lovely, and G once again tolerated everything well.

Things only hit the fan when we got home.

G does great physically with the chemo. Emotionally she is having a hard time because of the time she is missing school. Her anxiety over the days missed (on that weekend it was 2 days because of neuropsych) is all encompassing. She was miserable for days, just in a panic over making up schoolwork.

ALL of G’s teachers are super accommodating. One or two are still learning how G operates, and I have a little more discussing to do, but everyone really is trying to help her. She just can’t NOT freak out, even when her teachers are assuring her she’s ok.

This puts kind of a cloud on things, sometimes. Literally from 6:30 in the morning she is worrying about schoolwork, trying to get things done, etc. It’s brutal to watch. She gets so worked up about it, especially after chemo days.
But she is so mighty, and she just keeps trying and trying, and we are working hard to help her figure out ways to manage this horrible anxiety. Now I am resorting to snack bribery so G will meet with Dr. M, but hey, rewards are rewards.

Even my R is worrying now…her back to school night picture in her classroom referenced the fact that she is so worried about “tons of things”. My heart broke a little, there.

The ugly contagion of pediatric oncology is relentless in how it attacks a family, the whole family.

ANYWAY…sorry, I should have warned you…see, this is why I don’t post that often. It’s hard.

ANYWAY, Rosie is full into dance rehearsals, we joined our RU LAX sisters for their annual banquet and games (G had a blast), Genna went to her first youth group meeting and LOVED IT. Loved. Came home FLYING, she was so excited and happy. She’s a little worried about this week because it’s a chemo night, but her enthusiasm for the group will hopefully get her past the “I have to stop having snacks at 8:45” moment. I love to see her so happy.

Dave managed to get away for a quick overnight retreat, which he really needed…I so hoped to do the same this year, but it can’t work…I just sooooooo needed that day where I could reflect and just have a peaceful distance from everything. Oh well. But once he got home on Sunday, we brought Coco to Hacklebarney, our favorite cider/donut place in Chester, and she did great in a crowd and being around other dogs. We are starting to figure this dog thing out a little. ; )

Dave and I also dashed out for dinner on Sunday night…yesterday was our 18th wedding anniversary. Yes, we were young when we were married. Yeah, life has NOT been what we thought. But I had some great tuna tartare…

Finally, yesterday was an extremely LONG CHOP day, kind of the polar opposite of the prior trip. The trip took 3 hours instead of the normal 2, then everything was late, G was so stressed talking to Dr. Matt, we had to wait for Dr. B (although laughing with her is medicinal), then the day hospital was really slow…G didn’t even start chemo until after 1, by the time she was done it was nearly 5:15…the delays in the day hospital just had G in piles of anxiety, she is fine once she starts but…who can blame her? She’s nervous before they plug her in.

And then we walked in the door at home and she was frantic about getting her English assignment printed out in large font so she could read it.

Yes.

But today G was up and out to school just fine, she seemed great at lunch…she is so mighty, and we are SO BLESSED BY HOW WELL SHE TOLERATES THIS MEDICINE. Most kids don’t. We are just lucky/blessed. I do not take this for granted, I don’t know WHY the chemo is working on tumors and NOT tearing G’s insides apart, but I am so grateful. I know that will likely change, but for now, I am grateful.

So this week we do temodar every night at home. I am once again trying to catch up with school work, I can never catch up. I got ahead on race weekend (I brought my big books to CHOP during G’s neuropsych), but now…ugh. I hope that some day I can teach 2 classes I’ve taught before, so I am not constantly working at inventing a wheel.

While waiting at CHOP yesterday, I also set up our next scan. 11/12 . Woo.

My stomach goes urgle-glub just typing that.

Yes, urgle-glub.

But today, we have homework to do, and maybe we’ll make some popcorn this afternoon and I can do something NOT homework-y with the girls later. We are so lucky to have this time, and I do NOT want to let it slip by.

Peace,
K

Saturday, September 15, 2012 7:36 AM CDT

I am the worst updater ever.

G started school...been stressful but exciting, she is slogging through already, working for hours each day. She is so mighty.

Yesterday we had her neuropsych testing, nearly 6 hours of doctor meeting/testing to see how G learns best. It was an epically long day, but she did so great.

We stayed over last night in Philadelphia because this weekend is the Philly Rock n Roll 1/2 Marathon!!!

Yeah, race day is HERE! I am looking at the Art Museum as I type this...gorgeous in the morning sun.

If anyone can help us, we are so grateful. A special thanks to everyone at DRS Technologies who blasted in yesterday in response to Dave's first (and so last minute) fundraising e-mail. Chemo kind of whomped us all this time on the creative fundraising front. Alas.

Our link is http://ctf.kintera.org/nfephillyrnr2012/GfoRcemomma THANK YOU! Go, G-foRce! Cure NF!
(well, that's mine, I don't know how to link Dave's in, alas! But we are all the same team). If anyone can help, thank you.

Please pray for us tomorrow as we run (my knee went out on THURSDAY, which is so flipping wrong I can't even...), and for G as she does chemo on Monday. THAT is the real endurance event, and I hate that she has to endure it.

peace,
k

and please keep G's art teacher, Lisa, and her family in your prayers in the face of a terrible loss. Thank you.

Thursday, August 30, 2012 8:02 AM CDT

Eight years today.

Eight years ago we finally got G ready for her MRI, the one the eye doctor had ordered at the beginning of August when G’s routine eye exam wasn’t quite right. I had put off the scan for a few weeks because Dave and I were scheduled to go away for a slightly early 10th anniversary trip to Cape Cod. I am glad we took that trip, we haven’t been away together for more than a weekend in 8 years.

So we schlepped off to Tri-County MRI in Madison, NJ, and G battled the sedation, the docs joked about her feistiness, the scan got done…Dave and I figured there might be something, I mean, we knew that was possible with NF, but we weren’t all that concerned.

Talk about “then we were young and unafraid/and dreams were made and used and wasted”…

I know I have said this before, but I feel so much for those poor techs seeing that scan after seeing G bop into the office. The massive hydrocephalus, the huge tumor, they must have been sick looking at us. Not sure the local MRI place sees a ton of kids with huge brain tumors on a Monday. I feel for those people.

G got her promised Happy Meal, Dave went back to work, I got home and within minutes the eye doc called, I thanked her profusely, I was so sure we’d have to wait. She told me there was some kind of lesion, some sort of something, we needed to call our pediatrician.

Yes, Lesion is Doc Talk for TUMOR IN YOUR CHILD’S HEAD. I did not know that then.

I called Dave first, said, yeah, there’s something, I need to call Dr. Moskowitz, I ‘ll let you know what he says…

In retrospect, I was so clueless it is mind boggling. I was not that worried. I called the pediatrician and they put me right through to the doctor…Wow! This was amazing! (so clueless).

And then everything hit the fan.

I found my scribbled notes from that conversation, lesion apparently equals massive life threatening tumor, you need to get her to a hospital NOW, oh my God what? G is holding court in the living room, my 2 year old Rosie is climbing around, I have no recollection of what 9 year old Andrew was doing. My friend Jen brought us a delicious chicken divan in the middle of it all, Jen was one of the few people who knew that G had NF…it’s hard to remember that we didn’t tell anyone about G’s NF until we were sitting outside the PICU at CHOP…but Jen understood, and she had made us dinner for scan day…I will never forget seeing her at my door, as I held the phone to my ear, trying to figure out what hospital we needed to get to NOW…asking her to pray for us…just to pray…

Columbia Presbyterian doesn’t take our insurance, just go in through the ER and say G has a headache. No, the nurse for the neurosurgeon had never MET Genna, who would never have lied about a headache, and would have yelled at anyone who said she had a headache she didn’t have. Again, in retrospect, G’s “ferocious diva” behavior was likely tied to the hydrocephalus. Where else can we go?

We got the info for CHOP…who knew there was a children’s hospital in Philly? I knew they had the Liberty Bell and Franklin Institute, but hey, a big hospital with a neurosurgeon (who looked so young. Heck, he probably thought the same of us back then)…we could go first thing the next morning.

We did not sleep that night, we just held each other and sobbed.

I cannot believe it has been 8 years. I just cannot believe it. We are so lucky and blessed to be here, I know we are so blessed. Today I am just feeling the sad of it. Because it is sad. It is very, very, sad. I try to be positive (within my naturally kind of pessimistic personality), I try to be all “let’s go, G-foRce!”, but somedays the sad is just really heavy.

Genna is doing so well. She is such a good kid, I know that high school is going to be a challenge for her, things have always been a challenge…and when she was a baby, I had such hopes that she would not struggle with the same stuff I did…

Yeah, brain tumor is infinitely worse than dorky self-conscious bone crushingly shy whatevers. G is outgoing and loud and fearless about a lot of things (and terrified of others), she is so mighty in ways I never was. She has worked hard through these 8 years.

None of my children remember “before”.

This makes me really sad, that this one awful day that set the avalanche rolling, that one thing blocked out all the years before…

On that 10th anniversary trip, Dave & I kind of planned out the next 5 years for our family. The farce of that now…sigh. We never could have foreseen how difficult Genna’s first 2 years after diagnosis would be. We never thought we’d find tumors in Rosie (I didn’t realize she had NF until just after G was diagnosed…her café au lait spots were so light). We never thought so much of our family would move away, that we wouldn’t have more children, that so many things would change. Heck, I am a completely different person than I was 8 years ago, so is Dave… some for good, some for not so awesome…it’s a little unnerving.

And yet, we are so blessed by the wonderful people we know because of G’s illness. We are. Even as I have lost my ability to fit in where we used to (which is mostly me), I am so grateful for the people we walk along this path with. I am so grateful for the doctors and nurses who have cared for Genna over all these years, especially Dr. Jean Belasco, Dr. Philip Storm, Dr. Grant Liu, and so many others.

I am grateful. Just kind of sad today. G is a survivor in progress. We are blessed.

I am supposed to go run now, I just have zero in me to do it, but we have a race in 2 weeks. And eight years in, we still don’t have a cure. We have more treatments—what G is on now was not available back in ’04…--but we need something that can stop this tumor-growth pathway, something that can help all NF folks.

http://ctf.kintera.org/nfephillyrnr2012/GfoRcemomma

Thank you to all who have supported us in this race….the 13.1 I have to do in 2 weeks, and the eight years of slogging through. We are so deeply grateful for all the prayers and support. Deeply, deeply grateful.

Next week we go to clinic on Tuesday for what looks to be an epically long day (you know it’s going to be bad when one of the nurses you’ve known since Day 1 says, “bring your sewing!”), then school starts for the kids Thursday/Friday. I have to order G’s other chemo today so it can get here by Tuesday…and then we are back into the full weight of the fall schedule. I am nervous…but if we have made it this far, under these circumstances, what’s a crazy schedule, right?

Ok, I so have to go run at least a little bit.

Ugh.

Peace,
Kristin

Tuesday, August 21, 2012 4:23 PM CDT

Hey, all.
So the word for Rosie is…drum roll…STABLE!

Ok, so drum roll kind of gives it away, unless I’m in a particularly gallows-humoresque kind of mood. But we are relieved.

Honestly, I wasn’t that worried. I was more worried about not being worried than actually WORRIED. I am not sure what THAT is about. Maybe I just have zero energy left for complete psychotic angst? That would be a reasonable assumption. And the day was a breeze, we zipped down to Philly, which apparently no one else in the world does on a Sunday morning, Rosie bopped in for her scan early (no sedation! Come right on in!), Dave went with her, I did schoolwork on the bed in the sedation room/ghost town, Rosie emerged triumphant about an hour and 40 minutes later, got unplugged from the iv (the only unpleasantry of the day), and we were on our way. We were home from a 10 a.m. scan IN PHILADELPHIA by 1:30 pm. This is almost Twilight Zone material…

She has just seemed fine, even to my uber-neurotic eyes. She seems so good, her odd little things seem quite plausibly from MY side of the family (ie the headaches, etc), so…yeah. I was hopeful going in, which is a weird moment for me.

We also were coming right off the girls’ week at Ronald McDonald Camp, mecca of love and sunshine and joy and happiness. Seriously. The girls just blossom there, I have no other way to describe how glowingly happy they were when we got them. G got her crazy short haircut, now she looks REALLY curly, and I think it almost covers some of the thinning that I’ve noticed. Rosie had stories and tales of delight. Counselor after counselor came to hug them and tell us how awesome they were (Ha! We knew that first!)…it was kind of amazing. So to go to scan right after THAT, it had to be good, right?

I had to go alone yesterday, Dave couldn’t take off work, so that was a speck alarming, but we even got in to see our doctor early, which is also near Twilight Zone-esque. Rosie looks great, G fell off the exam table with such a shriek that people came running in (mortifying but ultimately not a big deal—she is REALLY ticklish, and Dr. B checked the reflexes in her bare foot, and somehow G ended up face planting on the floor), and I was able to obsess over Rosie’s scans for a while when our doc got called out by the Doc in Charge (nice moment, G stage whispering, “IS THAT DR. PHILLIPS, MOM?” ).

As a side note to anyone who is a radiologist, could you all compare notes or pick a common language or something? Really. To call an area tumor in one scan and then in the next scan to refer to the same area in a full paragraph of multi-syllabic words that ultimately say “hey, you might want to watch this spot some more ‘cause we have No Clue What This Is”…to which our doctor says, “yes, it is probably tumor”…that’s just annoying. As mom, I am used to the fact that there is another tumor there, even if I forget to mention it much. So get your story straight. Heck, I’m only mentioning it now because my girls are currently obsessed with asking how many tumors they have.

Now there’s a counting picture book waiting to be written.

I also double checked; G’s scan was better than her December Scan of Woe, too. We didn’t exhaustively search that out, but even a few comparison slides were enough for me. Booyah!

Then we were whisked off to the day hospital, where G handed out cookies (hard to sell them yesterday, which is odd, they were sugar cookies with M&Ms, come on, people), Rosie found the Disney Channel, and I created the giant pile of bags blocking the iv pole that we seem to build every time we go.

Chemo went ok. G was so tired, so very tired, but she hates napping during the Avastin because they take her blood pressure 3 or 4 times, and that wakes her up, which is akin to The Worst Thing Anyone Can Ever Do. Chemo was kind of slow, there were delays between each med…zofran first, then avastin, then atropine, then irinotecan…She dozed a little, got her Beads of Courage from Megan (Child Life) and watched some tv. I actually read a book, a real book NOT about an epidemic or political theory or anything depressing. I read Julie and Julia, and I found it very refreshing. I haven’t read a one day book in a long time, and while Julie uses language I can’t really use for writing (although alas, I do too often use it in speech), I found the whole thing very inspiring on the word front. Can you tell?

Maybe it’s 2 stable scans in back to back hospital visits, maybe it’s the giant bag of Kettle Corn I am chowing down on , maybe it’s my Frappacino, but I am feeling a little more like my snarky self, not the depressed version, just the vaguely overwhelmed disorganized neurotic version. Yay!

That said, I am a bit overwhelmed by school, we are SO NOT READY. The scan fest/chemo thing has kind of messed with my ability to focus.

I should be super productive today, but G doesn’t feel well at all, she hasn’t thrown up or spent the day in the bathroom, but she has sat on her favorite chair almost the entire day. She got up to do a math problem or two from her summer work, and she tried to slog through another chapter of The Scarlet Pimpernel, and she tried on her uniform (not even discussing that), but that’s it. She has been a lump of ugh all day. I hate that.

We are so lucky, she has tolerated this chemo GREAT so far, and it is working, it is REALLY WORKING…did I mention that scan, you know, the one that showed SHRINKAGE?...but still I hate to see her feel like this.

School is going to be a challenge. Sigh.

In that vein, I spent an hour today trying to type a “here’s what G needs for school” list for her teachers. I find my list is sometimes more helpful than the ISP version, mostly because it’s in my voice…which all G’s teachers KNOW, so somehow I think that helps.

I also ran 8 miles today. Yes. It wasn’t as bad as I thought it would be, but it wasn’t super fun. The Philly ½ Marathon is LESS than 4 weeks away. Yikes! I have to get at least two more long runs in…but I am relieved to get this one done…I meant to do it Friday, but Andrew had a fever (and, in a house with a kid on chemo, NO ONE is allowed to have a fever for more than 24 hours without a doctor visit, to my firstborn’s chagrin), and then Saturday was camp pick up, then Sunday was MRI, yesterday was chemo…I was having major-no-long-run-getting-done-anxiety. So I did it while G dozed this morning.

I am trying to get to $100 per mile…so far, because of all of you (cheers! Huzzah!) I have the first 4 miles covered. I am not going to lie, the hardest miles for me are 8 and 9 usually (ok, the one time I did it that was super hard, not sure one time merits “usually”). So if I can get those covered, that would be super great. Our link is above…and no donation is too small…all of that goes right to NF Endurance. So thank you.

G is saying her stomach hurts, R is hungry, the puppy is asleep UNDER her bed…I better go be mom.

Thank you all for your prayers and support, they mean the world to us. Really. No joke. They do.

Peace,
K

and hey, please pray for our buddy Drew who scanned yesterday and Emma who scans this week and, well Grace had a clear scan (woo!)...
and please remember the family of Drew G, brave warrior boy, his battle has ended.
I hate brain tumors.

Wednesday, August 15, 2012 9:14 AM CDT

Hi, all.

I have been just in too much of a fog to write much more than what I did last week.

We cannot believe it is smaller. And not a little bit smaller. WAY smaller.

I have to ask our doc a few questions, yet, questions that sort of gradually occurred to me once the intense shock of ridiculously good news started to ease. But all in all…we are so grateful. Just blest and grateful.

I am still working on keeping all my parts of my desperate bargaining with God (so far so good, though!), we are just so grateful.

And wouldn’t you know, Genna had ZERO side effects from her chemo last week. Fatigue, yes, but nothing more yikes than that. I only gave her zofran right before chemo, not all day…she did so great.

We are still agog.

We celebrated pretty much all week, cake, pizza, weeping for joy.

What else can I say?

I did a blow by blow of the day on my blog, if you really want to know what the day itself was like. That link is http://kmc-movingrightalong.blogspot.com/ …Miracle Monday is the name. : )

Well, there is always something, and I kind of resent my own brain just chugging along to the next anxiety. I am clinging to our yay. Both girls are at Ronald McDonald Camp this week, based on pictures both are having a good time (well, G is having a great time, Rosie doesn’t look too terrified…she is mostly smiling even when she doesn’t know the camera is on her. ). I am just beginning the massive task of building a new class (I am teaching US I for the first time this year, and I teach from notes, so…I am slogging through notes. About 7 hours of time per chapter…I am SO SLOW). The dog is being cute and she seems to be chilling out a little, today we are getting a new washer/dryer because our washer died last week (we did get an extra 18 months out of it after the repair guy told us it was dying, so yay). Our dryer is going, so we just replaced both (there was a discount). Busy busy busy.

And Rosie scans on Sunday…

We get results Monday and then G gets chemo. Dave can’t come on Monday, he has missed too much work, so I’m a little meh about that, but maybe I’m just still so shocked from Genna, I have almost no room for anxiety over Rosie’s scan. I just have to hope everything is stable. I have no evidence otherwise, so…yeah.

I still can’t believe how miraculous G’s scan was. After EIGHT years. Eight years we have NEVER seen a scan where the tumors were anything but the same size or bigger.
Ever. She has tumor in so many places, the stakes were so high this time, I can’t overstate how critical this scan was (or how bad my anxiety was beforehand)…we are so grateful.

I still get emotional about it, even now, more than a week later. It defies everything.

Thank you all, for pulling for G. Thank you all for riding this roller coaster with us.

And in 4 weeks Dave & I are running the Philly ½ Marathon for NF Endurance. We need to keep research moving. I feel like we have such a massive reprieve here, we CANNOT WASTE IT (which is kind of fueling a lot of things for me in the past week). I have delusions of raising $100 per mile. So far I have 3 miles covered, thanks to super generous friends. While I would love to only run 3 miles (oh, how I would prefer that, I still do not love running even a speck), I have to go 13.1 for my girls, my spouse, our friends…it is only for them and riding on their courage that I can even tie my sneakers in the morning.

So please. If anyone has a dollar or two, we so appreciate your help. Thank you so much to those who have donated already. We are so grateful.

http://ctf.kintera.org/nfephillyrnr2012/GfoRcemomma

That’s my link…and hey, it’s not too late to join our team, if you don’t hate running…or if you just hate NF way more than you hate run/walking for 13 miles and this seems like a good fit for you…come on down! : )

Peace,
Kristin

Saturday, August 4, 2012 8:31 AM CDT

Monday, August 6: GENNA'S TUMOR IS DRAMATICALLY SMALLER. THE ENTIRE SCARY NEW PART IS DRAMATICALLY WOW UNBELIEVABLY AMAZINGLY SMALLER. We have never, ever in 8 years seen a scan like this, we are agog and flabbergasted and overwhelmed and so blessed and grateful.

We still have several more hours here, G is just getting plugged into chemo, and we are SO GLAD. Even G came back into the exam room to look at the pictures (after saying she did not want to hear anything)...the pictures were THAT amazing. We have never had this. Ever. She said, "I hate doing Avastin, but now it's worth it!"

Thank you all for praying for us. I made an awful lot of bargains with God in the last 3 hours of waiting (this was my worst anxiety in ages), I am excited to take this time we've been given and make the most of it.

I feel like we got hope back.

Thank you all!

*****************************

Hey, all.

Well, we are 48 hours from scanning. At this time (exactly) on Monday G will be getting rolled into ye olde Siemens Magnetom.

My anxiety is no longer measurable by human standards of measurement.

Whatever your best prayer is, please, please pray it for us on Monday.

I should likely alert you to the fact that this isn’t a super sunshiny post, I re-read it and realized perhaps this will not win an award for Smiley Yay-ness.

Things have continued hurtling along in life through the fog of scanxiety. The boys came home from the baseball tournament early (huzzah!), we celebrated Andrew’s and Genna’s birthdays with family (a bizarre buffet of pizza and roast pork/mashed potatoes. My kids like different menus), Andrew GOT HIS DRIVER’S LICENSE!! (so be warned, oh people of NJ), we are trying to get stuff ready for Camp (Rosie goes to church camp tomorrow for a week and then both girls will head to Ronald McDonald Camp for a week after that), the puppy takes every spare moment of every day (but she is soooo cute, even though she needs a bath), we celebrated Rose’s baptism day (an extra fest we have here) with ice cream sundaes, and we’ve been watching the Olympics about 24/7. We also hit the local hot air balloon festival last weekend at 6 a.m. Yikes. Gorgeous, so magical to see 100 hot air balloons rise in the early morning light…amazing. And my girls got lots of tchotchke from random vendors, so they were happy.

Phew.

And still, I feel like I am moving through a dense fog. G had an odd moment this week, just a little thing that literally glued me to the floor. You ever have that feeling of hearing something and your insides literally feel like they are draining out of you through your toes?

It was a passing moment, but enough that I called CHOP and e-mailed our doc (who got right back to me, my panic must have come through in my e-mail), the consensus is I don’t need to panic….but having those moments in the week before a scan, the week before a very critical scan…

And she’s been tired, more tired, which I guess can just be the heat and being further into chemo. We just so need this chemo to work.

Yeah. In this case NF = No fun.

G is struggling through her summer reading, really struggling, but I think maybe she is starting to understand the book. I wish we could have gotten that neuropsych evaluation before high school…CHOP really botched the scheduling on that one for us, but I was willing to wait to have the same doctor do the testing for G, she (the doc) is awesome and really helpful in connecting learning issues to brain injury…sort of filling in the “Why” in answer to the “what the heck?” moments of G’s school issues.

On the flip side, I’m not sure Andrew has even cracked open a book…ok, deep breath… ; ) At the same time, we are hoping the baseball/college thing works out, I am just praying that the right door opens. The door I really HOPED for has shut, so we just keep praying and he keeps playing… he HAS done really well this summer, I am grateful that we do have at least one school that LOVES him, and his dream has always been to play ball in college…so we’ll see…

I just need something to work out well for someone, ANYONE, you know?

It’s been a really epically tough week for some folks we really love. Epically tough. Brain tumors are just so mean. There is a really funny and thoroughly inappropriate comic about brain tumors that I would post here if the language wasn’t so awful. But if you ever look up The Oatmeal and brain tumors online, you can see how I REALLY feel about brain tumors (just know the language is um, quite …pointed).

Seeing our friends suffer hurts so much. We just spent that glorious week at Camp with all these folks, and to see them reeling from variations on a theme of brain tumor smite just makes me want to punch a wall.

I am trying to channel that into training for the Philly ½ Marathon in September. If anyone is a runner and wants to join our team, we would LOVE to have you, I think the race still has spots open. We will cover the $25 fee for NFE for any person who wants to join us (I think it’s stupid to charge people to help. It’s counter-intuitive. I am so crabby). I am supposed to be getting in a 7 miler this weekend, this humidity is killing me, but I have done a 6 last weekend and then 3, 4, and 3 this week…I am getting those stupid miles in.

My goal is to raise $1300, $100 for each stinking mile. The link is posted above... I know I have been so half-hearted in fundraising. We are kind of demoralized on several fronts, so I haven’t been officially begging with any conviction. And really, I still have Coffeehouse thank yous SITTING HERE that I never sent . Heck, I have a pile of very cute keychains I made for everyone who supported Dave’s Polar Plunge. Those are sitting on my craft table…alas.

We are so grateful for everyone’s support, and I totally apologize for being such a fail on the thank yous. We are so grateful. I just get paralyzed…

I feel so presumptuous begging for money and prayers and whatever. I mean really. So many people are in worse shape than we are. So many people are begging the heavens and asking each other for support, who the heck do we think WE are?

But I love my G. I can’t see my world without her, even as she makes me berserk. So I beg, even as I feel like a bleh for doing it.

Yeah, so updating RIGHT before a scan is perhaps ill-advised.

G is trying to recap the Scarlet Pimpernel chapter for me, she said she’s a bit boggled, I probably should go read this book so I can help her. Now she wants to take a nap. It is 9:22 a.m.

Please pray for us. And thank you for standing by us. Thank you. Please pray for our friends, especially Brianna and Caroline and Gabbie and Michaela and Tommy and Lauren and Drew G and so many many others who are seriously fighting right now.

Peace,
Kristin

Ps I will try to update somehow on Monday. If the scan is good, we will still have to do 3 hours of chemo. I pray we have to do 3 hours of chemo. God, please…

But if Dave has his laptop, I will try to at least put a line up to let folks know how things turn out.

Tuesday, July 24, 2012 11:35 AM CDT

14.

Today my miracle child is 14 years old.

I really have almost no words, just gratitude.

We are waiting for an “official” birthday celebration when Dad and Andrew are back from the baseball tournament in Florida. But G wore her tiara and a funny t-shirt to clinic yesterday (Date of Birth: 7/24/1998 …Yes, it is almost my birthday!), we hit an Italian deli/bakery today to get some fresh mozzarella and crusty rolls for dinner, later we may go get something at Rita’s because Rosie found a coupon…we are embracing this day, this miracle day.

At this moment, G is sleeping on the couch. Chemo waits for no kid, and yesterday was chemo day. G did well, her stomach felt nasty at the end but then settled. She is just so tired, and today her head hurts. We scan in 2 weeks, less than 2 weeks, and this is the desperate Must Be Stable kind of scan, a new sort of place for us within a very old country, if that makes sense…I am trying to just enjoy today, and not let myself slide into that panicked “what if?” moment.

The doc G sees for anxiety called me out yesterday on being mildly skeptical about the therapeutic benefits of deep breathing. I am supposed to help G practice relaxation techniques. Granted, I am a tad…unrelaxed? at any given moment (or, to quote one dad at Camp Sunshine last week…”should you be having caffeine? “ heehee). And I know breathing can help her, but the other stuff…I keep having Lamaze flashbacks. Just because you faithfully practice breathing for months does not mean that in the context of pushing out a human being Breathing Is Going to Make Any Difference. For me it just gave me someone to think angry thoughts about. ; ) Dr. Matt did not necessarily know what to do with the Lamazification of what he wants me to do with G….but it just struck me as funny.

He asked how we deal with the stress of an upcoming scan…because really, no one CAN say this is all going to be ok. It quite likely may be the OPPOSITE of ok. Like, rats leaving the ship not ok. I tried to explain, but it is so hard to put into words how moving rocks or keeping insanely busy with physical tasks ultimately helps more than deep breathing (and I should add, at 3 a.m. when panic strikes, I do try the breathing thing). How do you explain this?
You can’t really, so we just keep busy.

In a related blessing kind of moment, we were somewhere last week that we don’t HAVE to explain that feeling…Camp Sunshine. It was so hard to go without Dave, so very hard, Camp is the ONLY place he really can get any bt support at all, he doesn’t do facebook or this page. But the girls and I trekked north to Maine, I survived the drive (in a weird side note, yesterday going to and from Philly I was fighting sleepiness for half the drive each way. I drove to flipping Maine and back just fine, but to PA I was all ergh? Hm.) , I pumped gas like a CHAMPION, and we got to spend a blissful week with our friends.

Our Camp friends…

I don’t know how to put into words what Camp is. Well, here’s one way: it’s somewhere that other parents of bt kids were crying for MY kid, because they love her…just as I love their kids. We support each other, we cry, we laugh (a lot), we hula hoop and eat ice cream and talk science and school and chemo and childhood. It’s like a zone of instant family, and only the nice kind of family, not the ones who…ok, not going there. But you walk in, and you are greeted with love.

And as a bone-crushingly shy person (Rosie is her mother’s child, I have just replaced nervous silence with nervous snarky commentary), it is so much easier now that we’ve gone a few times…we can just go and literally BREATHE. Deeply. Ahem. ; )

My brain was in kind of a tough place with just…everything…alas…and my friends CARRIED ME. Even new friends. Carried. Me. I am so grateful.

And Genna HUNG OUT WITH OTHER KIDS (cue fanfare!)and even Rosie got more comfortable chatting by the end of the week. We are so grateful for what Camp Sunshine has been for our family. So grateful.

So I guess that’s kind of the theme of the day. We are in sort of a hard moment (and puppy is all-consuming of time here…she is so sweet, but I am ready for her to be tap dancing and fetching me a frosty beverage ; ) …she needs to master outside=bathroom and other details of life. But she is so sweet mostly), but we are trying , trying so hard to embrace the joy of EACH miracle day instead of just wading through the yikes.

We are grateful.

Happy 17th birthday to Andrew (last Friday, when we were coming home from Camp…I got to give him a hug—yes, with arms and everything!—before he and Dave left), and Happy Birthday to my Genna. We were never even promised double digits, and here we are woohooing 14.

That's pretty freaking awesome.

Peace,
k

ps please pray for our friend Lisa having surgery this week...and for Drew G, Lauren, Hailey, and all our Camp friends who are battling so mightily...

Thursday, July 12, 2012 3:05 PM CDT

Hi, all—
Mucho apologies AGAIN for the delay in updating. We had an awesome vacation to Lake George. Time truly stands still there, the only things that change are the sizes of the children and the dogs…everything else has that timeless quality that a truly beautiful natural place has. We go with friends, which just adds to the yay…

I’ve reference before how much our social sphere has shrunk over the last few years (maybe because we are so super fun to be around? No?), going away with people we love, laughing and being snarky and sitting in the sun (ok, shade for me)…these all mean so much to us now.

Genna did well, she managed to get up the mountain ok, I got in 2 runs and 2 power walks (and one mountain hike with G), Dave and Rosie had lots of fun in the water, and Andrew lounged about. In one really special treat, my niece Katrina was able to come too…since her family moved to Colorado, things have been pretty sad for my kids, so having K around for a WHOLE WEEK was awesome, even if now she knows the secret about Aunt Kristin Being a Big Snarky Sarcastic Eek. ; ) Well, she was bound to find out sometime. ; )

The weather was brilliant, hot but not brutal like Jersey, sunny and nice and huzzah all around.

I do love the lake.

In an epic shockaroni, after driving 4 hours home on Saturday we…drove an hour and picked up Coco, our new puppy.
Yes, this is me. Yes, you read that right. A puppy.

Coco is a Coton de Tulear, and I may have to displace Matthew West here to try and insert a picture of Coco! ; ) She is 4 lbs of white floof, and Rosie named her. We do tend to add other names (Coco Chanel has stuck, as has Coco Chardonnay and Coco Mulchmess and Coco Creampuff and of course, Coco Sparkle Princess). This makes Dave berserk, which sadly only encourages all of us to new heights of dog naming.

We had a few eeks this week, one full out vet disaster (now remedied), one poop on the floor in the middle of chemo time, but ultimately she is a joy. Dave LOVES having a dog, Andrew is thrilled, G is starting to figure out how to be an Alpha to the puppy and Rosie…well, Coco seems to think Rosie is another puppy, we have to help Rosie NOT giggle when Coco is being naughty—but she loves this puppy so much. I am still neurotically reading books (I am going to be almost ready to JOIN the Monks of New Skete by the time puppy is grown), I hope eventually I have some clue as to what I am doing.

And then Monday…chemo day!

Woo.

G did really, really well in clinic, and we got to visit with our friend Maddie & Mom Linda before the day was out. We got through the one challenging appointment we needed to have, at first I thought we were going to crash and burn, but ultimately G was peaceful at the end and I think we have a plan going ahead. When anxiety counseling is GIVING you anxiety, there is perhaps an issue…but I think we are on a better track now.

Her counts are solid, dipping a bit but still good (I am watching her platelets, I have platelet phobia), she laughed and told jokes and generally looks fantastic.

We scan in less than a month. I am starting to have moments of deep, deep panic that well up from some dark place inside and threaten to suffocate me. But G looks really good.

Sorry, should have blinked a “please fasten your seat belts” sign before diving into the depths.

Chemo went well…we had a snafu getting the temodar (don’t get me started on THAT. . .an insurance/prescription issue, not a CHOP issue), so we started that on Tuesday.

G’s stomach has been a bit off the last few days, and she is exhausted. Even with the extra week off, we are seeing a more significant hit this time around. She is spending a lot of time on the couch. We will finish this round of the temodar on Saturday night, right before we go to Camp Sunshine on Sunday.

I am so dismayed that Dave can’t come (this is the Summer of Baseball—and Andrew has gotten some serious attention/conversation from some D1 schools, so that is promising), nervous about the drive, glad to go but knowing how hard large social gatherings are for me (alas, I am a wuss)….but I am so grateful to go, I know I need to talk to some folks who just know…which is not to downplay or negate my love and appreciation for random normal (well, normal for me, which is kind of warped) conversation with friends here. I just . . .

Sometimes it’s helpful to have time with people in different points of the walk through the fire. It just helps.

Phew.

At some point I have to actually start reading my history text for next year, and I need to do some deep organizing off all the half done projects I have gloobling about the house. But now we are on puppy duty, and my sister Em is home, and in a few weeks Cath will be back, and we have 2 big birthdays coming up…

And then August is the month of scans, both Genna and Rosie. For G this scan is so critical…I cannot even begin to say how important this one is. The recipe book of possible cocktails of tumor smite is running out of pages…

But today, Rosie swam, I made pesto and orzo with roasted vegetables, and G played Panda Poet …Andrew is at a showcase down in Trenton…Coco is chewing on her crate…summer goes on. Camp is coming for the girls…fun stuff does lie ahead.

Thank you for all your prayers and support, and please remember our friends…so many are in such tough spots right now…Maddie, Drew, Emma, Gabbie, Dakota, Jaxon, Luke, and so many, many more.

So many more…

And especially…we remember Sandra. We were on vacation on her anniversary, but as always , Sandy is never, ever far from our hearts. When I run I think of her. When we eat ice cream and see SpongeBob we think of her. Sandy, we love you.

Peace,
Kristin

Friday, June 29, 2012 9:13 PM CDT

Hi, all...

So the girls had a lovely getaway with Grandma & Grandpa, and Andrew keeps pitching hopefully well enough for colleges to notice (so far that seems to be going pretty well), and I am still wandering around my house getting little done.

But tomorrow we head north to Lake George, and thus get to skip a week of chemo.

G had one moment this week that gave me pause, sort of a crack in my Hope Fest, but we won't know anything until August 6. Sigh.

She just got her summer reading assignment, she is now in full bore linear obsessed mode trying to pick out books. This is going to be challenging. As reading levels increase, and font sizes decrease, things get tricky.

Today we had a marvelous moment: we met our new puppy. I know. A for real puppy entering our home. She is the best animal ever to walk the earth, at least that's our preliminary assessment. ; ) The way things came together to make this happen was just kind of "aaaaaah!" and the heavens opened and a shaft of light shone down on Monroe, NJ, to the most immaculate farm I have ever seen, where a family of Cotons waited for us to come...

Seriously, it has been amazing. We will bring Coco home officially next Sunday, after Lake George.

We just love her. Even though today was brutally hot, we loved visiting her. As a cool side note, Animal Planet was filming, they filmed us "adopting" Coco and "leaving", they were the nicest people ever. Really, watching them work was super cool. The show (part of the Too Cute! series--obviously fitting for us, as we are super cute one and all. ahem) will air in the late fall/early winter.

I do have 57 things to do before tomorrow, including talking to one of G's team...she has decided she only wants to talk to GIRL doctors about how to feel more peaceful. This is problematic, considering Dr. Matt is very nice and very professional and very male. So I have to try and figure out how to either help her learn to adjust, or make some kind of transition yet again.

And August looms...

Thanks all for your prayers and support, and for those who read my blog...well, my NEXT entry was even more of a bridge burner. But I can't just be quiet anymore. As she who was once asked (in high school), "so, do you ever talk?"...I am done being quiet.

I promise, only sparkly rainbows and cute puppies from here on out.

Hey, at least Half of that promise I can truly keep! : )

Off to finish packing (or more accurately, to go to bed and just leave it for the a.m.)...peace, all--

Kristin

Monday, June 18, 2012 8:33 PM CDT

FRIDAY: just a note from the sweltering land...

I wanted to share the link to my blog here. This last week I heard a talk about cancer that kind of had my blood boiling. Truly, like bubbles and steam. Yikes. I don't really know what I can do to right the wrongs I saw here...so I did the only thing I know to do. I wrote. Not about everything, but just one of the points that I found particularly upsetting. While this talk wasn't personally directed at us, it was given by someone who knows us really well...hence my intense response.

I've already posted this a few times on Facebook, but I know not everyone who reads here reads there.

I am so naturally non-confrontational, I hate conflict of any kind...but don't diss the people charged with saving my child. Don't.

So if you want to see my non-CB side, here it is.

http://kmc-movingrightalong.blogspot.com

hopefully that hyperlinks, if not you can cut & paste.

peace, and stay cool!
k
******************************

Hey, all…

So Here’s the Blitzkrieg Update that is necessitated by missing 2 weeks:

1. Genna graduated 8th grade. She looked radiant, thanks to Suzanne & Rachel Gallic. ( I am going to update the picture!) She was so happy.

2. NF can kiss my fat fanny. G graduated.

3. We survived the 5:30 a.m. departure for CHOP…and G’s eyes were STABLE. Yeehaw. I did get a bit …sad?...reading over the fellow’s shoulder (he had soooo much makeup reading to do to figure out what was up with G). Reading the way our doc talks about G…so much concern, and sad, and happy about G’s cheerfulness, and fierce…in very particular medical language…sigh. So the next time someone disses oncologists as being part of some pharmaceutical conspiracy, see point 2 and insert your name where I have NF. Yeah.

4. After a lightning weekend of out an about (the boys had a tournament in VA—so far Andrew is getting some good responses from college coaches, pleeeeeease pray!) it was a race to a week of fun…

5. Which first of all was Rosie’s 10 year old overnight trip. We went to Bushkill falls…a lovely hike, hiking with Rosie is a joy. She never cries, she stops to look at everything…the rock that looks like it’s frowning, the snake on the river, the log that looked like pants…her joy, her “take a picture, mom!”…what a delight. I have to make sure going forward that I do this with her more, because when we hike as a family my poor G just…sigh. It’s hard. So hiking with Rosie was just so all about why I love hiking (which was both a happy and a sad moment, really). And then we went to Great Wolf Lodge and just had a wonderful time, just the two of us.

6. Wednesday morning Genna and I were off for her graduation getaway to Cape May. We had some moments of ergh (I watch too much Hotel Impossible), but G climbed a lighthouse, a World War II fire tower, she saw a dolphin (we think. That was frustrating), she got her longed for manicure, shopped for tchotchke, had ice cream as lunch, sat on a beach, watched Food Network, played mini-golf, found decent pizza (G was very impressed, it was “North Jersey pizza in Cape May!” she kept saying, heehee. Yes, we are pizza snobs. We can’t help it. Jersey has fabulous pizza. ) We finished our trip by stopping at the Cape May Zoo, where G could just look at giraffes to her heart’s content. She so loves giraffes.

All in all it was great. After saving up for these trips for a year, I was so happy that they actually worked, and that G felt good (SHE CLIMBED 199 STEPS OF A LIGHTHOUSE!). We had some really good talks, grown up kind of talks…I am so grateful…SUMMER!

7. Father’s Day was a nice BBQ at Dave’s aunt & uncle’s house, a tradition our family loves (thanks, D & R), and Genna was ecstatic about her little cousin Isabella. G & R followed Isabella around all day; when we arrived, Isabella ran over to the car saying, “I am so happy! I am so happy you guys!” as she gave G and R hugs. Com e on, that is just too delicious! G kept telling the nurses at CHOP today all about it…

8. Which leads us to today, CHOP day. Rosie came along (I just thought that would be a good idea after me being away 4 days) , traffic was nothing, G’s counts are great, she had a couple of jokes for Dr. B (awful jokes, as usual), G giggled and giggled with her doc, got her 42 bazillion Beads of Courage, and watched way too much Disney Channel. (sigh. It’s like where the kids from Barney go once they get too old…the acting…ow…I reached my saturation point today). Rosie painted with shaving cream and neon tempera paint—extreme fun—and found herself an ice cream.

Chemo went well. G was so tired but did NOT want to sleep. She did get some stomach pain about halfway through the irinotecan, but she didn’t get sick, so…I am going to give her the big med before bed and hope she’s ok tomorrow.
In one very silly note, I forgot to put hair containment stuff in my hair. I looked like a Chia Pet. Good times.

We only have 2 more doses before the scan. Only 2 more.
I am scared, and I am a Menace to Society. I am DETERMINED to have this summer be awesome for G & R and Andrew. Determined. Who knows what August 6 will bring (and Rosie’s is August 19. Ugh)? Our doc is optimistic. G is tolerating this combo SO WELL. She is doing so great, really, certainly in comparison to the Sorafenib this is a cakewalk.

We so desperately need this to work.

The girls have a little getaway with Grandma & Grandpa Camiolo this week, and then we only have a week until Lake George…and THEN the puppy comes home. Yikes. I still don’t know about any camps, I kind of feel despairing about that, but I am also just tired.

We so desperately need this to work.

My G is so mighty. I have to keep my Menace-ness in check for her, but I am about 10 seconds from going ballistic about cancer stuff, just as a warning.
And I just erased 2 paragraphs. I need to wait, and be the voice crying out in the wilderness in the right way.

As we approach scan day again, and I know the reality of things …I am a menace. Just be warned.

Because for my G, we have to keep our fighting spirit alive. We trust our doctors, not because we are doofs, but because they have EARNED our trust over the last nearly 8 years. Each time we are in clinic , like today, I am reminded of how grateful I am for our nurses and doctors and such a kind environment of Let’s Kick Some BT Backside…where people are happy to see my G, and all of us…

Dave just got home from work, and I already gave G her meds (thank you GOD for medicine to help her), I better go.

Thank you all for pulling for us…we are so grateful. Please pray for all our friends, all the beautiful warriors we know…

Peace,
k

Wednesday, June 6, 2012 7:24 AM CDT

Hi, all.

I apologize for the delay in updating. We are at our normal manic pace here.

The girls had their dance recital on Saturday. I seriously think this was one of the best recitals yet….it may be G’s last, we really aren’t sure what next year will hold for her, so I did not sign her up for dance, so the day was bittersweet. She and Rosie danced beautifully, G just smiles and smiles when she dances…even as she kind of galumphs a half beat behind everyone else…we are so grateful for Joanna Andriopoulos and AP Motion.

And just before intermission Joanna & the advanced Modern girls did a fully staged version of the Strong Enough dance that Joanna choreographed for Dance for Genna Day…I was a wreck, it was so gorgeous, even Dave was verklempt…it was a really powerful moment.

We are grateful.

Sunday was a baseball tournament day for Andrew, and I am trying not to be a slug for all the times Dave & Andrew will be gone at bball this summer, so I took the girls to Colonial Park in Franklin to see the rose gardens. We had a lovely low key time, I can’t believe I actually did a normal fun mom thing like I used to and it WORKED.

So pitiful does not begin to describe THAT, but the time was lovely.

Of course then I forgot to go actually PICK UP G’s home chemo before the pharmacy closed…but my mom got it on Monday for us.

G and I schlepped off to Philly Monday morning for chemo #3. She dreaded going, she was worried about who her nurse would be (I suggested it might be Santa Claus, she said Santa wouldn’t know how to access a port. I said he might, he has pretty mad skillz, at which point she interjected that he is um, fictional). Anyhooo, we got there early, she chatted with Dr. Matt (hopefully that’s getting more normal ? ), and then Dr. B was ready for us.

Yes, there was THAT MUCH of a pause between the 2 appointments, I hadn’t even put my bag down! Egads! That never happens. Ever…a fact we repeated often throughout this speedy day.

So we shuffled on back to Dr. B’s room, G told some awful jokes, she giggled at getting tickled and then completely could not stop giggling for the part of her neurological exam where she has to puff out her cheeks, she just was hysterical, she would try to puff them out and then just collapse with giggling, and then we were all laughing, and there was just a lot of joy in what really is such a grim kind of context.

Again, I am so grateful for our doctor. She sets the tone for that with G. Grateful.

G’s counts are solid, down a speck but not DOWN like days of yore, the med cocktail from last time seemed to work, kidneys look fine, so we were good to go. In one uber ridiculous moment, Dr. B showed me that the computer was giving her some weird error message about Neurofibromatosis not being a valid code for something.

I had nothing printable to say about that. Hmph.

We were only out of the exam room a few minutes (and saw an old NF friend we haven’t seen in ages, which was nice), then they were ready for us in the day hospital.

Seriously, for CHOP this was like breakneck speed. G was plugged in by 11:45 or so. She had lunch, then some visitors came by, a nice young survivor who wrote a book about visualization, and David Briere, #48 on the Flyers. We did have that awkward moment of um, Devils fans!, but he was very nice and posed for a picture with G. She showed him her Beads of Courage, and generally was quite pleased to have some action going on while she was getting chemo.

Then our dear friend Aimee Disney stopped by, which was Momma Medicine for me. Thanks, Aimee…it was so great to chat and not obsessively watch the poison drip into my kid. Not that I do that, but…ahem. Thank you.

G painted a picture of a butterfly with Jessie the Art Lady, and then we were good to go. By 3:15 we were on the road again! EGADS!

G had some stomach pain on the way home, we needed to use the bathroom once (when we stopped to get Andrew at baseball), but otherwise she managed to sail through once again with LOTS of medicine and not a lot of side effects.

Have I mentioned how grateful I am for modern medicine?

Of course now I am starting to have that feeling of nagging dread, we have to schedule her next MRI, and Rosie’s too, but I am mostly terrified about G’s. Don’t think I need to spell THAT out. Sigh. But Dr. B is optimistic (or telling me she is optimistic, but she is always honest with us, she knows I always go to the worst scenario first), so we’ll see. We are going to hopefully schedule scan and chemo for the same day. Now that’s optimism, right?

(if the scan is bad, that equals chemo failure, which equals send back the meds. Ok, I did spell out at least the prologue here, the following chapters are too scary).

But today, today is a huge day for G.

Today Genna graduates from 8th grade.

I remember, I remember like it was yesterday, sitting on the chair in my living room, completely hysterical, facing the reality that middle school would likely not happen. We don’t speak of this a lot, certainly not to Genna EVER, but there was a month in 2006 where things looked intensely grim. And I remember sobbing out that my G might not make double digits…

Nothing is promised us for future milestones, a fact I have NOT made peace with, just as an fyi, but today is a huge moment for G. She made it through elementary school. This is a miracle, one that very few in her class even realize.

I hope there is cake at the shindiggity afterwards.

She has a fantabulous dress made by my friend Suzanne (who is a professional seamstress, she can make dress patterns fit a 4’10” slightly spherical girl), Sue’s daughter Rachel made G some fantastic jewelry, we tried to stretch the glitter leopard print shoes (sigh) which she loves…she is so excited.

She also got to write the prayer for her graduation (Catholic school), she wrote a beautiful prayer, simple and heartfelt (and she took it to school with her or I’d print it here).

I am just so grateful.

So even as I forget things, mis-spell things, and botch most things generally (I am a moron when G is on treatment, apparently), I am so blessed and grateful today. We were told this day would likely never come.

Unprintable you, NF. Unprintable yourself too, brain tumors. Genna graduates today.

Peace,
K

Oh, and we go back to CHOP tomorrow for eyeballs, that’s kind of an uber yikes moment that I am trying not to think about before 5:30 a.m. tomorrow. Ergh.

And ps if the video didn’t work, we are getting a puppy. I am between totally psyched and wildly terrified, I am desperately reading training books and trying to learn everything super fast. Rosie is beside herself with joy, she has countdowns written all over our house…and a whiteboard list of names (including Fluffle Puffle, Violet, Sally, Fangette (don’t ask)…excitement is HIGH. : )

And double ps, prayers for Lexie scanning today and Emma who has been in the hospital 2 weeks and Michaela and Gabbie and all of our other friends we are praying for so much…

AND a moment of remembering for our D-day veterans…

ok, The End. ; )

Saturday, May 26, 2012 1:55 PM CDT

Just a brief note...

a happy note.

Yesterday, my baby turned 10. Rosie has been our sunshine pretty much since the day we brought her home...she is so charming and shy and sweet, and the last few months have been so hard, with G in this spot...especially because Rosie has started to connect dots from G's illness to her own NF.

In what is a somewhat mind-boggling turn of events for those who know me well, we sort of fell into a very special surprise for Rosie's birthday (and sort of secretly for Andrew, too, who has desperately wanted this for YEARS).

I hope this works...

Even G is happy about this...

(and as a side note, she did great this week. Those extra meds really kept the chemo side effects at bay, phew!).

peace,
k

Monday, May 21, 2012 8:35 PM CDT

Hi, all.
Epically long day. But G tolerated the chemo well, again. Traffic wasn’t terrible, only took us about 2.5 hours to get there this a.m., not bad…and that’s with ME driving at reasonable speeds, Dave went to work today.

I did nearly forget the LMX/tegaderm moment, then traffic was too tight for me to pull over near Washington’s Crossing, so I did it at a red light. YIKES. And that was with slapping a piece of Glad Press and Seal over the cream instead of tegaderm. Onco mom secret: if your kid needs numbing cream for something, a piece of Glad Press and Seal sticks to skin without hurting, and it keeps the cream in place. Someday, in a bizarre and likely unpleasant set of circumstances, someone out there might thank me for THAT tidbit.

Clinic was a zoo today, G saw Dr. Matt first (still a little awkward for G, I am just not sure why), then we waited, and actually got to see Dr. B. Somehow everything seems ok when we talk to Dr. B. I thought we’d be back on the nurse practitioner list today, which we haven’t done since ’06. I was so glad to see Dr. B. Very few people manage to not just tolerate but appreciate my neuroses…or can give me a hard time about G’s daily nap in history class. : ) So we were glad to see Dr. B.

She listens to me. I appreciate that.

Anyway, G did some beading with the art therapist and then it was pretty much time for us to go get some chemo. This time we had a window seat, which was nicer, I felt less claustrophobic.

G did great. She was a trooper. She nearly fell asleep while getting the Avastin, but then woke up when the Child Life specialist came by…and then she wanted to wait until Meghan came back, so she stayed awake. I was glad she was sleeping, until I realized that meant I couldn’t get more coffee. Oooh, snap. I won’t leave her alone , really, not for more than a minute or two. That’s all me, I know, but whatever.

We did add an antibiotic during the infusion and another med tonight to try and help with some of the mild issues we faced last time, so as to avoid having mild issues turn gigantic.

The worst part for G today was getting the tegaderm off her port at the end of the day. Somehow even the odd furniture polish-smelling adhesive remover didn’t ease the sting. But she is so mighty.

Well, the other worst part was that her favorite radio morning show had a drastic change on Friday, all the happy banter and games and fun that so encouraged her are gone. She was so sad about that this morning, she finally asked me to change the station. SHE ASKED ME TO CHANGE THE STATION. Um, for folks who know G , this is akin to me refusing cake. Yeah. Watch for those 4 riders of the Apocalypse, they might be getting close.

So overall, she did well. She felt a little funky on the ride home, and I just gave her the new med (which I had to get at ShopRite), but so far she hasn’t had cramps tonight. I hope she falls asleep fast, the meds should help.

We didn’t leave clinic until after 5, and got home a bit after 7.

The adjustment is a bit hard, I can’t lie, somehow getting back into the swing of things is hard. Strangely enough, it’s so normal even as it’s so surreal. I’m not sure what’s more disturbing. I still can’t believe any of this is real. After nearly 8 years, I still can’t believe it.

But it is.

Thank you all for praying for G. She is so mighty. I wore my G-foRce! shirt today for her, for BT & NF awareness month, for our friends, for my heart.

Thanks, all,
Peace,
Kristin

Monday, May 14, 2012 3:58 PM CDT

Hi, all.

So we’ve had a quiet week, that first sort of tentative week of a new protocol is always a little tippy toe. I hover at school, I obsess about every possible symptom of a symptom, it’s super awesome. But honestly, G did quite well. She had some mild manifestations of the irinotecan on Tuesday, she came home early from school so she could rest (she didn’t sleep at all Monday night—came into my room at 3:30 a.m. to say she had been up 90 minutes already, ugh!). We also completed the first round of temodar, although apparently I am REALLY bad at remembering the premeds. That simply means we did everything a little later than I wanted to, but it got annoying every night to be like “DOH! The zofran!” and then have to wait another half hour before the temozolomide.

G tolerated the temodar (same thing) just fine, I didn’t even give her zofran throughout the day as suggested because she didn’t need it (and the side effects can be uncomfortable). She asked for it once (and yes, THEN I gave it to her), but really she did well.

So one infusion and five doses of temodar, done.

I generally lay pretty low in this kind of season, last week was no different. Aside from our normal running around like maniacs, I mostly tried to pull things together here.

My seniors finished today, this year I don’t think I’m attending any of the festivities (I do get invited to graduation parties, but I know that’s mostly out of politeness, and I bring an elephant even if the host doesn’t request it). Hopefully tomorrow I can start running again, now that I am down to teaching one class a day. Granted, I have a massive pile of final work to finish going through for my seniors…ergh.

Genna DID get to go on her class trip to …wait for it…PHILADELPHIA. Sigh. But she had a good time, even if she couldn’t see the crack in the Liberty Bell. She was so worried all year that this trip would fall on a CHOP day. It would have, if CHOP hadn’t screwed up our neuropsych visit, so I guess something good came out of that.

AND, Andrew finally, FINALLY got to pitch in a varsity game. Phew! He came in in relief, and did well. I am so relieved. His only other varsity time was as a pinch runner, and that moment kind of played out in roly poly pell mell tumble bumble fashion (and I got to see it, it was hilarious once I was sure he was ok, he literally rolled down the third base line). : ) We are so glad. If it ever stops being cloudy/rainy on weekdays, he will pitch again!

Anyway, in another jolly whatnot my brother was home for the weekend, which was lovely. We had a family bbq on Saturday and just enjoyed each other’s company, it was SO LOVELY. Mother’s Day…sigh. Not my finest hour, generally (don’t ask), and Rosie woke up with a 102 degree fever, so any vague plans we had went out the window. But my girls made me lovely cards, Andrew at least remembered to SAY Happy Mother’s Day, and the weather was perfect, so even though I was a pile of Meh things weren’t awful.

I am a fail at Days of Mandatory Maternal Happiness.

And now we are kind of desperately hoping G doesn’t get this little fever bug…because for G, a fever means instant Trip To Local ER. I need to type out our Camiolo Medical Manifesto just to have in case. I learned that you have to walk into the ER holding the paper with Everything Spelled Out. Literally. And the phone number of our doctor in very large print at the top of the page. Ugh. So pray G does NOT get a fever! Please…

So this week G starts up Bactrim again, we try to do all our busy stuff, next weekend has some fun things…and then we go back to CHOP on Monday for Dose Dos.

Heheheh.

Sigh.

Thank you all again for all your support for G and for us. We are so grateful.

And now my girls are arguing, first about the game they are playing, then about G’s cough…so…life goes on.

Peace,
k

Monday, May 7, 2012 7:28 PM CDT

Hi, all….

Today did not rot nearly as much as I dreaded it would.

Genna was nearly berserk with worry by last night, the weekend was so full of wonderful things (History Day. . . and Genna’s overflowing relief that she did NOT advance to Nationals. . .like, she was cheering LOUDLY for everyone else), especially Dance for Genna Day—a beautiful gift from Joanna Andriopolous and everyone at AP Motion Dance Studio in Flemington. Genna was so loved by the girls at the studio and by Miss Joanna; J’s dance to G’s favorite Matthew West song, Strong Enough, was spectacular, moving, and artistically amazing. I will try to add a link to the video later. Thank you all!

And then we came home—and the dread of today reached a fevered pitch for all.

I was kind of already there, I had to pick up the home chemo at ShopRite yesterday. There were a few life lessons in that moment. 1) if you pick up chemo for a kid at ShopRite, the pharmacist WILL come out from the Inner Sanctum to speak to you 2) I am so grateful for insurance. G’s temozolomide is $533 A PILL. We paid $25. Thank you, DRS Technologies, for having the blessing of insurance for your employees. 3) Holding it together at ShopRite while picking up chemo for your child to start again…not super easy. Zombie!

So anyway, I was already a menace.

Poor G finally said that which she has never said. I kept trying to give the ol’ Team Spirit pep talk, and she finally said, “well, it’s ME who has to do it”.

Therein lies the road to maternal madness. If I could do it for her, I would. But I can’t. So she suffers. Insert unprintables.

So we got through last night, and schlepped off to CHOP this a.m. G wangled a bagel out of Dave, traffic was only moderately bad, and we got to CHOP around 9:37 (left home at 7). G made a BIG SPLASH wearing her giant feather headband into clinic. She did not appreciate me singing “her name was Genna, she was a showgirl” after her, but I guess that is understandable. She got triaged (much giggling from the room, then DAVE came out wearing the headband), accessed (only mild drama, she felt it more than she wanted to, but was an absolute trooper.), and then painted a picture with the art lady.

As a side note, accessed is euphemism for “someone sticks a ¾” needle into your chest so they can take your blood or give you poison, er, medicine. ”

We chatted with Dr. B, G rolled out some new jokes (imagine!), I for the first time EVER opted NOT to look at the scan from Thursday (it looks exactly the same as a month ago, apparently. So I asked if I had to see it, if it’s truly the same. Dr. B assured me it was, and THAT image is etched on my retinas for eternity, so I was WAY ok not seeing it again. Sigh). We talked things through, I voiced some of my concerns, and I do actually feel a bit better about some things after our conversation, within the context of me screaming inside of my head.

Then—back to the swanky new day hospital.

G was agog that she got a tv to watch, a recliner, not one but TWO warm blankets, and snacks galore. Really, Alex’s Lemonade Stand made this whole area SO MUCH NICER than it used to be. We know what it was like when Alex was at CHOP (she passed away 3 weeks before we started); it was not nearly nice like this. G got herself settled, and then the zofran got plugged in…

Sigh.

That took 30 minutes…then the Avastin got plugged in. Next time I’ll take a picture, we were awkwardly close to the nurses for me to do that, but the bottle is so weird, it’s like an old school glass bottle, kind of the shape of a hydrogen peroxide bottle. The nurse poked a tube in the top, flipped it over . . .

And poisoning my child, Round 5, commenced.

G was quiet then for a while. She was scared, and there was nothing really great on tv…but her blood pressure stayed ok (that can be an issue), and then Meghan the Child Life Specialist came to get G her Beads of Courage, and then Dr. Matt came over (and G learned that she can get a bead for meeting with him…a rainbow bead, which amused me to no end. If I talk to Dr. Matt will I get rainbows and unicorns and sparkly happiness? Ok, in my snarky mind I found the idea hilarious, poor Dr. Matt. I am a menace). We chatted…and THEN Woody the Singing Guy came to sing for G.

We love Woody. We first met him in 2005 or 2006 when G was inpatient and he came to play his guitar and sing in the onco playroom. We saw him again last year, and today G was SO happy to see him. He played her a song, and then asked if she had any requests. Normally folks aren’t that familiar with G’s favorite music, but Dave finally just said, “she loves Christian music!”—and that led to a LONG lovely chat with Woody about his interest in Christian music, his work with an upcoming artist (and survivor) named Paige Armstrong (who is married to Stormie O’Martian’s son. Yes, friends from high school, break into aerobics NOW. ; ) ), he gave G two CDs, and sang us the most beautiful song…it was one of those moments that you occasionally have in life when Things Just Come Together. The smile on her face, she was radiant when Woody gave her his CD, she just smiled and smiled …

Which was NOT what we expected today. Smiles. Yeah. That was a blessing.

And Woody mentioned his work at Geisinger hospital…and I said, “hey, G, that’s your buddy Michaela’s hospital”…and Woody KNOWS G’s NF friend!

Seriously, it was a moment.

Finally Woody had to go talk to other people (we were hogging the Hope), and by now the Irinotecan (ie scary as all get out med) was going in. And still G did GREAT. No throwing up, no other GI issues, she wanted snacks (yeah, what else is new?), but she felt GREAT.

THEN we saw our buddies Meri & Caitlin (who has grown like a foot since I last saw her!). Thank you guys so much for stopping by…thank you…G kept saying how much she loved the box (and um, you know how I feel about single serve mini-eggs, ay caramba).

After nearly 4 hours plugged in, G was done, and we were good to go.

Even the ride home wasn’t horrible! Egads!

I know the road WILL get harder. Now G is having some abdominal pain, she’s pretty unhappy but not puking, I have her curled up with a hot pack on her tummy right now, and I need to give her that $500 pill in a few minutes. But we are started. The tumor battle has commenced again. And at least this first skirmish was not nearly as bad as we feared. It may be worse tonight, and I KNOW it will be worse after more rounds (there is a cumulative yikes), but today was not horrible. We laughed a lot, I snarked whenever possible, and really, we got through.

Thank you all for carrying us through this first step in THIS round of the battle.
We
Could NOT
Have Made it
This Far
Without
All of You.
Thank you…

Peace,
k

and sorry for all the parenthetical expressions, my brain is kind of all “Squirrel!” after today, if you know what I mean.

Thursday, May 3, 2012 5:58 PM CDT

Hi, all.

So today we had the baseline scan for treatment, and they let us come home. I’m guessing this means at least nothing was catastrophically needing surgical intervention today. Well, I’m hoping. I know things can fall through the cracks…hoping the things aren’t us.

We had to leave ungodly early today (5:13 a.m.), got to CHOP right after 7, raced in…and then waited. And waited. Strangely, MRI was already running behind by 8:30 (which means someone was having a really bad time, and my heart goes out to them).

In filling out the paperwork that we fill out EVERY time…got to check yes by the “port?” box. Alas. This was an unpleasant “first in a long time”, aka a denial derailer. That said, G was thrilled because the tech told her she was 4’11”. As an added bonus, her first port access went really well. She was a bit put out because they had her lie down, and we all had to wear masks…a different moment than 2007. But the nurse accessed her quickly and G felt no pain. Yay, LMX.

She sedated her normal way (yelling of jokes to the nurses once she got her versed, which is always quite a scene), the nurse practitioner kept laughing at her…

After the scan (which started nearly an hour late), G needed to get moved upstairs because Seashore House was full…so we had a parade during which she kept mumbling “They gave me more medicine! They gave me more medicine when they gave me the contrast!”…which is a far cry from her normal “I HAVE NO MEDICINE IN ME!” after a scan. She ate some saltines, drank some juice, and then WENT TO SLEEP. Which she never ever does.

That is likely because we had NO OTHER REASON TO STAY AT CHOP, and we totally thought we’d get home by 1. Argh.

You KNOW you’ve been there too often when the nurse filling in for another nurse on lunch says, “I see you guys here all the time but I’ve never had you”. Yes, that is BAD. We had lots of people saying hi to G today.

Sigh.
But they did let us come home, and we were there a good long time because of G’s long nap (2.5 hours! Egads!). So I have to hope that no news is not horrible news.

So now the official Countdown to Chemo has begun. I got a call when we got home that the temozolomide will be available at Shop Rite tomorrow. Woo. I wasn’t sure we were definitely starting that Monday…I guess we are. Woo.

Nothing freaks out grocery store pharmacy people like ringing up chemotherapy for a kid. Can’t blame them for that.

So now we fill EVERY waking moment between now and Monday. Tomorrow is school, then gymnastics (then maybe out to dinner with sibs?) then Saturday is the state History competition (kind of hoping G does NOT advance…no way she could do nationals once we are fully into chemo), then G has a CCD party Saturday night, then Sunday is Dance for Genna day at AP Motion (much love to Miss Joanna for setting up this CTF fundraiser so quickly), so the weekend should be long but fun for G…

She keeps telling me she’s dreading starting again.

Me too.

At least Dave said he can come Monday, G & I were planning to go alone, but Dave wants to try and come this first time, and honestly I’m a little relieved, I have a lot of anxiety about that ride home after these particular drugs.

So that’s our story of today. We got through. We just have to keep on keeping on, and hope for the best.

And yes, G is planning to wear her giant feather headband to clinic on Monday.

May is both NF awareness month AND brain tumor awareness month. Check out www.wallofcourage.com for great brain tumor awareness gear (including Genna and Rosie gear)…proceeds go to Children’s Brain Tumor Foundation, I think…my friend Heide, mom to angel Jessica, did a marvelous job on all of this stuff…

And geez, I am wearing a LOT OF THIS GEAR every day. Because honestly, my awareness is crushing me these days.

Off to eat a lovely meal courtesy of Mrs. Temple, a neighbor…thank you to all who are texting G, sending her cards, just keeping her afloat. She truly is buoyed by all of you, I can NOT overstate how much those texts and pictures and things mean to her…thank you…

Peace,
k

Friday, April 27, 2012 1:16 PM CDT

Hi, all.

Well, we got through the week. G was so sore on Tuesday, she was miserable. I let her stay home from school, my mom watched her while I was at work. The poor kid literally slept almost the entire day. She returned to school Wednesday and by yesterday was starting to feel a bit better.

The old “oh, she won’t be that sore” line from the docs was a Load of You Know What. Malarkey or something like that. Ahem.

G was so tickled by everyone texting her. “There are so many people encouraging me, mom,” she told me the other day. You all truly have carried her through this. I thank you for that.

She asked me again what would happen if avastin didn’t work, would she die? She is worried, and I keep trying to defuse the moment and tell her that this is not an issue right now. I don’t know how to have her not worry , I don’t know how to have ME not worry…

Dave’s birthday was Tuesday, we really couldn’t do much of anything, we celebrated Wednesday, but it was so low key and kind of meh. The girls were really into it, but Dave and I are just…meh.

So we are slogging through step one. I feel once again like we are sliding at ever increasing speed towards May 7. Sigh. I’m trying not to worry about next Thursday’s baseline scan. We need nothing weird to be brewing, G cannot need surgery, that pushes chemo back…

But we have a lot to do between now and then, and I am just trying to keep G happy AND I am trying to not lose patience with her over stupid homework assignments and random messiness. Nothing says GUILTFEST! like getting really irritated at your kid who is fighting brain tumors. SIGH.

Tomorrow G will be rooting on her RU LAX big sisters in a MUST WIN game at Georgetown, we have to figure out how to stream the game online, we don’t have the right channel on tv…that will keep her busy for a while. Then we are off to see Dave’s brother and sister in law & baby who are in town for a visit…THAT is G’s nirvana, seeing any of her little cousins who all live so far away.

Then we have homework and whatnots galore, maybe G and I can do some stuff around the house…I don’t know. I am finding it extremely difficult to focus on anything. Going back to work this week has been a real challenge, thankfully I am teaching stuff that is very engrossing and interesting to me (the road to World War II in one class and NGOs/the UN in my modern history class). Still…I feel like road kill all the time. The piles of time I spend driving are not good for my mental health, apparently. Too much time to think.

But spring is here in force, and one of the art moms G was talking to must be some kind of pharmaceutical rep, she told G that she had heard really good stories about Avastin. This made G feel a lot better (what, Mom’s good stories don’t count? ; ) ). We are trying to find some hope, trying to regain our footing, trying to once again get our game face on and NOT have the game face look like one of those pictures you can buy of yourself on Kingda Ka at Great Adventure. Eek.

I am trying also to plan G’s 8th grade trip with mom. Planning a 3 day getaway while doing chemo that will likely make her sick is proving to be a challenge. We just want to go to Cape May, I figure that’s low key enough that G can take it really easy, and I can drive there easily. I also have to take Rosie on her 10 year old overnight with mom (traditions we set up with Andrew & Genna…but their trips didn’t happen the same year! Eek!). The logistics of this BECAUSE of the logistics of chemo and budget are making me crazy…but having a trip to look forward to is a wonderful thing, at least eventually!

For now, I am just totally hiding and an ABSOLUTE MENACE when I talk to people in real life, I am so sorry, I just feel like every nerve ending in my body is set to scream. Honestly, I kind of had that moment in my car last night. Sigh. Sometimes you just need to actually scream unprintable things at the heavens. You just do. But if you see me in real life…I am sorry in advance. I am like a walking zombie, the really scary kind that bangs on the door of wherever you are hidden, moaning and flailing limbs all around.

Nice visual, right?

But Genna still has a laugh or smile or hug for you if she sees you, once she kvetches about the soreness of the stupid port. ; ) She is due some kvetching, I feel…

Peace, and have a nice weekend, all…
GO RU!
Peace,
k

Monday, April 23, 2012 5:44 PM CDT

Hi, all, super fast note.

Worst traffic in a long time getting to CHOP (2 hr 40 minutes, and the last 14 miles took an hour. Ugh. An elite runner could have RUN that distance in the time it took us to drive it. How messed up is it that I know that?). On the way down G asked what would happen if this chemo didn’t work, if her tumors grew that would be really bad. I gave her some kind of answer about trying something else.

She asked again…”what if it doesn’t work…” and she paused, and had a funny look on her face…” if my tumors keep growing, I could die.”

I almost can’t even type this now. She has never…

I told her the LIST of things we would try next (pulling stuff out of my ample backside, because if Avastin doesn’t work that is just what I plan to do, hunt down ANYTHING to work). We talked about how everyone EVENTUALLY goes to Heaven, all our family and friends are just waiting for us…that got her distracted, but…whatever.

And then we finally got to CHOP. Woo.

We saw a favorite onco nurse as we DASHED from the bathroom to the registration area…then the registration took forever, we finally got called back…by a sedation nurse we know. Yeah, small world. Things just were very slow and running behind today, and G was nervous, so nervous. This made the timing worse. The sedation doc recognized us from 2 weeks ago (I did say, yeah, guess how that MRI went if we’re back for port placement. I know, you can only DO that job if you don’t connect dots, but ugh) …the nurses all know us…ugh.

But G came in treating it like a spa, she requested her hot packs and warm blanket and lmx cream immediately and got everything right away (our nurse was awesome—also got the iv on one stick, no bruise later!), she was much happier then. The child life specialist let G see a port (we asked, it’s been a long time)…and we found out that G would be sedated away from us, which is different than MRI days. The goddess of a child life specialist offered to stay with G until she fell asleep…

By noon (we were scheduled for 11) G was “Deathly Hungry!” (as she said it), she didn’t want to do anything, she just “want(ed) to get this over with!” Finally they came to get her…as they rolled her out of sedation she sang, “I’m the queen of the castle!” and waved Dave a peace sign…that was REALLY a #2 for the number of chip bags G wanted. Doritos are a scan/surgery day treat now. We followed down to Interventional Radiology, everyone suited up…and then they took her through the big doors…

I called to her “don’t break all the machines in there!” I had nothing really to say…she called back, somewhat insulted, “I WOULD NEVER DO THAT!” . And then the doors closed.

This was a very hard moment.

Apparently she took a while to fall asleep, she told her same silly jokes over and over and asked the child life lady for a hug. The procedure took about an hour. The port is on the other side from the old ones, the doc was worried about the shunt tubing. Despite everyone’s assertion that G would not be sore, her neck really, really hurts (they have a secondary incision there). I gave her Tylenol, I will be switching to motrin before bed.

This day sucked. I don’t normally use that word here, but it did. I just sucks, all of this. Everything about this day was wrong, big picture.

But small picture, G got her Doritos, and some Munchie mix she loves that is rarely in the Wood Center shop (Doritos, cheetos, pretzels, and Sun Chips mixed). She is saving that for tomorrow. The procedure was uneventful, also good. I tried Yoplait Greek yogurt with fruit and granola and liked it. Um…my mom made a lovely dinner that we are about to eat. Um…there is still Costco cake in my fridge, I felt too sick yesterday to eat any. So small picture, there are some yays.

And in one colossal yay, Poppy’s surgery went amazingly well…I am so so so so happy for her and her family…just so happy! They think they got the whole tumor…after all these years of battling, that is a miracle, and I am so happy for them.

G’s first groggy garbled words after they rolled her back to us, “what happened with Poppy?” (she heard me talking, I guess)…

So we enter the next moment. Next Thursday we baseline scan, and Monday, May 7 It Begins.

Thank you so much for all the prayers and support. We so appreciate you…

Now G is trying to feel the catheter tube under her skin. Ergh.

Peace,
k

and now she told me she saved the picture of Doritos in her phone (thanks, Melissa! ; ) ). Endless inspiration there... : )

Sunday, April 22, 2012 12:39 AM CDT

Hi, all.

Well, it’s been a busy, busy week here at the Casa Camiolo. Everyone went back to school except me. Still, I spent most of the week desperately trying to get my notes done for the rest of the year. Sigh. Fail. I did get through the next 2 chapters and then some for US II. I teach from detailed notes, I have found since G got sick, and as she has had more significant setbacks, I have zero ability to remember anything. It is very disconcerting. So prep takes an inordinate amount of time, I think I spent about 12 hours this week just prepping. I’m also a speck of a perfectionist about double checking the text against my college notes, checking out online resources, looking at books and images that can make a lesson better . . .and thus I move at glacial pace. Ergh.

And of course, I needed to ponder Tomorrow. Port Day.

But before that, and around all of the driving/activities/etc. of last week, Genna had her Confirmation yesterday. The day was gorgeous, the Mass was really nice, G got to carry up the gifts (we were so worried she was going to face plant), we had pizza and cake and everything was lovely.

We got some wonderful pictures, between my sister Laura and me we really did get some nice pictures. This just matters a lot right now, which also is a nagging dread in the back of my mind.

Today we headed down to Rutgers for the RU Unite ½ marathon and 8k. Our RU Lax family (coaches, alumni, staff, even a parent!) ran for G. They had fabulous purple t-shirts and piles of determination. The day was soggy and 50 degrees (getting colder now), a vast difference from yesterday’s 75 and sunny…but everyone did an awesome job. G was completely distracted from the looming yikes of tomorrow, and she loved getting to see the girls. Thank you, thank you Coach Laura and everyone...just thank you. This means so much to us, to G...

Well, she was distracted until we got to lunch…sigh.

In one exciting first for my girls, they got to ride a bus standing up. Imagine G standing up on a campus bus. I had her in a vise like grip as I braced myself, I could just see us domino-ing on top of the column of people in front of us. Eek. But we lived to tell the tale.

Now I desperately need a nap so I don’t sleep through 6pm Mass.

Anyway, tomorrow we report to CHOP at 9:30. Surgery should be around 11. So by lunchtime tomorrow, G will be re-ported.

This is the most depressing déjà vu EVER. Well, after the scan of 4/3. Failing chemo in the first round is a pretty epic déjà vu, too.

G has been busy with so much, she is only in the last few days starting to really feel dread about tomorrow. She is concerned about where the port will go (which side), I don’t think she has made the “spike a fever head to the ER” memory jump yet. I figure she’ll remember that tomorrow. Sigh.

So we are grateful for a lot of smiles this weekend, a pile of small happinesses, the little things that can make the big yikes diminish, at least temporarily. Meeting Andrew’s friend’s dog was one of those moments (Debbie, no joke, your dog totally made my day, she was like a bolster pillow with legs…love!) And at least G has felt SO MUCH BETTER since the Sorafenib ended. She is getting out of bed in the morning, her skin is 1000 times better, etc. For being an “easy” chemo, it whomped her pretty solidly.

I will try to get myself back to the computer tomorrow if I can. I still have to figure out how Andrew is going to get to school, how to get Rosie out of bed early, the logistics of all. We also are getting a pile of rain tonight, which is desperately needed, but I hope there’s no flooding in Lambertville. That could make for an interesting drive tomorrow.

Please pray for G tomorrow. This is really, truly not going to be a super fun day.

Sorry this update is so dry, I don’t feel very well, I need to go try to doze for a little bit. Granted, I can’t promise that a post-re-porting update will be all that jolly and whatever.

Please too pray for our friend Poppy tomorrow. She has the non-NF version of G’s original tumor, and tomorrow, due to growth, doctors are going to try and surgically resect (ie remove) the tumor. She is Rosie’s age, and tomorrow is going to be WAY tougher for Lisa and Brian and Lily (Poppy’s fam) than it is for us. Please remember her tomorrow, she is in England, so she’ll be well underway as we get started.

Too many children afflicted with brain tumors. Just too many. Rosie’s fun time this week was finding her name on my new 2012 BT Awareness t-shirt. Woo.

My hands hurt, I am out of here…peace,
k

Saturday, April 14, 2012 8:13 PM CDT

Monday, April 16th note:
with much love to our RU LAX family...

http://bcove.me/eckkxwo0

is the link to the video about G and the girls.
I kind of wish I had a stunt double, but...oy.
Hopefully this works, otherwise you can see the video at www.scarletknights.com and then click on lacrosse under the women's teams tab.

we love you, RU LAX....
***************************************

Hi, all.

I know, 4 updates in a week? Egads!

Yesterday we officially got our plan.

As I may have said already, on April 23 Genna will get her port. We aren't sure if it can go where it was before, the interventional radiologist will have to tell us that after looking at the old site.

On May 3, G will have a baseline scan. We will just scan and come home. That's going to feel wrong...

On Monday, May 7, G will start a combination of Avastin/Irinotecan at the hospital (about 3 hours of infusion time, ish) followed by a round (5 days) of temozolomide at home. The A/I combo repeats every other week, the temozolomide the first 5 of every 28 days. G tolerated temozolomide well in 2005, and it gave her a year of stability. With low grade tumors you can do repeats on chemo, so...we'll see what happens.

After getting the run down from the nurse practitioner, I got the mom down from my fellow bt moms who have experience with this protocol. I had a few concerns, and the moms gave me the info I needed as well as the things I need to be a neurotic psycho about...I mean, that I need to request nicely in advance. I am going to compile a giant list and e-mail Dr. B.

This is a strange world, for the first time in 6 years we'll be back to seeing a nurse practitioner, not Dr. B every time. That’s fine...for the tough questions/list I have, I need to go to the person who knows my G best, and who knows that I will ask 50 questions for every statement made and that’s ok.

I also found out yesterday that Genna's neuropsych evaluation that I set up in January for May (the first open appointment!) was NEVER SCHEDULED. No wonder I never got the promised confirmation e-mail....I just figured the lady had written our e-mail wrong. Unfortunately the next available appointment is September...so much for getting this done BEFORE G goes to high school. Now I’m praying for a cancellation, the doctor was so nice, I called her directly by accident, and she personally tried to get us another date...she's going to be out of state on May 11, the day I’ve had written on the calendar since mid-January...

Yesterday was not a super nice day.

I also got the copy of the scan & the report. I skimmed the report and almost couldn’t breathe, so I stopped.

Yes, I know, it was Friday the 13th. Seems fitting, right?

And the other random yikes of the day I really can't put online, even if I want to. Yesterday was not my finest hour on many levels.

Still, I am trying to lay things out for G, tell her a bit of what to expect, always in the context of Whatever Comes, We WILL Manage It. So your tummy might be upset? We will give you zofran and some other meds. 3 hours plugged in? We'll bring travel Scrabble, you can take a nap, we'll do crafts, we’ve done THAT before…and then she feels better. At least with Avastin/Irinotecan I can tell G about friends who have been through it already. That does help.

But honestly, the whole business is terrifying.

I finally realized today that our future once again is obliterated. Failing a chemo after the first round does that to you, and it took me YEARS to get past that feeling (seriously, I think I finally started planning ahead at all in the last 2 years). With chemo failure, and aggressive tumor, I feel like even thinking about a much anticipated family wedding at Christmas time is presumptuous. I feel like we are promised Nothing. This is a sickening, paralyzing feeling...and really hard to fight off when I find myself in a quiet moment.

But G had her Confirmation retreat today, and she LOVED it, she came home giggling all in one breath, ("IsaidIhaveabraintumorandtheguysaidIwassosmart"...at which point I interrupted, "'Because you have a brain tumor? You are sooooooohooooo smart, YOU have a brain tumor!" which she thought was hilarious...which kind of made me want to laugh and cry at the same time, hearing her speechless with laughter as she tried to explain what she meant)...she is all about the youth group, and friending church on Facebook, and she had pasta, so life is good. She is scared but positive...

I do see things sometimes that scare me, little things that likely only I notice...

I pray this combo works. Please pray it works.

And while I know this probably won’t mean anything to the folks who read here...if anyone finds some amazing article or testimonial about brain tumor stuff, feel free to give it to me...I respect you all and will read anything given to me (but honestly, I dissect EVERYTHING, I am a monster of close reading and what the science is behind things—so please respect that I will be honest if you ask me)...

...But please DO NOT give it to Genna. She doesn't know what to DO with that kind of information, and then I have to explain things that she doesn't need to worry about.

And because she knows her momma, she can tell when an article is the kind of thing, in her words "that you are going to hate, mom".

She doesn’t need that stress. Thanks.

Anyway...tomorrow is the last RU home game, G is so pleased to go…the weather is supposed to be gorgeous, and hopefully for a few hours we can just enjoy some family time. G's big sisters had a huge win last night, we are praying they work their magic again tomorrow! G loved all the texts after the win : ) . Monday the kids go back to school and I HAVE to plan out the rest of the year...now that I know how many days I’ll be missing…

Alas.

Please pray for us. The anxiety is killing us, not just me. Dave actually has a fever tonight (and he's finishing up tax work), Andrew's arm is still yikes, and I watch stupid crap tv until I am falling asleep, and then I race up to bed, hoping my brain will stay sleepy and not click into YIIIIIIIIKKKKKKEEEEESSSS! mode. Usually that way I do get about 6 hours until my brain clicks on around 5:30 or 6...Rosie has been a little...intense..we are all falling apart.

Please pray for us, especially for G. She is the one who has to fight, we just have to support her.

Peace,

Kristin

Ps please pray for our friend from camp, Arianna. She needs prayers more than we do right now. :(

Thursday, April 12, 2012 6:54 PM CDT

Hi, all. This is kind of long, so…yeah. Just figured I should warn you.

And happy Easter still. Major Catholic perk, Easter is the whole week & then several more weeks of random festivity.

Which is good since I am a pile of festivity waiting to happen at Any. Given. Moment.

Sorry, hard kind of day here.

Easter was nice…poor Rosie DID spike a fever almost 30 seconds after I posted here. Yikes. She pretty much slept for hours. In an epically huge act of mercy, Meg said we could still come (Rosie and her favorite cousin tend to be surgically attached to each other as soon as they see each other…and Meg’s crew was heading out on vacation this week, so …) . Anyway, we are so blessed that we got to go there.

I have a half dozen sisters, all of whom I love a lot (and my 2 bros, too!)…Meg and I grew up together (she is the next gal in line), there is something about being with someone who just gets it, gets the ungettable because you have so much history…and Meg is a nurse practitioner so she knows the medical reality we are facing, and Genna loves my BIL, Mark (they took over Rosie & Phoebe’s loud greeting of I-i-i-i-i-i-i-i-I yelled while hugging, since the girls were not allowed to hug! ; ) )…we so rarely get to spend time with them…Meg and Mark can BOTH finish my weird musical sentences. What more can a girl ask for?

Let’s put it this way: Meg is the ONLY person I actually ever CALL from the hospital. Ever.

We sat on the deck, barefoot, in the warm sunshine, talking about all and nothing, ate a leisurely dinner of much deliciousness, sipped Proseco, and just generally relaxed and enjoyed being together.

Seriously it might have been the longest I’ve gone without almost crying in the last week.

And so far, Meg’s crew stayed healthy. Phew!

So while I know this is different than what we normally do, it was perfect. Just perfect. I laughed, I didn’t cry, it truly was better than Cats.

This week I have been a pile of psychotic nesting. I did an archaeological dig in Andrew’s room while he was away…ew. Then…to the girls room! Then to a lamp and a storage bench and a shower organizer and a craft cart with drawers assembled and crayons sorted and piles donated and 3 giant garbage bags full of stuff and lightbulbs changed and overhead lights washed and floors vacuumed and MY HOUSE IS STILL A PIT.

As I said to friends earlier today, I am like a psycho before chemo starts and then once it does, I’m a paralyzed slug.

The more I couldn’t get through to anyone at CHOP, the more frenzied I got.

We did find material for G’s graduation dress yesterday, my dear friend Suzanne is going to make it for us…I can sew, but I can’t do the mish mosh sizing needed to make something actually fit G right (I can’t do it well for myself, either). So we drowned some sorrows yesterday in hot pink silk/cotton … I have never bought fabric from THAT side of the store…the NOT $3 a yard side…ahem.

But in 2006 we weren’t promised that G would get to graduate from 8th grade. So even amidst the yikes of this limbo week, we rejoice in that. And we buy hot pink silk and lace roses for the bottom and silver sparkle shoes (thanks, Cath!) and hope for the best.

And I came home from the fabric store and checked the e-mail again to see if there was any word from CHOP, I had kind of misunderstood (I know now), I thought there was a meeting, but it was more of a to-do list…but I need some info…

Sigh.

I just can’t let myself have too much time with my own thoughts and then I’m ok. Thankfully Lent is over, I can listen to music in the car again.

The girls had a sleepover at Grandma C’s last night to make up for us not being at the massive family shindig on Easter, and they had a great time. I had to go out of hiding to go to a wake (the right thing to do, but sigh), seeing everyone we know just is so painful. I know there is Nothing Good To Say About Any of This. But people feel like they need to talk to us…and we love everyone. Just…

Anyway, G did finally ask me today, “mom, what if this chemo doesn’t work?”. I told her that we would find the next thing. But I could feel my heart dropping…

And two minutes later she realized out loud that she won’t be able to see the unvaccinated people she so loves while she is on chemo. This makes her so sad… and simultaneously evoked a different response from me which I will refrain from sharing here. Read the next paragraph at your own risk.

I can’t protect Genna from brain tumors. I can’t protect her from the ravages of NF. But I sure as hell can protect her from the reckless arrogant willful ignorance of others.

Ok, so maybe the version here is worse? I am sorry…my fuse is SO SHORT these days. And my heart is so broken for my little girl.

G did have a lovely time today going out to lunch with her Confirmation sponsor (and beloved teacher), Mrs. K . She, and I quote, “had so much fun!”. And Mrs. K bought her a sequined planner and a leopard print bracelet and a necklace/earrings set for Confirmation. She is still giggling about details of their outing even as I type here.

And tonight, finally, after 2 calls to CHOP (apparently “it was a very long day” there. Yeah. I get that) , someone from radiology called. The port will go in on 4/23, so Genna will not miss the school after Easter fest next week…I guess that means we’ll be starting chemo around 5/7, after the 5/3 scan. The lady joked around with me, nothing defuses scheduling chemo port like a pile of sarcastic humor, I did appreciate that she didn’t shrivel up on the other end of the phone, she joined right in.

G will once again have a port.

This makes it super real, you know? And I am having a very hard time with reality.

I still feel like I need to TALK to someone a little more about the chemo choice we made. I just feel so uneasy…but really, I KNOW it’s the best option, unless someone invented something better over the weekend.

Sigh. Maybe someone will call me. Maybe tomorrow will be a different phone nurse who won’t realize I called 2x today. ; ) I just need a little info about management of side effects and such. Heck, I should just ask the BT Mom Squad. They know.

So…we march on. Andrew comes home tomorrow (the drama of his sore shoulder has also been all encompassing this week, we cannot win) , G has her Confirmation retreat on Saturday, the last RU LAX game is Sunday (home game, that is)…and then the kids all go back to school. Thankfully our high school choir tour is next week, and I am not subbing for any of the 7th or 8th grade classes (I just can’t), so I will get my school stuff totally mapped out. Now I have a better idea of how much time I’ll be missing…ugh.

Today I also found out a baby I have been praying for passed away very suddenly (she was doing so well after significant heart issues), and a dear sweet little girl from Camp had tumor spread…malignant tumor…her singing at camp was one of the most moving experiences of my life. This was a hard day.

But G is happily reading a menu from Paulie’s Restaurant to me (thanks, Mrs. K, for letting her bring THAT home. ; ) …“sorry to tell you this, mom, but there is something you will adore! Eggplant Sicilian…” ), Rosie is in the tub, American Idol is on soon (my girls are obsessed) and we live to fight another day.

(“BACON ON PIZZA? YUM!” she is gushing from across the room).

We are so grateful for all the prayers, the support, the outpouring of grief for our G. I wish we could tell you all how much it means instead of hiding or awkwardly trying to find things to say when we see people . We are so grateful.

We will fight like hell for our G…

Peace,
K

(“Mommy, what is prosciutto?”)… : )

Sunday, April 8, 2012 9:33 AM CDT

“We are an Easter people, and alleluia is our song”

Happy Easter, all.

I am trying really, really hard to find the alleluia, but it is hard. Still, that’s a great quote.

The last few days have been kind of up and down and round about. G’s initial relief over stopping Sorafenib was palpable…she made a quick list of all the good things about stopping Sorafenib, most of which I shared on Facebook…once I could go back on without becoming hysterical at the outpouring of support. We are really just without words for all the prayers and grief and love floating around on fb, and everywhere. In normal life we aren’t the sort of people who are generally at the center of any kind of attention EVER (I am WAY ok with that!)…we are deeply moved by everyone loving our beautiful G. It is painful to see how much everyone hurts FOR us, but we are so grateful and touched by all of this. I kind of don’t know what to do with it except get randomly hysterical, but hey, I am a pro at that.

Anyway, Genna is THRILLED to be able to eat in the afternoons, to help cook dinner again, to be able to grate the cheese for her birthday pizza in July, to have a port that will make things easier, to not have blisters anymore…

She did say that new chemo stresses her out…and yesterday , in a quiet moment, she said, “mom, I can’t believe my tumor grew.” I am trying to just acknowledge her feelings (while in my head I am screaming) and help her find the positive. Hey, no more blisters ! Hey, wanna make bagels?

I did still wake up at 5:40 Friday morning in advance of my Sorafenib alarm. Sigh.

I just keep seeing what that scan looked like. I keep seeing it in my mind…

We have spectacularly failed chemo before. I have to hope that this will play out like 2004, when we did eventually find stability even though we had major growth after carboplatin/vincristine. While I keep saying we are looking for plan B, technically this is plan E. Chemo #5. Back in 2004 I never dreamed we’d be here…granted, in 2006 I didn’t think I’d still have G here to be having these worries, so I am grateful for every second and every inch of ground science gains against these blasted tumors. I feel like I learned something about multi-kinase inhibitors (and the extreme un-inhibitedness of G’s tumors in the face of Sorafenib)…so for right now, I do not want to try another drug in that class.

We still have a lot of alphabet left. Please keep moving, scientists, I’m not sure you get past H or I yet…

I am trying to give our doctor Easter without plaguing her with all my questions…the timeline…etc. We do have an MRI set up for May 3, a baseline for whatever we do. We will likely have to get a port in late next week…if we go for Avastin or lenalidamide. I just read an interesting thing about a vaccine trial in Pittsburgh (thanks, bt community), most interesting was the point that some kids on that protocol had pseudoprogression, a growth-like moment that did not necessarily indicate true progression. Our doc made reference to the fact that some of G’s scan looked odd (obviously there was significant growth, too, but other parts looked odd)…I have to ask if THIS is the kind of thing she was referring to. I hope so. I hope the baseline shows some of the oddness clearing up a bit.

But hope is so slippery.

G’s face already looks better. Her ears are still bad, her feet hurt, but after 6 doses missed she already looks way less red and scaly on her face. Amazing. We are going to try and get her to eat more veggies, she was in dismay about that, but I kind of have to try. I have zero belief that it makes that much of a difference, simply based on the case evidence I have seen in all of our friends over the years who have gone hard core healthy. It’s a crap shoot. But I figure eating a little better might help G be stronger (that does have a solid scientific basis, I know), help her immune system be stronger. Won’t touch the tumors, but maybe she’ll be able to tolerate the chemo better.

That is, if I can get her to tolerate more fruits & veggies. We already do mostly all whole grain, no soda (she hates it. I still drink soda. Hey, I don’t smoke or do drugs. Give me my Coca-Cola Classic. ; ) ). We’ll see. She was all “I will NEVER GET TO EAT PRETZELS AGAIN????”…um, no, G, you can still have pretzels, let’s just occasionally eat something green or blue or red or yellow, ok?

I said to our doc on Thursday, “this whole thing is a crap shoot.” And she agreed with me.

Alas. I don’t ALWAYS like to be right.

So the last few days I have mostly wandered around my house. I scrubbed a bathtub. I washed Rosie’s sheets, which required the removal of no joke, about 57 stuffed animals from her bed…half of which are still on the floor, their room looks like a before picture on Hoarders. I wandered to the cemetery with my mom to put a few things at my grandparents’ grave (note, bad timing 2 days after epically bad scan, cue flash forwards. Dang). I wandered to the craft store to replace G & R’s Easter baskets, I tried to store theirs in the garage last year. Mistake. We went to the Easter vigil Mass, which was beautiful, but hard. My heart just wasn’t in it.

I almost went to the food store on Friday afternoon, knowing I wouldn’t see anyone I knew…but went yesterday a.m., only saw one friend, a mom to one of G’s classmates. I think she was trying not to cry when she saw me—glad she said hello, though, I nearly walked right past without seeing her. This is why I hide. I am like a zombie in yoga pants.

And today, we miss Andrew in Florida, and Rosie feels sick, like throw up sick, although she hasn’t yet…no, she hasn’t eaten candy…we may be thwarted from going to my sister’s, which would be a huge disappointment. But hey, we do that well, right?

Snap. Hopefully she is just overtired and will feel better after a nap. Yeah.

Some of my friends put up THIS quote the other day “ We have two choices, medically and emotionally: give up, or fight like hell” (Lance Armstrong) …I need to crawl out of the quagmire, and get the fight on. We are not giving up. We are fighting like hell. For my G, so mighty, and so trying to be strong…we will fight like hell. And we are beyond grateful for everyone fighting for us.

So I will read depressing abstracts and send 52 panicked neurotic e-mails to our doc, and I will go buy something to therapeutically assemble from Ikea (after I de-animal Rosie’s floor and clean Andrew’s biohazard of a room), and I will sort through my girls’ clothing and maybe go shoe shopping. Heck, I will even take one day to lesson plan out the rest of the school year so that it’s done. We will bake something ridiculous and maybe I will even run again this week. I will try to start up my desperation novenas again, even though I am feeling a little fatalistic about that. G is getting the grace for this moment even if we aren’t, and that’s what matters. We will get our game face on…I will hide a while longer, and make insane snarky small talk if you see me in real life so you don’t feel too sad, and G will plan her graduation dress and go on her Confirmation retreat. We will live, even if some days I feel like we are living in a painful fog.

My Andrew texted me from Florida on Friday night… ”tell Genna to stay strong”…

Good advice for all. We sure as heck are trying…thank you all who keep talking to G, YOU are all helping her stay strong…

Peace, and a blest Easter to all…
k
and again, thanks to the RU LAX girls…you mean so much to G…

Thursday, April 5, 2012 8:59 PM CDT

Hi, all.

Today’s final score: tumors 10 billion, sorafenib zero.

G’s scan was a lot worse.

Like, even WE were kind of shocked…

So we regroup, we plan, we start again. And we beg God. We beg for mercy. We beg for what so many other parents have begged for their bt kids.

G said to me today, before we saw the doc, “Mom, I told God whatever He wanted to do was ok, if I have to stay over, or start another chemo, it is what it is”. And I took her hand and told her she was so brave…that I knew she was scared, but she was doing what she had to do, and that meant she was so brave. I told her I was so proud of her.

We have to wait 4 weeks for the Sorafenib to get out of her system…and then we will begin again, if I have my way it will be on the day that marks 4 weeks or just after…the beast has to know that we are not going down without a fight.

G took it pretty well, MUCH better than in December. She was pleased to not have to do chemo at dinnertime anymore, she asked if she could just get a port and get it over with…but no. She knows we will have a plan, likely some cocktail involving avastin.

As we drove to CHOP at 5 am, we marveled at how gigantic the moon was, so big and white…then gradually yellowing, until it slipped beyond the horizon…and I realized that song is right. The darkest hour really IS just before dawn.

All I can do now is pray for dawn.

Thank you all for praying for us. Thanks for all who texted G with jokes, pictures, random chitchat…that makes her smile. And come hell or high water, I need her to smile. She was smiling at the end of the day, our long talk with Dr. B got G some one on one time with the child life specialist, Megan. They were playing cards when I retrieved her. “That was so fun, mom,” she said…

I may or may not go on facebook tonight, to see everyone so sad is like knives in my heart, and my heart is already broken today. But thank you. I also learned I get wickedly carsick if I text in the passenger seat for 2.5 hours. Ergh. And tomorrow I can’t eat, so this should be interesting. Good Friday my fat fanny.

I knew this was coming, but it doesn’t make it any easier.

Peace,
k

Monday, April 2, 2012 7:49 PM CDT

Hi, all,

I so have no time to update, but I know I need to…this weekend was full beyond all get out, and we are in “best of times, cruising towards worst of times” mode…

We found out on Friday that our doctor can’t see us at 2:30 on Thursday, the nice lady calling said we could go home and Dr. B would call us (bwahahahahachokegaspsputterheehee) or stay and wait. Guess which I picked? Of course we cannot leave, I am kind of hoping that we will have a decent scan and get a chemo refill. Well, I am trying to hope that we will have a decent scan and get a chemo refill…

Trying. Trying hard.

I did find out yesterday that Dr. B isn’t blowing us off, the scheduling people signed her up for a recertification workshop of some kind, right in the middle of her clinic day. Yes, another glorious moment for CHOP scheduling. But I am glad we’ll get to see her. Honestly, had they not told us, we would have just assumed it was our normal wait. ; )

So we will leave our house around 4:45 a.m. (God help us), arrive by 6:30, scan at 8, get G back around 9:30 or so, hopefully she’ll sleep a bit, more likely she’ll be weepy and demanding Doritos. Then we shall grow mossy waiting for our now 4:30 appointment.

I so need to get a cross stitch project before Thursday. Or learn to knit or something.

So that’s the yikes, the scan and all it holds. We really, really need this to not rot.

And a huge verklempt kind of thank you to all my friends on Facebook who have posted pics of G and asked people to pray…the first one I saw literally took my breath away, to think that you all are pulling for us like that…I know, I know we have such awesome support, I just still have surreal moments of “holy crap, my child has !^@&!@%#% brain tumors and is on experimental chemo and @^#&%$%@ we are scanning….!!!” .

One of the unpublicized stages of grief is the “Curse Like a Sailor” stage of grief, which I kind of cycle ‘round to at elliptical kinds of intervals.

In very, very good news, Andrew had some tests done on his sore shoulder, and he has NO damage, tears, yikes of any kind, just soreness from pitching …this is kind of huge beyond all, he needs to do college stuff over the next 5 months, and this is hugely good. Andrew also now has a great new appreciation for what an MRI means for his little sisters. And Dave managed to NOT tell the orthopedic guy that he has seen close to 40 brain MRIs, shoulder was new. ; ) So huzzah for that.

In another MAJOR huzzah, I took a pile of kids from our school (including Genna) to the New Jersey History Day competition at Seton Hall University. The weather was awful, G was dragging terribly; I had hoped to see some of the other documentaries and performances, but G just needed to sit on a couch outside the exhibit hall until her interview time came up. Of the 8 projects we presented, FOUR qualified for the state competition!!! FOUR!!! Including Miss Genna “Camillo” (no worries, no one says it right). I almost cried on the spot, she was so proud as she schlumped up onto the stage…and then more of our students got called…this was so huge for ALL of them, our school is so small, and this competition is huge…this was our first time there, everyone (me too!) was so nervous, and everyone WAS FANTASTIC!!! I am so proud of all of them. Exhausted, but proud.

And then YESTERDAY was Friends of Jaclyn Day at Rutgers. Genna (and Rosie) got to do the coin toss at the RU LAX game, all the girls had on Genna #1 shirts…we sat on the sidelines…so exciting. G spoke to the RU Vision TV people, she predicted the girls would win by 10…and THEY ALMOST DID! 14-5 over UConn, a rousing victory! Genna mostly sat wrapped up in blankets on a camp chair, she was so tired and cold…although she did yell “Go, Rut!” at regular intervals…but in the last 3 minutes she stood up and cheered at the sideline.

I have to say, the cards the girls have been sending her…I have no words. Annie McGinley, if you read here…she read your card out loud to me, she wouldn’t let me read it, she just wanted to read the words aloud…you are an amazing young woman, and I thank you for your friendship over the last few years for G. To all the girls who have written to Genna AND to Rosie…thank you. This program means so much to us, you all mean so much to us.

And even though I am desperately hoping the RU Vision people edit out all my moronic babbling, I hope you know that we totally love you guys, and we are so glad to have YOU as G’s Big Sisters. Special thanks to the coaches, too, especially Head Coach Laura Brand-Sias. You do an amazing job with the team, and you are a mighty force of awesomeness for G.

We were also psyched to see some of our favorite RU LAX alums, and the Easter Bunny. AND the tailgate had Doritos, aka Genna Nirvana.

Phew!

Wednesday Andrew leaves for Florida, and then we have scan day…and then Easter. We are doing a very, very low key Easter this year ( I am hiding at my sister’s ), I just can’t do big crowd fest right after scan day. I hope that next week brings some rest…things have just been so crazy.

If only we didn’t have that blasted MRI that can so quickly turn our entire existence into road kill in just a few minutes. Curse you, Siemens Magnetom.

Sigh.

Thank you for praying for us…we so appreciate you all…and I will try to update somehow on Thursday, but it might be late. I will likely get some word onto Facebook first because I text family members who can update there.

Please just pray. Genna is so worried, she is so worried…
Peace out, all, and enjoy some Easter candy in advance. : )

Peace,

k

Saturday, March 24, 2012 9:48 PM CDT

Hi, all.

So after I posted on Sunday, Dave felt a little funny…for those just joining us, Dave ran the NYC ½ Marathon on Sunday morning with NF Endurance, which was a logistical challenge beyond all get out AND a rarity: a race I don’t go to as support crew. The 4 a.m. departure coupled with subway riding and 40 degrees kind of convinced me that home was the place to be with the girls. Anyway, Dave mentioned at dinner that he was having some arrhythmia…

It is a well known fact that he is Forbidden To Have Anything Amiss with His Heart, so after some consultation with my sister the nurse practitioner and some reflection on family history & Dave’s age, we decided we needed to head to the ER.

Oh, the joys.

Ultimately, Dave was fine. No worries, his EKG looked good, but finally around 1 a.m. the doc told us that one of the lab results was a little high, so he wanted to KEEP DAVID OVERNIGHT. I told the doctor, in a rare moment of “flash the brain tumor card”, “WE ARE SUPPOSED TO TAKE MY DAUGHTER WITH A BRAIN TUMOR TO A WATERPARK TOMORROW AND THAT NEEDS TO HAPPEN”. There’s a reason I don’t normally do that, a) it’s mean and b) the look that people get…sigh. He assured me we should be able to go. Then he backed away and tried to not make eye contact with me again. Sigh.

I can’t actually type here what I SAID as soon as he left the room, but it was not “praise my God with a tambourine” or anything like that. Ahem. I just have nothing left for this kind of moment, even if it’s not a big deal.

I got home around 1:45 a.m., I had to still give G chemo at 6…ultimately it all worked out, Dave was fine, released at 8 a.m. or so, I cancelled the car appointment I had for 8:30 and we tried to pull ourselves together to Go. Have. Fun.

But really? Random ER? Really? (waving of white flag ensues!)

We did have a good time at Great Wolf Lodge, G had a rough time Monday (so tired, just stressed out) but Tuesday she did great, she actually went in the pool and the lazy river and the wave pool before she found a comfy spot on a lounge chair where she eventually napped. Rosie found her nirvana…she LOVES that place, her joy is the most precious thing we have sometimes…

My teen wasn’t super nice when we picked him up (understatement of century), apparently his stinkhead act of the last 2 years was NOT reflective of his True feelings, he wanted to come…which I was supposed to psychically know. Sigh. Talk about a downer. But I have to cling to how nice Tuesday was with the girls…it really was a good day.

G is still struggling with fatigue—I have come to understand that weekends are just sleepy times for her, she pretty much lay in a heap all day; the last 2 days her feet have been more sore…I can’t SEE why, I believe that they hurt more, but there’s no new blisters I can see. Her ears are a mess…I didn’t realize how bad they were because of her hair, but eek…they are like peely reptile ears. My poor G. Lotion does seem to help. Sorafenibed again!

That said, we were talking about NF the other night, a little friend from our slide show above just started chemo this week, the same one G started with back in ’04…so the girls had questions, and I apparently have some level of PTSD. Urp. But Rosie wanted to know about NF1 and NF2, which was worse…trying to explain genetic variability to a 9 year old is a bit tricky…finally I got to “some people have NF badly and some have it not so badly”. G piped up, “I don’t have a very bad case.” Rosie jumped right in, “I hardly have it at all!”

Genna has multifocal diffuse inoperable brain tumors, a vp shunt, vision impairment, learning challenges, and she’s on her 4th chemo protocol. Even my sweet Rosie, who has not needed treatment, has 2 tumors in her head.

You can’t really have only a little NF.

While I managed to just kind of smile and nod, I was struck by how that moment reflects who my G is, particularly. She is so mighty. She just takes whatever comes…sometimes with fear, reluctance, and sorrow, but she takes it and keeps on going. She is so mighty…and Rosie wants to be mighty too, and I can see she is growing into that, and I pray she is spared what G has had to endure…

We are less than 2 weeks away from the all important Scan of Doom. April 5 we will know if Sorafenib is working. Between that, and some stuff with Andrew that we have to get checked out, and History Day next weekend (I am starting to have panic attacks, I know my students are not ready…they did their projects months ago, I know they haven’t looked at them), and the end of the quarter at work (grades are due!), and other random whatnots, I may never sleep well again. I have that feeling in my chest again…

NOT the one that makes you go to the ER. Not that one. Just the anxiety one. ; )

Anyway, please pray for us. Please, please beg God with whatever you’ve got that this medication is working. G is struggling some, but I know, I know this chemo is much easier than our next available option, and …. We need this one to work…this is so serious, we need this one to work.

I have started cleaning cabinets forgotten since our kitchen was redone 5 years ago…in the crazy warmth this past week I was almost ready to go build me a backyard Stonehenge…oh yes, scan day’s a comin’….now if I can just start running again…I need to run. In a loop so I come back, but…yeah. I need to run. Run for my girls. Run all over NF.

Thanks, all.
Peace,
K

and ps congrats to RU LAX on 2 solid games this week!

Sunday, March 18, 2012 4:44 PM CDT

Hey, all.

So…it’s been another week and then some, we have been racing about and trying to just get by.

The first part of this is kind of hard, and sad, and a vent. So if you want to skip down past the green, feel free. I will color code this so you can just jump to the perky if you like. I am so nice. ; )

Please pray for the family of a little girl named Morgan; Morgan earned her wings yesterday, my girls sent a picture to her last week saying they were praying…it’s a very long story, and I don’t want to cry more today, please pray for Morgan’s family during this horrific time.

She was 8 years old.

Please pray too for my friend Angela, who is having surgery this week. Ditto long story/don’t want to cry/please pray/horrific time. Sigh.

Meanwhile, back at the Ponderosa…

G is so very, very tired. I finally looked up “chemo fatigue” today again (while G was napping). Paralyzing tiredness is how it’s described. I kind of hope this is why G is so flat, but…sigh. The alternative is terrifying. Her handwriting is a little funky, her eyes are sort of meh…G’s feet don’t look horrible but they hurt, especially her pinky toes, which she keeps stubbing on everything…her hands and legs and feet keep cramping, which is odd (no, she will not touch a banana), and she just seems really sad.

This is so unlike G.

She didn’t want to go to art this week (she was so tired), she is not getting up early anymore…not sleeping, just laying in bed and worrying. A favorite teacher is leaving at the end of the year, and G is wrecked. I think she just can’t take one more loss of someone she feels has been kind to her. With so much of her close family leaving over the last few years, she has been so unhappy. Unfortunately we are not the perkiest people to be around, so our social circle has become kind of anemic, comprised only of the toughest folks who can hang with our level of dysfunction and yikes.(we are very blessed by you guys. Thank you). So when G finds a friend…be it a teacher, a check out lady at the store, a little cousin…she is devastated when they (seemingly inevitably) leave.

“It is so hard to say goodbye,” she told me yesterday.

Yes. Yes it is. And unlike her curmudgeon of a mother, she doesn’t just get Crustacean-like about it, she hurts. And that in turn makes us (Dave & I)hurt for her.

She is struggling. And I am so afraid.

Ok, back to perkier whatnot.

Friday night we saw Roadside Stew (my bro-in-law’s band) perform at the Starland Ballroom. This was a huge gig for them, they sounded awesome, the crowd was dancing, it was so cool…so cool to see someone’s dream coming true. Dave & I are so proud of Mark…and we had a blast. I almost felt cool. ; )

Yesterday G got to see her RU LAX big sisters crush Monmouth. G stayed awake through the entire game (don’t worry, she dozed during 4 pm Mass later!), she cheered, she tailgated, and she came home with a giant Leprechaun balloon. : ) Those RU gals have been so kind to G…she loves them so much, and she especially loves seeing her “old” big sisters at the game. And Lily. I think because Lily is the goalie, G can always figure out which one IS Lily (G’s visual recognition is horrible, it’s an eyeballs/optic glioma thing, girls, don’t take it personally!). G loves seeing Lily, and all the girls, even if she doesn’t know who is who always right away (hint, if you have your numbers on she can usually remember which name goes with which number!).

Today Dave ran the NYC ½ Marathon with NF Endurance! The logistics of getting TO the race were insane, involving car, parking, walk, subway, walk, race, subway, etc. We got to see the NF cheering crew on the TV (as the race leaders went by). Dave did well, he survived, and it was a good day. I felt bad that we couldn’t go in, but no way were we dragging the kids out at 4:30 a.m.

Tomorrow we are taking Genna and Rosie to Great Wolf Lodge overnight. G is not amused to miss school (she has off tomorrow anyway), but Rosie DESPERATELY wanted to go like we always do…so we are. Andrew really can’t miss school & baseball, and he’s been stinky the last few times we brought him, we figured this time he can stay home with my parents. He feels a little bad (not sad to not go, just bad that we feel like he doesn’t want to…which he doesn’t), but I think it’s for the best.

Andrew leaves on April 4th for a baseball trip to Florida. We scan April 5. I asked him if he wanted to wait to know how the scan was…I totally respect that if he does…but no, he said he wants to know, that it might NOT be bad…

Oh, the optimism of youth!

I am going (with Andrew’s permission) to finally talk to his coach about this. I hate that we need to, I hate that we can’t just quietly be stable and nondescript and whatever…but I think in another week, after Andrew pitches a few more times, it might be good for me to send him our story so if things implode on April 5, Andrew isn’t alone.

Hey, I said if! Yay me! Sigh.

I need to go finish making our St. Patrick’s Day dinner (yes, a day late, yesterday was too busy!) and I need to address the massive pile of schoolwork that is whomping me. I hope to get most of our donation thank yous in the mail tomorrow…I hope…

Thank you all for sticking with us, even when I am a gloomy gloomfest. I somehow inadvertently gave up my state of zen for Lent…ack! But thank you all who do still read here…I hope I don’t make you all need insta-Prozac or anything.

Peace,
k

Thursday, March 8, 2012 7:15 PM CST

Hi, all.

First off, the Coffeehouse was a rousing success. Many thanks to everyone who performed, who baked, who helped set up, who helped clean up (especially the Allen family), who made this night happen. We are so grateful to all of you. From the folks in our parish helping out (the “(air) Guitar Guys” and Anthony Ingrassia) to our family (so many people!) to old friends and new, to everyone who mailed raffles in or donated stuff here (especially Connie & Ori and Deedy & Kelly & my parents & Lisa Brown & Meg & Mark, and our anonymous donor and everyone…we are so grateful. This night truly could not have happened without all of you.

There were some moments…of course I have thought of all the things I meant to say, all the things I forgot, etc. etc. I am trying to just rejoice in the fact that the night went really well, and we made about $4000 there…with another pile coming from other sources, including Dave’s work, DRS Technologies…we should be over $7500 for the night, which is certainly a high for us.

And it’s because of all of you.

We had great music, and great skits…the silly skits made me think so much of Sandra, so very much of Sandra…

Truly, one of the massive highlights of the weekend was getting to meet my internet NF/bt friends Deedy & Kelly (and their respective spouses, Alan & Joe…and nf hero kid Ryan!). I am generally a neurotic anxiety ridden mess around other human beings (alas), but from the very first second I just felt like I had known these wonderful friends FOREVER. Angel Nora & Ryan are both in our NF slideshow posted here…I guess really I HAVE known Kelly & Deedy Forever, but this was our first actual meeting. To come all the way from Ohio and CANADA was insanely awesome for us, we were so blessed to spend time with everyone on Friday night, and to spread the joy of M&M salad. I was too depressed on CITWGNRD to actually EAT the M&M salad, but that meant that I had it here for a fest with our new/old friends. : )

I am also super tickled that Kelly won the Louisiana basket that Connie sent! : )

Now I have 80 thank yous to write…eek…

As a side note, all $ from this night goes to the Children’s Tumor Foundation. I truly do NOT want anyone Ever to think I am asking for money for our family. This is for research. For a cure. So thank you so much for helping us with that…don’t worry, if WE personally need anything, I will ask.

Ok, so I am now wearing flaming trousers…

I will never ask, but I don’t have to today, so please don’t worry about us. Dave is blessed with really good insurance, we are super grateful.

And today was clinic day for G. In one high point, we saw our first daffodils of the season in bloom, south of Lambertville. We also realized you can sing “canal canal” to the tune of “Mahna mahna”, which was entertaining for a few minutes. We made ridiculously good time getting to CHOP today, only 2 hours 15 minutes WITH a stop for gas (4 minutes) and a quick bagel stop (out of maple walnut spread??? Oh, the humanity!!). We spent a few minutes drawing odd pictures (wait, the craft table is for the kids? Oops), G did triage and labs, and it wasn’t even 10 a.m. yet!

We saw Dr. Matt first (despite me only setting up the appointment in my head…alas…he had a spot for us) and then Dr. B. I had one moment of cardiac arrest when a new doc was in our exam room, I was so sure he was a neurosurgery guy (he was wearing scrubs). Nope, he was a dentist. Apparently teeth get a quick check when a kid is on Sorafenib.

There is no logical reason for me to think that doc was a neurosurgeon. A fair number (ok, hundreds) of folks at CHOP wear scrubs. I know. I need therapy.

Anyway, G has been so tired, but after talking to Dr. B we are going to try some new stuff to help with the sleep (medicine. Thank you God for medicine) and then see how things are. The next visit is our “is all this working?” scan day of doom, so…we are trying to help G gut things out right now. But she is so tired all the time. She was freaking out some folks by how sleepy she seemed in clinic…I think she has a bit of a cold, too, maybe? Sigh. I don’t know.

Her counts look great, which must be due to my new health plan of…wait a minute, I haven’t changed anything. We are just lucky/blessed/Sorafenibed. ; )

To add to the crazy, the meds were ready INSTANTLY (although in one seriously funny moment, the label on one says “return all used AND unused medication in this container”. Really? Heehee…but we were OUT of CHOP by 12:15.

I am trying to have my gratitude outweigh my overwhelming sense of impending doom. Now THERE’s a match you’ll never see on Ultimate Fighting whateverness.

I know I am forgetting 27 things. I am finding it so hard to focus these days…so many of our friends are in tough spots. I planned to update Sunday, and then found out that dear Angel Hadley’s mom, my friend Angela, was just diagnosed with a brain tumor. I have no words (well, printable ones) to address this turn of events. But my heart is so broken, and I just couldn’t post “yay, Coffeehouse!” stuff then.

I have to get my school stuff together, we had so little waiting time at CHOP I did zero paperwork…and I am once again dashing to keep up with one of my classes. But I did have a few moments this week where I remembered how much I love teaching. I so hope I can continue to work…but I know that the future is really uncertain.

Anyway, thank you so much for praying for the success of the Coffeehouse. Whatever prayers you said for that, please now transfer to scan day. ; ) Those were good ones. ; )

And please, please pray for the kids & grown ups we know who are so much in our hearts…Angela, Isaac (starting a trial too), Morgan, Lauren, Hailey, Emma, Gabbie, Amber, Tommy, Drew, Jaxon, and so many, many others…sigh. It is hard to stay hopeful these days. So very hard to stay hopeful.

But when I can’t stay hopeful, I watch Ok Go videos on Youtube. Try it, you will not be sorry… : )

Peace,
K

Tuesday, February 28, 2012 5:49 PM CST

Ugh, I am so behind.

Here is our official invitation to One and All…please join us THIS SATURDAY, March 3, for our Coffeehouse for a Cure!

7 pm at St. Mary’s Stony Hill in Watchung (225 Mountain Blvd, for you gps types).

We have piles of great raffles (a Vera Bradley bag, lots of restaurant certificates, Devils tickets, and a Kindle Fire, among other things), great folks singing (Christina Ryan, Mark Filoramo, Alicia Greey, “The Guitar Guys” , Rosie & Phoebe, a pile of Appert sisters, and more!), and awesome cookies…

Almost none of which have been made by me.

I am trying not to have a conniption about this, until last year I did 98% of the 1000 cookies myself. Last year about ½ the cookies were baked by wonderful friends and neighbors, this year that’s more like 98% are baked by our friends. I am very grateful, and kind of depressed at my own meh-ness.

But please join us, the event is family friendly, a little shorter this year (I am learning!), and all proceeds go to CTF. $6 a person, $15 a family, raffle tickets are NOT expensive…come on down!

We need a cure.

I kept meaning to update after Camp…and then life just…whatevered. G was so off at Camp, after I posted there she got more and more not herself, she had us so freaked out. She was falling asleep randomly, not engaging with people, REFUSING FOOD…bizarre stuff. Her feet were so blistery…and by Wednesday at school, when I stayed just to make sure she was ok…she was fine. Perky. Her feet were a lot better. She ate.

THIS IS WHY I AM NOT NATURALLY BRUNETTE.

Our doc was concerned, too, I seriously thought we’d be back at Philly last Thursday. But…nope. We will go back on March 8 as planned.

Of course again on the weekend G was tired, her head hurt 2x (cue horror film music), and today she was exhausted. I ended up staying at her dance class instead of running a Coffeehouse errand because I wasn’t sure she’d make it through the class. But she did ok.

Between G, and another issue with one of my other kids that came up right at the end of Camp, I have kind of felt on the verge of cardiac arrest for the last week. I have not been able to exercise or anything, which hasn’t helped. Breathing freely is overrated, really…

Please pray for us. I am so scared. We scan in 5 weeks—on Holy Thursday, which may make for one yikes of an Easter triduum. I just have so little hope for this. Several of our friends relapsed in the last few days, and that just sucks the hope right out of everyone.

But the girls are psyched for the Coffeehouse, and they had a good time cheering for our RU LAX big sisters at two tough games this past week…we love you guys, and we believe in you! Rosie had a sleepover and a playdate, and Genna worked on a science project with classmates. They even straightened her hair, which totally creeped Andrew out. ; ) She looked so Italian with her hair straight. I was happy to see her in a social moment with peers. Small victories…

I have to run and feed my gals, we are eating late because G finished her snack late which means I gave her chemo in the car as we pulled off of I-78…but the hour will be up in a few minutes, and she wants her pasta!

In one huzzah, two of our wonderful NF friends are coming to the Coffeehouse! The Jarego family from CANADA and the Unangst family (Angel Nora’s family) from OHIO are schlepping all the way to Jersey! No pressure, I need to make my house NOT be a biohazard AND make sure the Coffeehouse is awesome…I am so blessed to have these long time friends I have never actually met come to our event. This means so very much…

And we hope to see some of you all there, too! Seriously, it should be so good. : )

And I am really NOT going to get emotional, I am going to be like a ninja in converse when I have to talk. I have to be mighty, we have so many people making this night happen around my perpetual alas…we are so grateful, and we will keep on fighting for a cure for NF.

Peace,
Kristin

Ps happy birthdays to 3-D Levi, a leap year boy…and to Angel Timmy…always in our hearts, especially on your special leap year day…

Sunday, February 19, 2012 3:03 PM CST

hey, all...

So we ARE at Camp, and we are very blessed to be here. I deeply miss our friends who couldn't make it...alas. My kids are off and about doing activities galore...

As Genna explained to her teachers, "mom says this is medicine for our family".

And it is.

My heart is kind of heavy, realizing in kind of a new way that ours is a story that puts fear in the hearts of other bt families...I felt burdened by that back in December, but in my attempt to keep my game face on I kind of forgot or something that ours WAS the hopeful story for 5 years. And now, we are the Hope Slayers, to some degree...and we have seen folks here we met for the first time last year, folks who didn't know G had relapsed...

Even using that word...because really, that's what this is...that is a hard moment.

But Rosie is having a blast, I have hardly seen Andrew at all, and Genna is doing pretty well. She did a half hour Zumba class yesterday, to my utter shock and amazement (and if you know Genna, envision her doing Zumba. It is ok to chuckle, I certainly did watching her shake her booty). After that she was FLATTENED for the rest of the day. She slept for over an hour on a couch in the dining hall until I woke her up to go to her activity (an hour late), she was just a heap at dinner...I was freaking out a little, she was just so flat, and not super engaged, which is unlike her. And she didn't eat a lot, which really, really freaked me out. But she is a lot perkier today, so I am hoping it was just the Zumba that did her in.

We are also, now at week 6, seeing more skin issues from the Sorafenib. Her feet are really bothering her. We may ask the doc here, I think the on call doc here this week is a Dana Farber oncologist, so he would actually KNOW what Sorafenib is.

But all in all G is having fun hanging out with Lexie and Hailey and her new friend, Amber, playing games, learning to knit (well, ish), and generally just doing NORMAL KID STUFF.

Camp Sunshine is such a blessing. Again, thank you to everyone who supported Dave's plunge. This place is a haven for us.

And thank you to everyone helping us get ready for the March 3 Coffeehouse for a Cure...so many people are baking (there is no way I could manage a 1000 cookies this year...heck, I couldn't last year, either, so thank you to all those folks), our singers are getting ready, I am trying to think about it. I know it will be awesome, we have some great raffles...

Being here is such a healing...it's also a bit of a denialbuster. There was just a special session for families (parents) of kids in complicated or relapse sorts of moments. I didn't think we qualified for that...really. I know. I am a moron (thank you, Alice, for clarifying. ; ) ). I am so scared for my G, and so blessed to be here, all at the same time...

Hopefully this computer doesn't eat my update, we shall see...

anyway, I will update for real after we return...

peace,
K

and a big shout out to our RU LAX big sisters, who have been more than there for G in the last 2 months...I don't know if we can get to the game on Wednesday, but we are thinking of you & rooting for you BIG TIME!!!)

Thursday, February 9, 2012 5:43 PM CST

Hi, all, Thursday update here…

But first: THE GIANTS WIN THE SUPER
BOWL!!!!!!!!!!!!!!!!!!!!!!!!!

Yes, there was mayhem, merriment, and cake at the Casa Camiolo. Not necessarily in that order. 

We were so shocked that the Giants kept advancing in the playoffs, to have them get to the big game and then WIN???? E-flipping-gads! People were literally running around our neighborhood cheering.

This sort of thing is always a pick me up. Genna was so thrilled, she and Rosie got to wear their Giants shirts to school over their uniforms. Andrew was one of the people running in the street. It was such a great game, intense to the very last second.

Just needed to get the Important Info Out first. ; )

Second important whatnot: The Polar Plunge was AWESOME!!! What a fantastic event! Thanks to all of you, Dave raised $560 for Camp Sunshine! (and we have to buy another t-shirt, somehow Dave’s got eaten by our washer, and if you jump in the Atlantic in February you NEED the “I DID IT” t-shirt! : ) ) .I t was so exciting, and great to say hi to some friends, and just a blast and a half. I have zero desire to EVER do this event, but I certainly would record Dave doing it again! : ) Go, Camp Sunshine!

We are, as I’ve said before, so grateful for Camp…we are going next week, and I am almost desperate to just have the mom medicine that Camp is…it’s hard to explain why or how a family brain tumor camp can be so awesome and beautiful and uplifting…but it is. And I am kind of in perpetual emotional road kill mode, so I am really looking forward to just Being at Camp.

THIRD (and really first, I guess)… Genna officially finished her first cycle of Sorafenib this week. Woo! I am starting to officially panic about it working…it is just so easy, compared to other chemo, so ridiculously easy. That thought, and the accompanying thought of “what if it isn’t working?” have started hitting me in my chest just as I get into bed at night…one of those moments where NF equals No Fun. But honestly, G is doing SO WELL….I am grateful, and scared at the same time.

Her counts were solid, platelets held steady…her labs were an ugly stick today, ye olde mining expedition (needle in and dig)…oh, heebie jeebie. Genna never moved. She flinched slightly, and sucked in her breath, but did not move. Last week she actually did her labs without me because I was talking to a doc…a huge first for her. This week I made sure to be with her (hey, I never said I was ready for that huge first). She was a rock star, and everything looked great.

So we go up another 50 mg to G’s maximum dose. Her feet look pretty good, still a little funky, and her face is kind of splotchy, but Dr. B thought her skin looked better this week than last week, go figure!

G did talk to Dr. Matt some, I think we have a plan in place to help G feel better about what life is. I am glad of that.

Cinderella was there again today, but today she was Dorothy playing Wizard of Oz. She explained her game as she dashed by, but she had a sibling in tow, so she did not grab Genna this time. G was happy to see her friend Becca from Camp again.

She had plenty of time, because even though we left home at 6:45 a.m. (and yes, I got me another bagel with maple walnut spread. Best. Food. Ever.), and got to CHOP by 9:20, and were DONE with Dr. B by 10:20 (another Egads!), and Dr. Matt by 11:30….apparently the investigational pharmacy has to actually mount a hunting expedition, gather their slingshots and nerf guns and roam about CHOP in search of the Fatted Sorafenib…and once they catch it they must make it into pill shapes, and shove those pills into bottles, and then adorn the bottles with many, many stickers (don’t forget the Grapefruit warning!)…that was another 2 hour wait. Ack!

And yet we still made it back home just in time for art…and Rosie to get off the bus…and me to run and get Andrew…and then dash to the store to get G’s peaceful medicine which we were out of…and THEN go back to get G from art so we could do chemo…

I am about 4 seconds from becoming horizontal.

So…we start round II. G is super happy, she got Yeti slippers from Uncle John (ok, technically grizzly slippers, but to G they are Yeti feet…imagine her trying to explain this to her doc) and a new DS game, and her spirits are good. She is so tired, so very tired, but otherwise she really is doing astoundingly well. She has continued to wear slipper shoes to school, we got her a pair that is black so they are less obviously slippers. So far, so good.

And Rosie LOVED gymnastics. “SO FUN!” she whispered at me as she came out of class last Friday. This makes me so happy for her. Rosie needs some extra love right now, I can see how the last 9 weeks have been hard on her. Déjà vu all over again…

Again, thank you all for praying for us, pulling for us, just helping us navigate this. I am sorry to all who actually see me, I am a wicked crabby crone these days, that’s why I am hiding more than usual. I am a menace. I have to find my nice, because our Coffeehouse is only a few weeks away( March 3!) , and I am WOEFULLY behind on planning. We have some magnificent raffles, and more coming in…some great performances at least tentatively lined up (oh, yikes), and cookies in the works. It should be great.

I am just so tired, and I am feeling the crash and burn of too much onco time lurking in my bones. At least now we have 4 weeks before we go back, thank God. This drive, and losing the day at work, and the stress of well, you know, have been killing me. Leaving work for someone else, and then having to correct all of that work is just burying me. But now we have a break from the trip at least. Chemo continues.

I keep having this odd moment, I often go back to sleep for 40 minutes after chemo time in the a.m….but when I wake up, usually just after the kids leave, I have this panic that we’ve forgotten G’s meds…I think that little nap has some amnesiac properties, it’s quite odd.

Anyway, thank you all again. My girls are fighting (oh, normalcy!), I better go be mom.

Peace,
K
And ps I know my blog stopped…the next entry is in my laptop…and the hard drive imploded. Aaaaaagh…so, yeah. That’s the story.

Thursday, February 2, 2012 3:58 PM CST

Hi, all.
I have a massive headache, but today was a good day, ultimately.

G had a great time at her retreat last weekend. She is so earnest, and loves being a Part of Things. I did realize at the mom part on Friday night that I am not fit to be near man nor beast (or women, I guess). Sigh. I am officially a curmudgeon. But G had a lovely time.

Rosie and I made a bundt cake while G was out on Saturday, so R was happy, too.

Andrew had his first college visit on Sunday, and that went well. Egads. How can we be at this point? (I know it’s a little early, but with baseball he has to start early).

G’s feet have been bothering her the last few days. I have been trying NOT to obsess about this (Fail!)even though I meticulously read the sorafenib info multiple times…and found more info online…and then some more. I told someone at CHOP today that THAT is how I deal with anxiety. I research. Anyway, skin issues are THE thing with Sorafenib, among the list of 57 possible things, I guess the hand/foot skin reaction is the most often seen side effect.

I had G wear slippers to school this week to rule out her shoes as the culprit. She had one massive blister on one foot, and weird other stuff on both feet. Today Dr. B said yup, Sorafenib. Still, because it is tolerable right now, we did increase G’s dose one more notch. Her counts are still solid (platelets dropped rather precipitously, but still in the realm of normal), and aside from fatigue & the feet thing & some random red facedness, G really is doing well. If things still look ok next week she will go up one more time in dose to her maximum allowable whatnot.

So as of today, she will take 5 pills a.m. & p.m.

Our clinic visit was good today, we got the new pills without event (phew!), met another NF family that G remembered from RMCamp, harassed the Eagles fan nurse (G had to. She desperately wanted to show him her Giants shirt 2x, and Dr. B is an enabler. ; ) Even I trash talked the guy after he gave G a hard time, I can’t even believe I did that, I NEVER trash talk. But hey, tell G she should wear the shirt next week after the Giants lose, and Momma will remind you where the Eagles will be on Sunday. ON THEIR COUCHES AT HOME. Even Dr. B told me to run… ; ) ).

And, thanks to Dr. B’s intervention, I think we worked out our issues with getting G the support she needs. I am not sure HOW it is all going to work, but we are going to kind of start again, slowly build some friendship, and kind of establish things…and then likely start in earnest AFTER G’s scan the first week of April. I told our doc (after venting miserably at her last Friday) that I would talk to the other doc this week…but I guess she knew I was frustrated (I am so subtle with words, you know), and she talked to him first just about G’s situation, kind of reminded him of Zen and the Hypothalamus. So when we met today to hash things out, we were able to get on the same page—he clarified what he MEANT to say, and I told him what I heard…and more about G, what she needs, and what my (low) expectations are… and he reassured me that he could tell we are committed to this (an issue in conversation #1).

Phew! I feel a lot better (even if I did break the cardinal rule of “don’t cry at CHOP”; it is just SO FRUSTRATING, the list of practitioners in NJ who do what Dr. H thought should be done…6 people. In the ENTIRE STATE. And they likely aren’t on insurance…which means like nearly $800 a month should we pursue THAT route…ugh ugh ugh). Once I pulled myself together (face palm! And no, water resistant on the mascara doesn’t mean you can cry through it), we were able to come up with at least the beginning of a plan so G can get what she needs at CHOP.

I spoke at length with G’s doc, too, I am so grateful for her. Today was just one of those days I really felt like we were getting the best care possible, and THAT is a good feeling, in context. I just, I mean we were coming to CHOP when some of these folks were still in medical school…sigh. I said that I used to be young & nice, now I am the crabby crone of clinic…

I am also not sure that the support staff is all that into MY methods of coping, which mostly are coffee & chocolate. They asked, and I am so truthful. And I took a “stress plus zinc” vitamin yesterday, one I had leftover from last year. I fully expect to achieve a state of Zen by tomorrow. ; )

We really enjoyed chatting with that other NF family from camp...apparently the little guy kept gonking G in the bumper cars…which she told his mom about, with great gusto. Eek. But it is great to meet another NF family, they’ve been through a lot of the same stuff as G…

It was a good day. I am SO TIRED, but it was a good day.

Thank you for your prayers and support through all of this. G is doing well, and we just have to pray this dang stuff is working. I am starting to have mid-night panic about that.

This weekend Dave & Genna will follow up on some Coffeehouse raffles (March 3! Come on down!)…we have some great stuff already…and Dave is going to jump into the Atlantic Ocean on Saturday to raise some $ for Camp Sunshine. We couldn’t do major fundraising because of all the other times we beg everyone for money, but if anyone wants to throw $5 at a crazy guy jumping into the ocean in February, www.freezinforareason.com is the link, Long Branch is the site, and Dave’s name is there. We are going to make keychains for all our donors, icy blue & white keychains. ; )

I have to go pay attention to Rosie, and then get G from art (we got home 15 minutes before art class! Phew!)…tomorrow Rose starts gymnastics, something she has wanted to do for a long time…and I have some schoolwork to do, but I FINALLY JUST THIS WEEK cleared out our “relapse/restart” backlog of paperwork. Only because grades were due…alas…

Anyway, thank you all…
Peace,
K

Ps I have been writing rather a lot more on my other blog…I had a giant paroxysm of words after Rosie’s scan…my last entry from that is trapped in my broken laptop, but it’s kind of…well, it was in my heart. And please, if you read it, I am not talking about any specific moment (ok, one or two, but none of you who read here are that moment, so don’t freak out). Peace, k

Thursday, January 26, 2012 6:41 PM CST

Hi, all…
This has been One Extremely Long Week. And I apologize for the weird formatting thing, I have no clue why that sometimes happens. I use the same program every time…?

The entire weekend was History Day project. We had several issues with this project. G has extreme issues with inferential reasoning, so EVERY point takes a long time to get to…and she HAS to do it herself. I can guide, and push, and type, but she has to read the articles, choose the quotes, etc. We spent hours and hours and hours this weekend working together. I frequently lost my patience, she wailed “I HATE HISTORY”, we’d pull things back together… I am too much of a research perfectionist, so I did push her to keep looking for info, to tell AS MUCH of the story as she could…and ultimately she did a great job.

She spent hours on Monday (the kids had off) gluing her quotes on paper, then arranging the story on the board. Tuesday at 6 a.m. we were finishing her bibliography (thank God for easy-bib).

Last night was the fair…and GENNA WON FIRST PLACE FOR HER CATEGORY!!! I almost cried when I heard the judges tell the event organizer the top 3 for the middle school…especially since I know the judges didn’t really know G’s story right now…when they announced G’s name, she put her hands on her cheeks and just beamed…

I am so proud of her. She worked SO FLIPPING HARD. Everything is so hard for her to do, and she did it. I am so proud.

As I tucked her into bed last night, she said, “I am just so overwhelmed, I can’t believe I won.”

I so love that kid.

And today…we rolled out (literally) at 6:49 a.m. to dash to CHOP. In ridiculous fashion we saw our doc IMMEDIATELY. G is doing great! Her odd issues the last week or so seem to be mostly regular kid stuff…the only real side effect so far is that her cheeks get really flushed at varying points during the day and her eyes are a little red. Um, WOW. That I think merits a THANK YOU ALL FOR PRAYING FOR US. G’s counts totally rebounded ???? So we increased her dose 50 mg (now 4 pills at a time), and if she’s doing ok next week we’ll go up another 50. We’ve already determined that we’ll need more pills next week, so I really, really really hope that the logistics of that don’t get all flummoxed.

G gave me a tour of the fancy new day hospital (new like 4 years ago, but after our time of in-hospital chemo)…funded by the Alex’s Lemonade Stand Foundation…the little Cinderella apparently gave G the tour last week, and things were so quiet this morning Dr. B told G she could show me around! She showed the nurses her medal, noticed Dr. B’s festively mismatched socks, and generally had a jolly time of it.

We were done by 10 a.m.! I was sooooooo wishing we hadn’t scheduled an appointment with the psychologist at 12:30 (the only time he had, and I really want to make this happen). Alas. But in one happy note, G’s friend Becca from camp was in clinic today! The two of them hugging and rejoicing was one of the most joyous things ever. Just pure joy, the two of them.

Finally we saw Dr. H. Not sure how things are going to work out going forward, for G to really reap the benefits of this kind of support we have to see someone every week or every other week. ..but in 2 weeks we switch to monthly CHOP visits. …so…

Sigh. Thwarted.

After a very frustrating & demoralizing meeting, G and I raced out of the hospital (ok, I raced to get coffee so I wouldn’t sleep on the ride home, THEN we raced out) . . .I wanted to beat the traffic. We were just on 76 when I spotted fire engines behind us. Uh oh. I zipped onto 676…and way behind me I could see those lights…onto 95…Oh, the lights!

THEN I saw the big sign that said “ACCIDENT AFTER #27 PREPARE FOR DELAYS”. Cue understatement of century. Sigh. I ate all my STAY AWAKE food before we even got through the traffic. Thank God for leftover candy canes.

So despite my best efforts, we didn’t get home until 4…so G was late for her first art class of the year, and I was sooooo tired. And demoralized. And ugh.

But really, it was a good day until like 12:30. So I am trying to hold onto that.

I picked G up at 5:30 and she got her chemo…now we find the Chemo Song of the Day on G’s favorite radio station. Today’s song was “you lift me up when I am weak!” …which we also heard on Monday. Hmm…
This weekend she has a little retreat thing that she is really looking forward to (and for which I have STILL not done the mom piece I’m supposed to); Andrew has a baseball showcase (since last weekend’s showcase #1 he heard from 5 schools, just like hello and we saw you and noticed you are a lefty who pitches…HOLY COW…how is he not 3 anymore? sigh)…

We are getting into a routine of things here. G is pretty peaceful now, she feels pretty good (really tired, but that’s ok) . . . and we just found out we were accepted to Camp Sunshine for President’s Day weekend! We are so grateful for what Camp has been for our family in the 1 year since we went there for the first time. I kind of desperately need some Camp right about now, and we are grateful.

We are also prepping for Dave to jump in the ocean on February 4. Yes, seriously! He is doing a Polar Plunge for Camp Sunshine. This is his page… http://www.freezinforareason.com/members/member.php?mem_id=1790 if anyone can spare $5, we would love to actually raise a few bucks for Camp, which has been such a place of respite and joy for our family. We are making keychains for donations…ok, so far we have one keychain, but now that History Fair is done we will actually make a bunch. : )

AND…preparations for Coffeehouse for a Cure 2012 are getting underway. Already we have Devils tickets and some other special items to raffle. March 3, 2012 … btobs. (be there or be square!) : ) Genna and Uncle Mark are preparing a Very Special Dramatic Presentation . Sandra would have LOVED it. It’s totally her style.

Sigh.

We just have to find a cure. We just have to.
Ok, I am too overtired to write one more pitiful incoherent thing. But thank you again for praying for us. We so appreciate you all.

Peace,
k

Thursday, January 19, 2012 6:30 PM CST

Hey, all¡K

Rosie is STABLE!
Yay. Times a million.
Everything is stable. Her plexiform is ¡§less prominent¡¨, whatever that means. (We can see what it means, it¡¦s just very hard to explain. But it is less prominent). Normal NF stuff, but tumors are STABLE!

We had to leave horribly early (5:30) and the bagel place we promised to bring the kids was NOT OPEN when we got there! Ack, Bagel Drama! We had to improvise (ie stop at Dunkin Donuts¡Keven though we had already zipped through a DD to get coffee¡Kack!). Ultimately, no Camiolo starved today.

Rosie was a rock star, she managed to get through the entire scan awake. She had a hard time with the IV (my poor baby. ƒ¼ ), but she gutted it out and then did her scan like a pro. She has to have a special plastic Armor of God thing put over her neck & chin, and then slide her head into this slot, with headphones, and then the whole bed slides into the MRI tube. If you are claustrophobic, it must be a nightmare (says a momma who IS vaguely claustrophobic). Rosie never flinched once she went in. She did get to listen to music, although somehow her iPod got stuck on Adele¡Kwhich is ok, really, but I did ask them to hit shuffle again once they came in to inject the contrast.

We had several hours to kill¡Kand with a non-sedated scan, Rosie literally bopped out of the unit and was good to go! The kids had some computer game time while Dave & I caught up on some work, and then we actually BOUGHT lunch today, which we never do at CHOP. We took Rosie to see the Rube Goldberg-esque sculpture thing in the main hospital atrium¡Ksadly, we realized our girls had wandered off to look at some other kid-friendly thing while Dave & I were playing with the gears and making the little golf-ball things bop different ways¡K

Once up in clinic Rosie found the Wii, and she and Dave had a massive Wii tournament. Genna went to find the Child Life Specialist to get caught up on her Beads of Courage. The kids get a different color bead for each procedure, test, poke, stay, scan, etc. Since G started the program in December, she is pretty stoked to have already earned some of the hard to get beads, like PICU, xray, CT scan, MRI (2!)¡Kergh. Before G could even do her beads, the funniest, cutest thing happened. A tiny Cinderella, beautiful bald head with tiara, full gown on, came and grabbed Genna¡¦s hand. ¡§You come dance with me!¡¨ she said, and G , giggling, followed her out into the other waiting area¡Kwhere apparently Cinderell told everyone that G was the prince and they were getting married. That little girl was so beautiful, and G was so happy following her around¡K

G had to get poked (no fun!), but did well¡Kand in a lovely moment during our long wait, our doc saw me in the hall and gave me the super fast ¡§everything looks good!¡¨¡KPHEW! That held me over quite nicely until we got back into the exam room later. G went off then and took a nap in the waiting room.

G¡¦s bloodwork is good. Her platelets, ANC, & white count did take about a 20% hit, but that¡¦s not wildly concerning at this point. And heck, these numbers are so much higher than places we have been, we are not complaining.

But we will pass the Purell.

ANYWAY, we are so glad G is tolerating the chemo well thus far. I also apparently don¡¦t have to worry BECAUSE she is tolerating it well. Thing about it, it¡¦s not an insane thought. Well, it PRODUCES insanity, but there is a logic to it. Our doc said I don¡¦t have to worry that it isn¡¦t working.

Heck, we¡¦ve had horrible chemo yikes with chemo that was Epic Fail. So I am grateful out the wazoo.

We made it home by 6:30, just in time for G to be able to eat (yup, chemo in the car!) , and I am now happily eating a Costco burrito. G is stressing out over homework, and Rosie is looking at a Ranger Rick. Dave just went out for a run . Yes, it is pitch black. Yes, it is 34 degrees. That¡¦s how he NF Endures, let¡¦s put it that way. I eat Costco burritos. ; )

Thank you all for all your prayers. Please pray for G in this second full week of chemo¡Knext week is going to be a VERY long hospital day, G has to have fasting bloodwork then blood drawn every 2 hours all day (only one poke, but multiple draws). This does not sound like super fun times¡K

But we are so glad our Rosie is safe for now, and G is so mighty. Thank you for praying for us.

Peace,
k

Monday, January 16, 2012 7:45 PM CST

Hey, all…
I know, how could I have gone silent NOW?

Well, as I’ve said a lot of times in life, mostly about other topics I do NOT discuss on line, (ahem), Fear Is a Powerful Motivator.

G is nearly a week into her chemo. We are trying to get into a routine, the morning isn’t super bad (well, for G, she’s awake then anyway…for me & Dave…well, ergh). I have been waking up before my alarm most days, afraid I will miss the dose or something. Yikes. The evening dose is harder because of the food restrictions. G cannot eat for 2 hours BEFORE a dose & 1 hour AFTER a dose. So she scarfs a snack instantly once home from school, and then sips apple juice for the next 2 hours…and then has to wait another hour to eat dinner.

G has hypothalamic food issues, and this makes her INSANE. Thank you to everyone who texts her in the 5:30-6:30 hour. That REALLY helps.

But so far, G is a little tired—but is that NORMAL G tired? Anxiety not sleeping G tired? Or chemo tired? A couple of days her cheeks have been quite flushed late in the day…and today her one hand was pretty sore (this is the most disturbing thing yet, based on the literature we were given)…but again, I don’t want to read into anything too much.

And…I am wildly afraid that as soon as I say “All is happy, joyful, and free!” that all sorts of stinky whatnot will hit the proverbial fan. I have THAT t-shirt from the Store Of Long Experience in Many Styles, most notably the “Oh, don’t worry, we’ve NEVER had to transfuse before!” t-shirt that started Transfusionfest 2006.

We know it’s only beginning. So far G is handling things pretty well. Her immediate relief the first day, just getting started finally, was HUGE. She was so relieved at school and everywhere. All was great until one employee at school answered G’s “I feel ok so far!” with “well, it will take a few days for side effects to show up.”

No, I have not yet crossed paths with that person at school. Yes, I am adding another chapter to Morons and Their Friends.

Sigh.

BUT MOSTLY things have been chugging along. Thank you ALL for praying so much for Genna, your words and prayers and cards and everything are truly carrying us.

You KNOW you are in some kind of season when after a crazy busy day and a late dinner child #3 says as you place a casserole on the table, “mom, who made this for us?”…um, Mommy made this one, sweetie. But it says something about the kindness of our neighbors and friends of our extended families who have been sending over meals for our freezer so we have something to eat on hospital days (apparently not everyone in my family can live on Cadbury balls alone)…and we are grateful.

My most recent blog is about this. I think the link is here? Ok, so I NEVER update the blog, but I did write about this.

And G is slogging through her History Day project that some Brainiac thought would be a great idea (ok, that one was all me, alas)…she doesn’t draw inferences…her brain just kind of doesn’t DO that, so we talk through each point, each fact, what it MEANS, until she can figure it out. She is working so hard, we have spent hours so far…she just needs someone there sort of keeping the ball rolling…it will be awesome when she is done, she really has worked insanely hard. And we’ve learned a LOT about Braille.

Anyway, please keep praying for G, she is so mighty but this is hard and scary for her still…and on Thursday Rosie has HER MRI, in case I forgot we have TWO CHILDREN WITH BRAIN TUMORS HERE. Sigh. G will do her first “on chemo” check, and Rosie will scan. Good times.

Please keep praying for us…

Peace,
k

Wednesday, January 11, 2012 8:03 AM CST

Hey, all.

Tumor Battle 2012 has commenced

At 6 a.m. G swallowed her 3 pills and started smiting her tumors. She was pretty upbeat about it once she realized she could swallow all 3 at once. Then she & Dave went out to get First Day of Chemo Bagels.

This led to a cheerful bopping about singing of “first day of chemo bagel…la la la la la …wooo!”

Sigh.

Please pray that the side effects are too yikes. I am going to stay at school after my classes until the end of the day just in case she needs me. This is my plan for the near future. I’m also hoping I can then keep most of my schoolwork to school, and leave home to home.

At least she was really perky when she left today.

There is some relief in starting, I guess.

I didn’t sleep at all, I knew I had to be up by 6, so…I kept waking up and waking up and waking up all night. Then one of the pills dropped on the floor when I was opening the bottle, and the dang thing rolled…the sight of me & Dave crawling around the kitchen floor searching for the tiny investigational drug that was so hard to get and likely is not supposed to be dropped onto a kitchen floor and lost ON THE FIRST DAY! Ack. Dave eventually found it…

Dose 2 will be around 5:30 today…G can’t eat for 2 hours
before or 1 hour after, so that might be tricky, but …Game Face is Now On.

Here we go…

Peace,
k

Monday, January 9, 2012 6:48 PM CST

Hi, all…the weekend was challenging without Dave home (my brain was SO FULL), but G had a lovely time at a wedding for Mrs. H’s daughter (the resource lady at school…G was SO TICKLED to get to go), Andrew played basketball, Rosie & I had movie time, I only had one major mental lapse (sorry, Joanna…sigh), Dave got to & from his family thing without incident and the Giants won. Good times.

And as of 5:50 this evening, we have sorafenib in the house.

I should be so happy, right? We have the tools for battle! We can fight this blasted blob o’ yikes…and yet…I am just so sad tonight. Just so very, very sad.

I left work right after class today (very much hoping my lunch duty DID get covered…if not, sorry, Erin!), got to Philly by 2…and then, to wait. Apparently I am not as good at waiting when Genna is not with me. The drug was in West Bumble (aka the Investigational Pharmacy, which the nurse—an old friend—told me was in Guam). So the NP had to go to West Bumble while I went to the appropriate floor—5, not 4 on Mondays. The NP finally found her way there & back (no joke, it’s apparently really easy to get lost trying to find it) and then got cornered by an insurance company call…so she texted Dr. B & Nurse Cindy to say the drug was at least back in oncology…back on 4, not 5 where I had been sent. After a bit more this and that, I finally had the tiny little tube in my hands. Then the 2 hours to get to Andrew’s bball place, and the half hour home after that…

Sigh.

And thus, as I said to fb friends, denial returns to being just a river in Egypt.

Investigational Drug…Genna Camiolo…FDA blah blah blah…chemotherapeutic drug! Hazardous!...do not eat grapefruit…blah blah blah…there, on that little label, was the death of denial.

I read all of that just AFTER I dumped the pills in my hand for G to see. They are gold colored, and small, and round, and she will take 3 each morning and each evening, on an empty stomach. Those warnings about handling the drug…the drug I am asking my child to consume… no words. I kept the dang pills in my hand. Whatever.

This has been a very difficult day for me emotionally, all the whatevers that I have not actually dealt with sort of came to a head around this CHOP trip. It was so weird to go alone…in teacher clothing (I do not normally wear a pencil skirt/sweater/3 inch heels combo to CHOP, more like yoga pants & sweatshirt uniform!)…and to wait, alone…it took an hour and a half all together, and I almost lost it when I finally got to check out and had to set up 4 more clinic appointments in the next month…and there was no time for G but they had to squish her in…she is once again the kid they HAVE to squish in.

Surreal and heartbreaking. Just…heartbreaking.

They also gave me another paper, a “diary” to log info about dosing, etc. I expected sparkles and a lock, we may let G bling out a folder for the paper, and I may have to write Dear Diary on a cover sheet. ; ) I won’t mess with the data sheet, but I could gently accessorize it. It just amuses me that they call it a “diary”. I feel a Brady Bunch episode waiting to happen, somehow.

So we prepare for battle. Wednesday morning we will begin. Please, please just pray that the skin side effects are not too bad for G…this will make her berserk, she already has some skin issues, and that seems to be what happens with Sorafenib. I still have to finish the presentation for her class, and write a follow up to the 8th grade parents about neutropenia and sending sick kids to school. Those letters remind me that I have some unresolved anger to deal with. Good thing I am so perky naturally. Ahem.

In one jolly note, G asked Mrs. Kinney to be her Confirmation sponsor today. G was so pleased that Mrs. K was so pleased…this really made G happy, thank you, Patti . She loves you so much.

G has so much love…even in her anxiety she has so much love.

Please pray for my G as she starts…and for all of us that we can figure out the logistics of dosing (that afternoon dose is tricky for G because of the empty stomach requirement, especially with her food issues), and that the side effects are not bad, and most importantly, MOST IMPORTANTLY, that this drug seriously kick some tumor backside, frontside, topside, bottomside, etc. Every side. Kicked. Hard.

Thank you all. I am truly going to try and get my Game Face On for real now, I just need to finally have that night of yikes that I STILL have not really let myself have.
Peace,
k

Friday, January 6, 2012 7:59 AM CST

LUNCHTIME UPDATE: just heard from CHOP, they have the drug. I just want to cry and cry, but instead...time to figure out details. Our doc figures we'll go down Monday, not sure I can swing going today...and the day we start is tricky, timing wise, because of when we have to then return to clinic (it's a quality of life issue for Genna...has to be M/T/Th on CHOP's end, and really only Th for G)...sigh.

Girls just getting home from school, it's a half day...better run...please pray for us... :(

**********************************

Hi, all.

And so we wait.

I am epically bad at waiting. Except AT the hospital, I go into this weird like hibernation mode and can go peacefully-ish for hours just sitting. I’m like a Buddha of the Playroom, sans a few pounds. And with more clothing.

This waiting, I am not so good at.

Apparently the drug is at the manufacturer. Dave thinks this means California, based on some research he did. Ironically the world hq of the manufacturer is about 8 minutes from Dave’s office, 25 minutes or so from our house. This is not helping our frustration. Our team at CHOP is TRYING to get the dang thing expedited, but there has been some sort of hold up on the other end…

I don’t want to fuss too much, I don’t dare jeopardize G GETTING this stuff. But it is so frustrating. The tumor didn't stop growing just because we had to wait...I can't just be like "oh, dear tumor, please just hold tight until we can find the appropriate weapon with which to smite you"...if only life was like Monty Python...

As I’ve said to some folks (and maybe here, it’s so hard to focus these days), it’s like we psyched ourselves up to dive into an icy cold pool that we really don’t want to jump into, but we will…and then at the edge of the diving board we hear a whistle…Adult Swim! And we’re stuck, dangling, hanging over that water, just waiting…

Genna is struggling with the wait, she is afraid, and she was ready to go, and this is very hard. She was quite happy to return to school, but even that is some stress for her. She has a huge History project due in 3 weeks (totally MY fault, I’m the one who lobbied hard for a History Fair…for which I am responsible, you can imagine where MY head is these days too…ack!)…and this sort of project is hard for her anyway, assembling disparate pieces of info into a coherent whole. She chose Louis Braille for her topic, which is awesome…except that we are having trouble finding any kind of primary sources. He lived pre-photography and in France, and we are struggling to find info. I am really, REALLY trying to have G do this, but I know I am going to have to walk her through the search this weekend. She just needs a lot of one on one assistance even when she works on the computer. She tends to accidentally close pages, or lose the cursor on the screen (I can enlarge print on the screen, I have to find out how to change the cursor so she can see it).

And so we slog on.

We are kind of desperately trying to get our ducks in a row with other life stuff, Andrew is officially starting Driver’s Ed next week (so stay off the sidewalks if you live in Jersey), baseball winter training just started up, and Andrew is also finally working with a pitching coach. He (A) has a couple of showcase events later in the month…we have to start this now, and it’s such uncharted territory for us, but we know for colleges he has to start doing these things NOW (a lot of other kids already started, but we are hoping the lefty thing will sort of compensate for our slightly late start…evidence would suggest that this is an accurate hope). Baseball is largely about potential at this level, so we are hopeful, and it matters a lot to Andrew. And despite my own athletic insecurities (I once wore a bag over my head to gym class. Ahem), it seems like Andrew is actually crazy good, from what people tell us. Who’d a thunk it?

I should say too, Andrew has really been doing well…in school, and helping with Rosie. I know how hard this is for him, too…he was Rosie’s age when this first started, and … I am so grateful that he is trying so hard right now.

I am still trying to figure out Rosie’s new dance schedule…she NEEDS to keep dancing, she desperately wants to, the studio is now so far, traffic is horrible, but she needs to dance, and we love her teacher, so we will make it work. But I don’t have it all sorted out yet. Rosie has a history project too, but we at least got that started. I just have to make an Elizabeth Blackwell costume in a month or so. ; )

Rosie needs some extra love these days. She is not going to sleep at night, then she can’t wake up in the morning…and she’s just…it’s been tough. She also has an MRI in less than 2 weeks to make sure HER tumors are stable. Yippee. Ky. Yiy. Yay. Sigh.

Dave and I are slogging along. He has to go out of town this weekend…we knew about this for a while (originally we were ALL going to have to go, at great cost and time…but now just Dave is going). I am trying not to freak out. If G had actually started chemo it might have been different (Dave bought trip insurance), but since we are in limbo Dave will fly out tonight. I hate when he is on an airplane, and I can feel my own massive tsunami of anxiety that has been sort of circling my mental island preparing to crash in on me…sigh. The weekend is the only time we really have to regroup, and since he won’t be here, I am flying solo on all the logistical challenges…and the mental whatever.

Yes, I am being a big whiny crybaby. But I wish he didn’t have to go. And I am trying to not be resentful about it. Failing, but trying. I know he HAS to go.

I better go play Safety Dance and go medieval on my kitchen, that seems to be helping…except that I have only just started exercising again. Ow. ; ) We tried crazy dancing therapy the other night. G hated it, D ignored me (after 17 years he is immune to my version of weird!), and Rosie eventually joined in. I dance a little bit like Ferb (of Phineas & Ferb), but it was mentally helpful. And a good workout. Who knew?

So I have to call CHOP again today to see if they have any word on when I can try to drive back down there to get the meds…and to set up a neuro-psych check for G (we had already planned to do this before high school) and to discuss some concerns Genna had after her talk with another doc the other day. Apparently she was upset by something and it took me 3 days to find out WHAT. Ugh. I need to get my game face on…again.

At least the last 2 days I’ve only had one class at school, not two (a scheduling thing), I am finding it so very hard to focus, but I am really committed to having History be awesome, and my scatteredness is frustrating. Today is a luncheon for the teachers at school, but I’m not sure I am going. I am still kind of hiding from humanity.

Thank you to everyone who has brought us a meal for the freezer; Dave was so excited to have Mrs. Temple’s chicken divan after our long hospital day on Tuesday (seriously, he was looking forward to it all day, his words…Mrs. T, your reputation goes ahead of you! : ) the meal was Delicious!) . So thank you, everyone…I am saving those meals for the days we really need them…and thank you for the encouragement, and the support, and the everything. I know I have not sent one thank you, and I am getting all addled about who I need to thank…I am sorry. Please know that we are so grateful.

As a side exhibit in this parade of whatever, Dave just found my ticket to Follies…the show I saw with my sisters back in September? The show I had to contact because I never received a ticket in August (after G’s first bad scan)? Yeah. THAT is what happens when a scan is bad. It’s scary. I forget things COMPLETELY. I really thought I had never received the ticket. Not that I had misplaced it…that it had not come. Ack! This freaks me out, and I only say it here to illustrate WHY I forget to send official thank yous or to grade papers or…I do not know what synapse is misfiring there, but YIKES!

So please, if I forget something huge related to anyone who reads here, please forgive me. Stress apparently makes me a moron. Ergh. And a dancing moron, which is even scarier.

Ok, I should go grade the last few papers I have not graded, and set up a rubric for the History Fair grading (the big project is taking the place of a midterm exam, which was also my idea, and there is a lot of logic to it…until we hit this medical snag…now I’m scrambling, but it makes sense to assess kids based on the process of history instead of the rote memorization of history…that’s the theory in a nutshell, and the end product of some of my research over the last year). I need to keep working, it really does help my brain to not be sitting here all day worrying…

Anyway, I just wanted everyone to know that I haven’t updated because I am limbo, and tired, and crabby, and trying not to let myself be scared. Tired and crabby are much easier to manage than terrified.

Please keep praying for my G…and thank you, thank you especially to all our friends in the NF/bt community….starting this again, NOT alone, but with all of you, is huge for us. We are so grateful and appreciative of each one of you…

Peace,
k

Tuesday, January 3, 2012 4:20 PM CST

So, brief update.

We are cleared for G to start the trial. Saturday's scan WAS scary, but it's essentially the same scary as before. It is very complicated to explain, but the end result is that we don't need other interventions before starting the trial. Good news.

G's labs, tests, and x-ray (for trial) all good, we are cleared to go. G was WRECKED about having to get labs, but she got through it. We signed her up for Beads of Courage, Megan from Child Life kept talking to her about earning beads during the Great Poke, so G got through. Good news.

We got G set up with the psych folks to hopefully get her the support she needs as we gear up again. Extremely good news.

And then: They don't HAVE the meds today. We can't start on Thursday unless some great miracle occurs, and we tend NOT to err on that side of things. (although I am intensely grateful that Saturday's yikes was averted). They don't know when the meds will get there, since it's a trial they are Special Investigational Meds at the Top Secret Basement Pharmacy. Or something like that. But even the TSBP doesn't have them, they have to get shipped from NYC. But because it's a trial, they cannot get shipped to us. They need to go to a doctor in Philly who will place said pills into my maternal hand.

Ie we have to go back to Philly at some undetermined time.

Insanity.

This is not good news. It's not the end of the world, but it's frustrating and demoralizing and ugh. I am trying to preserve normalcy for Andrew and Rosie to some degree. I am trying to keep working, to plan for my classes...this uncertainty, after a month of dark uncertainty, is a bitter bite. This is just really frustrating.

G is wildly stressed.

BUT we get to start. Our doc really talked to G, tried to assuage her fears, talked to her about her concerns (this is why I love our doctor. She talked and talked to GENNA first). I am grateful for this. I have to just regroup and keep moving.

G wore sequined boots (silver, like a disco ball), a glittered t-shirt that said GAME FACE ON, and her purple furry hooded fleece. She is going to rock out CHOP EVERY time, if that's what it takes to keep her going. I got through a little paperwork, but not enough...we are just a little wrung out tonight.

But we are grateful, grateful there is this chemo option, grateful there ARE other options, grateful for our doctors and all of you and that at least we aren't at a hospital MORE than 82 miles a way. Genna did tell me the other day that Uncle John (of Yetifunk) could run that far....

better go help Rosie with homework, I just totally yelled at her for bugging me while I emailed Dr. B with "when can we get the meds? aaaaagh?", now I feel bad and I need to be nice to her....my poor other kids. This rots for them.

I am going to go be crabby for an hour, then...Game Face On.

peace, and thank you for praying on our behalf.

k

Friday, December 30, 2011 9:20 PM CST

SATURDAY.
The hoped to be perkier update. If you really, really want cheery perkiness, um, stop reading. Now. Really. Stop. It's ok, I totally understand.

Well, they did let us come home.
The shunt is working.
The OTHER ventricle looks bad.

This is a conundrum.

Our doc isn't in today (heck, NOBODY was at the Wood Center today, we blithely breezed by the weekend security guard in our purposeful march towards MRI)...I have e-mailed a plaintive wail of what now? The other side is "bigger" , and we know (from last time) that this is because of tumor growth. I don't know how bad it is, Dave & I chose NOT to look at the scan without our doctor there, even though the on call doc was super nice. Yes, she came to find us in MRI. No, that is never a good thing, to have a doctor out of their natural floor habitat ...GO BACK TO 3 SOUTH!!! alas...

We really don't know what this means for chemo. I have a couple of gut feelings about what it MIGHT mean, but I need to actually talk to Dr. B before I go all scary medical here.

We are really broken right now. Dave is going out to run...Genna told EVERYONE at the hospital that she is Going to a New Year's Party at Aunt Meg's and Staying Up Until Midnight! So, even though we are so flat, we have to bring her...granted, she also was barely rolled out of the scanner before she was telling me "I am not tired. There is NO MEDICINE IN ME." Um, G...yes. Yes there is. ; )

On the way through the parking deck she was singing "brain tumors suck! brain tumors suck!"...and while I normally reserve inappropriate speech for myself and not my kids (I know), I let her sing.

It was still more appropriate than what I wanted to say. :(

Thank you all for your support and prayers. We kind of desperately need them, and I am so...

thank you.
peace,
k
***************************

Happy almost new year, all.

I know, I haven’t written one speck all week. We did in fact have a nice Christmas, a peaceful morning, a festive dinner…the kids loved their gifts, we were together, hooray.

Genna said to me near the end of the day, “I don’t know if this was a really good day, mom”…

And that pretty much covers how G has been all week, which kind of breaks my heart. Ok, more than kind of. She is really struggling with anxiety about school, about the medicine, about everything. I am trying very hard to acknowledge her fears and then try to figure out how we can deal with them.

We’ve had several David Bailey moments…referring to how you really can never ask “Why me?” (there just isn’t an answer), but rather “What now?”.

This is a staggering concept for an adult, for a 13 year old kid…sigh. But G is mighty.

She has had some pain near her shunt this week, which frankly terrifies us. We scan tomorrow morning again…as a baseline for starting treatment. (She has to scan within 4 weeks of starting the study, but can’t start the study until 4 weeks after “minor surgery”…so she scanned 4 weeks ago…and had surgery 4 weeks minus one day. See the problem?). We need epic prayers that her shunt is ok tomorrow…

If it is not ok, and she needs another revision, we cannot do this trial without waiting another 4 weeks…which would be 8 weeks post yikes scan. There is no way in God’s green earth this is doable. So our communal anxiety levels tonight are through the roof. I just spent the better part of our Cams fam Christmas fest trying to breathe (sorry all). Breathe in…breathe out. Sometimes when I joke about imminent panic attack I’m not kidding. I am about one second from hysterical weeping, but that would be so unproductive.

We desperately, desperately need tomorrow’s scan to be ok…within the context of the horror that lies within, we need it so desperately to be not more horrible.

G did have a festive birthday party to go to this week, and she got some dental work out of the way (she needed some teeth sealed & one tiny cavity fixed...when I mentioned what next week should bring, the doc decided we needed to come back TODAY, and dear Martha the hygienist, who used to help hold Rosie down when Rosie was a screaming terror at the dentist, Martha told me she would work through lunch to help G if she had to).

These are the moments that break me.

And Dave & I both had the moment in the last 2 days of telling friends about what’s happening, friends who somehow didn’t know. We just assume people find out through the grapevine of woe…but oops. And at least for me, I felt horrible, I know I just knocked someone for a horrendous loop telling them …

And still my G laughs, and chats, and chases Dave’s cousin’s baby around …you would never know…

But she’s been napping a lot this week, and those headaches…she never has headaches…

Please, please pray for us tomorrow. I haven’t been in THIS place in a long time, and the familiarity of maternal agony doesn’t actually make it any less agonizing. Dave is so worried too…

And mostly, so is Genna.

If things ARE ok, we signed all the consents, we will enter the trial next week. I spent half an hour on the phone with a doc today asking questions upon questions. Only 2 other kids at CHOP are on this…and neither has NF. This isn’t reassuring either.

Please, please pray for us.

We leave at 5:45 a.m., arrival time is 8, G scans at 9:30. They will not let us leave if something is wrong, so…please pray. I just have such an awful feeling.

I will try to update tomorrow with hopefully something cheerier (like woohoo, we can start chemo? That is messed up, but yes, that’s what I’m hoping for…or heck, maybe “that new tumor area has mysteriously disappeared! Egads!”…sigh. I do try to hope, but I also have to accept what things are, and just hope there’s grace in whatever moment comes).

Peace,
k

Saturday, December 24, 2011 8:05 PM CST

"after all it's only one more sleep 'til Christmas..."

Wishing all of you a merry, blest Christmas. We have done church and our Christmas Eve fest with my parents, Genna sporting her festive animal print sweater and blingy flower, Rose trailing glitter...even Andrew wore a tie (merry Christmas to mom!)...we are trying to clean up a bit and get the girls to bed, Dave has to read "Twas the Night Before Christmas" to the girls...and then we have to do the parental whatnot that Santa requires.

Of course my teen does not want to leave the tv. Hm. I really, REALLY want to get to bed early. Yeah, THAT would take a Christmas miracle. ; )

Anyway, I just wanted to thank everyone again for the outpouring of love and support over the last few weeks. I am kind of trying not to panic, I can feel it creeping in...especially thank you, too, to our dear friend Connie, I never say this here but Connie constantly sends G little notes of encouragement and tchotchke and love. Connie, you mean so much to us, and we thank you for your never-ending support of my G (and R). And to Di, our friend a world away, who knows the sharing of a Bah Humbug is sometimes a very cheering thing. : ) We love you both so much...

We just got the DVD from Ronald McDonald Camp when we came home tonight, we were a little disappointed because during Rosie's circus act the camera was mostly on the other girl; I am glad her counselor showed us video on her iPod, so I did see it....but Rosie was a little bummed. Genna jump-roping was priceless (whip the rope over her head...galumph over it...whip the rope over her head (which had a tiny tiara)...galumph over it). We did see some of Rosie, and she was awesome....her picture is in the calendar, I may try to scan it in.

At the same time, one of the little performers did not make it to Christmas, and seeing that on DVD, her radiant face as she did the circus...

That family is much in my heart tonight...and all our friends who have lost children, and those who are battling. They are so much in my heart.

And at the same time I have to get our family all festive, Rosie is so excited for tomorrow, and G is trying, and Christmas morning is always my favorite moment of the year...everyone is nice to each other, and full of love and that giving spirit...

It is always my favorite. And then there will be roast beast, and potatoes, and a sampling of the dozen types of cookies I did finally make...

and we are together. This year, we are together. So a merry Christmas to that...

peace and blessings to all of you...
peace,
Kristin

Wednesday, December 21, 2011 1:52 PM CST

a slightly later update: 4:43 pm...
thank you, thank you, to all the Santas who thought of G (and R) today...a package from Camp Sunshine arrived, we have applied for the next Camp session but our medical forms are all awry because of...everything...and Camp sent one of the beautiful quilts for G, like the quilts that cover all the walls & beds at camp...and this one has pink and green ice cream cones all over it, so perfectly Genna...such a gift of love, we are so grateful...

And then a package from G's big sisters...she is, as I am typing, showing me the big blanket and squealing, "I love this! it is so pretty, I LOVE THIS!"...and I told her she could wear the G necklace when she goes to CHOP, to know her big sisters are with her...(and now she is Quite Enthused about getting EVERY Scotty song from American Idol. Ahem.). Thank you, girls, you mean so much to her...

And to Annie's friend Melissa...the squeals of delight from both girls...thank you. Thank you.

G just said, "I can't believe people care about me so much...I can't believe it".

thank you all. After you read the rest of my fest o' ergh...well, this was such a blessing today...

Now G is tottering around the living room wrapped in the blanket...so I can feel how soft it is... ; ) ok, this might not end well...

*********************************

Happy almost Christmas.

We are chugging along, I am less panicked about cookies (8 done, about 4 or 5 to go, I trimmed the list some…but my family has Expectations which I foolishly created in my younger, more mentally energetic days). Most of the gifts are done except for a few projects with the kids. G still says about 3 times a day, “I need a hug, Mom, I don’t want to start chemo”. We are getting through. Less than 2 weeks left until we go back to CHOP to meet with our doc.

Sigh.

G got her school picture retake finally. I am so glad I was a stinkhead about that, the new one Looks Like Genna….and in our current moment, that matters to me an awful lot. I need that picture to look like her. If it’s goofy, ok (it’s not, it came out adorable), but the first one was just not G. I am happy, she is happy, joy is restored in the photographic universe.

We also found her something to wear for Christmas. Because of her broken hypothalamus, sometimes dressy clothes are hard to find…but we found a leopard print sweater at Old Navy that she LOVED. While I was more thinking “let’s find a sparkly sweater to go with the plaid pleated skirt”, G was so agog over this sweater, and she reminded me that she had black velvet pants at home (best Target purchase ever a few years back)…so she is going full on Jersey girl for Christmas, and she is very tickled about it.

Rosie is getting a 3rd Christmas out of her Costco glitter dress. Seriously, best $16.99 ever spent, aside from Costco cake. I could get her another dress, but this one still looks so cute and she loves it, even if she does literally leave a trail of turquoise glitter in her wake.
Rosie is home sick today, she came home at lunch with a massive headache. I am remaining zenlike, as you can imagine. She is asleep now, I am hoping she sleeps it off. My sister the headache expert said this sounds like a tension headache, so I believe her.

We got the girls’ eye reports on Saturday, the vision parts were as they should be (no surprise, we watched the doc input the info)…but I read the cut & paste parts from the most recent scan reports. I realized a few things. 1) I always want to insert an alliterative but unprintable adjective in front of Foramen of Monroe, the area G’s tumor went a bit berserk in—now even more so, I hadn’t read the new version yet 2) I hate brain tumors with every fiber of my being 3) While I noticed the change in wording in Rosie’s report back in July, and we talked about it with our doc, only part of our discussion sunk in, because G’s scan THEN was such a Fiasco of Foramen. Rosie has a funky area in the back of her brain that now radiologists are calling low grade glioma. This wasn’t a surprise, but in the stress over G’s stuff, I kind of filed that factoid in the “don’t open until Christmas” folder of my brain.

Um, ugh? Yikes?

We don’t need to worry right now based on radiological evidence, but really, really and truly, low grade glioma is sort of a semantic trifecta of yikes no matter HOW you radiologically slice it.

Realizing too that in less than 2 weeks we are starting again is kind of hitting me. I think in the first week or so of ugh we were able to kind of focus on the YIKES, we are starting…but in kind of a theoretical way, like, we’ll be going to CHOP more, what a pain. G will need a treat post each cycle, better think of that. How will I ever get lesson plans or substitutes for my classes? Oh, is chicken on sale, better stock up…in the last few days there’s been a mental shift to dear God, this is a TRIAL drug. We don’t even know if it will work, and G’s tumors are so obnoxious in the face of treatment…we failed 2 last time before one worked…her tumors could very likely GROW while we’re on this…old feelings long buried. We have been here before. We know what chemo failure is, it is NOT theoretical for G. And this drug has so little info, but once you blast through 3 options …well, the statistics on anything aren’t super great.

And we know too many NF teens who battled long and hard. Past tense. We have so many bt friends in the thick of the battle right now, and NF friends too…it’s brutal in our community right now. Ugh.

And Genna is scared, and not sleeping well, and…sigh.

This has not been a festive week in that corner of my brain. And I know, I know we need to be hopeful, and we will get our game faces on, and we will march forward bravely into the night, but still, it’s freaking terrifying. I think some part of me hoped and secretly thought G had gotten to some magic stable place. She had been off treatment 5 years, and at least 3 of those were mostly drama free-ish. We were the hopeful story.

And maybe we still can be. I am just saying it like it is. The reality is, this is serious. Low grade brain tumors are serious, and I have TWO children with brain tumors. Both of my little girls. This is weighing on me this week. I say it here, so when I see people in real life I can speak without falling apart, I can joke about G’s mighty attitude, I can talk about shoes, or whatever, and NOT fall apart. So far so good. But truly, this is so not good.

Genna is mostly nervous about kids making fun of her (that won’t happen), missing school, feeling weak in her legs, missing school, losing her hair, missing school, etc. It’s a lot for a kid to process, and it is so not what I hoped for my daughter.

And yet we DO have bright moments, Rosie’s pageant at school, which was adorable, and G and R at dance class on Tuesday…the two of them were just radiant dancing, in Modern they can just dance with the spirit of their little girl-ness in such a beautiful way…I almost started crying watching G “dance for God” (it was an upbeat religious Christmas song; G loved “dancing for God” she told me later…so beautiful…so what that is supposed to be).

There are joys. I need to keep them in my sights while I work out all the medical realities and logistics of the next few weeks and months.
Now Rosie has woken up, and she feels better, and she is Done Sleeping, I am being told. Glad she is recovering (with help of 90 minute nap and Tylenol!). Hopefully this was a one day thing.

G is happy about making gingerbread cookies (maybe today?), we never make those and she recently got a recipe…tomorrow is a half day and G has art…my sister Em came home today, my brother comes home Friday, this IS a happy time. G also got a purple shirt that says “BELIEVE” in rhinestone letters, we thought that would be a good chemo shirt too (she didn’t know it was purple, but she loved the bling). She is so sweet and good, and a diva too when necessary. I love her more than life…which I can say for all my kids. This is a happy week amid the shadows.

G is happy about Christmas. Rosie is near ecstatic, she told me she has to imagine Christmas is very far away so she can fall asleep at night. ; ) We WILL enjoy this, we will cherish each moment, I have to get less stressed so we can do that. But we will. For my kids…

Better go figure out how Andrew is getting home, not sure 45 minutes in the car is the best choice for Rosie right now.

Thank you all so much for praying for us and thinking of my G. You truly are all carrying us right now.

Peace, and please pray for our friends battling right now…there are so many…
Peace,
k

Friday, December 16, 2011 2:22 PM CST

Hey all. We made it through the week. Yay us.

Really, Genna is doing quite well. Her incision is looking good (within the context of what it is. Ew), even if I haven’t actually been washing it 3x a day. Oops. We are keeping it clean and it’s healing well. Genna has been fine at school, more alert, apparently (oh, 20/20 hindsight! I curse you!), and catching up on her missed schoolwork.

She still isn’t sleeping well, but that’s not new. She is quite tired. Still, she managed to dance a little this week (Rosie went to class, and G mostly watched, but then did some modern moves). She has been up and ready for school (again, nothing new there), and happily did not go to gym. ; )

Rose and Andrew seem to be doing alright, Rosie has been coping through the old Atari plug in joystick we had buried in a drawer, and Andrew has just been rolling like he normally does. So I guess that is good.

Dave & I are drowning a bit. Missing a week of work wasn’t super great for either of us. He has a pile of CPE credits he HAS to finish before 12/31, and I now have 47,000 pieces of paper I have to grade. At least one day this week I had to wing it with one of my classes, which I NEVER do (honestly, they did fine having a day where they did reading and a worksheet instead of watching The Dog & Pony Show that Is Mrs. Camiolo). But I never do that, and I hate that MY brain is not so much on its A-game.

Almost every day this week CHOP has called. This is wildly unnerving. Really, nothing has been a big deal. In fact the first call was to set up some support stuff for Genna at our first January visit, which was a request of mine and one that I am so happy to have answered so fast…if nothing else, 7 years in this has shown me that we need to get G the emotional & mental support she needs from the get-go.

The other calls were to follow up on that study about decision making. Again, no biggie, but caller ID only says Children’s Hospital, not NO BIGGIE. Ahem. Those daily calls keep reminding me that yes, Virginia, there was tumor growth.

Insert unprintables. I apparently hit THAT moment this week, too…that swampy spot that lies between cursing like a sailor and just wanting to cry. Unfortunately, I have sort of veered more towards the first than the second, but only where I know I won’t horrify people (so it is safe for me to be around your children and your pets, don’t worry). The only thing that puts me in weep mode is music on the radio. You’d be surprised how many songs there are that just hit the fragile mind in a crazy way.

I found the blues station on Sirius this week, so now I can sing the blues. Which, in a funny twist, never make me sad, I find them kind of deeply satisfying and a little amusing. So if I hear a really poignant song about dancing in minefield and sailing through storms or an anthem about laying down your arms and giving up the fight, I can always go find the blues and chuckle about the travails of the blues musician.

That’s kind of messed up, I know. Heehee.

We wrote a blues song for G when she was on chemo last time, The Low Low ANC Blues. I don’t remember how it went, but it was pretty awesome, even if it did NOT make her counts come back up so we could bop out of the hospital back in January of ’06.
On Monday & Tuesday I delivered all my official letters of “this is what’s up” to G’s teachers, and the “if kids are even moderately ill they cannot be by G, ESPECIALLY if they are unvaccinated” letter to the school nurse. I’m not sure that last part is an issue now, but since we have family members on that duck filled bandwagon (wait for it…I am so snarky, but in this case completely unrepentant. I read too much medical stuff to be stupid about this), I double checked THAT with our doc. G is up to date, but if an unvaccinated kid is even remotely sick, and G is on chemo, she cannot be by them. I won’t risk my kid’s life because somebody else is willing to risk THEIR kid’s life.

Ahem. That’s the printable version of my history/science/mom based opinion.

The official letters made everything…official.

Ugh.

The other moment of …reality? …this week has been the plentiful Random Acts of Niceness. We are deeply grateful for the messages, the chocolate tower, the meals, the call from a church group to see how they can help us, the outpouring of support. We are so grateful…and humbled…

Genna gets SO EXCITED when anything shows up at the house. She was waxing rhapsodic about Mrs. G's delicious chicken the other night. Seriously. "mmm, oh mom. This is so delicious. Mm. MMMM!" etc. through the course of the meal. She just delights in all of this...and for THAT we are grateful.

And at the same time, it’s kind of painful to be on that end of things again. I much prefer to be the card sender/meal maker/message leaver/choco-mailer. I hate when we end up needy. I’ve gotten a lot better at just saying thank you instead of looking for a rock to crawl under. We are so grateful. I just find that Random Acts of Niceness make this very real. So very real.

I’m also trying to figure out some kind of presentation for G’s class. I spoke to one of her teachers about the possible need for this, and we think maybe it should happen. G has been having issues with one of the boys in her class kind of bugging her (which predates this scan), we think maybe I need to Spell Things Out for People. I need to talk to G to see what she is comfortable with – which is likely almost anything, I keep hearing her try to explain to people what her situation is, she is very open about it with ANYONE—we may try to get some pictures or video of what she does at CHOP. I have to see, too, if that is ok with parents. Seeing labs drawn might be too much. It also might be a major reality check for the kids who think this is fun to miss school. I need to follow up on that…We shall see.

I also officially edited the “Genna is thankful for NO CHEMO!” part out of our Christmas grateful list. Bleh.

I am hoping that I can shake MY malaise, this weird mental paralysis that happens post-bad news. I need to get festive for my kids. I finally baked my first cookies today (not sure I’ll get to the 12 varieties this year) and put on my first Christmas music . Rosie has her school pageant tonight, and tomorrow we plan to work on a bunch of Christmas crafty gifts that seemed like a great idea when I thought of them months ago. Some things NEVER change. ; )

We only have about 18 days left. I need them to be wonderful for my G….and my other kids.

Thank you all so much for your support. I really cannot express how much it means to us. I think we really are only doing as well as we are because of all of you. So thank you.

And hopefully I will get my cards in the mail tomorrow!
….now G is nearly asleep in the living room, it HAS been a long week…
Peace,
K

Ps . Happy Birthday tomorrow to my Yeti bro, John! Get cake!

Sunday, December 11, 2011 9:16 PM CST

Hey,
Just a short note.

My G and Rosie did a beautiful job in the Nutcracker yesterday…so beautiful. G struggled at the dress rehearsal, she was hanging in there until she found out they were running act one again…a pep talk, a hug, some Cheese-its from a mom who doesn’t know our story (I just couldn’t do it to her there, to tell someone for the first time is so excruciating to THEM…and I just couldn’t do it to this lovely lady), and advice to sit wrapped in her sweatshirt until it was time to go…and she managed to get through.

I don’t know why this mattered so much to me, that she be able to do this. I think a) both girls had worked so hard b) I needed G to see that she COULD do it…even our doctor was all “Yes, she needs to do that.” And so we did.

Seeing G on stage, her sort of spherical galumphy self dancing with all the ballerinas…my heart was so full. She is VERY expressive on stage, she loves acting, so that part she does GREAT at…and she gutted out the rest. In between shows we went to Panera and I got each girl a cookie and a lemonade to share, a good move. They were so happy too because my sister Cath came to the show. My parents came to the second show, also a joy for the girls. Even ANDREW came. Yes, I took a picture. Yes, he was less than awake, BUT that was near the end of the show. He watched his sisters…and that meant a lot.

G was flagging during show #2, but likely only I noticed that.

And when she and Rosie danced in their white angel costumes…

Sigh.

I still can’t believe it, looking at G, that things are the way they are, I just can’t believe it.

We are so grateful to Joanna for letting Genna DO Nutcracker (G doesn’t actually take ballet; she can’t really balance on one foot very well, she sort of wobbles, normally she takes Modern because she can be kind of freeform in her movement). Still Joanna finds a way for Genna to feel like a superstar. G danced with the teens this year, to her great delight…and she held her own. Thank you, J, for all of your love for my girls. We love you.

After the second show we got dinner with my parents, G started to melt down a bit, but we got through and got her to bed.

Her incision looks good (in a oh yikes kind of way), and she is planning to go to school early with Grandpa tomorrow so she can avoid the bus. I support that.

Today I wrote the letters explaining things to her teachers (they do know already, but this is the official whatever), that was hard. The time warp aspect of this is really challenging. It’s like we’re watching our own scary movie, and I keep wanting to yell “DON’T GO IN THERE!” as we stand before each scary door. But I know we HAVE to go in there, and that rots.

We did officially find out that G CAN safely start Sorafenib in January. I guess yay. No, I know yay, the alternative would be much harder on G’s quality of life (more frequent hospital trips/longer days). Sorafenib is also some kind of inhibitor, it messes with signaling pathways…I always get the name wrong, and I’m too tired to look up the right word. But for accuracy’s sake, I figured I should throw that out there. It’s not normally described as an antiangiogenesis drug first, that’s a secondary feature.

We prefer our chemos to multitask, thank you very much.

Anyhoo…G does keep telling me about 5 times a day that she does not want to do chemo. I can only agree with her. We are working on ways to make this stink less, and G is interested in all plans for diminished stinkiage.

Today she did have a fun day with Grandma C, going to a Gingerbread display and craft fair somewhere. She loves that kind of thing. She was a little sad to miss Santa who visited our street on a fire truck today, but her time with Grandma balanced things out!

We have a Christmas tree up, but not decorated yet. We are just drowning in trying to catch up from our lost week before we all go back to work. I am hopelessly behind in my paperwork, but I find it so very hard to focus. Not that I’m obsessing about G, I just can’t think. My brain is short circuiting somehow.
Tomorrow we all head back to school. I know this will be a challenging day for G (as desperate as she is to get back to school), and I am hoping to avoid my random wreckage day that I’ve been tippy toeing around. Seeing all my coworkers is going to be brutal, I know. They are my friends…and they love G too. It is honestly almost worse having our friends and family so upset FOR us. There really is Not One Good Thing to Say. Not one. Not even half a one, truly. And that’s ok…I can talk the science of it, I can talk the plan of it, it’s the personal of it that kind of renders me a Zombie Apocalypse waiting to happen.

And quiet moments are hard. And church music. Be Not Afraid, and such…yikes.

But phew, after THAT moment at church today they ended with The King of Glory, which ALWAYS makes me think of Stephen Colbert dancing (check for it on Youtube, it is hilarious). ; ) Heehee.

Thank you all for praying for us. I just don’t know how to navigate this again.

But as I keep telling G, she did this before. She can do it again. She is so mighty.

Peace,
Kristin
And sorry, this ended up being long. Oops.

Friday, December 9, 2011 7:50 AM CST

Hi, all.
Just a quickish update. This is what happens when I forget to update for a month, you get a week where it’s all news all the time. I’m like the 1010 WINS of Caringbridge, give me 10 minutes I’ll give you our world.

G is recovering remarkably well from surgery, she has her ups and downs, and she is VERY IRRITATED that she can’t go back to school until Monday, but all in all this was a textbook shunt issue. For anyone who has been with us for years, you know we rarely do ANYTHING textbook, so yay us.

I have to scrub her incision 2x a day, which is exceedingly unpleasant, my vocation as a teacher NOT a nurse is made clear each time we have this moment. HeebieJeebie.

Yesterday we left around 6 a.m. to get to CHOP for our 9 a.m. eyeball check and then a “wander up to oncology and find Dr. B” appointment. Yeah. I should have been better prepared for a super long day, but we had such a fast turn around I really didn’t get my head together. Kind of wish I had packed my much neglected school work. My students may have formed their own government and staged a coup of the classroom by this point, who knows?

Anyway, we waited about an hour and 45 minutes to see Dr. Liu. G’s eyes are stable, which is HUGE. H. U. G. E. We really needed that, because a change in eyesight means huge yikes. So she has larger tumors but her eyes are stable, right is still about 20/30 corrected and her left was steadily 20/125ish…she still can’t see ANY of the color plate things (patterns of colored dots…she sees the colors, just not the patterns, it’s a contrast issue), but this was huge.

Rosie, on the other hand, has 20/15 vision. Yes, that’s Twenty /Fifteen. I asked the Fellow and then Dr. Liu if we could come back AFTER the chemo meeting to have Rosie read the 20/15 line again. That does NOT get old. Because of her age (9) Dr. Liu feels she can COME BACK IN ONE YEAR. Cue angelic choir.

I have 2 kids with optic glioma. But it seems Rosie’s vision is at this point protected, for NF kids normally vision loss has already occurred by 9 if if’s going to. So Yee and Haw for us.

G goes back in 6 months, which is ok. We’ll be there anyway.

We tromped up to oncology …and waited about 5.5 hours. My girls played the computer, Rosie played Wii, they made Christmas cards and colored a Candy Land picture for the onco playroom window, Genna played with a 3 year old, and scoped out the Beads of Courage program (so funny to watch the wheels turn, as she realized kids get a Special bead for PICU…yes, we’ll be signing her up for this program soon). I tried to keep a migraine at bay, and Dave did work. 4 days at Club CHOP was not so much in his work schedule. Sigh.

Finally we saw Dr. B, and we talked and talked and talked…I so appreciate that she does take the time with us, that’s why I never mind waiting there, I know she gives EVERYONE the time they need. The yay/boo of things is that most of the drugs we are looking at are relatively new. This is a yay, most of these drugs were simply not available the first time around. The boo is that because they are new, there just isn’t a lot of data on efficacy or long term whatevers. This makes research and decision making challenging.

Because Genna had surgery this week, we cannot start a particular class of drug for 4 weeks. Our two bestish options (in the mélange of stinkhead options open to us) are both antiangiogenesis drugs. Oh yeah, I whipped out the word endothelial yesterday. Bring it, oncology! Ahem, sorry. I am still so sleep deprived. Anyway, antiangiogenesis drugs starve blood vessels to the tumor (ish. I am not Medscape, but that’s the basic idea)…so you can’t have just had surgery, there are bleeding issues or something.

While I won’t go into the whole reasoning behind our choice, we are likely starting a Phase II clinical trial of a drug called Sorafenib. This is a medication taken orally at home 2x a day. For Genna, this is a HUGE quality of life issue. We love CHOP, but we live 82 miles away from it. And the combo of Jersey & Philly traffic are not a super hooray, let’s put it that way. So less frequent hospital days and NO port (the surgically placed chemo plug-in spot) are big for Genna.

In a moment of “hey, it IS a small world after all!”, this study is sponsored by the PLGA, the Pediatric Low Grade Astrocytoma Foundation (as opposed to the LPGA, which is what Dave keeps saying…there are golf outings that help fund PLGA’s work, but boys can play too). PLGA sponsored the first ever low grade tumor week at Camp Sunshine this summer…where we got to hear Dr. Kieran of Dana Farber Cancer Center talk about cutting edge research in tumor battles…including Sorafenib. While I think a granola bar exploded on my notes from Dr. Kieran’s talk, it was handy to whip them out yesterday while talking to our doc…who is up on all the study stuff too. This gives us confidence, if not wild optimism.

So, in the midst of some pretty epic yikes here, we have been blessed in several ways. And while I know that I will likely spend most of today randomly crying (haven’t had that day officially yet, and it’s a brewing, alas), we will get through somehow. At least we have Christmas, thanks to the nature of these drugs. I am scared to wait, but these options require it. So we have Christmas. And I intend to make it be fabulous. …to just cherish each moment, be that a night of watching Muppet Christmas Carol, or finding lights to go see, or maybe a concert at our church…or just baking cookies or making presents for family. For G, and for Rosie and Andrew , I need this time to just be what it’s supposed to be ANYWAY. I mean really, it’s not like you need catastrophic illness to have Christmas be awesome. But the last couple of years have been challenging…

Now that the Elephant has started leaving shoes in the living room, we are just going to celebrate around him, if you know what I mean. We’ve tried to ignore him, tried to fight him, tried to do whatever. Now we will LIVE the next few weeks as if his ginormous wrinkly pachydermish self was not hogging the couch.

Sigh.

So as it stands now, G will rescan on 12/31. Yes, I know. Great timing. Ring out the old year with chemo prep for the new. Woo. Hoo. We’re actually most bummed because we have to miss our soup kitchen day that day… (and herein lies the madness that comes with restarting chemo…we can’t plan ahead, we have to consider so much more in every schedule choice, nothing is certain…we had let ourselves plan ahead the last few years, we had let ourselves think “hey, in 4 months we’ll…fill in blank…” . This shift rots, frankly). It’s hard to ponder that now G will be on chemo when she graduates 8th grade…she’ll be on chemo when we hoped to do all sorts of family things…now she will not be going to my brother in law’s wedding (which is ok. It was a 13 hour drive…but really, I would rather do that than chemo). Ugh. I had let myself think about G in high school, maybe even college…

I’m a history teacher, I hate when life messes with my chronology.

Anyway, she will scan then, we will go back to meet Dr. B on 1/3 and then hopefully start by the end of that week. There are still a few issues to iron out, so this could completely change in the next 48 hours based on one of G’s existing meds…but right now, this is the plan.

Thank you all for praying for us. Please keep praying for G, she is so up and down right now…very sad, but then very G (happy with pictures of babies in Santa hats sent by a neighbor, showing people her Matthew West concert bracelet, playing Scrabble on her Kindle). She is mighty. She is going to keep being mighty and glitterific and G-bone. And I will make silly t-shirts and songs about chemo (you can sing So-Ra-Fe-nib! to the tune of O Canada…the chemo we will take…will make our tu-mors jump into a lake…ok, no awards here, but this is the creative group that brought you T-P-C-V to the tune of YMCA. It ain’t pretty but it works for G). We will find our way.

Still, 5 years was just not enough. Not enough.

Thank you for praying. We do truly believe that’s gotten us through so far. I find it hard to pray right now, other than the generic “Heeeeeeeeeeeeeeeeeeeeeellllllllllpppppp!” kind of prayer , or the desperate middle of the night “Dear God, please spare my child”…so thank you for praying in the words I don’t have.

Peace today….
Kristin

And now to change our Christmas list o’ thanks that goes in our Christmas card…G’s top thing was from this fall “I don’t have to start chemo”…and therein lies the road to : (

Monday, December 5, 2011 6:59 PM CST

Wednesday: 3:58pm
we are home.
Exhausted, but home.
I am kind of moderately in hiding, so please don't feel bad if you try to call us and get no answer.

G is doing pretty well, she crashed late yesterday (just weepy and not feeling well), the stronger pain meds helped her. She is lying on the couch now, watching Man v. Food and trying to find out what her homework is.

She is VERY irked that she's not allowed back at school until Monday (and even THAT took some negotiating). We hope to get her to Nutcracker this weekend, she may just have to really take things easy (no hopping).

The rest of us have to get to church tonight for tomorrow's holy day, then Dave & R & G and I are back to Philly at 6 a.m. tomorrow for a previously scheduled eye check, and then we are to wander up to oncology to find Dr. B and talk about what we need to begin.

I really need to do research tonight, but I am so tired, so very tired. I just need to talk to people who know about lenalidamide, sorafenib, RAD-001, avastin/irinotecan...and all the ships at sea. I have a bunch of info (some of it reads like Chemo For Dummies... "this medicine kills some cancer cells. You get this medicine from your doctor. Don't forget to take your Chemo!" aaaaagh), but I need to find out the Real Deal from folks whose kids have taken these meds (which is hard, since most of them are trial drugs).

Last night in the PICU a group of gentlemen in Santa hats came and caroled outside our room...it was so lovely, and yet so sad...how are we the people getting done nice things for (sorry for the grammar yikes, but you know what I mean?)?? It is painful to be those people again.

5 years just was not long enough.

Anyway, it is so good to be home, to see Andrew and hug my Rosebud, to eat chocolate and take a real shower (still need to get to that!). My just in case bag does not include hair gel, I looked like a giant shrub today!

Well, that was an important note. ; )

Right before we left a young med student of some kind asked if we wanted to help with research about how parents make tough medical decisions for their kids. It was just too laughable, the timing, so we jumped in...but really??

ok, gotta run...

thank you all for praying...
k

TUESDAY: it ate my update! ack!

After a long & sleepless night, (poor G was so full of dread), we were awakened at 7:15 by our nurse (we finally fell REALLY asleep around 5:30)...G was scheduled to go FIRST today!

After some mad throwing of things in bags and searching for shoes and a clean outfit (Dave got the quick shower...he doesn't pack a just in case bag, so he needed the shower more!)...we were off! G was in the OR by 8:15, doc scrubbed in by 9, he was done by 9:25!!! (when I saw him at 9:40 I was all like, "WHY ARE YOU HERE SO SOON?? WHAT IS WRONG?"...and he answered, "What, am I not THAT good?"...a confidence I appreciate from the guy fixing my kid's brain!).

The shunt was clogged. Just regular clogged, not so blocked by the tumor growth that it couldn't work. I am so relieved about that...a textbook fix actually likely has worked! A catscan tomorrow (4 a.m.? sigh) will show us for sure...and then we can hopefully go home.

Only to return on Thursday for that blasted eye check...and it's supposed to snow? sigh. Need to figure THAT out.

G is doing remarkably well, her pain is well managed (awesome nurse!) and she is lobbying for lunch. She is peaceful now (right after was a little tough). Our room is quiet and private, and I have hope of an eventual shower.

Our neurosurgeon does think that chemo is our next best option, as opposed to debulking.

I need to help G use the loo and then figure out lunch...please keep praying for us as we make some really tough decisions moving forward. Highly craptastic choices from a melange of sucky alternatives.

thank you all for praying for us...you are carrying us right now...

peace,
k
****************************

"we're ba-ack!"...

at CHOP.
Inpatient.
Facing chemo.
After shunt surgery scheduled for tomorrow.

Every single ounce of my being hurts right now. We knew it was bad as soon as we saw our doctor...

I just can't believe we are here again.

I can't believe 5 years has come and gone and what do we have to show for it?

Walking back onto the onco floor was like stepping into the Twilight Zone, albeit a TZ with newer beds.

G is so upset...thanks to everyone who has texted her or called her, that is literally carrying her, when she is texting or chatting she forgets...now she is watching the CMA's (that would be COUNTRY MUSIC awards? hello?), she just had a doctor ordered bath pre-surgery and I have to do some weird anti-bacterial wipe thing later. We met the anesthesia guy, I have papers about 3 different chemos to choose from (and I know of 2 or 3 others I don't have in my bag). My head is throbbing, and I am eating a salad...I know I have to eat.

I was shaking so badly today when talking to our doc...completely held it together until I had to tell G. She had left the room...

Dear God, I cannot believe we are here again. I cannot believe she will be starting chemo again. She asked if she was going to lose her hair...

As G left our house at 4:40 this morning, she was singing in a deep bass voice, "I hate scan day! I hate scan day!"...

I hate scan day too.

please pray for us, we are just so broken...and my other kids are at home, and I don't know what to do for them, and I have no work for my classes...and how will I keep working?

unprintable moment coming, or tears....

I HATE NF AND BRAIN TUMORS WITH EVERY FIBER OF MY BEING, AND I WILL NEVER UNDERSTAND WHY THIS HAPPENS TO INNOCENT CHILDREN. I just don't.

please storm heaven for my poor G...and my other kids, too...and for me & Dave as we try to pick our poison literally for G.

peace from 3 South room 21...oh my God, I cannot believe we are here...

k

Monday, December 5, 2011 6:59 PM CST

TUESDAY: it ate my update! ack!

After a long & sleepless night, (poor G was so full of dread), we were awakened at 7:15 by our nurse (we finally fell REALLY asleep around 5:30)...G was scheduled to go FIRST today!

After some mad throwing of things in bags and searching for shoes and a clean outfit (Dave got the quick shower...he doesn't pack a just in case bag, so he needed the shower more!)...we were off! G was in the OR by 8:15, doc scrubbed in by 9, he was done by 9:25!!! (when I saw him at 9:40 I was all like, "WHY ARE YOU HERE SO SOON?? WHAT IS WRONG?"...and he answered, "What, am I not THAT good?"...a confidence I appreciate from the guy fixing my kid's brain!).

The shunt was clogged. Just regular clogged, not so blocked by the tumor growth that it couldn't work. I am so relieved about that...a textbook fix actually likely has worked! A catscan tomorrow (4 a.m.? sigh) will show us for sure...and then we can hopefully go home.

Only to return on Thursday for that blasted eye check...and it's supposed to snow? sigh. Need to figure THAT out.

G is doing remarkably well, her pain is well managed (awesome nurse!) and she is lobbying for lunch. She is peaceful now (right after was a little tough). Our room is quiet and private, and I have hope of an eventual shower.

Our neurosurgeon does think that chemo is our next best option, as opposed to debulking.

I need to help G use the loo and then figure out lunch...please keep praying for us as we make some really tough decisions moving forward. Highly craptastic choices from a melange of sucky alternatives.

thank you all for praying for us...you are carrying us right now...

peace,
k
**********************

"we're ba-ack!"...

at CHOP.
Inpatient.
Facing chemo.
After shunt surgery scheduled for tomorrow.

Every single ounce of my being hurts right now. We knew it was bad as soon as we saw our doctor...

I just can't believe we are here again.

I can't believe 5 years has come and gone and what do we have to show for it?

Walking back onto the onco floor was like stepping into the Twilight Zone, albeit a TZ with newer beds.

G is so upset...thanks to everyone who has texted her or called her, that is literally carrying her, when she is texting or chatting she forgets...now she is watching the CMA's (that would be COUNTRY MUSIC awards? hello?), she just had a doctor ordered bath pre-surgery and I have to do some weird anti-bacterial wipe thing later. We met the anesthesia guy, I have papers about 3 different chemos to choose from (and I know of 2 or 3 others I don't have in my bag). My head is throbbing, and I am eating a salad...I know I have to eat.

I was shaking so badly today when talking to our doc...completely held it together until I had to tell G. She had left the room...

Dear God, I cannot believe we are here again. I cannot believe she will be starting chemo again. She asked if she was going to lose her hair...

As G left our house at 4:40 this morning, she was singing in a deep bass voice, "I hate scan day! I hate scan day!"...

I hate scan day too.

please pray for us, we are just so broken...and my other kids are at home, and I don't know what to do for them, and I have no work for my classes...and how will I keep working?

unprintable moment coming, or tears....

I HATE NF AND BRAIN TUMORS WITH EVERY FIBER OF MY BEING, AND I WILL NEVER UNDERSTAND WHY THIS HAPPENS TO INNOCENT CHILDREN. I just don't.

please storm heaven for my poor G...and my other kids, too...and for me & Dave as we try to pick our poison literally for G.

peace from 3 South room 21...oh my God, I cannot believe we are here...

k

Friday, December 2, 2011 5:45 PM CST

I have now reached beyond epic fail levels on the updating. For whatever reason, I have not been able to achieve much in the way of balance this school year. Adding the new class so late in the summer (during my in-between-scan-freak-out-month) has made this year very challenging. I keep meaning to update here, and then…I just have no mental energy to do it.

That said, I hope everyone had a nice Thanksgiving. We mostly did. We had a lovely dinner with my family, my sister is back from Africa, and 3 other sisters are home…it was lovely. And I made a wickedly delicious pumpkin bisque with smoked gouda. Yum for days! So I am thankful for that.

I also know that somehow I have utterly lost my ability to be a nice human being…or to put up with fake anything (except Fuggs. I do love my fake Uggs). I have to have some kind of snark-ectomy before the next round of familial togetherness occurs. Or I have to officially become a recluse. I am well on the way to that, so really…

ANYWAY, in a hooray of massive proportions, the Sunday before Thanksgiving Dave ran his FIRST FULL MARATHON. The weekend was a logistical nightmare (we had a full afternoon of Nutcracker rehearsals on Saturday…then BACK to Philly), but so inspiring and great and awesome in every way. Dave was so mighty. He left for the race super early, and we watched him(and other NFE runners!) run by our hotel! (we cheered from the balcony…which was about the ¾ mile point). The only glitch was my poor Rosie ended up with a stomach bug…she was such a trooper, she made it the 10 blocks down to the 6 mile point, where we cheered for Dave, and then the mile or so to the 13 mile point…she was dragging and suffering awfully, but managed to hold herself together somehow until we made it back to our hotel room after the race.

Dave ran with NFE, of course, and we are so proud of his efforts. He finished in 3:57:something…under 4 hours, which was his goal. My feeling of relief when he crossed the finish line was almost immeasurable. I really am crazy proud of him (and so glad those massive training runs are over for now! Woohoo!) ; )

The girls have been super busy with school and Nutcracker rehearsals and all sorts of this and that. G has been chugging and chugging through school work. She is obsessively diligent…and homework is kind of a communal experience here. I am trying to be uncharacteristically patient. All in all she is doing well. The social side of 8th grade is tough, but…it is what it is.

Once again, the Elephant is knocking…Monday we scan again. G is dreading it. I am not super yay about it, to be honest. G has had headaches (likely allergies, but…um, yeah. Like Shakira’s hips, MRIs don’t lie). She has had piles of anxiety. She is so worried.

I was pretty cool about things (well, ok, within the context of my ridiculous personality, cool for me), but today I realized I had lost completely my ability to be around other human beings. Not that anyone did ANYTHING not nice. I just have no ability to be around people until after Monday. This could be problematic, since I don’t actually live in a cave. Hm.

We have to be at CHOP at 6:30 a.m. on Monday. Ugh. Still, an early appointment is better for G. We see our doc later in the day. Then on Thursday I have to take BOTH girls back for an eyeball appointment. What was I thinking? Well, I was thinking the girls have off Thursday, and G has fits about missing school. But YIKES! That appointment is at 9…

Yes, we still live 82 miles from CHOP. At least there’s no traffic around Philly…

Sigh. She lies.

Anyway, this is another crazy weekend, followed by scan crazy, in the midst of trying to get ready for Christmas. I am determined to keep my fa la la la la intact this year!

So that’s our update…more of the same, really…school is a challenge, Dave is running, we are scanning, G is stressed. But this update is a speck different, now I can stress manage with Cadbury Christmas balls. ; )

Seriously, please send us good thoughts & prayers for Monday. I kind of utterly hate all of this. I hate that this is my kid’s reality. How the heck did that even Happen?

Anyway, thanks…and happy Advent.
Peace,
k

Saturday, November 5, 2011 8:54 AM CDT

Ack, another epic fail on the updating front…

And we have had so much going on, some fabulous, some uber-yikes, some meh. In short order:

Fabulous! Genna met her favorite singer/songwriter, Grammy & Dove award nominee Matthew West. She nearly passed out, it was like watching old footage of girls meeting the Beatles, except colorful (for Genna EVERYTHING is colorful. ; ) ). She wore a t-shirt that said “SURVIVOR” in sparkly letters (Matthew has a song called Survivor, super appropo for G) , and Matthew met her at the meet & greet before the concert we brought her to…she literally was beside herself getting to meet him. Matthew donated a guitar to our Coffeehouse a few years ago, and we have long hoped to be able to thank him in person.

In the middle of the opening act, the stage manager came over to us and asked if G could come up on stage at the end of Matthew’s first set. G burst into tears. He called her up, gave her CDs and such, just made her feel like a superstar…I have NEVER SEEN HER SO HAPPY. Seriously. She so needed this kind of encouragement, and we are just…it was almost indescribable. I posted video on Facebook…just so amazing.

A week later she said to me, “Mom, at this time last week I was meeting Matthew West”… : ) And his song was #1 on the Contemporary Christian music charts this week, which made G even happier.

In one crazy kind of moment, a mom came to say hi to us after the concert…her daughter is a bt patient at CHOP! We got to encourage THEM a bit, since G is a 7 year survivor and they are about 7 months into their journey…with a lot of similar hurdles. A very cool moment for all…after the concert people were coming to G and telling her they would pray for her…the whole thing was one of the most uplifting nights Ever for us. Ever.

In the Yikes! front: We lost power/light/and heat for 5 days after a freak October snowstorm. Wet snow on trees that still had leaves equaled a nightmarish mess of downed trees and wires. Misery times a million. When our power returned Wednesday night I almost cried for joy. The starting temp in my house on Tuesday morning was 49 degrees. Way. Not. Fun. When I broke my glass French Press coffeepot Wednesday morning my proverbial camel’s back was snapped. Yikes. I am SO GRATEFUL FOR ELECTRICITY.

The trees in my yard…alas. But what can you do? At least we were safe, we were out when the storm hit, it was much worse than predicted…talk about a scary ride home. We missed the RU game (they lost, so whatever) and Meg’s Halloween party. Misery! Heck, even Halloween was postponed until this weekend in most towns around here!

In another yay! Note, we got to see G’s RU LAX big sisters 2 weeks ago at the annual banquet and scrimmage. Except that the day turned freakishly unexpectedly cold (thank God I keep a wool blanket in the van!), we had a blast. It was great to meet the freshmen and see old friends. Genna was SO HAPPY to see her big sisters!

As for meh? I scheduled G’s scan. Bleh is more appropriate than meh, really. It took some contortionist skills to get things lined up, some “special permission” and whatnot. I was almost not nice…after SEVEN YEARS I can’t see how we need special permission to see our doc ON scan day. I won’t leave the hospital until someone tells me it’s safe to do so (because of G’s shunt), and I have gotten bad tumor news on the phone before. I will not do that again. Ever. Anyway, it all worked out, December 5 is scan day and then December 8 is eyeball day. Two CHOP days in one week. Oh, the joys of life are without number.

Finally, tomorrow, in what will likely be a logistical contortion of remarkable proportions, we are going to head to Race for Hope, a brain tumor 5k in Philly. We have never missed one, not since the inaugural year…November 2006 Genna couldn’t manage to walk 3 miles. I had to pull her in a wagon. And I didn’t own real sneakers at that point. Yeah, times have CHANGED!

Anyway, we are going to walk the 5k tomorrow (Dave will run; Andrew is away at a school thing this weekend). It’s just the 4 of us, I think, we are past the years where a team of 40 would join us. That’s a good thing, really, in terms of how it reveals where we are in our journey. At the same time, I’m a little sad to have such a small crew, but we will go represent the G-foRce!

I am realizing one unfortunate side effect for our family of all of the last 7 years is this odd constriction of our social life. Some of that is just people moving on, and we are stuck. Some is just life being what it is. Some of it is just me being a loner, Dottie, a rebel… (sorry, that movie reference just always ends up somewhere). We have to try and stretch a bit more, but I just feel a bit atrophied, if that makes sense. We have a lot of friends in the BT/NF community, but they all have a bad habit of living in other states. And I don’t mean like a state of zen, or a state of emergency, I mean like Wisconsin or Idaho or VA or Massachusetts or (fill in the blank with any one of the 49 states that are not NJ!). This is a conundrum.

As a side note, you KNOW you’ve been offline due to power outage too long when G gets a text from Australia to see if we are alive! ; ) (love you, Di!).

Anyway, in this month of Thanksgiving I am super grateful for health, for smiles, for pumpkin muffins and the fact that Dunkin Donuts did NOT lose power this week. I am grateful for so much, and I am determined (ish) to cling to that as we careen towards scan day. I don’t want to lose this beautiful season to yikes like I did last year.

There is a gogurt situation in my kitchen, I better go intervene…and then start digging through projects I was supposed to have graded (can’t grade papers in the dark and cold, I learned. I never would have made it as Laura Ingalls, that is a FACT).

Peace out, all….

Kristin

Tuesday, September 27, 2011 4:36 PM CDT

She lives!

I know, there was likely some doubt in the land, since I haven’t updated. My computer keyboard broke, and I was using a Kohl’s $8 mushy keyboard that simply could not keep up with my fingers. Every time I tried to type letters would be missed, apparently you have to whack the keys exactly in the middle and with immense force to get letters to actually show up on the screen.

I finally just ordered a real keyboard from Amazon, which was all of $11.97 . Why the heck I didn’t think of this sooner, I will never know.

So, as evidenced by the picture of Weary Elation above, we rocked out the Philly Rock n’ Roll ½ Marathon!

We stayed in Philly from Friday night through Sunday afternoon. A few years ago we learned that having the extra night made for a more healthy race. I actually slept quite well the night before the race…Friday night, not so much.

We also learned that staying closer to the race start is worth the extra $30 or so. My girls end up walking a long way, and when Rosie was littler, carrying was often involved. Yikes! Having 2 spaces for sleeping also facilitates peace in the land. We stayed at the Embassy Suites right near Logan Square, in the heart of the Museums District. I so love Philadelphia. But for my Giants & Yankees (and Mets), ok, and Devils, I would totally live in Philly.

On Saturday we enjoyed a lovely brunch at the hotel, and then we traipsed off to the Expo. Andrew refused to come (which is all I will say about how charming he was all day Saturday), but we had a great time…taking pictures near the LOVE sculpture, quietly watching (ok, and mocking slightly) a Segway Tour (8 people in helmets riding Segways in a turtle like line), taking pictures near other public art (a giant paintbrush). When we got to the Expo, we were agog at all the displays and interactive whatnot. This year was a lot different than other years.

I got my official race stuff, and did have at least one giant moment of WHAT THE HECK HAVE I DONE??? But then Rosie wanted to win a giant sneaker pillow (she totally worked her tiny cuteness and DID win a sneaker, which then I had to carry the rest of the day)…we moved on!

The Expo was a blast. The girls tried on Elvis wigs and rocked out in front of a funny race picture, Dave got his stride examined, we shopped alarmingly (stress shopping is worse at a race expo! I got some very cute headbands, and a shirt to go under my singlet, and arm warmers that said “if found on road please drag across finish line”) . Finally we moseyed back towards the hotel, Dave found a tiny corner restaurant that made cheesesteak sandwiches, we hit the bakery we found last year for cookies, and all was lovely in the world.

The rest of the day was spent prepping our NFE shirts and cutting out letters for a new sign. Unfortunately the letters were too big. Oops.

We finished the day with the pasta dinner, where we were joined by my girls’ dance teacher Miss Joanna and our new G-foRce! Friend, Blythanne. My sister Elizabeth joined us just before the dinner—she was our support crew, aka the Kid Wrangler.

The NFE pasta dinner is so inspiring and motivational. You don’t think you’ll ever want to run…and then you go to one of these dinners…just amazing. Thanks to Trisha Budlong for all her hard work…

So. The Race. Oh my gosh I was nervous, and with the staggered start I had to wait almost half an hour before I even crossed the start line. Most of the half hour after I got to my corral was consumed with thoughts of wow. I have to go to the bathroom. And I know you all know, when that thought is in your head, it becomes All Encompassing. But we danced to the Rocky theme , to Don’t Stop Believing, to anything (a cool wind was blowing)…and finally started.

So AWESOME!! If I could always run with crowds of other runners and cheering and music and no traffic to dodge, I would be WAY more into running. ; ) Right near the half mile mark I saw Dave coming back the other way (yes, he’s in a much faster corral). We ran past Independence Hall, through Center City, past fountains and hoorays. I did find another bathroom along the way, and decided to stop. Best call ever. I totally messed up my watch and then utterly ignored my run/walk plan and ran the first 2 miles, the pace was not that fast and I felt so good. By mile 3 I started to warm up, and took off my arm warmers. As we all neared the 5 mile mark I could see our G-foRce! Signs up ahead…and I just felt so good, so happy, so energized…I briefly stopped to hug my girls (and high five Andrew) and throw my arm warmers to Elizabeth…and then I was off into the Park.

At about mile 6 things didn’t feel quite so lovely anymore. My left knee started to twinge, by mile 8 my right knee was aching too. We kept running AWAY from the city, which seemed to be becoming less and less of a good idea. I loved the cheerleaders, the bands, the people running by me. By now I was carefully back to run/walk/run, about 5 minutes of running to a minute or two of walking. Just before the 9 mile mark I saw the bridge, we crossed the river and turned back towards Philly. Yes, I said, “THANK YOU JESUS!” out loud.

My knees were not great, but I felt strangely empowered hearing people around me talk about how they felt lousy. I am NOT alone in pain! (Dave never hurts while running). I also enjoyed keeping up with a lady in a green sparkly skirt running HER first half. I also kept running past/getting passed by two girls in matching pink outfits with hard core drink things on their backs. I do think I finished ahead of them ultimately. My walking intervals were pretty solid. I kept munching sport beans and sipping water at the water stops, and my stomach felt fine.

I got a fair number of comments on the argyle skirt, too. This energized me as well. The NF coaches along the way were truly the best, I just felt like I wasn’t alone out there. Passing other NFE folks on the course gave me oomph too, as I cheered “GO NF ENDURANCE!” as I schlumped by.

I still cannot believe I did not once curse in my head while running. THAT was a new moment. Ahem.

Finally I saw the 10 mile sign and I just was so pumped. WE HAVE THIS! I said again aloud, but nobody paid attention. But I knew at that moment I could DO it. I only had a 5k left. ANYBODY can do a 5k…

At the 12 mile mark I took the Team Sandy/G-foRce! Keychain that is my treasure out of my race pocket thing, and wrapped it around my hand. Sandy was going to run with me to the finish. I could almost see her by the side of the road, cheering...

I kept slogging along, and finally got to the small hill at the end of the race, I knew that there was a hill from all our years of Race for Hope, so I was prepared. At the top of the rise I could see the G-foRce! Signs, and even though I felt like jello on the inside I SPRINTED up the hill, smiling my head off, high fiving my family…and then I realized there was still about a 100 yards to go. My legs were um, done. I almost started laughing, I literally had NOTHING left. That final sprint killed me, but I shuffled on to the finish,…

I raised my hands over my head, raising Sandy and my G & R and all the names on my wristbands to the sky ,and crossed the finish in absolute triumph.

Ok, so I almost hurled right there (nothing like that to bring one back to reality), and almost instantly my knees staged an official coup de tat, but I have not felt that proud of myself EVER. Not flipping EVER. For my girls, for David, for our friends, if only to prove to myself that NF will never crush my brain, I did it.

I toyed with wearing the big honking medal every day for the rest of my life, but it's kind of heavy. ; )

And for all of you who supported us, I truly, truly believe that your love and prayers and encouragement carried me along the course. I could NOT have done it without you all. I am not a runner. Only for my family did I do this. Only because of G's bad July scan did I even sign up. You all carried me through my well meant if ill thought out folly. ; ) Thank you so very, very much.

Officially, Dave finished in about 1:43, he was quite pleased. My time was 2:17:56, 12 minutes under my goal time. My splits were all identical, thanks to the Galloway method I managed to keep up my pace the entire 13 miles. Joanna finished in 2:54 (I think?) and Blythanne (walking! With an injured ankle!) came in not long after the 3 hour mark. The G-foRce! Was so mighty…

For the first time ever, I knew what it was to like running. Granted, I now took a week off, and tried a treadmill workout yesterday. Ugh! But my time on the NF Endurance team has only just begun. Dave is in the thick of training for a marathon , a FULL marathon, his first, in November. I keep looking at roads as I drive around town, and I feel this surge of hooray as I think “I DON’T HAVE TO RUN ON THESE ANYMORE! ha HA!” (the long run course, the close stuff doesn’t give me that feeling. ; ) ).

Thank you all, so very, very much…

On other crazy thing: the Wednesday after the race my girls and I Amtraked to DC to see the 46 Mommas shave for the brave…for St. Baldrick’s. Please, if you can, check out www.46mommas.com You WILL be inspired. Momma Maria Joffrion is a dear friend from Camp Sunshine, we are just so proud of her and all the mommas…and I am so glad I got to meet some long time bt friends for the first time…

Only now am I getting back into life…I finally got my hair cut (no more need for a ponytail), I am caught up on school paperwork, I am back to dealing with school issues for G. But I have more hope today than I did a few weeks ago. How can we NOT find a cure?

I so have to go make dinner…I promise the thank you notes to everyone are coming soon…

Peace,
k

Friday, September 16, 2011 3:20 PM CDT

Hi, all…

Been having keyboard issues, so typing is a challenge.

We are trying to shift back into our state of perpetual tightrope walking. We are so relieved, and at the same time just flattened by the ongoing yikes of nf. Starting school reminds me yet again just how much this world is with us. G was hardly out of Dr. B’s office before her anxiety was through the roof about school. Rosie has been unable to go to sleep on her own for weeks. My teen continues…sigh

This world is too much with us. I don’t even know what questions to ask anymore.

Throw in 9/11, and I have been flatter than normal.

I am glad we survived this first fullweek back at school. The first week is soooooo long, like there is a giant stretch of the time /space continuum. Adding a second full class to my schedule has proven a challenging adjustment, especially in light of losing August to stress. I am finding out all the things I missed or just forgot I did..

In 2hours we leave for Philly , for the half marathon. I have kind of resigned myself to pain. I did 10.5 miles on Sunday and mauled my knees…but I know now I can likely get through 13.1 without actual death..

For my girls, I would run 100 miles. Or more likely , walk and mutter under my breath for 100miles.

This keyboard is like typing with oatmeal, and I am not ready for Philly…so I better go. Thank you to all who have supported us so far …thanks to G’s RU LAX big sisters who have been texting her…all…our fb friends…to the bball families who have been helping us out…we so appreciate you. So very much….
I hope to reach $1300 by Sunday…$100 per mile. If anyone can donate even a dollar, we are so grateful.
www.active.com/donate/nfphillyrnr2011/KCamiolo

peace out, and please pray I survive!! ; )

Wednesday, August 31, 2011 7:59 AM CDT

quick word:
stable.
no chemo now.
I am road kill, but so relieved. This roller coaster is killing me, but we are so grateful and relieved.

Longest day ever (left home at 5:17 a.m, home at 8:20 pm), clinic was insane, drive home was awful, but G is stable. The @^#&(@umors stopped again. They did not shrink, they did not do ANYTHING...and you only treat low grade tumors if they are causing symptoms or growing (since chemo is mostly intended to stop them...G had gallons of chemo and it never shrank ANYTHING). So the good news of STABLE...which is awesome beyond all...is still in the context of holy @^#@That's a pile of tumor in my kid's head.

But tonight, I will sleep and hopefully not dream of oncology, and G will hopefully sleep (she is a train wreck right now, who can blame her?)...we live to fight another day.

I asked our doc how many bullets can we dodge? A lot, she said. So we keep dodging...

thank you all. thank you God, and thank you all for pulling for us. This round has been hard, it's so hard. It means so much to G to know you are in her corner...

and to me, too...
peace,
k
***********************************

7 years ago today my biggest concern was How Was I EVER going to keep Genna un-fed for hours until the MRI her eye doctor had ordered. We promised her McDonald’s after the scan, got her into a cute dress, and Dave & I drove to Madison or Chatham to some little building that happened to have an MRI suite. We knew something was likely up. I remembered the brochure Dave handed me when we were dating, the night he first told me about NF (thinking now about how hard that must have been for him fills me with even more admiration for his courage)…about the tumors that could happen in children’s eyes. We thought maybe something was there, but…

She fought the sedation, even then. Dave went to find coffee, and I tried to mentally drown out the daytime tv in the waiting room.

Again, when I think now of what those poor techs must have thought, seeing that little 6 year old full of attitude and with a head full of curls…and then seeing the massive hydrocephalus, the tumor so large…I feel so bad for them. I almost have to send them a card or something and say “hey, we’re still fighting!”. It must have been one of those days for them where they wonder why the heck they chose that job.

After she woke up, we took her for her promised Happy Meal and then we went home…Dave went back to work, and I got G settled…and back to Andrew, who was 9 (my Rosie’s age), and Rosie, my baby, only 2.

Within an hour the eye doctor called, told me I needed to call my pediatrician. In Exhibit 1A of BT Naivete, I thanked the doc for calling so quickly, I was happily surprised to be finding something out so fast. (note to self, only bad news gets THAT speedy a phone call). She mentioned lesion, maybe a mass, but (Exhibit 1B) I didn’t know yet that those are all just euphemisms for BRAIN TUMOR IN YOUR LITTLE GIRL’S HEAD!!!!!! Sigh.

I called Dave to say something was up, but I just had to call the peds, and then I phoned the pediatrician, and they put me right through, I couldn’t believe it!

When Doctor Moskowitz got on the phone, my world fell apart.

It was a full 5 minutes or so of utter disbelief before I could squeak out, “is this life threatening???” (the dang brochure NEVER said optic glioma was life threatening, it was benign, right?). “Yes,” he answered…

It’s hard to remember all the rest of that day….the calls to the neurosurgeon in NYC who didn’t take our insurance, trying to explain to his receptionist that we couldn’t just drop by the ER at Columbia Presbyterian and pretend G had a headache (she never did. She never had a headache, she never threw up, nothing. Not one of the traditional symptoms of hydrocephalus). G was ridiculously honest, and a diva, she would have yelled “I don’t have a headache. Mom, why are you saying have a headache” at increasing volume until someone listened. So that was out.

To the neurosurgeon's credit, he called us at 10 pm that night to make sure we were ok and had a plan, it wasn't his fault he didn't accept our insurance, and we never held that against him. He was very nice.

Our friend Jen brought us dinner, she had offered to when she knew we were scanning. Jen and George were some of the few friends who knew G had NF, we had never really told anyone because I didn’t want people to judge G without knowing. I remember Jen standing in my back door, holding a chicken divan (which was delicious), and me whispering above my kids’ heads, “please pray”…. And she looked stricken in the doorway….

Phone call after phone call, me begging the nurse at my pediatrician to just tell us what to do…please just tell us what to do…finally they arranged for us to go to Philadelphia the next day, much further than NYC but one of the docs in our pediatric practice had done some training there and had connections (ironically I think it’s the doc I really can’t go to at all now because…urp. ). That night, in the middle of the night, Dave & I both just completely fell apart with fear and despair.

The next morning we packed our bags for who knows how long, gave a quick yikes to the contractor who was coming to make our garage into a playroom/office (where I am typing this now), kissed Andrew and my baby Rosie goodbye, and loaded G off into our van to go to Philly for the first time. I had my written out instructions explaining the neurosurgeon’s name, what floor of the Wood Center, where to park. …

7 years.

Everything is different now. That one day changed our lives forever. I’m not going to lie, reliving this brings a lot of pain, a lot of emotion. I know I am supposed to run today, but I kind of just want to lie in a heap. Genna is still with us, and we are so lucky. We are so blessed. Those first several months, people carried us, literally kept my family fed and cared for while I walked around like someone who had just witnessed a nuclear holocaust. We will always be grateful to those people.

I think having this anniversary less than a week before a scan is making things harder this year. I think passing my own Milestone Birthday of Ancientness also exacerbates the emotion, just to think of nearly a decade of my life getting sucked up by the beast…it hurts. Most of our closest family and friends have moved far away now, and we are still here…missing them, unable to fill the voids they left. My baby girl Rosie doesn’t remember before…even Andrew has told me he can’t remember much before he was 9…without realizing what happened when he was 9 that blocked out all those years that we were just a normal vaguely dysfunctional but pretty average family. For my other children, this day marked an end and a beginning, a complete shift in our family dynamic.

But we have G with us, and we are so grateful.

She is afraid of what next week will bring, really afraid. She expressed fears last night that I didn’t realize had ever occurred to her (not going to type it, you can figure out what she was scared of)…she knows now. At 6, she just knew that people were making her be hungry, and poking her (before her shunt surgery and before her port surgery I think it took 3 people holding her down to get the iv in…3 guys, she was so strong, and SO PISSED, her screaming ow ow ow ooooooow filled the halls of CHOP)…she didn’t understand the big picture scary, and now she does.

But she had an awesome time at camp, she and Rosie were circus stars…she has been calling and texting friends from there, and from Camp Sunshine. We celebrated her 5 years off chemo, we are going to have a good weekend of fun with family (my brother will be in town, we may go to an RU football game). We survived Hurricane Irene unscathed while everywhere around us is flooded or without power or covered in fallen trees. We are blessed, and I am grateful.

But today, for our family, is a kind of ground zero, the day that the world came apart, the day “the ceremony of innocence was drowned”.

Thank you to all the wonderful people we never would have known without this diagnosis. We are on a far different path than I thought we’d be on…the last few years have been very isolating as we try to navigate life OFF treatment, but we have folks around the world now who have loved us and let us know that we aren’t freaks of yikes, even if sometimes we do feel marked and deflated by all that’s transpired over the years. We are so grateful for all of you.

Now G is hollering that she can’t find her phone charger, and instead of running I am still here in pjs (um, yikes?), so I better go start this day. School starts next week and my classroom is not ready yet.
In less than 3 weeks I will be running a half marathon with Dave & the NF Endurance team. 7 years ago I would have laughed at you if you told me I’d be RUNNING. I didn’t even exercise! For a cure, for my G…I have to. I just have to.

I think the link is in my last entry, if anyone can spare even a cup of coffee (like $2), that would be super awesome.
And please pray for my G, we scan on Tuesday.

Love and peace,
Kristin

Friday, August 19, 2011 12:29 AM CDT

SUNDAY AUGUST 21:
WE JUST HEARD THAT MY BROTHER COMPLETED THE LEADVILLE TRAIL 100 MILE ULTRAMARATHON IN 28:31:56. We are so proud, so grateful, and so stoked for the Yetifunk crew (John, wife Wendy, Dan & Shauna --USMC friend & wife, and buddy/wedding officiant Anna)...

> WE WILL FIND A CURE FOR NF!

(and happy birthday, Emily!)

Hi, all.

I’m not exactly sure why I haven’t posted, except maybe because we have reached Epic Craziness here, even by my standards of panicked to-do lists.

Last week Rosie was at church camp and G was home with me. I think Genna was unsettled being here alone (Andrew was in Florida for a few days). She had a rough time a couple of nights, really scared about having to restart chemo in September. I want to pray that she doesn’t have to, but I’m not sure I have it in me. Does that make sense? I’m so wrung dry I don’t even have words for that prayer…even as I kind of desperately hope for the best, I’m resigned to what may be.

When Genna looked at me with tears in her eyes and said, “Maybe it’s God’s will” I just disintegrated. No kid should have to have that thought.

At least G is willing to talk about things, I am glad of that. I can talk through things with her, assuage some of her concerns (yes, her legs will still work; no, the port won’t hurt her heart; yes, Dr. B said we may not have to start, we just don’t know). Genna wanted to scan the next day (last week) just to get it over with.

THIS IS WHAT KEEPS ME GOING IN MY STUPID TRAINING for the ½ Marathon.

Which, incidentally, is on hold for a couple of days, I really hurt myself the other day (just stupid overuse, I think), I have to get real sneakers before I attempt the road again.
My brother runs 100 MILES tomorrow, starting at 4 a.m., in the mountains of Colorado…

http://www.active.com/donate/nfeventnotlisted2011/jappert11 is his fundraising link. Every penny helps. Really.

In my continuing mayhem I am trying to simultaneously paint rooms while our floors got redone (all my earthly possessions are in my mom’s dining room…yikes! Except the Girl Scout cookies, dang I wish I had moved them into the dining room!)…and Andrew is at baseball camp at Rutgers this week…and I’m trying to get anything ready for school (I keep having panics about Reconstruction)…and I am trying to not be psychotic. It makes for exciting times here.

In prepping for the floors to get done I found the journal CHOP gave us in the first week of diagnosis…I didn’t write terribly often, but I did bring it to the hospital with me. Re-reading it was like watching a scary movie you’ve seen before…”don’t go in there!”…alas…the hopeful entries before scans, the despairing ones after (the first 2 years were brutal for G)…yikes.

Yes, my timing for this sort of thing is impeccable.

So I did open the 2lb bag of kettle chips, I just couldn’t help it. So delicious! I did my Shopping of Great Fear this week at Costco, I stocked up on lots of things that the kids can take to school if I’m not able to facilitate lunches, etc. I got ingredients for easy meals, etc. I did this last year too…kept us fed for months! ; ) I don’t know why, I must have lived through the Great Depression in an earlier life ; ) , but I know when G did chemo the first time I could hardly see straight, and I want to make sure I can feed my family this time more effectively than last time.
The girls are happily off at Ronald McDonald Camp this week. Camp hasn’t posted nearly as many pictures this year, which is making me insane, but I have seen each girl smiling at least one time, so that has kept me going. We pick the girls up early tomorrow…and then begin laundry again, and back to school prep…and finishing up their room (it’s painted, new curtains & little rug, but no pictures are hung yet. I hate nailing into freshly painted walls. ; ) ).

I have to keep moving, but I realized I’ve gone a year and a day without saying anything here. We are hanging in. We are super busy. I feel like I have to get things ready just in case…

I tried to get together with some nice ladies this week, they wanted to know how things were…and I totally fell apart, which I really haven’t done. Mor-ti-fy-ing. This is why I hide. I either crack or explode (not telling THAT story here…eek. ). But I keep on moving…

For my G, I have to have things zen-like here. Seeing her afraid…having her WANT TO GO FOR A WALK so we can talk (um, yikes?)…makes me crazy. No 13 year old should have these fears. But mine does, so I have to find MY footing so I can hold her up.

We did find a new cupcake place nearby, if G has to start chemo we will be going to this place after every hospital visit. That is my game plan in progress.

Now I have to go eat chips, er, move laundry and tidy a few more things before I go off to get Andrew. Thank you all for your support & prayers, I truly appreciate them all.

And a special 2 fold whatever…Congrats to assistant “Coach Kelly” Nangle from RU who got a head coaching job in Connecticut…Kelly, we will miss you a lot, we so appreciate your friendship to G over the last 3 years, and we wish you the very, very best in this new opportunity! And welcome to the 2 new assistant coaches, Coach Lisa & Coach Anne…we look forward to meeting you…Genna is the VERY LOUD kid in the bleachers generally wearing animal print and RU gear. ; )
Peace,
Kristin

Ps in one jolly whatnot, Genna got a cellphone…yes, with a fuschia leopard print case…now she can text her bt buddies from Camp Sunshine…and our family…and anyone. RU big sisters, if any of you want her cell # just e-mail me at our VERIZON address (which I think Coach Laura has). Peace out…

Monday, August 1, 2011 1:04 PM CDT

Hey again.

So…here we go again.

I should be researching, I should be reading up on things, I have not started that yet. I feel the inexorable passage of time acutely, but I am finding it hard to get ahead.

For those who have asked, Genna is doing ok right now. She really hasn’t said ANYTHING about the scan. I mentioned at Costco the other day that we were going to stock up on snacks and such (pretzels, granola bars, the staple foods of our house) before September, and she put her hands to her head…I hastened to remind her that we did this last year, too, and just ended up with months’ worth of peanut butter.

We can always hope, right? It’s just that last year’s Yikes was NOT introduced by a neurosurgeon in a playroom. Mega Eek.

G did ask me, oh so quietly last night, if she had to start chemo again would she get another port. The 4 Stick Yikes of last week’s scan has been bothering her.

So she IS thinking about it, and I expect I’ll be fielding more questions with uncertainties and crappy answers over the next 5 and a half weeks.

She had an odd moment the other day, her eyes felt blurry…but she passed the maternal shunt check, and after a little rest felt better. Ugh.

Personally, I kind of don’t know what to do with myself. So…did I call a therapist finally? Did I go and spend time at church? Did I find a quiet spot to think and regroup?

Um, not exactly.

I signed up for a half marathon.

I know. Insanity. But if I am going to go insane about what NF is doing to my kid, I am going to try and fundraise for a cure while dashing off to the loony bin.

True, I’ve never gone further than 4.5 miles. I am still wearing the same Kohls trail runners I’ve used as everything sneakers for the last 3 years. My knee hurts. I have said loudly and often how much I despise running.

Guess what I hate more?

So anyway, on September 18 Dave and I will be running the Philadelphia Rock N’ Roll Half Marathon. So far we have two wonderful awesome people joining us. If you want to have a front row seat for me stomping the wahoozies right out of NF, there’s still time to sign up!! We are the G-foRce! , of course.

My page is www.active.com/donate/nfphillyrnr2011/KCamiolo

Dave’s is www.active.com/donate/nfphillyrnr2011/DavidCamiolo

I feel bad, I don’t want to steal Dave’s running thunder by my patheticness. And believe me, my running IS kind of pathetic. But I have been pretty faithfully running 3-4 days a week for the last month. ..I ran 4.4 miles today, and I hope to keep adding distance once a week for the next 7 weeks before the race. Dave has nearly recovered from his Lake George injury, he has been cross training HARD and going to physical therapy faithfully. He IS the Energizer Bunny when it comes to this …and he likes wearing pink, even though I call him the Easter Bunny when he does. ; )

I told Rosie I was going to run, and that I was scared, so she would have to cheer really loudly for me—but what was the worst thing that could happen?

“Well,” she said, “you could collapse. Or there could be a tiny rock on the ground and you don’t see it and you fall down and don’t finish the race.”

Ahem.

12 days before the race we will find out what G’s next step is (September 6 is scan day; we were still in the car when the schedulers called, sigh). 10 days before the race Genna will start school (and I will start back at work). I just don’t know how many bullets we can dodge, you know?

Sigh.

I did update my blog last week, I think the link is below. Just a thought.

And my apologies to anyone I’m avoiding. I am still in curse like a sailor mode, I haven’t really had a chance to have wailing unto the heavens mode, but either mode tends to be off putting to well meaning people. We appreciate your support, I just can’t really chat yet.

Now I have to go see if Rosie woke up, she was supposed to be cleaning up her room so we can start painting it purple. She fell asleep amidst her tchotchke… and G is struggling through her summer reading, just struggling miserably.

But Camp is coming, and Aunt Em is coming home tonight, and Andrew is off to visit Uncle Rich in Florida on Thursday, and Genna got some gift cards at her birthday party…there are smiles amidst the yikes.

Life goes on.
Peace,
K

Sunday, July 24, 2011 9:40 AM CDT

TUESDAY, JULY 26
just a short note...
Rosie's scan was rock solid stable. They did an extra series of ear pictures, her bones & nerves are intact. She didn't need contrast, (ergo no iv), the scan was shorter, she was triumphant and happy.

G's scan...not stable. The nurses took 4 sticks to get her iv...she needed extra meds to fall asleep, then was nearly inconsolable when she woke up (a side effect of the meds). Thanks to Joan Kerpan and Kyle's Peace G did recover from that with a new tie-dye shirt, a blanket, and coloring pages. But in the middle of her activity the neurosurgeon came into the playroom...

and time stood still.

My insides just curled up like the feet of the Wicked Witch of the East after the house fell on her.

He asked us some questions about how G has been feeling, palpated her shunt (which was worknig ok), said her ventricles were a little funky (my word)...and left.

Well, it doesn't take a brain surgeon to figure out WHY the ventricles might look compromised....

In some ways it was better, I had near cardiac arrest THEN, so when Dr. B cheerfully talked to the girls without the normal "stable!" at the start, I was prepared.

G has another area of growth, again in her hypothalamus, this time across from the area that scared the crap out of us last summer. So we have a blob on one side and Halley's comet on the other (that's last year's yikes, so 2010).

Sigh.

We rescan in 6 weeks. Then, if it's still bad...

Good thing we learned so much at Camp. We might need that info sooner rather than later.

I am going to go collapse (or, more likely, wander the house in a kind of wired dismay, I was too calm at CHOP) , and I will likely hide a few days...thank you for praying for us, and please pray for my G. She's ok right now, but I don't know how she'll feel once she thinks about this with a clear head tomorrow.

thank you, and peace,
k

********************************

Today my Genna is 13.

I should almost just not write one more word. Not one more. Because really, of all the miracles we prayed for, THIS is the one we got…time, beautiful time.

We were not promised this day.

She is beamingly delighted today, this girl LOVES her birthday (her brother had his 16th birthday up at Camp Sunshine, as you may have noted by the aura of sweetness coming from our part of the globe. Ahem. Andrew took more of a quiet approach, the wonderful kitchen people at Camp had to tippy toe through the entire cafeteria with a cake so Andrew wouldn’t bolt, shushing people who wanted to start singing too early! ; ) ). Genna is thrilled to be the star of the day, and honestly, I can’t really argue with that, although I did try to put the cabosh on getting $20 worth of fresh mozzarella in different shapes at the store. I failed. ; )

Later we have a pizza party and then a wonderful treat for the girls, almost too long a story to tell now…but they are going to see Taylor Swift tonight in Newark, in the owner’s box! EGADS! Rosie nearly gasped up a lung when she heard (she is a HUGE Taylor Swift fan), G was worried about her birthday party, but when assured There Would Still Be Pizza, she was happy again. Thank you to Debbie and the Jack’s Kids foundation for thinking of us when an extra few tickets became available.

This last week we were at Camp Sunshine for the first ever Low Grade brain tumor session. I felt like this time was easier on a lot of fronts (I am just so shy), and seeing Camp in the summer was amazing. Genna did ultimately decide to join the teen group, and (drum roll, please), ACTUALLY MADE FRIENDS. I had hoped so much in February she would connect with Lexie and Hailey, but G was still in the 9-12 group. This time she MADE REAL FRIENDS. You can drum roll again, if you like. It’s worth it! : )

She also ate WAY too much (the buffet is so delicious) and tried to hug her little buddy Tommy all week. : ) She crafted and puzzled and putzed around happily.

Rosie climbed a rock wall, swam, played mini-golf, camped out in a Yurt (the next morning she told me that next year she needs to bring scissors, rope, and duct tape, which was kind of a troubling list. Ahem. Throw in “map of the vault” and I would really be concerned. ; ) Apparently pranking the boys is an important element in the camp out). Andrew even made friends with a survivor (!) and spoke of wanting to go back AS A VOLUNTEER!

Yes, you are on the right cb page.

I got to meet a dear, dear friend that I have known cyberly for 6 years…to finally get to actually hug Celeste and see her miracle girl just made my year. We also got to spend time with our good friend Aimee from CHOP (and Brianna!) and so many other friends…old and new. As my buddy Alice said, cyber hugs are good for a while, but a real one is so much better (ok, I just butchered that, but it was along those lines).

And apparently in Maine I skew hilarious, not neurotic and mildly depressed. Who knew? Dave isn’t convinced… ; ) It was a little embarrassing to be found so funny, but I guess it beats the alternative. ; )

Really, Camp Sunshine is a place where we are so deeply in our bt world, but also safe from the yikes of it, if that makes sense. There were many other families in places similar to ours (or worse), other NF families (met some WONDERFUL people), it’s just such a safe place. And as I said more than once, oncology humor has kind of a niche audience. At Camp, we can all just be free to be us…acknowledging the role of NF and brain tumors in our lives, but not being painfully defined by that reality.

In a sad note, we learned while at camp that one of the moms from Andrew’s baseball team had passed away. I feel so awful for the family, our hearts go out to Pat and his dad and siblings…rest in peace, Georgette, you were such a great lady. The world really IS too much with us sometimes…

Although out of that moment, we were finally able to tell someone on Andrew’s team about our girls…none of us knew Georgette was sick, and all I could think was, how would these wonderful folks from the team feel if we end up in a horrible awful spot with the girls again (more on that in a second) and we had never told anyone about our reality? We have gotten to know the team families more this year, and really, you can’t find a kinder, bigger hearted group of people. I just imagined how awful everyone would feel if they didn’t know…so I said something.

It was kind of freeing, actually, even as I felt very sad. It’s hard to tell people. I know it hurts to hear our story.

But after this week, the intense highs and lows of things, I am just so grateful…for the people we’ve met along the way, the people whose mission is to support folks suffering through all of this, the people who spontaneously do kind things for our kids. I am just so freaking grateful.

In a related note, (I just have TOO MUCH to say today!), THANK YOU to our great friend Ceril, who ran her first triathlon in the blazing heat yesterday…for NF Endurance and the G-foRce! Team. We are so proud of Ceril’s accomplishment (I could NEVER EVER do that!) and so grateful. Ceril and Francis and their kids have been a part of our Coffeehouse from the beginning, Ceril and I have been friends since preschool, practically. We are just so amazed and hoorayed and loved by this.

AND in one month my brother will be running the Leadville 100 for NFE. If you go to www.yetifunk.com he has a link to his NF fundraising page, as well as a yikes update about his training (a 50 mile training run at altitude is just scary). I hope to create some new Yeti tchotchke…I’ll keep you posted.

Phew! I need to go make pizza dough, and get the table stretched out…and Someone wants to open a present. I am sure I’ll come back with more about Camp later…it’s just so MUCH to try and put into words. I do know now that I need an Orff set up at my house, these xylophone things that seriously are like musical therapy. I need me an Orffestra.

Oh my living Lord, I nearly forgot …(note, the Denial Train has reached its next stop!)…Tuesday is MRI day for both girls. I am a little concerned (as always) about G, but I know that the week or two before a scan she always does stuff to freak me out (inadvertently napping at weird times and such). We are literally first of the day…I think we have to be in Philly at 6:30 a.m. (oh yikes), we meet with Dr. B much later…it will likely be a mind-numbing pile of yikes kind of day. Please pray for us…and I will likely update on facebook before I do here, so if you want to find me there I am K.M. Camiolo.

Peace, and thank you for 7 years of standing with us…
feel free to eat cake in G's honor today. : )

Kristin

Saturday, July 16, 2011 8:48 PM CDT

So I am the worst updater EVER, but this time it's not totally my fault, we had an epic computer crash (ie the Geek on Site literally carried away our computer! never a good sign)...and then went to Lake George.

I need to first send our condolences to the family of Joe Burke. Joe ended his brain tumor battle while we were on vacation...somehow that seems to happen a lot... : ( He was an amazing man, kind to my G (so many people have been so kind to her)...he will be missed.

Ugh.

Normally I type this in word first and then copy, but we are leaving for Camp Sunshine tomorrow at the crack of dawn so I am just blobbing out Something here...I apologize if it's more all over the place than normal.

Lake George was gorgeous, as always. Perfect weather, good friends...I wish I could shake the funk that follows me. Apparently I can't, even at the lake. I take 2 steps ahead and then sliiiiiiide. Just feeling a little more like a rock and an island each day, life keeps going that way. But the Lake WAS beautiful, we had a lovely time.

We also found out while away that a dear NF friend had another awful scan. I just...there aren't words for this. There really are none. The pain of this is just ridiculously unacceptable on every level. Our hearts are with you, A & J.

The girls had art camp this week at G's art teacher's house, they made magnificent creations in a variety of media. Seriously, www.art-as-therapy.com . Lisa does amazing work.

Andrew finally finished slogging away at his mercy chemistry. It was ... challenging. I am so grateful to Sr. Anne (my apologies for forgetting the "e" last time, my sister is Anne so I know that is Not Acceptable!) and to Dr. Kennelly for working with Andrew. I think he did finally have some glimmer of maybe this was an epic act of kindness.

I am so glad it's done, hopefully the project is well received. He did really work hard. I did really use a cattle prod. Urp.

Tomorrow we head off to Camp Sunshine, I am so grateful...nervous, but grateful. I desperately need to know we aren't alone. I am tired right now. Tired of the battle. Granted, some of that might just be Pre-Scan Yikes. Both girls go on the 26th. Sigh times a million.

BUT, in nicer news, G's new med is working MUCH better than the last one. Granted, she's out of school now, so less stressed, but she is much better generally. Phew!

AND, Rosie's tests all came back ok. Still not sure why her stomach hurts, but at least there's no awful festering NF yikes in there. We are still figuring things out. Her ear plug thing we got (the el cheapo Amazon one) seems to be helping her ear, too...ish...

And I have started a training plan for a Big Race. If I can stick to it for a few more weeks I may sign up for something. Today my heel is killing me, that does not bode well...but in the last 2 weeks I have put in about 22 miles, which for me is HUGE. We'll see where this leads...I am just desperate to make a difference, to take some control over NF and what it is doing to my kids.

In related news, but yikes, Dave actually INJURED his leg. He who says (he should know better) "I never get injured" actually tore/strained a muscle while sprinting into the lake after Rosie. He had already put in 37 miles in 6 days (yeah yeah yeah)...and hurt himself doing this silly dad thing. He is seeing a physical therapist and cross training, hopefully he can start cautiously jogging while we're at camp.

I did create a page on Facebook, it's called G-foRce! Cure NF! ...just putting in G-foRce is ill advised (trust me!), so try to find us and join our group! This is where I shamelessly beg, er, keep people updated on current team happenings. For instance, my dear friend Ceril is running her first triathlon next Saturday for NFE! My brother is running a Leadville "rehearsal", a 50 miler, tomorrow in Colorado...

How can we NOT find a cure? I mean REALLY!!?!

Anyway, we ARE still alive, and thankful for those of you who slog through things here.

Rosie just wandered down to tell me she "doesn't feel good", and is now quietly doing a puzzle on the floor behind me. Ahem. ; ) Better go be mom...

OH, and finally...this Wednesday my first baby will be 16. I am kind of hoping for some sweet...ahem. The following Sunday my second baby, the one who at 7 was not promised 9, will turn 13. I thank God for my children, even as they render me no longer naturally brunette. This week we celebrate...

peace,
Kristin

Sunday, June 26, 2011 12:20 AM CDT

And the worst poster of the year award goes to....

Yeah, no surprises. I think once I got past the insanity of our schedule over the last 2 weeks I just had so little to say. I am working on getting that fixed. Ish.

Through the intercession of St. Jude and the generosity of some folks at IHS, Andrew does not have to utterly redo honors chem, but he is working on a research paper to make up for a missed point. I am hoping (and endlessly saying) that he learns the value of Handing in One’s Homework to avoid summer research. Sigh. He is kind of chugging through it (I keep my cattle prod handy) and hopefully will get done before vacation. We are so grateful to his teacher, I know this is a hideous pain. And we’re grateful to Sr. Ann...

We are into week 2 of G’s med switch. Not sure if it’s the switch or the end of school, but she does seem to be a bit more zen like. Fingers crossed...and I am grateful for science that can help my child.

She had a blast at her end of year swim party for art, and did EXCELLENTLY WELL on her report card, all Bs and a few As!!! (note to universe, she is missing one chunk of her brain and the rest is tumor filled. This is freaking insanely awesome). She was bothered about getting a B in science, and she is already worrying about next year (new science teacher, and she is kind of smitten with this year’s teacher—understatement!), but we are so proud of her.

Rosie...sigh. We are chugging through stuff for Rosebud. We saw the ENT at CHOP last Monday, in what proved to be a pretty epically demoralizing day. Rosie’s plexiform is NOT a huge deal right now. I know that, and I am so grateful. I know what it could (and still can eventually) be. But it bothers her. It messes with her hearing...the long & short of the visit was that wax gets stuck in Rosie’s ear (and water, too) and then her ear canal gets inflamed ...all of this occurs because the tumor is mushing the canal. This isn’t exactly a newsflash, but I think I kind of hoped for a “and so we’ll do THIS! “...not just “bring her back in 4 months and I’ll gouge her ear with this metal thing so she’s silently crying by the end” (ok, so that’s not EXACTLY what the doc said, but that was the gist).

I was as assertive as I get...which is a lot more than I used to be...got some clarity...then neurotically e-mailed Dr. B...who pretty much confirmed my dismay. There really ISN’T anything to be done for a plexiform tumor that is mushing an ear canal. Just live with it.
I am not so great at just live with it.

We did order a fancy ear-headband for swimming, if that doesn’t work we’ll have to go for the custom ear plug thing...$130?? I will then take bets on how long until Rosie LOSES said earplug!

The next day Rosie had a dentist appointment (no cavities! Shock and awe!) and Andrew had his last physical therapy appointment (woohoo!) and then I schlepped over to our local hospital so Rosie could see a GI guy for her constant stomach aches.

We got utterly turned around in the halls (the place has CHANGED since I was a candystriper there), but found our way eventually...the doctor was really good, I was impressed. Apparently the last labwork was only a genetic profile...and yes, Rosie has the celiac gene. That doesn’t mean anything, really, but Dr. T ordered a pile more labs & an ultrasound. Poor Rosie was crying before the lady even did the labs...but at least THIS time our lab person was wonderful, she chatted, she soothed, she made Rosie feel a little better (and got her on one stick, which is key). We will do the ultrasound this Tuesday.

Yes, a relaxing summer, indeed!

Last weekend I did have one jolly joy, 3 of my sisters & two dear friends took me to Atlantic City for my birthday of extreme age. We only got to go for one night, but we really had a blast. We shopped, we ate, we played about $3 at the slots (I won $5, which I then played...so silly!), we people watched (EGADS!), we avoided public singing to me (phew!), we stepped on the beach, we watched the fountain show at Caesar’s Pier...really such a good time. I am so grateful to my sisters & sister/friends. I seriously could NOT survive life without you all.

So out of town sisters? When you come back, we need a do-over! : )

The next few weeks we get a bit more into summer, I hope. Andrew has baseball this week, and I hope he can find some work, the job he had lined up seems to have fallen through (alas!), then Saturday we leave for Lake George. I am trying to work up some woohoo, I just feel kind of perpetually deflated. That explains a lot about certain portions of my physique...hm. Anyway, the week AFTER Lake George the girls have art camp in the mornings, and then the following week we are going back to Camp Sunshine!!! I am kind of desperate for Camp, I feel like maybe there, in this first week specifically for low grade brain tumor kids, I can maybe get some insight on how to get through what feels like mile 19 of a marathon.

Since I have so much marathon experience (choke!) the metaphor works, right?

Did I mention that Dave actually signed up for a marathon in November? Eek. My sister Em just ran a ½ Marathon with NF Endurance in Seattle, and in August my brother John is running the Leadville 100 Mile Ultramarathon...I think I may set up a G-foRce! Group on Facebook so people can find us there (even though John is Yetifunk...all Yeti are welcome in the G-foRce!). I have ideas for some fundraisers that are really FUN-raisers with some funds hopefully. And no one has to run. Deeeelightful.

I might have an endurance event called “Sit for a Solution” in which you sit in waiting room chairs for hours at a time, you can get pledges for each hour...I would SO win that one. I am very good at waiting. ; )

We also are planning to repaint the girls’ room, which has taken as much negotiation as the Treaty of Versailles. I think we have settled on a light blue ceiling (with clouds!), 3 purple walls, and one greenish-blue wall. We will get a floofy rug at Target, and new drapes. We spent most of yesterday sorting books....and putting together a shoe organizer for Genna. I have to stop stress buying shoes. Although I did find gold glitter shoes for Rosie for $3 at Target. Come on, I had to get them!

(the day I got them I went up to my room at 11pm...there was Rosie, sound asleep across my bed horizontally, wearing her new sparkly shoes. : ) ).

I feel like it’s slow, but progress is being made!

And I just got 3 new books on teaching historical thinking...yay! Mom therapy! : )

Soooooo...that is what we’ve been up to. Oh, and I scheduled our next scans. July 26. Can I get an UGH from anyone? It took some feats of strength and acrobatic intrepitude, but both girls got the first appointments that day. Yes, that means leaving my house at 4:30 a.m. (sob!), but it took a week of calling and ridiculousness to get the dang things scheduled.

Really...NF Endurance is aptly named, you know? I wish I could buy some endurance in candy bar form. I think it would taste like a Twix.

Ok, this is an epic...peace out, all, and please just pray that we can find some zen here. The stress is killing me.

Peace,
K

ps please please please pray for our friend Joe, who has posted here for Genna and prayed for her for years...Joe is on hospice after a valiant brain tumor battle of his own. Please hold his family in prayer. Joe is an astoundingly great guy...
sigh.

Thursday, June 9, 2011 10:47 AM CDT

Hey, all.
Summer arrived early and with a vengeance here, the temp is supposed to reach 100 today! ACK! The girls have “Spirit Day” at school, so thankfully they could wear shorts & t-shirts instead of uniforms, and Andrew has finals...today his exams are math & science, which are both in air conditioned classrooms. We are trying to get the pool set up FAST!

Our trek to CHOP ended up being an epically long day. I don’t know why I thought it would be shorter, it ended up being another 12 hour marathon. Ugh. But in good news, both girls have exceedingly stable eyeballs. Rosie’s vision is beyond perfect, which never gets old. Genna’s is rock solid stable, correctable to 20/20 in the one eye, 20/125 in the other...no visual fields, and color/contrast is a nightmare, but nothing is worse. So woohoo.

After a wait in eyeball land made us an hour late for onco land, the girls were getting a little berserk, but I knew we were just chatting with Dr. B, so I figured we’d be out soon, and maybe get home in time for all the afternoon activities.

I swear I don’t smoke anything odd. I really thought we’d be out fast.

Dr. B had us talk to a social worker first, which was an exercise in frustration and futility. Our regular long time friend was out, so we talked to a random lady about how to help G, but she pretty much just looked up my insurance on the computer and got a list of possible other people for G to talk to. I am actually pretty savvy about internet searching, and I have already done this particular search 87 bazillion times. I tried to explain why a doc in Mountainside might be impossible in our life. I work in Plainfield. Andrew goes to school in Somerville, almost 30 minutes from Plainfield at 3 in the afternoon. Mountainside is easily 30 minutes in the opposite direction from Plainfield. There is only one of me.

I actually got teary, it was MORTIFYING, my girls were scandalized. I am just closer to the end of my rope than I perhaps thought. I think I appalled the social worker...I found out afterwards that she does not normally work with onco families, it’s hard to explain why finding resources for tumor-driven mental health issues is trickier than just a simple meeting with a therapist a few times.

Sigh.

So for now we are trying once again to switch meds, I am not hopeful. We are also trying to have G meet with her established CBT more frequently, at least for the summer. We have to get on top of things here. Of course the out of network CBT just increased her rates by $20 a visit...but what can you do? I have to at least try to help G not be consumed by anxiety, even if no option really seems to be a solution.

It was a deeply demoralizing day, and my girls were beside themselves with hunger, we waited to get lunches because our visit was imminent...for hours. ACK!

But we have another day to fight, so woohoo.

Friday was cousin Justin’s wedding to Taryn (gorgeous...seriously like a wedding you see on tv, the food was outrageous), we got rear-ended on the way there (Exhibit B in my End of Ropeness, as I jumped out of the car to get to the back seat to check my weeping girls I hysterically screamed “I HAVE TWO CHILDREN WITH BRAIN TUMORS IN THIS CAR! OH MY GOD!” at the poor woman who hit us, which perhaps was uncalled for. I did apologize repeatedly once I realized everyone was ok—not sure why THAT came out, ugh!). But the wedding was lovely, and it started a little late so we made it on time, even with 20 minutes of police and this and that.

Saturday was crazy busy, Sunday was my sister Laura’s high school graduation party. This weekend we have the twins’ party. That is a lot of Costco cake.

Tomorrow is my girls’ last day, Andrew is done early next week. Phew! Dave had a short business trip this week, never my favorite but he’s home now (well, at work RIGHT now, but home big picture!).

In another week or so hopefully our schedule will open up. We have dentist visits, Andrew is still in phys. therapy for his shoulder (we see the orthopedist today), G will get back to her CBT, Rosie sees an ENT at CHOP for the first time in a week and a half, and now she has to see a GI person because she is “borderline suspicious” for celiac. I don’t believe in borderline suspicious, I need Actual Scientific Answers, so we have to see a specialist. Bleh.

I like acronyms, but this is getting a tad ridiculous.

For me, I am reading The Seven Habits of Highly Effective People and being overwhelmed by how absolutely ineffective I am and how much of my ineffectiveness is my own stupid fault. Not sure this is the result this book is supposed to have, but...it is an interesting read. It wouldn’t bother me if I didn’t think the dang thing is correct!

I better run, but thanks for checking in on us...and please pray for our friend Paul, who is recovering from surgery. We hope his surgeons went TOTALLY Chuck Norris on the cancer.

Peace, and stay cool!
k

Wednesday, June 1, 2011 7:25 AM CDT

A brief note...

Marge died on Friday.

I don’t have a lot to say about this, Genna was devastated. She walked in the door from school, where she had heard from another kid, and she just fell apart.

Marge was a good friend, and just an amazing person. She was ALWAYS smiling...even when she was worn down or stressed. Marge was the one person, the ONE person who truly understood the ergh of a stable scan, the Yay? moment that always is. She had those moments too, and she understood.

We spent the weekend working like berserko maniacs on the yard and such, we didn’t have time to even open the mail.

On Sunday we finally tackled the pile of mail, and there was a card for G...

From Marge.

Thanking G for her friendship, asking for her prayers as Marge moved to the next part of her journey.

!

Dave and I were almost rendered horizontal.

THAT is who Marge is.

The wake was brutal, G did ok going through the line, she lingered at the casket, then as we got out of the main room she started to crumble...finally she asked if we could leave, because she felt “in pain”.

The funeral was beautiful, so personal, so beautiful. Fr. Brendan said (my quote of the eon here) “Cancer can not win. It does not conquer us.”

It does not conquer us.

We love you, Marge. We know you are likely quite busy laughing with Nora C and redecorati ng heaven in leopard print, but we know too that you are likely talking God’s ear off about your friends back here.

Peace.....

*********************************************

In another note, we are nearly done with school, hooray. I need to be done, at least for my girls. Andrew...sigh. Gonna be a long summer. But the end is in sight. This week is Laura’s graduation (my youngest sister), and Dave’s cousin’s wedding. We are so busy.

Tomorrow the girls and I are trekking to CHOP. I kind of forgot. We have eyeballs, and then we are stopping in to see Dr. B. G’s med situation needs to get rectified, and I am grateful Dr. B can see us on such short notice. We’ll leave right after 7 a.m. Mass (it’s a holy day for us tomorrow), hopefully 3 hours is enough time to leave...and hopefully we’ll be back in time for G to get to her last regular art class.

I have 2 more times left with my 7th graders, one today and one next Tuesday. Today I’m going to log in my seniors’ grades and tidy my stuff at school. I am also starting a novena for my son to pass his 2 honors classes, the finals for those are next Thursday. Anyone can join in...sigh. Dances by the light of the full moon, rolling of random objects, whatever...yes, I put Marge on it. She taught Andrew when he was little...

I am trying to find a way to shake off the stress (much teen generated) and enjoy the beauty of our yard (although it has been brutally, unseasonably hot and humid), I am trying to not miss the joy of Rosie, who giggles at fireflies and tries to save caterpillars climbing in awkward places. I’m not sure HOW we got into this kind of yikes place, (well, I have some ideas), but I love my kids, and I want us to be happy together.

Please remember our friend, Paul, in your prayers, as he has cancer surgery next week. Paul ran the Jersey Shore relay with us, he spoke at our Coffeehouse this year about NF Endurance...he is so mighty, and I KNOW he is going to go Chuck Norris on his cancer (dude, the guy ran the NY Marathon...he runs triathlons...he is mighty)...but it still sucks.

Ok, off to exercise and then see if I can find a dress for the wedding on Friday. Ergh.

Peace,
k

one tiny last thing: G finally got a haircut, I was so exasperated arguing with her about it (she wanted a haircut like my sister Anne, who has kind of a Parisian ingenue look--fabulous--but on G's curly head, and with her 12 year old physique, would be ridiculous) ...she is so happy about it, she looks super cute, and I will try to post a picture at some point. This at least is one happy thing for G! : )

Wednesday, May 25, 2011 9:47 PM CDT

So howdy and all that.

There is an inherent peril to promising piles of perkiness on my next entry…as evidenced by the chasm between updates. But I do have some woohoo.

Today is my Rosie’s 9th birthday.

Actually,she was born right around now (7 pm…I know by the time I post this it will be much later, but I have one second to start writing now). She was born nearly in our old van…I was so deeply denying that baby #3 was a coming! ¬

Ok, I had to stop right after that sentence to have dinner for 12…but now G & R are finally up to bed (after wangling a way to stay up to see the end of American Idol…G is a happy camper now). Anyway, I love my Rosie so much. In the interest of staying perky…sigh. I love her so much, I love her imagination and her pip-ness and the way she is just generally. She is so sweet…

So happy birthday to Rosie. : )

In other news, I have pretty much waved the white flag at G’s med switch. It just hasn’t worked the way we hoped, and G’s continuing misery needs to be fixed. It just has to be. I am again in contact with her doc, and we are trying to figure out what to do. We have an eyeball CHOP visit next week, maybe I can sneak up to oncology at the same time.

The end of school is in sight. Thank God! My main class is done tomorrow, except for the mountain of final projects I have to grade (who had the great idea to assign a final essay? ; ) ). I hope to be able to regroup a bit over the next week or so, once grades are done. We have Mount Mulchmore in the driveway, and I finally planted things (except for one planter of basil that had a Gigantic Centipede in residence. Ew!). Finally getting some sunshine and being able to work outdoors helps me.

I am officially now a crabby old lady. It happened last week. On the perky side, I had an excuse for cake. That’s about all the perk I’ve got on that. Age happens. I just…can’t talk about it and stay perky.

I lost a lot of years to the reason for this page. So did Rosie. So did everyone in my family. I am just saying it. Now back to your regularly scheduled cheerfulness.

Actually, based on how I normally update, cheerfulness is more like a special presentation preempting regularly scheduled kibbitzing.

Anyhooo, the end of school is In Sight. I hope a lot of things, mostly that we just get through the last few weeks and figure out a way for a happy summer. We have been soooo busy—the girls had their dance recital (they did so great!), my niece made her First Communion, we have lots of graduation parties and a family wedding coming up…

And on June 1 Pauline Books and Media will release a collection of short stories for kids entitled Family Matters. My story, “Triathlon on Tillman Street”, will be in this book. I am sort of excited and sad at the same time, thrilled that this story (written before G was sick, published first in a Pauline periodical in ’06) is actually going to be in a book…and sad that I have not been able to fix that part of my brain to keep writing.

I am trying. I am trying to take steps necessary to help myself so I can help my kids better. That, I suppose is perky, right? Ish, at least?

I do feel a little bit like I am trying to tiptoe through the proverbial tulips and squashing many a bloom in the process. It’s been another tough few weeks, but…it is what it is. I am just trying to keep track of the 57 different appointments scheduled for the next few weeks and then breathe!

In one truly serious note, please pray for Genna’s first grade teacher. Marge is nearing the end of her battle with cancer, which pretty much makes me want to jump out the window. Marge is a goddess. She has sat many a time at my kitchen table, telling funny stories and eating cookies. She is the lady who wore reindeer antlers to onco clinic at Christmastime to make people laugh. She has a full ensemble of animal print clothes that Genna adores…her kindness to G over the years…G started first grade a week after diagnosis. Marge was with us during THAT time. Yeah.

I deeply begrudge cancer on this one. Marge, we love you.

And please, please pray for a friend who has joined us for NFE stuff, a friend who is facing cancer as well.

I swear, I am TRYING. Cake. Cookies. Bunnies. Butterflies. Sunshine. Smiley faces. Perky perkfest of perkiness. Sigh.

May is brain tumor awareness month AND NF awareness month. We are aware, that is true. On the awareness front, if you want to see what my brother is up to for a cure check out www.yetifunk.com . His TRAINING stuff makes even monster races look like the bunny hop. My sister Emily is also running for a cure in Seattle I think soon? I have to get the link for Em’s page.

This kind of mighty effort is Uber Perky, big picture (but likely a lot of ow, gasp, and ergh in the process).

One step at a time…just keep putting one foot in front of the other (and soon we’ll be walking out the door!)…or, as David Bailey said, “keep on keeping on”.

That’s really all we can do, while hoping for cake along the way.

Here’s a perky finale: G just found this joke in her Clubhouse, Jr. magazine, and she falls apart giggling every time she says it . “My mate opened a deli in Jerusalem. He called it Cheeses of Nazareth.” Heehee.

Peace out,
Kristin

Monday, May 9, 2011 11:17 AM CDT

Hi, all.
Again, a long lapse...alas. I am trying hard to NOT write when things feel super heavy here. I have been told I am not doing a great job at hiding my crazy. ; ) Unfortunately, if I don’t write when things feel heavy, um...

Again, a long lapse.

May is both brain tumor AND NF awareness months. I am kind of glad to have both at the same time. For us, these ARE colliding worlds, and I am glad to spread awareness of both. I am sporting Wall of Courage t-shirts most days, (www.wallofcourage.com ) and I have a pin of G and a pin of Rosie on my purse. Survivor pins.

In the words of Inigo Montoya, I will try to “sum up”. Spring has Finally truly come to NJ, the trees are leafing and the grass is green and growing. Actually it’s been scary growing, we had so much rain Andrew couldn’t mow for a long time, our grass in the backyard was beginning to look like the Great Plains. I almost expected a buffalo to wander through. The weather has gotten gorgeous, and I am so glad...even if the weeds in my gardens are totally overwhelming me at this point! I will prevail. Maybe.

EW! I JUST FLICKED A TIC OFF ME...oh, snap...yea, it’s spring in Jersey.

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.

Rosie hasn’t been quite well the last week, I was worrying about head issues for her because she was having terrible headaches, but then she got a fever, so I think it was just a bug. I am keeping an eye out for any signs of Lyme disease, we are in tic central here and G has had Lyme 2x. Rosie plays outside a LOT more than G does, so...I am trying to be vigilant.

I had several days with almost no voice (seriously, I sounded like Velma Simpson). This made for some entertaining times in class (and one crazy moment at a drive through...eek!). I am feeling better now.

In one jolly piece of news, we did finally get rid of our Minivan of Increasingly Debatable Safety and get a new Toyota Sienna. I have NEVER had a new car in my life ever. We’ve gotten new cars for Dave a few times, which of course I drive, but those are his work cars, so he is the primary user (and buying a new sedan is cheaper than a new minivan). I had done a fair amount of research, and we knew the end of the month was a good time for a deal...and Dave had planned dollars to be able to do this if we could keep the old van running long enough. I am a bit Big New Thing Guilty feeling and a bit Whoa this is Super Nice! Happy feeling. We are very blessed to be able to do this right now. I hope we can get 10 years out of this van, we got 9 years out of the old one, and that was used when we got it.

9 years. We got that minivan just before I had Rosie, we had no car big enough for 2 car seats & a booster. My baby is going to be 9 in just a few weeks. Sigh.

I am sorry that I am not a pile of perky. I am so sorry. I wish that things were different here, and I do see it as a personal failure that I can’t be happy when we are in mostly stable land. I think I am just realizing that the layers of things in our life that are not what we hoped are starting to make a kind of heavy blanket of yikes. I just had to erase the next few lines (since this is NOT Oprah!), but these layers of yikes are also making my kids sad...and as a parent who couldn’t keep the kids healthy, seeing them sad and stressed is crushing. I need to find a way to reclaim those little things that used to make us happy in the small moments, and let go of the things, the innumerable things, people, and situations beyond my control.

Honestly, we do still have moments where Uncle Mark F. begins some ridiculous conversation with Genna that has her gaspingly giggly as she tries to convince him that SHE is Genna Camiolo, not Hungry (or other such silly arguments that have G totally laughing). There are moments...Rosie spent nearly 2 hours yesterday using scraps of paper and recycled stuff to make me an “artist”, a little paper tube guy with a beret (made out of the foam earpiece from a headphone) and a stack of paintings of rainbows and smiles (even as my teen didn’t want to be home at all yesterday). Dave brought me some interesting chocolates, always a delight. We had our school rummage sale, which is always a fun time (albeit a lot of work). Not everything is miserable. There is just a heavy weight that presses in around these moments...

But I guess that’s kind of what life is. We used to have a lot more friends/family around, but life is what it is and people move away, move on...and I have to not take it personally. We sort of lost our footing the last few years dealing with ...everything...and now we are just an awful lot more alone, kind of stuck in limbo. I think that too is why things seem heavy sometimes.

BUT, we do have each other, even if that’s a challenge right now (!), it is a blessing, and I am grateful. There are no guarantees.

I apologize for anyone who now needs Prozac (or a turnip, depending on how you roll) after reading this. I promise NEXT TIME I will be the perkiest poster EVER, I will start planning pithy things to say now. Seriously, though, we do appreciate any prayers for my G. I want to help her be strong, and I need to find better ways to do that.

Peace,
K

Ps. Please keep praying for our friend, Caitlin, who had surgery last week and all sorts of odd ugh afterwards...and please remember my writing friend, Maurice, who passed away on Friday. Maurice’s memoir, Reflections on My War, is a great book, and he was a good man who never failed to ask for my G...rest in peace, Maurice...

Wednesday, April 27, 2011 8:46 AM CDT

Yes, I am losing the battle of “keep writing, keep writing” , which is like treading water. Things have just been stressful here, and … I don’t know exactly how to put everything ELSE in words.

BUT: The G-foRce! Rocked the Jersey Shore relay! Dave and I and our neighbors Suzanne & Paul drove to Seaside Heights on the 16th to run with NF Endurance. Rosie came with us (as did 3 of Paul & Suzanne’s kids); G had a school activity she didn’t want to miss. We got to the boardwalk…and it was FREEZING. Bitterly, arctic level cold. The wind off the ocean was numbing. Somehow in my prep for the race and the “mid 50s” forecast I saw I missed the “mid 40s and 40 mph winds”.

Dave had more cold weather gear (he is so hard core about running, he is always prepared). I was VERY grateful for my NFE headband, it kept my crazed hair out of my face AND kept my ears warm.

It was THAT cold. Paul actually stopped at a convenience store and bought gardening gloves for himself and for me. Best Purchase EVER. Those gloves saved me on my piece of the run!

The only issue was the traffic. Suzanne passed us 2x on foot while we were in traffic. EEK! Not sure what was different this year, but the traffic was a struggle.

To my delight, the transition point for my leg of the run had been moved a bit down the boardwalk, so I only had to run 4.2 miles! Woohoo! I know it’s so silly, but losing that .3 I thought I had to run was very delightful to my precarious mental preparation. I also found the run MUCH easier this year because I knew the course better, there were more marshals out, and a lot more runners. I passed 2 NFE runners (and got to cheer for them) and got passed by 2 NFE runners (cheered for them, too!)…I had set my lovely running watch WRONG (not sure what happened, it was right in training), so my intervals were a bit iffy. I also find imminent hypothermia and traffic make me run longer than I normally would!

I avoided the water stop this year in an effort to avoid The Moment of Impending Hurliage I had last year. Good move! The only real challenge was at the 3.4 mile mark, where I hit the boardwalk again. The wind …oh, that wind. Right in my face, blowing sand across the path. I had at least one moment of pondering “if I lay down right here on the sidewalk, what exactly would happen?”… and then I did what I do. I thought of the names. Our friends. Sandra.

We can’t lie down in the face of NF.

So I chugged slowly forward and got to Dave …and to my shock, I was a lot faster than in training. Paul wasn’t ready for me (he was timing us). Our best estimate based on our collective times (and way too much discussion about splits and blah that I didn’t much care about)…I did my 4.2 in less than 40 minutes! Seems like I was at just under 9:30 per mile, which for me is ridiculously fast.

It was REALLY cold. Apparently that helps my speed. : )

Getting to hang out with the team afterwards was awesome, we love our NFE people. I have more to say about that, but those words will have to wait for another week or two. Steve Kendra & crew have worked so hard to make NF Endurance what it is: a place EVERYONE can be a part of a cure. A place that NF warriors and their loved ones can actually DO something tangible to fight NF, even if it’s a small thing. Even small things can reap huge rewards, be that the dollar that funds the moment of research that finds the cure, or the hug at the end of a race that fosters hope where despair has held sway.

Ok, so I had to say a few words. We are grateful.

Our team time for the marathon was 3 hours 23 minutes. Yes, we are awesome. Yes, that means Suzanne’s “taper run” for her marathon next week was still a blistering 7-7:30 mile page. Dave ran in the near 7 range. Paul has a bad knee (since he ran the NY Marathon…yeah, I was in serious runner company here), I think his pace was near 8, he was supposed to not run super hard. We are most of all grateful to the Quenses for running with us. We have really only gotten to know them in the last few years (their daughter is in G’s class…and is so nice to G, it almost moves me to tears to see how nice she is to her), and for them to take all this time and do this with us means more than we can say.

The week then hurtled forward…my seniors are Extremely Done with school (but I am not! Uh-oh!), my son is struggling to get out of a hole of his own making (sigh times a million. This is why I am silent here), I had an unfortunate run-in with a pediatrician I should just not ever speak to ever, we’ve had baseball and softball and all the ships at sea. Then…Miles 4 MJ!

Friends we met through the Philly ½ Marathon in September ran a 5K in their town this past Saturday. We decided to go (it’s really important, we’ve found, to stand together at these kinds of things, whenever we can)…but it was about 45 degrees and pouring rain. We were so impressed with a) how organized Kris & family were b)the fantastic turnout for such a miserable day c) the joy of running for a cure d) that G got through it! I only had to say about 6 times “there is no crying at a 5K!”. Ack!

In a truly ridiculous turn, Genna won third place for her age group. I guess there were NOT a lot of 11-13 year old girls there? Heehee. Even G was hysterical, she KNEW at 48 minutes we were not exactly tearing up the course. Rosie ran with Andrew, Dave actually RAN. He came in second for his age group behind Morry the Super Fast. : ) It was a great day, and we can’t wait to see the course in the sun next year. ; )

Then home, frantic prep, and EASTER!

The Easter vigil was so beautiful this year. Rosie was so happy when the choir unleashed the Pile o’ Alleluias! We missed our Alleluias. ; ) And nobody set their hair on fire, always a good thing.

Easter morning Peg and Rita and Jonathan came for brunch, which was a new moment for us (and a very nice one). My father in law is in NC with Dave’s brother & his wife (and their new baby!) being helpful with the baby, so we got to host the rest of the family here in NJ. Stuffed French toast and a basil cheese tart…mmmm. And Peg brought a fantasmical fruit platter, it was so gorgeous I took pictures. Really.

In the afternoon we went to Donna’s, and had a great time with family. The funniest moment: when we tried to leave, baby Isabella (18months) did NOT want Rosie to go. She would march out of her playroom, yell “NO!”, grab Rosie’s dress and drag her back to the playroom. We watched this about 5 times before we made Rosie go, but it was so funny.

Sunday was also Dave’s birthday…but we will have cake tomorrow!

Monday: G and I went to CHOP. Oh Joy.

Actually, it was great to see Dr. B NOT on a scan day. I was glad that G could have a good solid neurological exam when she hasn’t been sedated. I was super glad to be able to talk things over with Dr. B about our ongoing med shift. We are continuing to fiddle with things…hopefully we can find the right levels to help G be able to enjoy life. (even as I type this she is having a moment here. Ugh)

Then we marched down for eyeballs…and they had us coming TODAY, not Monday.

Um, I do enjoy driving nearly 2 hours in traffic to get to CHOP. But, no I definitely planned visits for the SAME DAY. And Dr. Liu is NEVER at CHOP on Wednesdays. Never. Ever.

After some drama, tears from G, and general angst, we did manage to reschedule things. But ugh.

Last night we went to a Yankees game, (so fun…except Rosie lost her cutest jacket, alas), today is busy, tomorrow is “Kids to Work” day for the girls at DRS, Friday I have a meeting to try and fix some unfixables, the weekend is supposed to be our Soup Kitchen day…I have to do some major schoolwork over break, not sure WHEN that is going to happen. I am reading a fabulous book called A Passion for the Past about creative methods of history teaching. I am inspired.

Ok, this is an epic. I really can’t go so long between updating! If anyone made it this far, thanks. This particular stretch of road has been challenging for us more for life stuff other than Genna & Rosie’s reality. I just don’t go into those details here, and that’s ok. Still, living with NF is ugh. Yesterday Rosie referred to her “bad ear”. G acted weird on Monday morning, all I could think was shunt malfunction! (she was fine). It never ends. It just never ends. I just have to find a way to refill the ol’ emotional tanks and keep chugging along.

So peace, all, and I hope you are getting some spring where you are!

Peace,
Kristin
Ps. We did just find out we got into Camp Sunshine! Woohoo! Hopefully Dave can actually come…
PPS please pray for our CHOP friend Caitlin next Tuesday as she has surgery to Get Rid of Some Stinking Brain Tumor.

Friday, April 15, 2011 8:02 AM CDT

I am sorry. When my brain gets too full, I just don’t know what to write. We are just beyond insanely busy, and I don’t feel so hot today…but I knew I needed to update because

TOMORROW IS THE JERSEY SHORE RELAY MARATHON!!

(cue screaming and running in circles…wait, that’s my normal training regimen. ; ) ).

Also cue shameless plug of website : http://www.active.com/donate/nfjsr2011/G-foRce

No donation is too small. Seriously. A dollar is a blessing. Thank you all. . .

I did actually manage to train a lot last week, my normal morning class was away and I only had to go to work in the afternoons. In the course of a week I actually ran a half marathon! Ok, over 3 runs. And several days. And I smelled HORRIBLE. Ugh. I think in the same time Dave ran about to Topeka and back, but. . . for me it was a big deal. I was proud of me, even as I truly despised most every second of the actual running.

This morning I heard Genna reading her story for Mrs. K’s class to Rosie. She is writing a story about a little girl who got a brain tumor and had to go to the hospital.

How about a story about unicorns?

Really, the intriguing part is hearing how she is creating this story. Her character, Grace, had terrible headaches , which Genna has NEVER had. The kindly pediatrician mysteriously has the same name as Genna’s science teacher (shhh! ; )ahem ). There is a candy store involved…

But really, I would prefer hearing a Fluffy Bunny Goes to the Park kind of story.

Except that honestly, I am glad Genna is , for the first time, trying to express something about her experiences. She really Doesn’t, which is a bit bizarre (from She Who Has to Process EVERYTHING in writing). I hope it helps her.

The med switch is complete, and G did not completely fall apart, which is a relief. I don’t know that she’s any BETTER, but we can fiddle with the dose to help her. We meet with Dr. B the day after Easter. Right now everyone’s allergies are a disaster, Genna & Rosie are a mess, even Andrew is clogged. I don’t get too bad, but even I can feel some eek.

Genna and Rosie got their report cards. . . Rosie did great (no surprises there, but the novelty of a Hooray Without Drama report card never gets old for me!), and Genna improved across most subjects. She works SO hard, and her science teacher gave her a special mention for her diligence. She was so proud, and we are too. School is so hard for her.

We are very grateful to my family for helping Andrew work towards the grades we ALL know he should be getting. I wish I knew why things are how they are. It’s been tough (much of what renders me silent here is teen-centric), and I am beyond my wits’ end. Andrew is so talented and smart, we just wish HE knew that.

That said, he FINALLY is playing baseball (it has been ridiculously soggy here). In yesterday’s game IHS was up by 3, then Hillsborough tied it…IHS went 2 innings with no hitting, Hillsborough had runners in scoring position…2 outs…the go-ahead run heads for home on a long hit to center field. Andrew fielded it and THREW THE KID OUT AT HOME PLATE FROM CENTER FIELD. It was freaking awesome, to use the vernacular. Momentum Shift! In the next inning IHS bats started doing their thing…bases loaded…Andrew hits a bases clearing double to just right of center. He’s been frustrated with his hitting, it was one of those great moments of mental hooray, and a guarantee of a Happy Ride Home. : ) IHS went on to win, I think 8-3? 9-3?

I don’t get to many of his games now, since they are all in the afternoons, I am so glad I could go to this one!

In other news, Rosie got braces yesterday on her top teeth that are getting moved around by the palate expander. She is so cute. Dave almost had a coronary seeing her looking so old (seriously), but braces are WAY cuter than they were back in the day. Unfortunately by last night Rosie was in so much pain, and this morning was no better. I hope the advil kicked in…

Finally (I so have to get ready for work) Dave and I tried to go away last weekend for the first time in… at least 18 months, maybe more. Saturday was nice and pretty relaxed, Sunday I had a full bore anxiety freakout, but that is what it is. Because we went away so last minute, we really had planned nothing… and we have gotten really bad at thinking of what the heck do you do with no kids around. It’s sad but true. I am very grateful to my family for helping us. Maybe eventually I will actually DO my New Year’s Resolution and call a doctor so I stop having full bore anxiety freakouts. Sigh.

We also had a full on computer crash this week, which was not so much a fun time had by all.

The school year is winding down (my seniors are SO DONE! But I am still wearing heels every day, they have to keep working! ; ) ). Summer is on the horizon. G is working hard on the exercise bike from Ori (so is Rosie, but she’s too short, so it takes her about an hour to go a mile, she is so cute working at it). I just want everyone to be healthy and happy. That really is all I want.

Well, that and a bag of mini-eggs, but I have that covered. Ahem. ; )

Please pray for us tomorrow . . . I really don’t feel so good, and the weather is again supposed to be chilly and yuck. Next week we are running Miles for MJ in Harleysville, PA, if anyone wants to join us. . . that’s a 5K, and I will be slogging through with G. Hopefully tomorrow will actually be a good way to start Holy Week. . . I know that sounds bizarre, but really. . . it’s kind of a good way to focus on the idea of doing something miserable for a good reason (obviously at ridiculously different levels, but you know what I mean?) .

Tomorrow we RuNFor a Reason.

Peace,
k
please continue to pray for our dear friend Marge, G’s 1st grade teacher, who is on hospice right now, and for Joe Burke, a longtime supporter of G who is battling malignant glioma. The grace and dignity these folks show in fighting just . . . I have no words. Please pray for them.

Friday, April 1, 2011 7:49 AM CDT

Hi, all…
Another week has gone by, it is APRIL? Egads! And snowing lightly (Eflippinggads)…poor Andrew was supposed to have the first game of his baseball season today, the weather seems to be as unpromising as possible.

Friends of Jaclyn Day at Rutgers was so wonderful for Genna (and Rosie), even if it was akin to watching a game in the Arctic Wasteland. So cold! I have pictures on Facebook of my girls bundled upon bundled, huddled on the sidelines. RU played so hard, the girls were so wonderful to my girls…it was a tough loss to Syracuse, but we are so proud of the team for the heart they showed!

We know you can’t win every fight, you just have to keep on moving forward.

That smacks of a 1980s PSA, right? The more you know…doo doo dooooo….

ANYWAY, Genna was especially thrilled that her big sisters presented her with a special gift…a DS! Wow...she was ECSTATIC. Thank you, girls. G has been playing it and playing it…

And this week naughty Aunt Ori sent the kids an exercise bike, (!), once I get the playroom cleaned up so we can set it up down there G is determined to use this to earn miles for a prize. Thank you, Ori.

I am trying to learn, still trying to learn how to be good at receiving. We are so grateful—I just . . .sigh. You know?

We are still working on our e-mail issues. If anyone receives e-mail from theicams@hotmail, that is from our Nigerian travel agents, NOT US. WE DO NOT HAVE A HOTMAIL ACCOUNT. Please. You know if I travel, it WILL show up here. Granted, most folks who likely got the bogus e-mail don’t read here, I hope nobody is actually sending cash to Cardiff. Sigh. Our new e-mail is our Verizon address. If people need that, just post in the guestbook and I will e-mail you back. Our entire address book was stolen and put on the hotmail account, but hotmail won’t help us.

(insert unprintables).

In other “Keep On Moving” news, our big race is in 2 weeks (EEK!)—see the link above—NO donation is too small!-- I need to go put in some treadmill miles. This week my work schedule is a bit askew because the high school is away on the annual choir tour, I am just teaching 7th Grade history, which means I have mornings to Do Things (like run, ugh). I should have the Coffeehouse Thank Yous in the mail tomorrow…there are pieces to each one, I agonize, ugh. I am now embarrassingly late getting them out, I don’t know what is wrong with me this year.

We are into the final quarter at school. Using the “It Takes a Village” method of life, we are trying to help my teen out of a hole he dug for himself academically. Unfortunately, there is no homework fairy. I thought we had established this fact many years ago, but apparently…not. This has made for more extreme stress here the last few weeks, but I am very grateful for my dad the math whiz who my teen actually likes. Sigh. Too bad he doesn’t like mom the History/English teacher, Elizabeth the Neuroscience major, Dad the CPA, Grandma the Spanish teacher (ok, he likes Grandma, we are blessed with a merciful Spanish teacher this year, Andrew is very, very fortunate). But sigh.

Genna and Rosie are chugging through things. G is SO DILIGENT at school (maybe someday she could BE the homework fairy?) . Rosie just proudly completed her first science project, which of course got finished the night before it was due because Mom never got poster board. I am so not together! But Rosie was so cute, putting stars and hearts and smilies around her “Vertebrates”. ; )

This week we began the last part of the first phase of switching G’s meds. So far I don’t see a lot of difference good or bad, which I guess is promising? Ish? After G is totally off her old medicine next week we can observe the new stuff and then fiddle with the dose if necessary.

As a side note, people who say that these sorts of medications are never necessary, they are simply a conspiracy of the drug industry…those people are full of worse than crap. Pardon me. And segue to crabby moment, skip the next paragraph if you want to feel the Joy of the Lord In Your Heart while reading.

I have been SO GOOD, I have not been reading the blog that upsets me (why do I read it? I don’t know, why do people pick at scabs, or watch anything on the Disney Channel, you just can’t help it even if you KNOW it’s bad). I also survived the unpleasant meeting at work. I wasn’t quite prepared for what that meeting WAS (I was told I was being informed of accommodations for G. This isn’t quite how it played out). Without going crazy detailed, I think sometimes people just believe things they want to believe even if history reveals a different reality. (See, this does tie in to the blog comment). The end result is that I don’t feel a whole lot better about how things are—or will be—but promises were made. And I will see that they are kept.

Genna has a lot to deal with in life. A lot more than most adults. Between health, and school, and a teen brother who is struggling, and just growing up stuff, Genna is really having a tough time emotionally. I refuse to let ANY class at school add to her stress. That said, G is ALWAYS stressed about other classes, but that is because of her own anxiety. We have been super blessed with great teachers this year, everyone is really on her side. The one person in question assures me they too are On G’s Side. I hope to see this play out in real life, not just in some imaginary construct of real life.

Hey, it was snowing (now spritzing) and it’s April. And I know I have to run 4 miles still. ; ) I’m a little testy!

I do hope that spring is a-coming. Our flowers are popping through, the sun is out longer. The weather has just been so cold these last weeks, we had one day of flip flops and then back to the wool sweaters. I think some warmth, and a deep, deep cleaning of my house will make me feel better. I just have to get the thank yous done, and work through my lessons for the rest of the year. . . I promised my seniors some fun, I need to deliver. They have worked hard for me, I would like to reward that effort.

Finally, we got the official ok to wait to scan the girls until the end of July. They will both go on the same day again, likely right after G’s 13th birthday (!!!!). I need to set that up, yesterday R’s orthodontist mentioned braces for her front teeth while the expander is in (fine!), but then said braces would be on longer than the original 6 month time frame he gave me… (not fine!). I was caught off guard, tried to explain the issue –he kind of gave me “dumb mom!” attitude (for a minute—you know, the talking slowly thing…oh no you didn’t!). I think I made clear that we need good MRI images, he ultimately assured me they would figure something out. We were so careful about the timing of Rosie’s expander to avoid this issue. THIS is the kind of thing that makes me insane, now I will be worrying over this for 3 months. Next week when we go back I will explain that cardinal rule, Brain Tumors and Facial Plexiform Neurofibroma Tumors (yes, I will spell it) that wrap around things in uncomfortable and inoperable ways trump Straight Teeth in terms of Life Priorities.

I am tired of explaining the rules over and over. But I know, you can’t win every fight, you just have to keep on moving forward.

Peace,
Kristin
p.s. please pray for our Camp Sunshine buddy, Tommy, who is in a tough spot : ( and for our friend Emma, who just started new mega chemo. We have to find a cure already.

Monday, March 21, 2011 12:22 AM CDT

FRIDAY: our email was hacked!!! ignore any pathetic messages from us regarding our woes in Europe. I am in Jersey. I am at work. I am really, really irritated. And very sorry!!! I would never randomly ask for $$ from our whole e-mail list, really...well, maybe for CTF I would, but that's different...
sorry!
************************

Hi, all.
I know I’ve gone a tad John Wayne again…”it’s quiet out there…too quiet”. The 2 weeks post-Coffeehouse/around scan have kind of flattened me in new and different ways this time.

And it is Monday. AND it SNOWED here (happy spring my ample backside), my yard is white, now moving towards soggy. So read ahead at your own risk, I have been told I am too depressing. I am working on perky brain tumor talk, it’s a challenging niche to fill, if you know what I mean. Ahem.

In truly perky news, donations are still coming in, and thanks in large part to a gigunda donation from DRS Technologies (Dave’s work) we are over $5000 in Coffeehouse fundraising for the Jersey Shore Relay on April 16. Our team link is above, if anyone would like to join the festivities. I just finished my first training run in 9 days, a measly 3.7 miles. Unfortunately my left knee did NOT get the memo about the race being in 4 weeks…ow. As I sit here, smelly and yuck (and yes, in unfortunate spandex shorts), I just hope this makes a difference. I hope we find a cure. I hate running SO much, we really have to find a cure.

Last weekend Dave ran a half marathon. For fun. Yeah.

We have begun the process of switching G’s meds, tomorrow we have a visit with the pediatrician and then if all looks ok (I figure it should) we will start the new stuff tomorrow while continuing to wean off the old stuff. My poor G needs to be able to find some zen. I am also on the lookout for a stationary recumbent bike, we think that might work for her to get some exercise…she can watch cartoons (a treat!) while pedaling and earn a prize with miles. Yes, shameless bribery. Yes, I think it might work. But since I’m not sure, I’m checking craigslist and freecycle for an el cheapo recumbent before we invest in an overpriced clothing rack.

I still have to call some folks at CHOP about ways to help G cope with life. We have a double visit set up for the day after Easter, and Rosie will have an ear check in June. I just have to figure out when exactly to set up the summer scans, they are due in July (both girls) but I signed them up for art camp after Lake George. I need to figure that out.

I’ve also had to kind of deal with an issue at G’s school, one that came up 3 days before her scan. I am trying to give up nunchuk use for Lent, so I am a bit challenged. The administration has been very helpful, but I know I have to have a conversation with someone that is not going to go well, a conversation I predicted a few years back, if you can imagine. But for Genna I am fierce. I’m not sure I can even defuse this moment with humor. Sigh. If only I could wait until the feast of the Annunciation on Friday, I could pull out my nunchuks… ; ) Only kidding. Ish.

I kind of don’t even know where to start or what to muddle through …the last 2 weeks have been so crazy. We continue to deal with stuff with our teen that kind of puts me over the anxiety edge, nothing earth shattering…I just have lost any threshold I have for anxiety, apparently, and it’s annoying. And his arm is sore, which for a pitcher is YIKES! Sigh. The Monday after the Coffeehouse I had a full bore linear ptsd meltdown when a medevac helicopter landed near Diamond Nation, where IHS plays baseball. Full bore meltdown. Thank God nobody saw me, I had to call Dave, it was mortifying, he talked to me until the copter left, it was only about 200 yards away from me. Andrew even asked what was wrong when he got back to the car…

How do I explain that the first night we were at CHOP in intensive care, when I couldn’t sleep and I kept asking God why, why was He punishing us? and spelling optic chiasmic hypothalamic glioma forwards and backwards , that entire night I listened to the medevac copters land on the roof, I could see the lights as they passed over the atrium windows outside our window (the PICU used to be in a different spot than it is now)…something about a medevac copter, seeing the ambulances and the medics loading a stretcher onto that copter, I was back on September 1, 2004.

I only even mention this because…I don’t even know why, really. I guess I just need to say it, just like I needed to spell G’s tumors, so I could own it and not be owned BY it, if that makes sense.

But it took me 2 weeks to type it here. Alas.

In a parallel note, 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.

Last weekend Dave took the girls to the RU LAX game (apparently VERY exciting) and I took Andrew to baseball…right by my buffalo farm I saw evidence of a car accident…and found out at the end of A’s practice that a 17 year old baseball player had been killed on the way to Cust that morning…my heart is so full for his family, and for his team. I just feel like there is so much heavy stuff right now. I may have to start driving another way to baseball, to keep going by that spot is wrecking my head every time. That is my nightmare for Andrew…

On the up side (I am trying, really!) we did take the kids away for 2 days, we meant to have Andrew come home sooner but he, um, begged and refused and ANXIETY. But in general we had a really nice time, we went to Great Wolf Lodge with friends old and new, and the kids played and had fun and we just got to be with each other. Genna got to hang out with a dear, dear NF friend...to see her and Gabbie instantly click just made my heart so full. There is nothing more than that that matters, you know?

I think, more than anything, THAT is what I long for. Time to just BE. I feel a bit like we’ve lost our way, like life is living us. This frustrates me intensely, I just don’t know how to get back. I am trying on Fridays to stop by church on my way home from work for 10-15 minutes just to sit and be quiet before the Blessed Sacrament. I am trying to find our family center again. I know we can never go back to before – Rosie was looking at an old scrapbook yesterday, all pictures from early 2004, our fun trip to Philly (oh, the irony!), Andrew in Little League, Genna smiling but so pale, we didn’t know then why, Rosie just a baby of roly-poly curly cuteness—those pictures are almost painful for me to see, even as I love them. I know THAT ship has sailed (and really, I should get rid of that pair of plaid shorts from the Railroad trip, they were hand me downs in ’04!). But I do hope during Lent and beyond we can kind of find some peace again, a foothold in the craziness of modern life.

At the end of the day we have each other. I really do believe that God gave us each other, and we are a family for a reason . . . and all the people we’ve met through this journey are in our lives for a reason. I am, as always, grateful for you all.

Thanks for slogging through my tale of random woe. We should have an ok week, I hope, Saturday is Friends of Jaclyn Day at RU LAX, Genna has been practicing her coin toss skills (really, she has been practicing, it is hilarious to watch), and we are looking forward to that so very much. G loves her big sisters…

And that’s a good note to end on: while counting the raffle tickets for the NJ License report we have to fill out, we found a bunch of premium raffle tickets filled out by the RU LAX girls for Genna . . . Genna saved one, this meant so much to her, she was so proud and kept telling everyone (and showing them the ticket she saved). . . you girls NEED TO KNOW how much your love means to G, even when she can’t recognize you individually (it’s her eyes and brain, not you! In uniform she can figure out who’s who by number and hair style ; ) , she carries the list of names ). She loves you all. Thank you.

Wishing you all peace—
Kristin

Monday, March 7, 2011 10:49 AM CST

THURSDAY MARCH 10
complicated but word on the street is STABLE!!! Really truly mom stable...one new tumor spot, but it's really small...AND THE PORTION BY G'S BRAINSTEM IS SMALLER.

we .... have... never...ever...heard...SMALLER! never ever.

G has a ton of tumor kind of everywhere. But the brainstem portion was noticeably smaller, and the area we've been freaking out over for the last 6 months was also less pronounced. I am just agog.

And exhausted and typoing everywhere.

G was a train wreck emotionally today, we tried to have her do the scan with relaxant meds NOT heavy sedation, which completely failed. She was miserable most of the day...but stable. And smaller.

AND we saw some old friends, always good for the soul...and had some hard conversations with the doc about future stuff for G and how to help her be happy in life. I hope our next assault on the side effects of the tumors goes well...

but tonight, we sleep...in gratitude and hopefully some measure of peace...

and please, please pray for our friends in Wisconsin, Emma has surgery tomorrow am at 7:30...serious brain stuff, stupid NF stuff, please pray...

I can't see straight, goodnight...

peace,
k
**************************

Hi, all…
I am determined to vacuum and clean in a frenzy today, but I know I have been awful AGAIN at updating.

Things have been insane.

But the Coffeehouse was, I think, a success. Of course we have fine tuning things (and I am trying NOT to obsess over those things), but all in all I think people had a good time. At the actual event we raised about $2600, and donations are still coming in (yesterday we received about another $150, and I know some folks are mailing things, Dave’s work often donates, etc.) We are really grateful for everyone’s support.

Some highlights: on Friday morning, MY BROTHER FROM FLORIDA SHOWED UP IN MY KITCHEN. This quite possibly may have been the best surprise EVER. We even snagged an hour for a sushi lunch. I can’t even say how much this meant to me, or how happy I felt about having Rich here.

A special thank you to the RU LAX girls for coming to see G, she was SO PLEASED (and you are all WAY glamorous when not in game gear) –we actually went to the RU home game on Saturday afternoon, which was a good time. I kind of needed to NOT be freaking out at home for 2 hours. : ) G did NOT win the DS, I am supposed to let you all know that. I do think maybe now I have an exercise motivator for G, ala our old internet/new Camp friends the Roncos … maybe miles for a DS? Hmmm…

A thank you to to the Koinonia Academy Service Club and all the students who helped set up, sell tickets and clean up. Thanks to Suzanne Quense (who is our super speedy relay queen) for arranging for literally 50f the cookies to get baked by people other than I!

Thank you to all our performers, without you the night would be uber boring.

Thanks especially to everyone who donated raffles, and to everyone who donated anything. Of course ROSIE won the $^@& Littlest Pet Shop basket (which she has been drooling over for months), and GENNA won the Ciro’s Italian Gourmet basket and the Jarego family Candyblast basket. Ack! I cannot win on the food front here. ; )

I have 42 million thank yous to write, and so much to do here, but I am glad we are through the Coffeehouse. Now I really need to get moving on my race training!

For the text of what I personally said on Saturday (sans my weird ad libbing), visit
kmc-movingrightalong.blogspot.com

We are still taking any and all donations, (no donation is too small) for our race in April. THAT link is
http://www.active.com/donate/nfjsr2011/G-foRce

Phew. Enough begging for the moment. I am sort of entering the period of peculiar desperation that occurs 3 days before an MRI.

Yeah. Great timing, right? Genna scans on Thursday. We have a lot to talk about with her doctor even BEFORE we look at her brain, but to say I’m not scared witless would be a big fat lie.

There isn’t a lot of NF good news flying around recently. And G has been really struggling with things. She is worried. Who can blame her?

ANYWAY, this week should be packed with post-Coffeehouse work, lesson plans, scan day, and the continuation of Andrew’s baseball tryouts/practices…which means piles of driving (note to the Middle East, please work things out, Flemington is far and my minivan isn’t super gas-efficient, so please, please work things out! Thank you). I can’t seem to make A do any schoolwork, and I am losing my mind. I would like EVERYONE to be zenlike for just a day, ‘k?

AND Lent starts this week. Last year Lent was an epic fail on the Camiolo family front, I am DETERMINED this year to try and reclaim ourselves a bit, if that makes sense. We have just been floundering for months. July 2010 set us way, way back, even as life keeps hurtling forward.

BUT, we can finally see ALL grass in our yard again! I even saw a crocus bud in my garden! SPRING IS COMING!!!

On that note, I am going to go vacuum something and clean a toilet or two and just scrub things for a bit before I start on the thank yous. But thank you so much, all of you, for standing by us. We are so grateful…

We will never give up.

Peace,
k

Friday, February 25, 2011 8:04 AM CST

Hi, all—
Happy Friday.

I am literally drowning in schoolwork and Coffeehouse preparation –only a WEEK until the

Coffeehouse for a Cure to benefit the NF Endurance Team,
a fundraising arm of the Children’s Tumor Foundation!
St. Mary’s-Stony Hill, Watchung, NJ
Music, Cookies (if I ever start baking), and Great Raffles!
$6 a person, $12 a family suggested donation (but nobody is turned away!)
Doors open at 6:30, Entertainment begins at 7:15!!

I will put up a link to our race donation page as soon as I remember what it is. Our Coffeehouse fundraising feeds through our NFE fundraising page to make things less confusing. Really, less confusing IS the goal. Urp.

That said, I had to jump in and at least 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.

The first night was a little rough for the teen (he didn’t know why he was there). I was freaking out (understatement), but the next morning when organized stuff began and we sent him off with the teen group, he found his place. By Saturday night he wanted to know how we could get back there in the summer. I. . . am. . . so . . . grateful. He finally met other kids who live with this.

Genna and Rosie weren’t in the same group, so R was a little lost. She is so shy, but her counselor Donna took care of her. G seemed to have fun, too.

For Dave and me, it was like a breath of fresh air after been stuck under a swamp for years and years. I really can’t express why or how . . . it just was.

Genna and Rosie did a big number at the Talent Show that involved our Banana costume (imagine a rousing chorus of Chiquita Banana, then B is for Banana, then ending with a big Banana Split: G posing and Rosie doing a split. We Camiolos are nothing if not highbrow). They sang and played and just . . .it was so amazing.

Re-entry has been a bit tough (I hit full bore linear panic this a.m. about all I have to do for the Coffeehouse), but it is all worth it.

While at Camp I finally got a call back from CHOP, G’s next scan is 2 weeks from yesterday (so 5 days after the Coffeehouse). Cue Whitman’s “The World is Too Much With Us”. . . sigh. We’ve gotten a lot of epically bad news in the last few days for our friends battling various smites, and I’m not going to lie, this weighs on me like a giant cosmic Panini press. I have felt flat for a very long time. Camp Sunshine gave me a little 3D back, but . . . you know.

It’s a marathon, this NF thing. A heartbreaking marathon. And some days knowing we will finish even if we don’t win isn’t enough for me.

That said, we are going to keep fighting. I am officially signed up as the Slow Person on Dave & Suzanne Q’s Jersey Shore Relay Marathon Team, (this is what our Coffeehouse $$ goes towards), so I better get my game face on. And perhaps some better sneakers. And shorts that don’t make me look so wide (although really, not that many people will be running behind me, I am awfully slow). Seriously, we aren’t going to stop running until we get treatments for our kids and our friends’ kids.

We are so grateful to Camp Sunshine for fueling us back up for the ongoing race we are slogging through. And we are grateful for all the teachers who gave my kids time to get through their work (G is still have panic about things, and I needed the cattle prod twice for Andrew, but . . .it’s getting done), and grateful for all of you.

Peace,
k

Wednesday, February 16, 2011 4:33 PM CST

Hi, all…

THE COFFEEHOUSE FOR A CURE IS IN LESS THAN 3 WEEKS! AAAAAAAAAAAGH!

I MEAN, COME ON DOWN TO ST. MARY’S STONY HILL IN WATCHUNG, NJ ON MARCH 5 FOR AN EVENING OF MERRIMENT, MIND-BLOWINGLY DELICIOUS COOKIES, AND RAFFLES GALORE! ALL TO BENEFIT NF ENDURANCE/CHILDREN’S TUMOR FOUNDATION !!

A brief note today, I am drowning in trying to get us ready to go to Maine, creating hefty plans for my classes (nothing is worse as a sub than not having enough for a class to do; even the nicest group of kids can turn festive when a sub is in the room), wrapping stuff for the Coffeehouse, and trying to get my house clean. The detritus of the History Fair seems to have taken over my dining room…

Which is a glorious segue to GENNA AND HER PARTNER CAME IN SECOND IN THE JUNIOR DIVISION OF THE HISTORY FAIR!!!!!!!!!!!!!!!! “Ain’t Gonna Ride No More”: Ending Bus Segregation was their topic, and G & her friend K did a great job. We have outside judges come in for this, so I didn’t know the results until the very end. . . one of the judges turned around to me and said, “Genna really knew her stuff” as G & K were dancing up to the podium. SO PROUD!!!

I had prepped G carefully for “it’s ok if you don’t win, you and K worked VERY hard and I am sure you will get a good grade”, knowing how G is. Saturday we spent 5.5 hours on the project; they did everything, I just stayed nearby for guidance (and intervention in the one Sharpie Crisis that occurred). These girls worked really, really hard (the first round of judging involves only the exhibits & paperwork, not the students: G & K’s project apparently stood on its own very well), and I watched G sell the poster to the judges (too funny, she was workin’ it). I could not believe they won. Based on the quality of their work I could, but… as mom, I was agog.

After years of school struggles, I am just so proud of her.

I am also WAY proud of my class, they swept the Senior Division. As in THEY WON ALL THE AWARDS. Ahem. They worked really, really hard (yes, I had to bring out the cattle prod, but they did ultimately put in a lot of effort) and lived up to my ridiculously high expectations. I told them as seniors their work needed to be the best, and it was.

So today I feel like road kill. But happy road kill.

And…in about 36 hours we leave for Maine. I am completely NOT READY. I am starting to feel nervous but excited and then more nervous, when I have energy to feel anything other than an overwhelming sense of impending laundry-esque doom. I just hope it’s good for the kids. I hope I am not completely a dork meeting everyone for the first time (the perils of a lifetime of timidity. At least now I nervously prattle when nervous/shy, I don’t just always go totally silent like an inordinately tall garden gnome like I did in my youth). Still…yikes and yay!

And CHOP radiology has NOT called me back, I spent nearly 20 minutes on hold this afternoon trying to get through to oncology again. G is supposed to scan in 2.5 weeks and we do not have a time or date scheduled! I am starting to mildly freak out, now that I have the History Fair past. Once Maine is past I will descend into full bore linear panic which will only be mildly masked by Coffeehouse Full Bore Linear PANIC. Ahem.

Ok, better get cooking some dinner for the mob/finish laundry/do some packing/type up questions to go with the handouts Brown v Board of Ed and the Southern Manifesto/stage an archaeological dig for my dining room table and maybe, just maybe grade some papers. ; )

At least I found Cadbury Mini Eggs at Target…and I still have one bag left. At least as of 5:30. Ahem.

Peace out, all, and please, please pray for us this weekend, especially Andrew & Genna. R will do fine no matter what, but G has been panicking about missing school, and A is getting nervous about “no teens will be there” (which is patently false, but, you know…).

Camp Sunshine, here we come!
Peace,
k

Friday, February 11, 2011 12:02 AM CST

I just realized I have only updated in my head.

This creates something of a challenge for anyone trying to READ an update, I do understand. : )

We are so very busy with school and activities, slogging through normal life. Our school is having a History Fair next week, largely because some noodge pushed for it. Ahem. Working on getting my class ready, getting the fair itself ready (thank God for the parents who are taking care of the logistics & the judging details!), and getting my 7th grader ready has been kind of all encompassing. I am excited for the fair, I think it’s a great step towards next year being able to participate in National History Day. I am just drowning a speck.

Genna has been VERY excited to work on her project. She is actually working on it with a friend, to my surprise. The whole thing has gone pretty well. Tomorrow they are meeting here to put the display together and finish up their presentation…I expect that will be a lot of work, G has a lot of trouble knowing how to understand a pile of facts as a coherent whole in any kind of complex way. She knows the story; she and K are doing “Ain’t Gonna Ride No More”: Ending Bus Segregation , and Genna finds this very interesting. She just has trouble drawing conclusions from things.

The other day she was getting frantic about a source, she asked over and over if the website we were on had an address, did it have an address…finally I became utterly exasperated (I was trying to get her the info she needed printed in a font she could read). “This website doesn’t have an address, it’s just magic and invisible.”

“Ok, Magic and Invisible. I will tell K, “ she answered…

She wasn’t kidding. Ahem. Apparently sarcasm is MOST wasted on a literal 12 year old. Once I corrected my misleading snark G giggled and giggled at herself…
: )

Rosie has established a countdown on our fridge to both Valentine’s Day (complete with big red heart) and to Maine. I still can’t believe we are going to Camp Sunshine. I desperately hope my children can find they are not alone…and not just my bt kids. My teen needs to meet other teens who live this too, if only so he can accept the reality of how living in this shadow impacts life.

I am nervous and excited and also realizing I have to get my creative hat on to figure out how to entertain everyone for 7 hours in the car. I am a road trip aficionado from my childhood drives to western KY (granted, we would play board games set up amidst the luggage in the back of the big van…ah, the old “seatbelts? Who needs ‘em?” days…) . I like that kind of challenge.

The bigger challenge is prepping for leaving my class for 2 days. Eek. And making sure my teen talks to his teachers. Double Eek.

And as SOON as we come home from Camp, I need to start baking! TRIPLE EEK!

The Coffeehouse is just around the corner (ok, eek times infinity, I’ll stop now). We are getting some really nice raffles, and I think the entertainment is coming together. The Service Club from the school where I teach has offered to help with set up and clean up and tickets and such, which is a HUGE relief. I am the worst asker for help in the universe.

We have 2 Vera Bradley bags, a NY Rangers autographed hockey stick (Vinnie Prospal, who JUST came off of an injury and scored in his first game back…hey, I have to think good things come to those who help others!), a Knicks John Starks autographed picture, the Nick Folk Jets football, a giant Littlest Pet Shop basket, and lots of other goodies. My girls LOVE watching for the mail. Thank you to all our donors.

I also realized that Genna is supposed to have an MRI right after the Coffeehouse. Sigh. I am waiting for the call back from radiology.

Who told you you’re allowed to rain on my parade?

It is what it is. I just forgot that it would creep up on us so fast. Having the girls on this weird alternating schedule is not a jolly time had by anyone.

I am drowning my sorrows in muffins today, and I have to get a batch out of the oven. Please pray for all our bt friends, and our NF friends, and so many people we know who are suffering right now. My heart hurts for so many people…

Peace,
k

ps I almost forgot G's giant excitement: New Pink Juicy Couture Glasses! Oh, she is so blingtastic!! And she did well on her report card...it makes me so happy to see her so proud of herself. She earns Every Grade through very much hard work... GO G!

Monday, January 31, 2011 12:11 AM CST

Hi, all.

I know, it’s Monday, but I am trying to be better about NOT letting things pile up in my head.

Good news first or vaguely ugh?

Ok, I’ll get the ugh out of the way. No biggies, just normal life and reminders of everything seem to be whomping us. The more I decide I am going to reclaim our happy family, the more whomped we get. Hopefully I can find a way around some of the ugh…

Which is utterly vague, I know. I do have SOME things I don’t say on the internet. We’ve just been in a really challenging season here.

In more specific yikes, we went to St. Ann’s on Saturday. St. Ann’s is the soup kitchen in Newark that our church supports. We are on the “Fifth Saturday Team”, so every few months we go and help. This time I let Rosie go to Phoebe’s house; R is just so small, it’s hard to find ways she can help. We dragged the other two out the door amid some stress (as always; it seems like the better the thing you are going to do, the more stressful it is to get out the door).

We saw first hand the difference of living in an urban area when there is big snow. Newark was a disaster, the streets were narrowly plowed if at all, cars were still totally buried. Thank God St. Ann’s has a small parking lot (so small I had to get the van out when we left, Dave gets all flustered trying to make our family minivan fit through narrow spaces. Or go backwards. Or… ; )

ANYWAY, Saturday ended up being a food pantry day at St. Ann’s, not a regular meal day. We were glad to get to help with this, although it was a bit of an adjustment from what we know how to do there. At first they had us help organize the back food pantry (not the area in the front with the bags packed for the clients). Genna loved this job. Until she fell down the 3 stairs leading from the pantry to the kitchen… YIKES!

She just didn’t see the step, and didn’t hear my “Watch the step!” warning in time.

Later she took off her food prep gloves and said, “Mom, my hands smell like my old chemo”. I wish I knew why this kind of remark flattens me. She’s never said anything like that before, never in 4.5 years OFF chemo. I guess she remembered the latex smell from when I used to give her temozolomide at home? She was pretty cheerful about it, but it was one of those “HEY MOM, YOUR KID HAS A BRAIN TUMOR, IN CASE YOU FORGOT FOR 15 SECONDS” kinds of moments. Urp.

LATER she managed to flip backwards over a line of grocery bags full of food. This moment was hilarious, even G was falling apart with laughter. Sometimes you just HAVE to laugh!

At the same time, I was really, really … I don’t even know the word … all of these families waiting on line for a bag of canned goods and some cheese. I go to Costco or Shop Rite every week and just get whatever my family needs. We are so flipping lucky. We should be falling over ourselves (Genna style) with gratitude. Really.

I spent the rest of the weekend slogging through exams and projects and end of the quarter grades. Ugh. I am so behind on my lesson plans again.

This morning I went to pull out of my driveway to go to work, and the brakes on my van FAILED. Like, foot to the floor and car is rolling kind of failed. EPIC FAIL in the truest sense. At least I was only in the driveway, thank God! AND my parents had an extra car here today, albeit one with only somewhat working heat. I think I was 15 minutes into class before I regained feeling in my fingers and toes, but at least I GOT to class.

Ok, enough yikes. NOW THE GOOD NEWS!!

WE GOT INTO CAMP SUNSHINE!!!

Huzzah! I am not sure whether to cheer or cry or eat something. I just pray this is what I hope it can be, not only for Genna (and Rose) but for me and Dave, and really for Andrew. We are not alone.

I don’t even have words, which is hardly fair considering the number of words all the yikes got. But hooray times a bazillion katrillion. We will be able to spend a few days with people who know this road the same way we do. I am so grateful.

AND the Coffeehouse… we just got TWO Vera Bradley purses donated, and a piece of music from my past, thanks to Mike Giszczak. Things are really coming together. . .

I have to keep an eye out for the tow truck, so I better run. Life is a crazy roller coaster these days, but at least there are a few ups today! : )

Peace,
K

Tuesday, January 25, 2011 4:09 PM CST

Hi, all.

Happy SNOWY AGAIN Tuesday!
We are shuffling back into normalcy after the intense yikes of pre-scan and scan and post-scan. Herein lies the difficulty of our more frequent and alternating CHOP visits. . . I am running out of non-pre and post scan times. Urp. Still, we are getting back to normal here, which means crazy busy.

Rosie had her triumphant visit to Build a Bear on Saturday. She picked out a floppy eared bunny and a cute outfit. She gets all shy in public, so when the guy at the stuffing machine asked her why she was there for a bear I had to translate (since “I did my scan awake!” was a bit incomprehensible). But “Rosie was super brave at the hospital and did a long MRI awake” got R a high five from the nice young man who brought Floppy to life.

Friday was a wash for me, I really felt physically ill. Thankfully by Saturday I had perked up to my normal vivacious self. Ok, I was at least not curled up in a ball on my couch watching dvr’d American Idol. . .

I’ve also tried to Really Start Working on the Coffeehouse, which of course is the Coffeehouse for a Cure for NF ! Saturday, March 6, 2011! St. Mary’s Stony Hill, Watchung, NJ!!

Doors open at 6:30, Entertainment at 7:15!

Cookies! Music! Laughter! RAFFLIAGE GALORE!

So come on over, already. : )

We’ve had some really neat musical coup –de-tats in the last few days, and (fingers crossed) some really funny ideas coming together. I want the Coffeehouse to be a night of laughter and fun. NF is so NOT FUN. So really, the best way to stick it to NF is to have a crazy lot of happy fun. This could be referred to as the Sandra Doctrine, if I gave official titles to everything. Ahem.

In other news . . .

We finally got our FULL application in to Camp Sunshine. I almost don’t want to get my hopes up. If we don’t get in, I will be disappointed, I really hope that Genna can meet and make friends with other kids who understand this boat. But if we DO get in, I will likely be terrified. Expectations have a nasty way of imploding for me, and , well, I have a lot of hopes for Camp Sunshine. But the opportunity to meet some of my dearest online bt friends is just too wonderful to NOT try and make happen. We’ll see how that goes.

Genna is slogging through schoolwork. She had to get an extension on her last book report, getting through a long book (even with Kindle and CD version) is tough. Still, I hope we can continue to help her learn to comprehend the harder books, reading is such a safe haven. . .

Unless you read yikes books, I decided last week to read A Thousand Sisters, by Lisa Shannon. Now I need to adopt a sister in the Congo. Really. You cannot read this book and NOT be moved.

But I digress, as usual.

Looks like we may get another snow day, a for real snow day (we’ve had a bunch of delays), the ground has been white since Christmas, which is odd for Jersey. I kind of hope for a day where I can just chill with my girls. . . at least until we have to take Rosie to get her palate expander in (poor R!) and G to art. . . but I do kind of like the idea of a day with my girls.

I so should be grading papers or making dinner. Thank you all for hanging in there with us. I know we have to pull things together a bit here, but we will prevail. We have to.

Peace,
Kristin

Thursday, January 20, 2011 9:11 PM CST

Stable.

Word of the day is stable, we have some answers on the ear issues Rosie has been having (has to do with lymph nodes & the vascularity of plexiform tumors, for science buffs out there), nothing has grown. There is one spot of “huh?” in her optic area, but we aren’t particularly worried about that.

G’s eyes were also stable. Dave was with G, I was with Rosie, so I got the info second hand, but acuity is stable. Apparently G’s visual fields were somewhat impressively absent (even on her Good Side), but not in a new way? I wish I had been there to follow up on that. Dr. Liu wants to see her in 3 months.

The BIG NEWS of the day? Rosie decided somewhat spontaneously to do the scan WITHOUT SEDATION! We were shocked, but she wanted to see the mock scanner, came back from that and decided to go for it! She got her IV without versed first. . . and didn’t blink! (kudos, Nurse Nicole! One Stick!) She laid so still on the table for over an hour and a half. At one point she was crying a little , which I did not see. : ( The earphones hurt her. But she was such a trooper.

I am so proud of her.

I sat in the room with her (aka The Arctic Tundra), while Rosie roasted in the scanner (“I was a roasting marshmallow!) !

I must say, at one moment during the first series, in my head I was screaming unprintable things at Magnetom. Screaming. Unprintables. The next series I desperately wanted to go beat the crap out of the machine. With my bare hands.

I could totally take Magnetom.

Normally during a scan I am sitting in a room with other people. Sitting 8 feet away from the massive machine by myself allowed a tad too much time for this sort of thought.

The floor had 5 yellow blocks, 7 orange blocks, 9 blue blocks, and 10 green blocks. Yes, too much time. And the book I had was about food. Which I hadn’t eaten because Rosie couldn’t. Bad plan. ; )

G had sort of a major meltdown moment for a whole lot of the afternoon, which was a perfect segue to talking to Dr. B about G’s anxiety. Yeah. Sigh.

But all in all, it WAS a good day. All told we were gone for nearly 15 hours, and I am fried. The schedule for the next few months wears me down a little: 6 weeks for G’s scan, then back in April for eyes, then May for Rosie’s eyes, sometime in there Rosie needs an ENT visit, and then July Rosie needs to scan again. . .

Thank you all for praying. We get time, and that is the best really. I know that it is.

Peace,
k

Wednesday, January 19, 2011 6:48 PM CST

I am SO BEHIND!!!

But I know I can’t head off to the sunny climes of scenic
Philadelphia without at least saying that we are heading to the sunny climes of scenic Philadelphia…

We likely have to leave around 5:30 (at the latest), Rosie checks in at 8, scan at 9:30, G has eyeballs at 10:30, we all meet in joyous array at neuro-oncology at 2.

Sigh.

Ooh, have to jump for a minute…water for Rosie’s jello jigglers is boiling…

Ok, Jello Beans are done.

It’s been an odd kind of week, some old stress, some new. G bullied all of her teacher s into giving her the work she’s going to miss tomorrow. She is Very Concerned about the Logistics of Eating for tomorrow. . .Rosie has to fast, G does not. G also asked about the origin of the “Doritos After Scan” tradition, which I thought was interesting. . . until I realized she was lobbying for “Doritos After Eyecheck”.

Genna went on a little retreat last weekend, the moms joined the girls for the Friday night portion . One of the presenters talked about giving your heart to God, and different ways to do that as a grown up. That quickly turned into one of those moments of PTSD, or some kind of random whatever. The implication of assumed adulthood hit me hard. I hate those moments.

Now Andrew is using the Magic Bullet next to me in an attempt to make his protein powder palatable. LOUD LOUD LOUD.

AND it’s 7:39 pm and I am still in teacher clothes, sans boots.

Aaaaaaagh!

G’s funniest statement after her little retreat? “Mom! I met NUNS! Sister Anne of Jesus Without Glasses and Sister Monica With Glasses!”

Heehee.

I am stress shopping a bit and wishing I could just stress eat my way into oblivion.

We’ve had ridiculous piles of snow and sleet and gloom of night. Today was midterms, so I have a gigunda pile of essays to grade tomorrow. Yes. That will most definitely happen. Ish.

Now Rosie needs me to detangle her hair . . .

I am so not ever going to get to sleep tonight !

I will try to update during the day tomorrow, it will definitely be a long one.

I just don’t want to do this anymore. I want everyone to be all better. I want to go back to “normal”, whatever that is.

R is hollering “he-lo-hoo”, she wants to see some of American Idol. I better run.

Please pray for my Rosie, and G. I just don’t feel good about things. Nobody has gotten good news recently. Nobody.
Now Andrew is rapping, and G is channel surfing, and Rosie is REALLY YELLING,

I guess we do have Some “normal”. : )
Peace,
k

Thursday, January 13, 2011 11:50 AM CST

Hello, all...

Well, we dug out from another snow day. The kids were all wildly rejoicing at the day off, and if we didn’t have midterms next week I'd likely have joined in the full scale festivities. As it was, I worried a tad about how to get through the material I hoped to cover by next week, and THEN I tried to woohoo with the kids.

I do love Jersey in the snow. Everything looks so pretty, and this time the plowing was better.

95% of our Christmas stuff is away (I leave out a few wintry kinds of things to ease the blow of an un-festive house), and Andrew is back in baseball prep mode. Due to...stuff, our carpool kind of imploded, so now I have to get Andrew every day, which is about an hour now lost each day. Ugh. G is struggling through schoolwork, and just things generally. I really, really hope CHOP can get our medical forms into Camp Sunshine, I can't hound anyone any more than I have, and I really think it would help G. She needs to meet, in person, other kids who know what it's like to live with medical uncertainty.

She had an appointment yesterday with Miss Nora, who agreed that we have to do something to help ease G's mind over things. :(

As I said in my e-mail to Dr. B, of all the things I hate about NF and brain tumors, The Making Genna Unhappy and Anxious is about at the top of the exceedingly long list.

Hopefully by next week we can get a better plan of action. I hate floundering, and I feel like Captain Flounder most of the time. But we will be at CHOP a week from today, so I can have these discussions in person.

Yes, we will be at CHOP in one week. Rosie scans, G has an eye check to make sure all of the "AAAAAAAAAAAAAAAAAGH" of the last few scans is NOT impacting her vision. If it is, the rats will officially leave the ship, if you know what I mean.

At the same time, I'm almost more worried about Rosie... that being the opposite of my happy place.

Really, the only people happy about this are the marketing staff at Loreal. I keep them in business. ; )

I may go do some therapeutic Coffeehouse shopping, I use some of each paycheck for charity stuff, and at this time of year that ALL goes towards Coffeehouse baskets and ingredients and whatnot. I know the Target near Andrew’s school had a lot of Littlest Pet Shop on clearance, and Rosie told me she would put in Three Tickets on any LPS basket. ; )

Oh, in VERY JOLLY NEWS: The New York Jets sent us an autographed football for the Coffeehouse, only 3 days after I mailed them a request!!! The ball was signed by Nick Folk…YES, the same Nick Folk who we met at the Racing for Research event in November, the SAME Nick Folk who has a cousin with a serious case of NF, YES, THE SAME NICK FOLK WHO KICKED THE GAME WINNING FIELD GOAL WITH THREE SECONDS LEFT IN LAST SATURDAY’S PLAYOFF GAME!!!! I was so anxious for him, and we were all wildly rejoicing when that ball sailed through the uprights!

The NY Giants also promised us an item to raffle, we are so very glad!

The Coffeehouse is Saturday, March 5, 2011, at St. Mary’s Stony Hill in Watchung, NJ (225 Mountain Blvd is the mailing address, if you need to map it). Doors open at 6:30, everything officially gets underway at 7:15. That way people can buy raffle tickets, get coffee, get settled, and I don’t have a “we are already running late!” breakdown at the start. ; )

We would love to see anyone and everyone there, it’s a suggested donation of $6 a person, $12 a family, but we won’t turn anyone away, just come on in!

Genna is planning to recite a poem. Rosie wants to open the night with the Muppet Show Theme, so be prepared. : )

We will keep fighting. We will keep on keeping on…

G has a little youth program retreat this Friday and Saturday, she is quite excited. We are hopefully going to see a long lost friend : ) and meet the goddaughter whose birthday I missed (alas), AND join another friend for a birthday dinner this weekend. This should all be nice.

My New Year’s Plans of Zen-tastic Woohoos have been a bit trampled thus far, but hope springs eternal. Hey, it’s only January still…I just need life to cooperate a tad more with my plan. : )

We’ll see how THAT works out, right?

Peace,

k

Sunday, January 2, 2011 10:50 AM CST

Happy New Year, all.

The last week has been so odd, and so…not what I thought it would be, but that’s life, I guess.

Christmas was really nice, Rosie is at the age where Christmas morning involved a lot of dancing and jumping up and down with delight. I really treasure those moments.

Despite my epic fail on the getting ready for Christmas front, at least for the kids and Dave I seem to have done pretty well. The girls loved their “Costco Fuggs” and Genna got a camera. Rosie has been reveling in her Littlest Pet Shop piles. Even ANDREW was happy, which is saying something.

The most fun was really to be had with the Wii games. Just Dance is a riot. Even my mother in law joined in on the Mashed Potato…and watching Andrew later in the week be a good big brother and dance to the Spice Girls with Rosie may be the pinnacle of my existence. : )

Christmas afternoon started well, we hosted the Camiolos, which is always nice. I wish we got to spend more time with David’s local siblings, they are great guys. Halfway through dinner Dave’s aunt called…in all the mayhem of Christmas, none of us had looked at the weather (we have some weather addicts here). We knew some bit of snow had been predicted for Sunday (the day of Grandpa’s wake), but 3 inches is no big deal in Jersey.

Apparently sometime on Christmas the forecast changed. BLIZZARD WARNINGS!

For real?

Apparently yes! So the rest of Christmas evening was spent trying to figure out when the wake & funeral should be, how could we get Dave’s sister in from Colorado (her flight for Sunday was almost instantly cancelled), would Dave’s brother be allowed by his job to stay an extra day (family-run business, so extra drama… aka I needed to keep my big fat mouth shut, which I only managed barely by using cookies. Ahem). It was kind of …eek.

Nobody really ate dessert, I guess people liked dinner, it was kind of a downer. BUT the kids were happy, and ultimately everything worked out. The wake/funeral got moved to Tuesday/Wednesday, and the other stuff we just had to let lie until we could figure something out.

Sunday: The Snow Came! With a vengeance. We really almost didn’t believe it was going to come (Jersey forecasters have a nasty habit of promising apocalyptic snowfall that does not materialize). Snow started around 2…then the wind…then the gloom of night…by the morning we had 22 inches of snow! Blowing sideways! It was really insane, mostly because we were so unprepared.

I did appreciate having Sunday as a collapse day.

The rest of the week was filled with schoolwork by me (I am now creating the next part of this course, this is new stuff and I am drowning a speck), digging out (everyone else), and then 2 long days of saying good-bye to Grandpa.

I still can’t believe he’s gone, really. I kept expecting him to sit up at the wake and say something crotchety at us. : ) John Nikischer was a good and loving man, and he will be missed. A lot.

Donna did a marvelous job eulogizing Grandpa, Dave’s sister Laura (with help from Rita) drove nearly through the night from Cleveland (the nearest airport…nearly 10 hours away) to get to the funeral home just before we left for the church, and Dave’s brother WAS allowed to stay (phew! I was running low on cookies! ; ) ). It was a beautiful, bittersweet few days.

New Jersey was pretty paralyzed by the blizzard (again, weird! It snows here, often, I don’t know why things were such a mess…getting to and from the wake was a challenge, even 2 days after the storm. Streets were not plowed, it was crazy). I hardly left the house, but still didn’t get a ton done.

The kids did have a fabulous night away with my in-laws, and Dave & I got to see Les Miserables this week (a new staging, which was cool), and we celebrated the New Year at my sister’s house, which was fun. The girls had their first “stay up to midnight” moment. : )

A little before 12 on New Year’s Eve, Dave and I were talking about how we kind of hoped 2011 would be better than 2010. (I’m not the only one here still a bit heebie jeebied by the last few months, apparently). Genna was sitting close by, and she said, “It won’t be, I’m going to have to start chemo again in 2011”.

?

I’ve got nothing. What do you say to THAT?

Ok, being me, I instantly said about 8 things to that, including, “no you won’t, you’re doing great!” and other half-hearted platitudes.

But really, this statement fuels my one resolution for the year. Ok, my one Important Resolution (beyond “I will write in my blog” and “I will try to declutter for good!”):

I have to manage my own anxiety/sadness better so I can help Genna more. (Guessing for anyone who reads here that my lack of zen is not actually a huge newsflash. Ahem.) The fact that she is so worried, so constantly upset about this, just tears me apart. And the worst part is, she could very well be right. This is life with NF. This is what it means, as much as I try to deny what NF does, as much as I try to mentally pretend that Everything Is Perfectly Normal Here, pay no attention to the tumors behind the skull…NF is always with us. And now Genna knows that.

Ugh.

I need to channel that frustration into our work for the Coffeehouse. After some schedule drama, we are on for March 5, 2011 : The 6th Annual Coffeehouse for a Cure. I’m not going to lie, I am so tired, and so…just wrung out. I wish we could just go to somebody else’s Coffeehouse. But just like I have to get a decent pair of sneakers this year (add that to the Resolutions) and at least “run-ish” in April at Asbury Park, I have to get off my ample backside and get a move on with this Coffeehouse. I cannot expect someone else to do what I need to do for my children and husband.

I may not be able to fiddle with microbes and genomes and unravel the mysteries of NF (glad some people can, even if I wish they would hurry up already!) I may not be able to go out and raise $100,000 and have celebrities give speeches and do That kind of advocacy (glad there are folks who can!). But I can bake cookies. I can find bargains for baskets and wrap them and make pithy signs. I can ask people to come and sing and recite and do Coffeehouse things.

I can tell our story.

And maybe that won’t help us find a cure, but at least I can know that we’ve fought our piece of the battle. We may not win, but we won’t stop fighting.

Now maybe I should go write those begging letters, I have to mail them by tomorrow…

Happy New Year, all. May you and yours be blessed with good health and happiness.

Peace,
Kristin

Friday, December 24, 2010 10:04 AM CST

Merry Christmas, all...

The week has been sliding away from me, as so many weeks do...two days ago we lost Dave's grandfather, so I am less together even than usual. Grandpa N was quite old, and really wanted to be with Grandma, but it is still very hard to lose someone we loved so much.

Dave was particularly close to his grandfather, he grew up spending a lot of time with his grandparents. He visited Grandpa Sunday and then raced up there Tuesday night when things looked bad...so at least he got to say his goodbyes.

My kids are sad, I don't think they'll really understand until we are at the wake and funeral on Sunday/Monday.

Rest in peace, Grandpa. You were a good man, and always very kind to the extremely shy and randomly cynical Irish gal who married into your German/Austrian family. I never knew polkas until I met you, I loved hearing about your childhood in Austria, and most of all I love how you enjoyed all of your grandchildren.

peace....

I have to also mention the extreme fabulosity of the Nutcracker performances this past weekend...to have Genna and Rosie get to be a part of something so wonderful, so sparkly and joyous and amazing just did my heart good in what has been a challenging season. I'm really not that into ballet, but watching them in this show...and ALL the fabulous dancers who actually DO ballet en pointe and everything...stunning. I am so very grateful to Joanna & Allegresse Dance Company for creating such an inclusive, high quality, imaginative production.

We loved it. : ) And if you find me on Facebook, I have video there.

As we get into the crazy of Christmas (I should so be washing a floor right now!), know that you all are in my heart...we are so grateful for the gift of all of you we've met through Caringbridge...a gift that stems from the hard thing we have here. We are grateful.

Finally, here's my new favorite Christmas song (from memory, so if I screw up the words, sorry!)...it is sad, but reflective of the hope and joy that survive even the sad.

peace and Merry Christmas, all...

I brought my tree down to the shore
The garland and the silver star
To find my peace and grieve no more,
To heal this space inside my heart.
And on each branch, I laid some bread,
And hungry birds filled up the sky.
They rang like bells around my head,
And sang my spirit back to life.

One Tiny Child, can change the world,
One shining light can show the way.
Through all my tears for all I've lost,
There's still my joy on Christmas Day.

The snow fell down on empty sand,
There's tinsel moonlight on the waves,
My soul was lost, but here I am...
so this must be amazing grace.

One Tiny Child, can change the world,
One shining light can show the way.
Through all my tears for all I've lost,
There's still my joy on Christmas Day.
There's still my joy on Christmas Day.

(The Indigo Girls)

peace,
Kristin, David, Andrew, Genna, & Rosie

Wednesday, December 15, 2010 7:39 AM CST

Hello from the Update Slacker of the century.

Sigh.

Genna is beyond happy about her stable scan. She bopped off to school joyfully telling everyone her good news. And it is good news. Hello, like “you don’t have to start chemo” is ever BAD news? I know. Genna said about 8 times on scan day that she “just wanted to go back to school with good news”…

In some ways the pressure of telling scan results to everyone who is hoping for us can be crushing. Not that we don’t want people hoping, not that we are suddenly turning reclusive…but it’s hard to squash peoples’ hopes. I am glad this time we did not have to.

That said, the report came yesterday.

MRI reports are curious beasts, full of ginormous multi-syllabic words and, in Genna’s case, a perpetual internal debate about what the heck is going on. G’s report READS generally stable. It also reads “things are a-festerin’”, which is unsettling to say the least. Words like “infiltration” and “slowly grown” and worse…these don’t fill a momma (or a dad, for that matter) with ho ho ho and falalala.

This time Dave & I are both kind of impersonating speed bumps, which is a tad eek. If DAVE is speed bumped, we are truly not in Kansas anymore.

But for now, we wait. On January 20 we will check G’s vision, to make sure all of the festering is NOT affecting her. If it is, that’s a whole different ball game. Rosie will scan that day as well.

Rosie has been having some issues with her ear…of course choosing the day AFTER the scan to follow up on that was perhaps ill advised…alas. I am trying not to go to THAT place right now.

Failing, but trying hard!

I am sorry, THIS kind of update is why people stopped reading this page! I get it, I really do.

This kind of update is also why we will never stop working for a cure. Ever. As my friend Norma said a few weeks ago at her fundraiser for Caring For Kids with Cancer, “I can never give up”. Truth.

In MUCH jollier news, the girls are both very excited about the upcoming Nutcracker performances this weekend. Rosie and Genna are in the party scene and the Gingerbreads. Genna is a Lead Gingerbread, and she herds her little 5 and 6 year old ballerinas with an iron fist. Heehee. She even has a solo…picture that for a moment. She is vaguely spherical in her Gingerbread leotard, and smiles beatifically (when she doesn’t have her tongue stuck out in concentration…both she & Rosie do that, it’s pretty funny, we all laugh about it, Genna included). The time commitment has been kind of brutal the last 2 weekends, but I have stayed at the rehearsals and the dancing is spectacular.

Yes, that’s when I know I have weird issues, I can’t leave my girls there that many hours alone. They have needed me there (both Genna and Rosie had extreme issues trying to get into the stirrup tights for the Gingerbreads…also a funny moment), but really…my friends all leave their kids.

Just in scan season, I am confronted a LOT with the fact that every second is precious, every moment is so so precious.

Which really means I should not be impatient with Genna as much as I have been…sigh. She is such a good girl, I need to be a nicer mom.

We are kind of in epic fail mode for Christmas prep thus far: no cards have been sent (and I ordered them in August in case we had to start treatment!), I have only just started cookies, our tree finally went up this weekend and promptly fell over 2x, smashing ornaments I’ve had since childhood, we aren’t done with the little gifty things for friends and relatives, our Advent candles came a week late, I tried to actually get something festive to wear for Christmas (Mondo-esque, for my PR buds), and it was kind of too big even though I measured my stupid self and everything, blah blah blah. My teen has been having significant, serious issues that are also clouding everything. I have to make the next week be the BEST ADVENT EVER so we can get to Christmas with joy. I hate when G asks if I’m excited yet and I have to say…”well…”

If I can survive the next few days, full of appointments and rehearsals and performances at school & ballet, then MAYBE by Monday or Tuesday I can breathe again. I hope. Rosie keeps giving me Daily Countdowns to Christmas…thank you, Rosebud. Aaaaaaagh! : )

I need to watch Muppet Christmas Carol and blast festive music and just think about how happy I really and truly am to have my girls with me. Every second, even when they are making me berserk and a half.

To our big sisters at RU LAX, good luck with finals! To all of you, I hope the next week is full of joy for you. If I actually get my rear in gear and get baking, maybe some of you will get cookies (Marta, DEFINITELY you all! : ) ).

Wishing you all peace, and please, just pray for us or dance by the light of the moon or whatever. We just need a little oomph right now, it’s like we’re climbing and climbing and climbing Everest and we just realized we’re only at Base Camp 2…
Peace,
Kristin

Monday, December 6, 2010 3:05 PM CST

TUESDAY:
Stable. Complicated, but stable.
G was a trooper...fought sedation as always, did great in the scan, ate like a hog (yes, Dave got 2 bags of Doritos for her), made snowflakes in the renovated playroom, read books to another little girl, gave cookie dough truffles to Dr. B and the nurses, and then finished the day by pulling out her own IV in a fit of impatience (and a lot of giggling while I hollered and tried to find something to stop the bleeding). Left home at 5 a.m. and got home at 7 p.m....now she is up doing homework, can you believe it?

So we are relieved...but a bit flattened, to be honest. Areas of concern are still concerning, there is so much tumor everywhere...but for tonight, G is so happy with stable, and we will be too.

Thank you for your prayers and support, I need to go become one with my couch.
peace,
k

Howdy, all.

Happy Monday. Happy St. Nicholas Day.

I know I have a bunch of interesting and witty things to say, but I don’t much remember what any of those things are. The weekend was insanely busy, and I am woefully behind in preparing for Christmas. Certain things we need to deal with here are proving to be easier talked about than done, and that spills over into everything else…
But we are generally chugging along.

Tomorrow we leave somewhere around 4:45 a.m. to get to CHOP by 7. G goes into her scan at 8:30, we should be done ish by 10. Right now she is making horrible faces at me because tonight we are having delicious stew at my mom’s…G is always and forever thinking about food.

ANYWAY, we see the doctor mid-afternoon, theoretically.

I don’t have a whole lot of anything to say about this. I just don’t know WHAT to expect. At all.

Well, let me rephrase, I don’t expect anything particularly Good…

Between other stress, and Rosie’s weird ear issues and random stomach pain, I’ve hardly had much time to even think about tomorrow. Last night Genna told me she was worried, she doesn’t want to have to start chemo again.

Yeah.

I am finding it very, very difficult to have any holiday joy this year, and that really irritates me, because I LOVE Christmas. Too many of our friends are in a bad way. My healthy kid is going through a very rough patch. My niece is having issues with her back again. My 12 year old is worried about chemo. It just isn’t right.
That said, my girls are VERY excited for Christmas. That, in the end, will likely be the thing that saves my hohoho.

Now G is worried about having jello for the morning, so I better run. The just-in-case bag is packed, my hospital day bag is mostly packed, G just needs to assemble her tote, and we are going to make a treat for Dr. B. I guess we have to do tomorrow. I guess I can’t just pretend tomorrow is NOT just a day away.

Please pray for Genna tomorrow.

Thanks.

Peace,
k

don't worry, I packed my Cadbury. ; )

Tuesday, November 30, 2010 3:59 PM CST

Hi, all.

I hope everyone had a nice Thanksgiving. We ate piles of food with my parents, and aside from several rough days with one of my children (sigh), the weekend was nice. Just insanely busy.

We did go to the Short Hills Mall for the CTF Porsche event, we met the kicker for the NY Jets (his 10 year old cousin has NF, a bad case), and my girls did NOT announce they are Giants fans, so that was good. They signed their names on the car, and Rosie drew little hearts by Sandra’s name. We got to say hi to some other NF families, and my boys marveled at the fact that ties at Neiman Marcus cost $215. For one tie, not like ALL the ties together. E. G. A.D.S.!

Saturday night I took Genna to a CD release concert by a friend of ours…his mom was G’s first grade teacher. I remember when he was in kindergarten, now he has two kids of his own. Eek. Tim Margiotta, Make a Venture…nice CD, great concert.

Sunday we got our Christmas tree (it’s out back in a bucket of water, I have to have the calendar read “DECEMBER” before I put a tree up!) and then took the girls to see Tangled (super fun).

Busy busy busy.

Things have been pretty challenging here with one of my kids, which kind of saps my will to live, but as David Bailey said, we have to keep on keeping on. One week from today G will scan. She is literally losing sleep NOT over the scan and all it holds, but over missing school and having to make up schoolwork. Yeah. If only her brother had ONE SPECK of that…

It will be what it will be, but we’ve had a LOT of bad news with our friends recently. I feel like that never bodes well. I know there is ZERO logic to that, but it is what it is.

Maybe because of all of this, today is kind of whomping me.
Six years ago today we found out Genna’s first chemo had failed.

She had scanned on the 29th, and we came home to wait for results. I was really struggling with life. G was losing vision at an alarming rate (she tested about 20/400 then in her GOOD eye) and school was a nightmare. She wasn’t sleeping, she was so unhappy, her OCD was barely manageable.

I started calling clinic at 9 a.m. that Wednesday morning, the nurse who answered said she’d ask the doc to call…every time the phone rang all day I jumped out of my skin, my heart racing. Finally I called clinic again, the nurse got irritated with me and told me She Would Let the Doctor Know (yes, 6 years in THAT moment would play out differently, I don’t take no for an answer now, and I Do not Take Attitude). Finally at 6 Dr. B called…

I really believed it would shrink, even if just a little bit, just a speck, I believed it would. For 7 out of 10 kids on that chemo it does…

It grew.

Rather, THEY grew. The secondary speck on the first scan was now a blob.

All I could say was, “of course it did,” in a very, very small voice, and try very hard not to cry.

I just went back and dug this up, from the very beginning of our CB page:

Tuesday, November 30, 2004 2:53 PM CST
Hi everybody.

It's not working. The chemo is not working. The tumor is growing, making its inexorable progress through my little girl.

I don't really know what to say. Right now I have more questions than answers. Next Monday I will meet with the doctor to discuss what chemo we are switching to. There are a few options, but the risk of secondary leukemia is higher....but radiation and surgery are really not options.

Genna's only question was "will it hurt?" when told she would need new medicine. I told her no. She was fine then, matter of fact about it.

Please pray for us extra today. Please don't take it personally if I don't answer e-mails or calls.

Thank you,

Kristin

I wish I knew why now, today, this hurts so much. I think, honestly, that was the first time I really thought we wouldn’t beat this, that the dang tumors might beat us. A piece of hope died that day, one I’ve never gotten back. In all of our other ups and downs and UPS and Down down downs we’ve had our game face on and slogged through, but the tiny voice of that cold November night whispers in my head…

It grew…of course it did.

We are a world away from that now, and Genna is SO MUCH BETTER. She is reading her English homework on her Kindle right now, she loves helping make dinner, she loves her art lessons and music and Being Involved in Anything. I am so grateful…and yet I know, I know for a fact how precarious this is. We are so lucky, and we have no guarantees.

And that scares the wahoozies out of me on a cold November night.

I better go make some dinner, even though I’m the only one who likes potato soup (loves potato soup, really), we have dance tonight and a lot of holiday stuff to get ready. I am already behind and the season has hardly started.

But we are so glad for all of you, so glad for you who stick with us even when I am oozing despair (seriously, if you see me in real life I will tell you I am fabulous, no worries, I only ooze online. Usually. ) Maybe we will kick some MRI butt next week. Maybe we will confound the statistics AGAIN. Maybe…

Maybe the good memories can speak up a little, the sad/bad ones are just so noisy right now…

But Thank GOD, only for me. They are noisy for ME, and if that means G isn't worrying, THAT IS OK. So there.

Peace,
Kristin

Tuesday, November 23, 2010 1:22 PM CST

Hi, all…

With Thanksgiving the day after tomorrow, I figured I should get my sorry self together and update. In light of Thanksgiving, I will try to be cheery. We do have an awful lot to be thankful for.

Genna did remarkably well in her first quarter of school. Somehow changing classes has been ok for her. I know her teachers are all really working hard to make things work for her, and the resource lady has been G’s frequent companion (to G’s delight…I realized after a few weeks that Lisa was feeding G snacks and treats every time they worked together, Genna is beyond so shameless). I am so glad and thankful that so far school seems to be ok, and everyone seems to be working together.

We had some issues with the supplies G was supposed to get at school, inexplicably meaningless conundrums over Really Simple Things. I was about 2 seconds from calling Someone, Anyone, and laying it on the line. But then G’s Uncle John saved the day (and the ear of some county employee) and sent G a large Kindle. Now we can get her any of her lit books for school and she can enlarge the font to the size she needs. She LOVES it. It is such an amazing device…I was literally speechless when we opened the package, it was a total surprise and truly is a giant door opening for G. We can also load audio books on to it, so if that continues to be a help to her we can double load the thing. We are so thankful for John, and for all of our family who is there for us in so many ways.

Being back at work is something I’m certainly thankful for. While my little job doesn’t bring in big bucks, it is my passion, to teach…and it keeps my brain busy. I am thankful for my wonderful class this year (they are a really nice group of kids) and for the opportunity to think about things other than NF and brain tumors.

I am thankful that Rosie no longer needs to be held down while getting dental work done! She has had her first 2 orthodontic appointments, my baby needs a “palate expander” since she apparently did NOT inherit her mother’s big mouth, just her big teeth! The tech said Rosie was a remarkably good patient (I am SO THANKFUL, as the one who used to have to hold my screaming child down while the poor dentist tried to fix her teeth). Rosie was cheerfully telling the tech all about how she used to have to go in a back room at the dentist with the door shut so her screaming wouldn’t scare the other kids. Urgh.

I am increasingly thankful for the internet, as my time seems to shrink; between school research and Christmas shopping, I have been getting my money’s worth out of Fios!

In what’s been kind of a tough season here, at least on the Mom Being a Normal Functioning Human Being front, I am very grateful for all of our friends in the brain tumor community. We lost another friend on Sunday, another long time, “benign” brain tumor kid. This sucks my hope dry, I’m not gonna lie. But I am so grateful to know these families, to know these children…I am so grateful for the time I have with my own children, even though my bt kid has been making me a speck berserk. We are so lucky for TIME, so very lucky, and I am thankful.

Cadbury Chocolate Christmas Balls are on sale at Target. Yup, thankful.

This week we are having Thanksgiving with my family, Dave & Rosie are hitting a Rutgers game, we may try to get to a Racing 4 Research event at the Short Hills Mall on Saturday (yikes! But my girls’ names are on a special CTF Porsche…we need to go. I should go park my car there NOW, it’s going to be a nightmare Saturday afternoon! And what the heck do you WEAR to something like this? Short Hills is mucho Swanky). Rosie desperately wants to see the new movie Tangled, and G wants to do some Christmas shopping. I am thankful to be busy.

Two weeks from today, Genna has her MRI.

I am thankful for excellent medical care, and a world class hospital. That’s all I’ve got on that.

Did I mention that Cadbury Chocolate Christmas Balls are on sale at Target?

Anyway, I hope you all have a wonderful Thanksgiving. I’ve said it 42 bazillion times before, but I am thankful, so thankful, for all of you.

Peace,
Kristin

Sunday, November 7, 2010 8:52 PM CST

Hi, all.

I know. 2 weeks? Sigh.

Not been the best couple of weeks for me, so, sorry. Alas.

The girls very much enjoyed Halloween. Genna obviously was a chef, Rosie a Rutgers cheerleader (someday I will write a bestseller about how to make costumes from $2 craft store t-shirts!). We didn’t trick or treat too long, it was chilly. But they enjoyed the day. What’s not to like about candy?

We’ve had a bunch of appointments the last week or so…dentist, Miss Nora, the orthodontist…dance lessons, school, another business trip for Dave. Life keeps hurtling forward.

G has really, really been struggling with food.
This weekend Andrew was on retreat with his school…and we headed down to Philly for the Race for Hope.

I always find that event to be a huge mix of inspiring and hooray and hard all at the same time. This year I was so not together, I didn’t push to organize a team, which was kind of sad, but my dad & my sisters Anne & Elizabeth made a huge effort and joined us there, which meant so much to me. Everyone is so busy, it really means a lot that they came.

It was REALLY cold this morning, but we bundled and got to Philly by 7 (eek!) and finally found parking. The event has grown SO much since the inaugural run in 2006, from about 1000 people to over 6000. This year the course was different, much nicer really. Still, G was Extremely Reluctant To Move, to say the least.

About ¼ mile into the race, Genna was DONE “running”. Ouch.

Then, to our delight, Mary from RU LAX popped out of nowhere! She got G to move…and kept a continuous stream of Human GPS work going for the other RU LAX girls , one group was sprinting after us, the other was on a scenic tour of Philly. ; ) When everyone found us, around the 2.25 mile mark, Genna REALLY needed the extra encouragement. Having the girls with us MEANT MORE THAN WE CAN EVER REALLY SAY. Really. You all need to know how much it means. On a Sunday. At the crack of dawn. When you are in college. On your free day…to come to Philly to try & find a kid so you can run with her.

It’s huge.

G was wearing her RU LAX sweatshirt as layer #7, perfect!

Crossing the finish line…Rosie sprinting ahead, Genna galumphing along…a triumph.

Thank you AGAIN, RU LAX Sisters…

And then…all the teams running in memory of kids, of moms, of friends, of dads. It is really, really hard to look carefully around. This is a peculiar event, unlike the NF runs Dave does. Those races are big races with NF teams participating. Race for Hope is ALL brain tumor families and friends. Over 6000 people who know firsthand the pain and battle of brain tumors. Can we just find some kind of cure already?

Yesterday a longtime low grade bt kid went on hospice. Today another friend lost her daughter after a 14 year brain tumor battle.

There are no words for this.

So, we will run. And talk. And type. And just let people know this isn’t ok.

Still, Genna is doing ok. School is going well, and she is enjoying her activities. Just food and exercise are a problem right now. We are about to the 4 week mark from her next MRI.

I am so tired tonight, I probably should just go to sleep. But please pray for our friends tonight…and especially Miss Gabbie who has a birthday coming up! We love you, G…(and your super mom, who is forever wearing the yeti for MY girls… always in my heart)…

Peace,
Kristin

Sunday, October 24, 2010 9:59 AM CDT

Hello, all—

Happy Sunday.

Just figured I should acknowledge that some things in life are Very, Very Good Medicine. The week was a little yikes again, I need to get myself Together (yeah, we can all sing that oft-sung refrain together now), but yesterday Dave & the girls and I headed to Rutgers for the Women’s Lacrosse Banquet and a scrimmage against Monmouth.

Rutgers Women’s Lacrosse is very good medicine.

Admittedly, a brunch buffet AND getting to hang out with the super-coolest girls in Jersey are two of Genna’s favorite things no matter what. But really, the positive attitude, the can-do spirit, the family atmosphere of all things RU LAX just make us so happy.

We did find it funny to see all of the girls in “civilian clothes” at the banquet, G was boggled. She has TERRIBLE visual recognition, I need to tell all our RU big sisters that (so if you see this…don’t take it personally when she calls you all the wrong names!). G KNOWS everyone. She knows the girls’ numbers when they are in uniform, she knows everyone’s names, she just CANNOT put names with faces. It’s kind of yikes after a bit (sorry to Emily, who chatted at extreme length with G in the stands and then G had no clue who she was talking to…and Faith, who G did not recognize with her hair down! Sigh). But really, she loves everyone, even when she gets confused about who is who.

The day was gorgeous, the game was great (RU smushed Monmouth, who Rosie dubbed “the hitting team” because they kept glonking our girls!), and of course Genna nearly had to be restrained at the sight of the outrageous tailgate.

RU LAX is just really, really good medicine.

From RU we raced to Readington to get Andrew at what ended up being the last game of his season, a tough loss to quite possibly the most obnoxious team ever. I don’t know why parents and coaches encourage horrible behavior. ..and this team has been like this for YEARS, Andrew used to play them in his AAU days. All I can say is, you don’t see college or major league players shouting insults at the opposing team in a constant refrain, JOINED BY THE PARENTS…un-be-lievable.

Stepping off the soapbox now. Ahem. Just glad Andrew maintained his temper. A lefty throwing 82 miles an hour needs to maintain his temper.

I am still struggling with school stuff for G. We’ve had issues getting the promised funding in the form that can help my kid, which is a district issue NOT an issue with her school. Still, I am about ready to write some letters. An electronic reader is useless if it’s the wrong one (ie the one with the small screen!). Asking for Exact info on what needs to be procured (like item numbers, vendors, prices) and then saying it can’t be procured (???) is not acceptable to this increasingly frustrated mother.

And this is the norm for bt/nf kids, so I know I’m not alone, but I am a tad frustrated.

Last night Rosie tried out for the performance company at dance (yeah, yesterday was VERY FULL)…and Miss Joanna said the peeking Genna could come dance too. To my utter surprise, Genna totally got into it and now wants to dance with the crew! Woohoo! Active-ness! Really, who Wouldn’t want to dance to the Scooby Doo theme? ; )

So today Dave is in DC (just finished a ten miler) and we are going shopping for our Appalachian family and maybe some sparkly shoes. Now Rosie is giving audio captions to a photo album next to me, geez I had long hair, now a pic of Rosie wearing a bunch of rosaries Mr. T style, a pic of G-before…sigh.

But I am going to keep the joy of yesterday if it kills me.

A special shout out to Coach Laura, running the NY Marathon with NF Endurance in 2 weeks! Go, Laura! : ) And Mark Blumberg, also running that day…Go, Mark!

A special Happy Birthday (belated, how else? Sigh) to our dear friend Marta, who we love so much.

Finally, please pray for injured football player Eric LeGrand at RU. Yesterday all the girls on the RU LAX team wore #52 for Eric. Dave saw the injury happen at the game last week, he said it was horrifying and instantly obvious how bad it was. I just keep thinking of Eric’s family at the hospital…

Thanks, all, and I hope everyone can find a pumpkin and some cider today, and find some good medicine in whatever you meet today. : )

Peace,
Kristin

Sunday, October 17, 2010 4:07 PM CDT

I have now reached the level of Epic Fail on Caringbridge updates. I am sorry.

Genna has been chugging along through school. Her grades are not bad, to my relief, she works so very hard. I think maybe switching classes is actually Helping her, somehow. Her behavior issues (impulsive anxiety stuff) seem mitigated by having a different teacher every 45 minutes. Don’t get me wrong, her teacher last year was fabulous, I just find that breaking up the load seems to be good for all concerned.

Food is still an issue. ‘Nuff said.

I did have to have a discussion with the phys ed teacher about G’s ability to participate in gym class…a moment where I realized perhaps some of my own issues from many years ago in the same gym class are perhaps unresolved? You know it’s not going all that well when you have to say “I do actually know more about brain tumors than anyone in this room”…but it was just that kind of day. Heck, it’s been that kind of month. The official word from Dr. B? G is cleared for all activities except piloting planes and race car driving. Seriously. I was so very tempted to just copy this and give it to the folks who were of a different opinion than I , but I restrained myself. ; )

I have really been struggling with school, activities, and reality. I am a perfectionist about school, and my course is new again this year (that is, it’s twice as long). I do not have a textbook (what I need doesn’t exist in a form I think is acceptable), and I really want the course to be the best it can be for my students. This is causing me some pretty constant stress. I can’t read fast enough…and I read really fast…it’s just frustrating. I’m also doing activities with the seventh grade social studies class…at the end of the day…after gym. This is giving me some moments (again, I know I am a perfectionist about lessons and such, and 8th period after gym with 7th graders is NOT a fertile environment for perfectionism!). They are great kids…I am just weary.

We’ve also had some regular life issues with my teen and just not enough hours in the day. I have to find a way to recharge or de-stress, or I might go all Crazy Harry (figuratively, no worries about real, actual dynamite!).

In one very nice note, last week was G’s baptism day, and I took her to see MercyMe in concert as a present. The show was fantastic. One of the best evenings I’ve had in a very long time. I think G loved it. : )

Anyway, yesterday Genna and Rosie and Dave and I “ran” our school’s 5k. Dave actually medalled in his age group. Rosie ran ahead and did great. G and I finished about dead last of the runners, I had to pretty much cheer her on the entire way. I wasn’t worn out from “running” (more jog-walk action), but gosh I was wiped out from cheering, begging, encouraging, cajoling, etc. I HAVE to get G more active, but it is such a battle.

In a similar vein, we are signed up for the Race for Hope in Philly on November 7. We are NOT fundraising for this event (I have to get the PDR thank yous in the mail…they are written, pictures are here, I just need to print & mail)…but we are going to be there. If anyone wants to join the G-foRce! Let me know.

I continue to find things I botched with G’s scan…I forgot my goddaughter’s 1st birthday. Well, forget is overstating, I didn’t forget that her birthday was coming, but I couldn’t remember if it was the beginning of September or the beginning of October, and then I was so overwhelmed with guilt I couldn’t ask, I knew I had botched it (the more I thought about it)…and then we checked Dave’s files, sure enough poor Megan’s birthday was September 9. Two days after scan day. Epic. Fail.

In my defense I've never actually met her, and I've only ever seen one picture of her, but still...How do you fix missing the first birthday? FAIL!

Sigh times a million.

I still have some food here from my giant stock up, aside from getting produce, bread, and milk, I’ve hardly had to buy ANYTHING.

The reverberations of July 26-September 7 keep rattling the china here, if that makes sense. And I just scheduled the now 3 months later scan for December 7. Ugh.

We’ve been having ongoing issues over the last few months with Rosie’s ear. Her one ear has a very mushed ear canal, and over the summer she repeatedly got outer ear infections. I got ear drops to dry her ear out after she swims, etc., but now she has the ear all clogged…but I keep trying Debrox, getting little out (I’m afraid to flush her ear, lest the water get really stuck)…then it oozes…

I am concerned. She doesn’t scan again until January, but I may take her to an ENT before then, as per her pediatrician.

Ugh.

Rosie is very thrilled to be doing ballet now, too. Both girls take jazz (Genna is now reluctant, but she has to keep moving!), and both will be in a production of the Nutcracker in December. While it’s a little bit schedule –eek, Rosie is SO EXCITED to be taking TWO dance classes. I’m glad for her, too!

Next weekend we hope to go see our RU LAX big sisters…and Dave is running some race in DC (with his work)…and then the next weekend is Halloween already! I started Rosie’s costume today (a speck), we have less work for G’s. I really, really want to open the candy I bought.

I have to start thinking about dinner. Today was gorgeous (although I was stuck inside most of the day doing Things That Had to Be Done), Andrew and Dave are at baseball, the girls are doing something loud in the driveway.

Thank you all for pulling for us, and for being patient with me. I am trying to pull myself together from this scattered moment, I’m just feeling a bit like the leaves all blowing around. Thanks, too, again, for all your support of Dave’s race. He did raise over $8400 thanks to all of you…and he finally got an NF Endurance jacket, which he is so very proud of. Thank you for hanging with us through all the ups and downs…

Peace,

k

Monday, October 4, 2010 1:16 PM CDT

Hi, all.

Happy October.

Again, I don’t know where the days are going. I am so very tired.

This is not a perky update. I know I depress people sometimes, I’m so sorry, really and truly. So be warned, this ain’t perky.

This Saturday the brain tumor community lost a hero in David Bailey. He brought us hope when we had none. His music, his credo to “love the time”, his story of survival gave us so much strength. I literally felt like a window opened in the darkest of places. When he relapsed last year after 13 years cancer free, hearts broke literally across the world. And still he e-mailed out poems and songs, he kept performing, he kept living to the full, even as he battled so valiantly against the tumor that just wouldn’t admit defeat.

Rest in peace, David Bailey. May your heavenly cup of coffee always be full, may you sing forever with the angels…
http://www.davidmbailey.com

I am really, really sad.

Please, too, pray for our friend Emma tomorrow. Because of NF, Emma is losing a leg tomorrow. She is in 3rd grade, just like Rosie. ..and by all accounts, Emma and Genna could be twins. This operation will make Emma’s life better…but still...I mean REALLY? NF never runs out of ways to hurt kids.

I am really, really sad.

After a while, all of this is kind of a war of attrition, like slogging away in trenches, and never getting anywhere.
We have to find a cure. For brain tumors and NF and things that hurt people who are loved. We have to find a cure.

Sorry. It’s been a long week…a lot of rain, a lot of normal life with my teen, just trying to keep up with my new schedule at school. I am really tired. G has been struggling with food…she got to go to a pizza party & ultimately ended up eating half a pizza and piles of snacks. This is what the brain tumor does to my kid. She can’t help it…but it makes me crazy.

BUT in a happier note (I am sorry to be a Gloom Fest) , Dave & I celebrated our 16th anniversary this weekend. We got to go out to dinner, hit the new incarnation of our favorite cake place (!), and then got to go to Rutgers Homecoming on Saturday. It was just like old times (they played Awfully! : ) heehee) but it was a lot of fun.

And we got to see Emily this weekend, we met her friend Willy (who is very nice, even if he encourages Andrew to do dumb things with hot peppers! Heck, my BIL Mark F. would do the same!). And on Wednesday Cath is coming home…and we’re going to get to see Mark & Melissa Camiolo for a brief hello, which everyone is excited about, even if they are bummed that we won’t see Huck the Great Dane. ; )

I am so grateful for life. I have to find a way to have the happy carry me through the ugh.

We are working on race thank yous…Dave exceeded EIGHT THOUSAND DOLLARS because of all of you. Thank you times a million.

Those are the dollars that will save other kids’ legs, and other kids’ brains, and hopefully let me get to be a Grandma someday. We are so grateful.

We have a full week again, the weekend isn’t too bad…just trying to help G keep up with school is a lot of work, but so far she seems to be hanging in there ok. Her teachers have been so great this year, everyone is really trying to work with us. AND it looks like most of her classes will have Smart Boards soon, which will be great for G (and the other ISP kids).

I wish I had gotten things together for G to get to Camp Sunshine. We can’t go to the Circus this year unless I figure out how to do the multiple trains into the City thing, which I don’t see happening in 3 weeks. However, we WILL hopefully be seeing RU Lacrosse in October, which I am really looking forward to. G loves her Big Sisters so much.

I have to go be productive, this is my one day home this early. Thanks for pulling for us, and for hanging with us through the gloomy days. I have to hope, ala David Bailey, that the sun will come up tomorrow (well, at least later in the week!), and try to keep on keeping on.

Peace,
K

And ps, Rosie still looks super cute with her post-Locks of Love hair! She keeps bouncing and bouncing because now her hair bounces… ; )

Friday, September 24, 2010 1:01 PM CDT

Hi, all.

My apologies for being so negligent about updating. I am struggling a bit with my schedule these days, and leaving for an entire weekend leaves me no moments for school work…so I feel like I’m scrambling all the time. I am determined TODAY to get my house neat.

My schedule is so eek these days, I realized I can’t try to get G up to Camp Sunshine. I dropped the ball on getting the hospital side of the paperwork, and we are just out EVERY single weekend. I need to get my life in order.

BUT ANYWAY, Last weekend was glorious on all fronts!

The girls and I left for Philly within an hour of them getting home from school. Traffic was a nightmare, and the girls were a bit antsy in the car (somehow the DVD player from Mrs. Blumberg had not charged, so they were movie-less—not that we’ve ever HAD a DVD player in the car, but Rosie felt the loss of movie acutely. ; ) ). By the time we got to the hotel the girls were RAVENOUS. We had no trouble FINDING the hotel, and even managed to consolidate our piles of stuff (2 suitcases—one full of fruit & drinks, one with all our clothes, 2 misc. bags, the signs for the race, and my backpack). This was our first time travelling just the girls, and both Rosie and Genna were a little weirded out not having Dad there!

Anyway, the hotel is this odd 1960s circle shape, and we were on the 26th floor! Our room overlooked Logan Square and the Benjamin Franklin parkway all the way to the Art Museum. It was spectacular. I had some agita watching Rosie bop around on the balcony, but even I had to sit out there and just look at the city. So…beautiful!

The next morning we grabbed breakfast and then went for a walk to Logan Square, we looked at the fountains and watched the guys setting up for the race. Since this is a Rock N’ Roll Series race there are bands that perform along the course, so the stage setups were Saturday.

After a few minutes we decided to bop into the Cathedral that was right there. Normally we race in AFTER the race, exhausted and rushed, so I decided we could check it out.
The girls liked all the pictures and windows and statues, and then a tour guide found us. She brought us down to the crypt (Genna was impressed by all the Latin), showed us the 1920s hearing aid built into the old school confessional (which my girls were mesmerized by), and answered our questions. It was such a treat!

I’m a cathedral nerd, what can I say? Architecturally, artistically, and religiously, I just find cathedrals to really be good for my brain.

Next we hiked to a little bakery (Rosie was giggling and dancing around, I told the lady she could likely see how often we visit a bakery—NEVER!), we got a gigunda Oreo cupcake to share with the family…THEN we hiked off to the Expo.

Genna probably got in about 3 miles of walking on Saturday, shhhhh!

I realized as soon as we got to the table and met the NF Endurance folks that my overwhelming personal shyness MIGHT not be an asset for working the table! ACK! But after a little while, I finally found my niche (I let the pros do the recruiting, I gave the medical/mom side of the story, trying NOT to make people cry. HOW DID MY LIFE BECOME THAT STORY??? Sigh…sorry, it’s been a tough couple of weeks on THAT front). ANYWAY, we had a great time!

Eventually Genna & Rosie got bored, so I sent them on shopping missions: find me a pair of socks under 5 dollars! What’s the cheapest belt here? The only problem: Rosie brought me back a water bottle to show me…ACK! Bring it back, bring it back! (but she was so sweet).

Finally Dave & Andrew arrived. We finished up at the Expo, had a bit of time to eat the cupcake (cake was ok, frosting was epic), and then went off to The Best NFE Pasta Dinner I’ve Ever Attended!

The morning of the race dawned brilliantly sunny and bright. The hotel ran out of coffee for the racers (HORRORS!), but Dave felt good. The course was different this year, so we had to walk a bit further, and the finish was at another spot. This was good for Dave, who still has lingering Ughs about 2 years ago. I actually paid $2 to get tracking messages this year on my cell phone. So I knew EXACTLY when he started (but they missed the 5K mark, which gave me palpitations). We had arranged for me to give him a drink at the 5 mile mark (the Nuun tablets he likes), so I felt ok about that.

The CTF team was 80 members strong, I AM SO FLIPPING INSPIRED BY ALL OF THESE PEOPLE! Thank you, NF team.

In one cool moment, just before the race start, all the professionals came out from somewhere to get to Corral 1…and ran right by where we were waiting. The gentleman who won (in 60:15!) ran RIGHT by us! So did Olympian Ryan Hall, and many others. You can tell by their insane
sneakers.

Thankfully Dave’s race went without incident. As the temperature climbed, I got a bit nervous, and when he was 4 minutes later than I expected finishing I was trying to breathe. Especially after a woman passed who looked a bit like he did 2 years ago, staggering…But DAVE FINISHED SUCCESSFULLY! 1:49:59 was his official chip time! He knew he was running slower in training (wish he had told me!), so he was happy with this!

And I have to say, cheering for the runners who came in ahead of Dave, the NF team folks, pretty much made my life. High fiving someone at mile 13 who just ran for hours in the hot sun for A CURE FOR MY CHILDREN AND ALL THE KIDS ON DAVE’S SINGLET AND ALL OUR OTHER FRIENDS just ranks in the “woo!” category of life. Awesome.

All in all, the whole thing was wildly inspiring, uplifting, and fabulous.

Thanks to all of you, Dave raised over $6000 towards a cure. With this BLESSING of time we’ve been given, this unexpected bonus of time to search for a cure, I feel almost frantic in my need to get it done. We have to find a cure.

Heck, I ran 3.2 miles on Monday in a fit of “I Can Run Too!”. Then I felt like road kill. ; ) And the rest of the week imploded, no running until a tiny 20 minute run today. Ergh. But I DO want to do more for NF Endurance. We have to find a cure.

Sigh.

Genna is doing ok with school. I’m searching for audio versions of some of her texts, I’ve been doing a lot of reading for her. She has been a little INTENSE recently, but transitions do that to her.

I’ve been a little intense too, I guess. Or a speed bump. Depends on the minute.

And yesterday, my Rosebud did LOCKS OF LOVE! She donated a 10 inch ponytail to Locks of Love, which makes hair pieces for kids who’ve lost hair due to illness, chemo, radiation, etc. I am so proud of her. Dave’s been away on business, he hasn’t seen her yet…she is SO CUTE!

Thank you all for all your support. We are slogging along. I’m struggling to get things back together here, as I said. We really still haven’t gotten our feet back under us since scan day. With the start of school and such busy weekends, I feel like I haven’t had a minute. At least I’ve hardly had to buy any food! ; )

I may get on some part of a retreat this weekend (oh, how I wish I could retreat for a long time), and then we have a pediatric cancer event in Lambertville tomorrow, and maybe our parish picnic on Sunday? But right now, I REALLY have to clean!

Peace,

Kristin

Sunday, September 12, 2010 9:13 AM CDT

for those lost on 9/11/2001…we will never forget

Hello, all.

Thank you all for the outpouring of prayers and support over the last 6 weeks. We are so humbled by all of the love shown to our family during what’s been kind of a dicey time. In the last few days we’ve seen more and more just how many people have been praying for Genna, pulling for her, supporting her in thought and prayer, and we are so grateful. I just don’t know what to say…

Thank you. We truly are just so moved by all of you…

And in triumph, on Wednesday Genna started 7th grade.

She is so relieved, she pretty much bounced right back into hooray! Back to worrying about homework, and school supplies, and Will She Get Deterrents (Demerits, she can’t say it) if She’s Late for Class?

A special thank you, again, to RU LAX. What you have done for our family this week, on the RU athletics website (check out www.scarletknights.com and click through to women’s lacrosse) and with Scarlet the Bear arriving can almost not be put into words. You make G smile. What else can I say? We love you all.

I have also realized that hiding a few days after a scan is a good choice for me. Going to work the first day proved a daunting task.

For whatever reason, I’m having some difficulty bouncing right back this time. Everything in my house is screaming of the preparations we made for treatment. Even the way I looked at my calendar has changed. And I KNOW IT IS GOOD. I am so grateful, and very relieved. I don’t know why I feel like I’ve been shaken, not stirred.

This isn’t our first scare, but it’s the worst we’ve had in a while. My friend Sherry-Lee describes it well, the days after scan are like an adrenaline dump, you are so keyed up for that day and all it holds, when it’s past things just kind of fold in on themselves.

The scan of Tuesday was stable, and stable is so good. Stable DOES mean that it was EXACTLY THE SAME as the scan of woe in July. This is really hard for us to wrap our brains around. I spent a fair part of the drive home from Philly trying to explain Dr. B’s explanation to Dave. He’s boggled too. We are so very, very glad…and I feel like I have to focus, and get myself more together to think of more ways to raise money and get doctors to focus on NF tumors and how they work. Other kids in non-NF brain tumor world have tumors like G’s. Kids all over would benefit by this research…

I need to get to work, but between school and normal life and this lurking elephant, I sometimes feel like I’m drowning.

I know it’s hard, especially for the folks who caught me the first day or two post-scan, folks super rejoicing for us while I looked like I had eaten a slug. I am sorry. I wish it was less complicated. I wish that we could just embrace it this time and be ok.

But this growth was scary. If we have stable again in December, we’ll feel a little better. But these last 2 scans reminded us again of just how tenuous stability can be, and how little room for unstable there is.

After this many years, sometimes we just have a time where we feel the marathon a bit.

We have a lot of things up in the air about our fall schedule (left that way because I didn’t know what we’d be doing), and I have a lot of things I screwed up or forgot in the last six weeks (as in, we get to the bus stop the first day of school and I realize I missed the uniform change that says kids wear blue socks now, not white…SPRINT HOME ! ack!). I just have to put the pieces back together.

But we DO HAVE OUR FALL BACK. I can ponder making G do our school’s 5K (she is not amused). Rosie desperately wants to do it, Dave showed her an article about an 8 year old who ran a 7 mile trail race and beat grown ups. Rosie is MOTIVATED. ; ) I can think about our trip to Philly next weekend for Dave’s race, and how much louder I will be this year cheering on the wonderful NF Endurance team people, so many of whom have been sending their support over the last 6 weeks. I don’t have to create lesson plans for classes I will miss every 2 weeks…I don’t have to worry about my mini-van finally giving up (it’s getting close) on the road to Philly. We are so grateful for TIME.
To once again quote David Bailey, we just have to count our blessings and “keep on keeping on”.

I have to hope that Dave & I will be able to shake off the lingering heebie jeebies of what transpired over the last 6 weeks. I have to hope that in the time we’ve been granted here we can help raise awareness, help raise $ for research. I have to hope that my hope can be fortified, because right now we both feel a little bit like a house of cards in a strong wind.

Until then, Genna is back to her intense, funny, bossy, loving self. And that, really, is the greatest gift of all.

Peace,
K

p.s. Happy Birthday to my dad, tomorrow!

p.p.s. Dave’s race is next week…if anyone can donate still, the link is above. Thank you all for your support thus far.

Tuesday, September 7, 2010 8:52 PM CDT

TUESDAY short update:
IT STABILIZED. WE DO NOT HAVE TO RESTART CHEMO. .

We cannot believe it. We just cannot believe it. We are a little confused, still a little worried (everything is still there, the growth from last time didn't disappear, but NOTHING IS BIGGER, and that was the magic key for watching & waiting more vigilantly --3 month scans again--and no chemo.

I don't even know how to process this, we are so relieved...

More time to find a cure. More time to fight. More time. That is the most precious thing of all.

Genna didn't get it at first, she didn't understand...it's like a huge weight is lifted for now...

I will try to write more later, but I wanted to put something here...thank you all for your prayers and support. We just are so amazed, trying to accept the phew of today without thinking about the scan too much, if that makes sense. It's the same awful scan as last time: BUT IT ISN'T WORSE. AND THAT IS WHAT WE NEEDED.

peace, and thank you all...
Kristin

OK, I added the longer version:

We left our house at 5:24 a.m. Leaving in the dark ALWAYS stinks. G felt pretty perky, she had jigglers to eat.

We had some odd registration moments, but G got in and triaged, then went to get her bone age scan (which was FINE! Egads!), then back to the sedation unit. The iv was a nightmare, took 3 different spots, multiple sticks, digging the needle around…and she didn’t peep. She hated it, but she was so brave.

At the Exact Moment of receiving the Versed (giggle juice), G told her jokes to the nurses, and then kept asking for hugs. The kid fights sedation like nobody’s business.

Watching her lie on the table, finally asleep, oxygen on, machine beeping, was NOT the high point of my existence. Understatement. Haven’t had a moment like THAT in a while.

Her scan was longer, because of the spectroscopy added, but I actually got some schoolwork done. She woke up AS SOON as the scan was done (popped right up) and did manage to use Miss Ori’s suggestion to get Dave to get her TWO bags of Doritos.

We paid a visit to a friend of a friend who is stuck at CHOP (G loved that), and then up to onco clinic…only to find we had to go up to 5 instead. G was NOT amused, she had chocolate brains for the nurses on 4…but up we went. Bizarrely enough, Dr. B was ready by 1:20!! (and our appt. was at ONE! EGADS again!).

G was adamant, she did NOT want to stay in the room. She had her jokes to tell, her pops to deliver, her pesto to present…and then she was outta there. So when Dr. B said, “It’s completely stable!” G didn’t understand. She didn’t get it that this meant NO CHEMO! She didn’t understand until we were leaving…

My poor G. This has been so heavy on her…

The tricky thing is this: the scan is the same awful yikes
ew scan as 6 weeks ago. BUT because things didn’t continue growing, we are treating this as an odd NF thing…a bit of growth, a stop, etc. We’ve had this happen with another spot in G’s hypothalamus (which is still a glowing comet on the scan)…it grew, we freaked, it stopped. This time was worse (this spot is 3 times as large), but it could be similar.

Herein lies the reason Dave runs for a cure. The stress and roller coaster and what the heckness of this is insanity to live with. We are so relieved, and simultaneously shaken by the whole business. Does that make sense? We need a cure, we need answers to the questions as to why NF tumors can grow and stop so randomly. We need to know so stable can be the status quo for EVERY NF kid.

Anyway, we were DONE at CHOP by 2:30!! I was almost giddy checking out, it was bizarre. We Left Smiling. Confused, but smiling. Dave had to e-mail a few people, and I sent out the first mass texts to family (a heck of a lot more fun this time), G delivered her chocolate brains to Gina in onco triage and then watched Phineas and Ferb and fussed about leaving.

The ride home was long and we are so tired….but stable is such a relief.

Now G starts 7th grade tomorrow…I start teaching (YIKES!)…and I try to wrap my brain around our fall, which we just got back. It’s so hard to express where our heads are tonight…confused, relieved, shaken, happy…I worked so hard to prepare myself for what the docs prepped us for. Now I’m a bit lost…happy and relieved, but just feeling question markish. And emotionally WRUNG OUT. sigh.

And exhausted, that 4:30 a.m. alarm is no fun! Off to bed!

Thank you ALL for prayers and support…thanks especially RU LAX, I read G all your messages…she loved them. I hope we can get down there in October.

We so appreciate you.

Peace,
k

Monday, September 6, 2010 7:58 PM CDT

TUESDAY:
IT STABILIZED. WE DO NOT HAVE TO RESTART CHEMO. .

We cannot believe it. We just cannot believe it. We are a little confused, still a little worried (everything is still there, the growth from last time didn't disappear, but NOTHING IS BIGGER, and that was the magic key for watching & waiting more vigilantly --3 month scans again--and no chemo.

I don't even know how to process this, we are so relieved...

More time to find a cure. More time to fight. More time. That is the most precious thing of all.

Genna didn't get it at first, she didn't understand...it's like a huge weight is lifted for now...

I will try to write more later, but I wanted to put something here...thank you all for your prayers and support. We just are so amazed, trying to accept the phew of today without thinking about the scan too much, if that makes sense. It's the same awful scan as last time: BUT IT ISN'T WORSE. AND THAT IS WHAT WE NEEDED.

peace, and thank you all...
Kristin

***********************************

Love
The
Time.

--David M. Bailey, hope for so many…nearing the end...
my heart is breaking…again…

In 9 hours we will be on the road. I didn’t finish getting things in order here. My school stuff is mayhem. I still can’t see my dining room table. My fridge WAS clean, now it’s back to biohazard. I never made pizza dough.

In 9 hours we will be on the road.

When Rita said to Genna tonight, “have a good scan tomorrow,” Genna answered, almost matter of factly, “I know it won’t be good.” She told me today that she will give Dr. B the present she made, and tell her a joke, and then she does not want to be in the room while we talk.

I told her she can do whatever she wants. Maybe I won’t be in the room either, maybe if I stay in the playroom we won’t have to have any talk.

Which is a joke, we’ve had less than woohoo talks in the playroom before.

Indulged in some stupid retail therapy (well, my feet don’t think so, but my head does), realized while shopping today at Kohl’s with G that if Genna had a bedazzler I would be in deep trouble. ; ) I have her uniform ready for school (still too long, but I can hem it on the weekend if it bothers her), made her jigglers for tomorrow…so busy…so not ready…

My brother was here this weekend, which helped us forget a little. I am so happy when he is here. We all went to my sister’s yesterday for a giant bbq with games and swimming and laughing and fun. I love my family. Genna apparently is a queen at this bean bag toss game, while Meg & I can still jump rope. Who knew?

I want THAT to be our daily reality. Not neuro-oncology.

Been doing some research the last few days, a final frenzy before tomorrow. I do KNOW more now. Not ALL knowledge is power, you know? But I have to have sensible questions. Even if tomorrow G has stabilized, what does that mean? If she hasn’t, which of the two main options are better? She is in such a tiny percentage of NF kids, I’m having trouble finding more than 6 other kids who have even DONE the one drug combo we’re looking at. This is so demoralizing.

Sorry—I know I need to update Something before tomorrow, but I just found out about David Bailey about 10 minutes ago. I do not know how I can tell Genna…(UPDATE: early reports were mistaken, David is still hanging on...still hating brain tumors here...)

We got to see him perform twice: once in 2006, in the midst of the month that was literally the Valley of Death for us. We saw him again I think in 2008? G was doing so well, and he was strong then, he hadn’t relapsed yet, his music made me weep, and hope, and feel like we could win.

Losing David Bailey, I feel like a piece of my hope will just be gone.

I really have nothing nice to say, other than I will let you know tomorrow how things go. We will be at CHOP by 7:30 (hence the ungodly early departure time…leaving in the dark always brings me back to 2004, which is not nice). Scan is at 9. Neuro-onc is at 1 (in the broadest sense of the word. ; ) ). We’ll have a general sense of things tomorrow, no matter what I’d like the tumor board to weigh in, too.

Dave’s race is in less than 2 weeks. I am kind of psyched, and so grateful for all the support. The link is above. Thank you.

And tomorrow, in honor of the 46 kids diagnosed each day with cancer, 46 women (45 moms & one teen survivor) are shaving their heads for the St. Baldrick’s Foundation. The 46 Mommas Shave for the Brave event will be featured on the Stand Up To Cancer telethon on Friday night on ALL the major networks, which is a huge coup for pediatric cancer research. I am so proud that many of these mommas (and survivor Sammi!) are my friends. I – AM – SO – PROUD.

Please pray for us tomorrow, for grace for whatever comes. And as we drive in the dark to Philadelphia, I will raise my Dunkin Donuts cup to the sky for David Bailey (even though he's a Starbucks guy) and pray that his eternity is full of the same joy and hope he brings to so many of us here.

send a hug for my G…

Peace,
k

Tuesday, August 31, 2010 1:07 PM CDT

Happy Tuesday, all. And Congrats to my Aunt Betty, #150,000! We will bring chocolate to our CHOP nurses as per your request. : )

Dave’s race is in less than 3 weeks! Please, please if you can donate a dollar or two, just copy & paste the link above into your browser thingie...every single dollar is one step closer to a cure. Thank you.

I feel a bit like I’m being sucked towards a precipice...so much so that I am forgetting things, panicking about things remembered, and going ninja far too often for anyone’s comfort. Not without merit, but too often for people accustomed to my less martial arts oriented persona. ; )

Several times over the last few days Genna has come up to me, put her head on me, and said, “I don’t want to start chemo, mom”.

In all of the craziness of getting ready for back to school, in the bittersweet celebration of Genna’s 4 years off chemo, and in the lurking monster of next week, I lost track of the date. The end of summer can be like that, but it was only last night, as we drove home from a Yankees game, that Dave & I hashed out What Day It Was.

6 years ago yesterday, we found out Genna had a brain tumor.

There are moments of that horrible day that will NEVER fully leave me. That was the first and only time I sobbed at a medical person on the phone to please, please just tell me what to do...the first time I heard “yes, this IS life-threatening”, the first time someone brought us chicken divan for dinner (and Jen, yours remains the best one we ever had)...

I’m kind of glad I forgot yesterday was yesterday.

Today I took the girls to a flea market in Pennsylvania, (note to self, Rosie LOVES flea markets, uh-oh! but we resisted the bunny table (hopping baby bunnies!) and the tiny turtles (!) thank God!)...and most of the drive followed the first hour of our Philly treks. Remembering that first drive, 6 years ago TODAY, getting into the car, suitcase packed, terrified, clutching directions and a name of a neurosurgeon—a nightmare.

In the craziness of that first day, in working out insurance issues (no, we can’t just drop in at Columbia Presbyterian and pretend we were in the area and she had a headache, she Will not Lie!), we had to wait the 18 hours or so and go to CHOP. As much as I hate the drive, I am so grateful for the care G has received there (and really, traffic into NYC is worse, even if NYC is WAY closer to us!).

I cannot believe we’ve been doing this for 6 years. Half of Genna’s life. Most of her remembered life is this...and sometimes that makes me really, really sad, and
simultaneously really, really mad. Mad at NF, mad at random illness, mad at the case of NF G got (she is in about the 1f NF cases in terms of brain tumor severity). I hate it all.

But we are so lucky. So very, very lucky. And even though it seems like our luck is running out a bit short term, I have not given up hope on long term happiness for G. I want to set up her dorm room someday, I want to help her pick out a wedding dress, I want to be a grandma (the one with a chocolate stash, of course).

I want so much for her.

Last night we were at the Yankees game, the first inning was REALLY long (hello, 50 minutes? Egads!), and it was quite hot out. I was trying to drum up drama for G, it was a full count, 2 outs, so I said, “G, it’s 3 balls, 2 strikes...do you feel the drama?”

“No, I just feel sweaty,” she answered.

I want 50 more years of those funny moments.

I want everything and then some for G.

I want next week to not happen.

I want 6 years back.

And yet, there is (to quote SuperchicK), “Beauty from Pain”. Our NF friends, our brain tumor friends, the RU LAX SuperGirls and Friends of Jaclyn program, Make a Wish, Children’s Brain Tumor Foundation...all these people & programs have become a part of our life only because of the tragedy of 6 years ago. We’ve had a lot of joy. We’ve lost a lot, but gained a lot too.

And I stopped at the Fudge store in Flemington on the way home. Choco covered fruit tonight, a great treat from a place we only discovered when we drove past it 42 bazillion times in 2004 (we finally went IN a couple of years later!...and never looked back).

The last 6 years are behind us, in a file marked Survivorship. The next 6 days lead to our next chapter.

Please pray for us.

Peace,
Kristin

Tuesday, August 24, 2010 3:16 PM CDT

Hey.

Happy Tuesday.

We are less than a month away from Dave’s race…if anyone can donate even one dollar, we appreciate it.

Also, if you happen to be hit #150,000 on this page, can you let me know? To paraphrase a famous movie, There Will Be Chocolate. It’s my happy distraction from the elephant that is actually SITTING ON MY HEAD. Ow.

Just a quick note today, the Camp update is in the archive now, but today is a Big Day for G, a bittersweet kind of day.

4 years ago today G had a scan, it was stable, and our doc told us she thought we should stop chemo a few rounds early.

We were stunned. G had been really having a rough go with that chemo. Between January and the beginning of August she had 24 transfusions (all in Philly), a hideous allergic reaction to one of her chemo drugs (which took us 2 rounds to figure out, it was much worse the second time, poor G!), two hospital stays due to infection and neutropenia, her first ambulance transport, fevers and ugh, and general misery and dismay. She was down to a 75% dose on the 3 drugs she continued to take after we lost the procarbazine, and her scans had been stable a while, so we got the ok to stop early.

We were utterly stunned. For weeks we didn’t know what to do with ourselves. We kept G’s port in for another 9 months, I just could NOT believe she wouldn’t end up right back on chemo.

So G wanted to celebrate 4 Years Off Chemo today.

She said to me, tearfully, this morning, “I want to celebrate because if I have to do chemo again I won’t be able to celebrate for a very long time.”

Insert unprintables here.

Of course her favorite local bakery was closed today, and I just had nothing in me to drive to Randazzo’s (so yummy), so we just went to Kings (an upscale grocery store, too expensive for regular shopping) and she picked out a Butterfingers cake and a little plain chocolate one for Daddy who hates Butterfingers!

Now she is obsessing about making mac n’ cheese for dinner.

Ew.

Still, it IS a big day. 4 years were not without drama, they were not without a ridiculous number of ups and downs. Adjusting to life OFF treatment was rocky. We felt lost and bereft without the medical folks around. As time passed, I had SO much catch up to play with everything. I feel like 4 years went in a blink.

And now we may have to get back in the proverbial saddle again, and I am really not loving that today.

But we have cake, we will likely make mac n’ cheese from scratch for dinner (again, ew), and G will celebrate. We were NEVER promised 4 years. Never. In fact, in February 2006 we were not promised 1 year. So I AM grateful.

Today is just bittersweet.

Back to school planning, etc. etc. Please think of G, send HER every good thought and prayer and happy vibe o’ whatever. She’s the one who has to be tough, and it’s already getting hard for her.

Peace,

Kristin

Sunday, August 22, 2010 12:24 AM CDT

Once again, happy Sunday, all.

Please, if anyone can pass on Dave’ s race link, we appreciate it. No donation is too small, really.

The balance of the universe has been restored, my girls are both home from their respective camps and both were FLYING, just full of stories and smiles and adventures. Today’s been a bit of a crash, but I expected that.

We got to G’s camp first, pickup there was 9 a.m. I almost couldn’t find her, partly because I forgot she had her RU Lacrosse sweatshirt (which she was wearing) and I expected light green, and partly because the girl got herself a Major Haircut.

Now we knew she wanted her hair short. Last year she did Locks of Love, this year her hair wasn’t long enough for that, and I have been telling her she can’t have uber-short hair. I could show her an array of pictures of ME from days of yore to substantiate my claim that REALLY short curly hair on a kid of her age is not always well-advised. Ahem. Think Poodle gone Terribly Awry (before kids & chemical brunette-ness I was a lot curlier). Eek.

Anyway, G found the stylist at salon day who did her hair last year, and after some discussion G ended up with the same haircut the stylist has! They apparently took a “twins” picture, but I haven’t seen it. Admittedly, G’s hair is super cute. It’s short layers in the back that even after a night of sleep look all curly and delicious. The front is a bit longer (so she still looks like a girl). All in all, it is a successful ‘do, and she is Thrilled. We were just surprised!

G had a GREAT time. She performed her 15 Animals Song (her counselors requested a final encore before we brought her home!), she got a sombrero and lots of tchotchke, she actually seems to have made a friend among the campers (she LOVES the counselors, we hear lots of stories about them, but for the first time we heard a lot about a buddy, too). I think she ate with abandon, but we’re trying to rein things in a bit back here.

She literally talked the entire hour and 15 minutes between her camp and R’s!

Rosie was so happy to see us, she bopped over and about and told us all about Campers Got Talent in which she played a fairy and ended her cabin’s production with a full split. Apparently it was better than Cats. ; )

I really missed them both. Now they are both exhausted and kind of crabby (G already napped this morning), but I am so glad they had so much fun. As I came down this morning, G started talking at me before I got to the bottom of the stairs, just like always. Phew. It’s so good to have things back to normal.

My teen is impossible, which is creating stress, and school prep is killing me. Really these two things are more stressful than the Elephant right now. I don’t even have a mental moment to think about chemo and smite…and yet at the same time it is constantly hovering at the edge of my consciousness. I know I have to restructure lessons to allow for the probability of me missing some classes. I also know I am a bit of a perfectionist when it comes to school stuff, I want a solid plan, and right now I’m not quite there.

I feel like I need to wrestle through our fall calendar and start pinning things down, and yet at the same time I feel like I’m back in the rickety old rowboat of “don’t you dare commit to anything more than 48 hours out”. Ugh.

This may be incoherent, my teen is fighting with me as I type. Alas.

I have discovered in the last week or so that I no longer have any Fuse. That is to say, I am a menace to humanity. We had a snafu with G’s school uniform and I went a tad ballistic. Really, it was backordered for 6 weeks and the company couldn’t tell me that when I ordered weeks ago? And there’s no way to tell what the inventory is, and there’s no way to expedite shipping? Say what? I wasn’t impolite, but I wasn’t timidly cowed either. And I did explain that if the day after my daughter has an MRI to see if she has to re-start chemotherapy she had to start 7th grade as the only kid without the right uniform, that would put Me Over The Edge. I never, ever say that to people. I never do. But I am done with random stupid in my life, especially, MOST especially if it messes with Genna.

The fixed uniform arrived on Friday.

Now I moved to another room where the teen won’t follow, so I can hopefully concentrate.

Last night G sat on the deck while I grilled some chicken. She was very quiet. Finally she spoke up, “do you think I’m gonna have to do chemo again?”

How do you answer that? My 12 year old should NOT BE ASKING THAT. I told her quite honestly that I didn’t know. I really didn’t know. She is worried, apparently, that a certain kid at school will be mean to her if she does chemo. Granted, her examples of “mean” are from 2nd grade and playing house at recess, but it was really bothering her. I know she & this kid still don’t get along,which is whatever. I assured her if she does have to start chemo I will come and talk to her class about what is going on, what it means, etc. I will be teaching them one period a week for a World History activities kind of class (to go with their regular class), so I will be right in the thick of things. This seemed to settle G a bit.

But it makes me sad, and mad, and generally just a menace.

I’ve had to start out of hiding a bit, and it hasn’t gone all that well. G’s stuff is so ridiculously complicated, and I feel like for every minute of explanation I can give there are 90 minutes of explanation I avoid or talk around or just set aside.

I’m just a bit daunted, thinking about how all this will work. How will I deal with my teen’s issues when I can hardly keep my head above water with medical reality and school? How can I make sure G gets to dance & do art, her two favorite things, when clinic days are those days? How can I make sure Rosie isn’t lost in the shuffle? How can I figure out which is the better of the 2 protocols we are looking at? How can I keep G happy and help her be healthy if I am pouring toxins back into her again…toxins she needs to win this battle, but still, TOXIC ugh?

How did we end up in this place? Like Yogi says, "it's deja vu all over again!" Ugh.

Today is gray and gloomy, my teen is crabby, and I am drowning in camp laundry, so my mood is not so chipper.
But this week, aside from school prep, I have NOTHING else planned. So the girls and I may go to the flea market near New Hope , we need to hit the library (G has 2 weeks to read her second book for the summer, we are going to get it on tape to see if that helps), and I need to go to Costco, but otherwise the week is open. I REALLY hope to just have some peaceful time with my girls.

Better go back and see if things have settled in my living room…

Thanks for riding along with us. Even though I’m avoiding humanity, it’s nice to know we aren’t alone.

And I notice we’re getting close to 150,000 hits…if you are 150,000, can you let me know? As Tatiana (visit # 100,000) can attest, we celebrate really any milestone of any kind with chocolate… : ) And that is fun to me, it is a lovely distraction from Mr. Elephant who is squashed on the couch with the teen. I think they are fighting over the tv remote… ; )

Peace,
k

Sunday, August 15, 2010 8:08 PM CDT

Wednesday!
Here is the CAMP link for G's camp:

http://www.philarmh.org/photo-gallery/album/article/ronald-mcdonald-camp-2010-2/11/

She is in a few of the first pages (look for the pink sequined cowboy hat, a classic Blumberg Accessory ; ) !) and in a pic from today on page 26...
lots of smiles, hooray!
peace,
k
********************************

Hi, all.

Dave’s link is above…he is running for my girls in just over a month. Please…if you can even send a dollar, we are so grateful. Thank you.

I am tired beyond all get out, but happy Sunday.

After much drama at the end of last week, the girls BOTH safely got off to Camp today. On Thursday we went to the grocery store. Rosie complained of a headache (not a rare thing), both girls were freezing, but the store was COLD. Once home, Rosie asked if I would take her temp…and she had a FEVER!? Then G said, “hey, I feel warm!” and she had an even HIGHER fever! ACK!

Seriously, out of nowhere. Fever. Two days before camp. YIKES!

They may have been exposed to a bug in the neighborhood, but in the interest of charity I am not discussing that here. Ahem. Wish charity had stopped me on Facebook, but whatever.

The girls getting so sick so close to camp put me Officially over the Edge. I was supposed to go out with my sisters on Thursday night, and very nearly bailed. I just couldn’t leave sick kids, couldn’t stop thinking about G missing camp because of a virus (after the last few weeks, it just seemed so wrong), I pretty much descended into hysteria…but Meg dragged me out, told me I was NOT a bad mom if I gave the girls medicine and left them with Andrew & Dave.

We saw Promises, Promises, which I hadn’t wanted to see (the plot synopsis was a downer), but Sean Hayes (Will & Grace) and Kristin Chenoweth (!) were fabulous, the show was funny and charming and we had a wonderful time. I only had a few bleak moments. I am so glad I went.

Friday morning I brought the girls to the doc, in good conscience I could NOT bring G to onco camp if she had a virus. The pediatrician did a quick strep test which came back negative, but G’s throat looked a bit scary, so she put both girls on antibiotic. We so rarely have had to do antibiotic, I was totally ok with random usage here. By late Friday both girls felt a lot better, and yesterday a.m. they were perky perky perky!

Granted, there was a garage sale in our driveway (my sister ran it), so that was very medicinal. ; )

We had to wait to bring Rosie to camp a day late, but she got to go, and so did G. Phew!

And double bonus, we got to have lunch with the Mightiest of all NF Moms, Ori (well, along with Marta. And Deedy. And Reca and Amie and Kara and Ann and and and… And…ok, all NF moms are mighty, Ori just wrote the Book on Mighty! ). It was so awesome to see her! I am a dork in person (I am much better typing than talking, I get rambly and frantic and neurotic), but I am so very, very glad Ori drove to see us (we were in that part of PA). Genna LOVES Ori, especially since Ori gives her all her favorite foods! : )

This has been a tough week in my head. Not sure why now, but it has. Getting to hug a mom who walks the same road means an awful lot. It’s hard to explain. But Ori knows…
And Marta, who I also got to quickly hug at the height of my neurotic meltdown in ShopRite this week…

You all give me strength. Thank you.

Sigh.

So I hope my girls have a great week at camp. After the Summer of Great Dryness today was rainy. I hope they don’t get sick again, I hope G does ok tonight…she gets so homesick…worry worry worry.

I hate when my girls aren’t here.

We are half way through our 6 weeks, and I am floundering trying to pull things together. This week I have to really, really make progress.

This is just such an odd road. Last night I got to wish a very dear friend happy birthday. It was the first time I’ve been in a social situation where I had to talk about G (people asked, people who knew something was up). It was hard. It was really hard to hold it together. Dang.

THIS is why I hide. Not that I don’t Want to talk, I don’t mind, it’s almost harder when it’s to friends from a long ways back. Friends who helped define “before”…I don’t know exactly how to explain it. The party was so good, I just hurt to have to talk about G’s stuff, especially because I know it hurts my friends.

But not talking about it does nothing useful. It doesn’t make it better, it doesn’t make it go away. Sometimes I feel like talking about this shows NF that I am Not Backing Down. Yeah? Scary horrible words? Guess what? I CAN SPEAK THEM. And in speaking them I can fight them. And in fighting them we can win.

Kind of like Harry Potter saying Voldemort. Too bad there’s no Patronus for brain tumors.

So this week I need to Really Pull Things Together. I need a firm handle on school, I need to clean out my freezer (by tomorrow morning! for the Jersey Board of Health has sent a final warning…ok, not really, but today has been Name the Musical in my head, not sure why), I need to clean up the girls’ room (just the beds, clean the floor, etc), make sure the school uniforms are ready, get Andrew to do what he needs to do, etc.

I need to keep MY brain in gear…no wandering. We’ll see how that goes.

Thank you all for your support. We so appreciate you…I am so tired. We spent about 6 hours in the car today, I am incoherent.

Thanks, all…if G’s pic goes up on the RMH Camp site, I will post it here!

Peace,
k

Monday, August 9, 2010 8:58 AM CDT

Hi, all. Happy Monday.

I am avoiding the ACTUAL Mondayness of today by updating here…

The dust has begun to settle here. I think somehow my brain is easing back into a panic tinged denial. Panic not so much for what may lie ahead oncologically (which, really, is quite a reasonable panic), but more over my unfinished course plans for this school year (stretching a half year class into a whole year class without relying on a textbook is a challenge…but having read several James Loewen books this summer {Lies My Teacher Told Me, etc.} I think it’s important to use other sources)…stuff with my teen, life stuff, realizing all the grand plans I had of listening to music under the stars and such haven’t happened this summer…these are panicking me a bit.

Seriously, when I’m up at 3 a.m., these are the plagues. I think getting a deadline, a line in the sand of September 7, is reminding me that There Is So Much I Have Not Gotten Done Around Here, There, and Everywhere.

And I still haven’t heard back from our doc regarding some questions I have…which is unsettling me. Back to being the Hound of …well, somewhere.

Genna is doing ok. She seems to have filed the probability of treatment into some deep mental file and then gone on about life. She is, after all, 12. She has been Struggling mightily with her summer reading, I think she is about 2 minutes away from finishing her first book. I am getting a bit heebie jeeebied seeing how hard this is for her…it’s not a super complicated book, she just can’t pick up any clues from context. In the course of typing these last 3 paragraphs she has interrupted me about 18 times to ask questions regarding the last 2 pages of her book. Sigh.

But she is doing ok. I am trying to gently mention things sometimes, just so she knows we Can Do It If We Have To.
I also had a long talk with my teen the other day (he was trapped in the car with me, let’s not get crazy re: Mother / Son bonding). I explained in stronger words than I’ve usually used exactly what might be down the road and what that entails for him. I need to not be up at night worrying about him doing his homework. He’s so smart, and a good kid, and at the same time generally 90f the reason I’m no longer naturally brunette. I worry how he’ll get through if we start up again. Seriously I think he has more baggage left from our last go around than G does!

For G, we have indulged in some happy shoe shopping…aka “Stomping out NF Brain Tumors One Fabulous Pair of Shoes at a Time”. Of course G has platypus feet, ridiculously wide…so only glonky shoes fit, but you can find some pretty fabulous glonky shoes out there. Yesterday we got her some pink glitter sneakers. I promised her shearling lined clogs if she has to go to CHOP all the time in the fall…the ones at the shoe store almost fit, but I will order from Endless.com if I have to. If you have a shoe problem, NEVER go to Endless.com . Egads.

If shoes get her through, So Flipping Be It.

This week Rosie has her annual checkup, Andrew has baseball camp, we are FINALLY getting back to G’s counselor, the car is finally getting fixed (it’s scary!) and I have to pack both girls for sleep away camp next week. My sister Em is coming home for a visit, and we (the 6 of us who will be in NJ) are having a sister outing to the city (I am hoping for my first NYC Cupcake Experience). My sister Elizabeth is having a garage sale on Saturday for Dance Marathon at RU (they raise $$ for the Embrace Kids Foundation at Robert Wood Johnson Hospital, which helps out families of kids with cancer & blood disorders—ALL about supporting THAT cause!), so I’m trying to see if we can purge ANYthing else here. BUSY!

And I have to read 3 books about genocide. Woo. Hoo.

Rosie is BLASTING a Muppet CD, so if anything odd happens in this entry, you’ll know why!

Sigh.

I know it’s hard. I’ve hardly actually spoken to anyone
around here. People want to be nice, but then I start talking and people just look like someone is talking to them about a kid with a brain tumor…I’m sorry everyone. I wish it wasn’t so awkward, I wish I was better at not being weirdly cheerful about it and then despairing all in the same silly line. We’ve been in this So flipping long…it’s hard to know how to be supportive when it just never ends. I understand. I don’t even know what to do…

What is there to say, really?

Ok, the Gonzo song in the background is way too poignant, I am having a moment… ; )

Now Rosie is trying to hold one leg and jump rope in the living room…well, THAT moment is over! : )

Finally, Dave is in full bore training for the Philly Rock N’ Roll ½ Marathon in September. I am bummed. I wanted to do it too…ok, I HATE running, “wanted to do it” is perhaps an overstatement, but I wanted to crawl through it for my girls. But if G has to start up right away after the 7th, I need to be with her that day, since she will have just gotten re-ported…

Sometimes flash forwards are way worse than flash backs.

Anyway, maybe I will just have the Jersey Shore Relay as “my” NF Endurance moment…I’m hoping for 2 G-foRce! Teams next year (the speedy one, aka Dave’s team and the glacier team, aka Me & Whoever I can Drag Along). Anyway, I digress. Dave has a page set up…if anyone can spare a dollar, even ONE dollar, we are so grateful.

I hate asking. Hate hate hate. But I hate what NF is doing to my kids even more. :(

http://www.active.com/donate/nfphillyhalf2010/DaveCamiolo

Not sure yet if Andrew is going to run. I hope he will, but we’ll see.

Now Rosie is re-creating her old dance to “Rainbow Connection”…

That is one of my favorite songs ever, I know it’s silly, but it’s true. I love it. Life may be a swamp, but we will find our rainbow…

I better go Do things here before we have to take Rosie to the doc & get Andrew from camp and run errands galore so I can live without a car tomorrow…

I’ve got my giant squid on, I’m on my second cup of coffee in my Chocolate Fantasy mug (thanks, R!), and there’s Muppets singing at ear splitting volume in my living room. Moments like this I do actually think we can get through things.

Thanks all…I appreciate you all so much.

Peace,
K

Monday, August 2, 2010 6:29 PM CDT

Hi, all.

Way leads on to way…

You KNOW we’ve had bad news when I update this often. I don’t really know what to SAY, per se, but my head is so very, very full. I am utterly together (like when chatting with folks on the CBTF Kids Cruise this past Saturday…lovely to see friends old & new!), and then utterly not (like when I watched G galumph along the limbo line on the Kids Cruise). Not being one given to ululation, I haven’t made a scene yet.

“Yet” may be the operative word there, but that is what it is.

I tend to be manically ridiculous when with other people, which is partly why I hide. But thanks to my friends at the party on Saturday night for not running away. It really was good to see you and NOT talk about the Elephant that lives at my house. And the cake was insane. I did break my favorite NF bracelet outside (the one I made, alas), and lost the R bead… (which almost undid me) but the night was so nice.

I know I’m trying to have my Game Face On…but then it occurred to me, I never played sports, I don’t even know how to HAVE a game face. I wore a flipping paper bag on my head once at gym class (perhaps why my gym teacher – now a colleague—STILL loves me so well) . Numb Survival Face I can do pretty well. Hmm.

Genna is doing a bit better, I think she’s managing to NOT think about it somehow. She & Rosie have now gone to Grandma’s 3 times in the past 7 days, which helps them. I MISS them when they’re gone all day, but I know it’s so good for G. Rosie told me today that it was Exhausting watching little kids!

Can’t argue with that.

I have been e-mailing & talking to our NF friends, trying to do some research on the options open to us. The theoretical “we may have to restart treatment” takes on a whole different vibe when you start READING about what taking a vascular endothelial growth factor inhibitor DOES to you. Or can do.

Like this, for example: “The formation of an abnormal passage from parts of the body to another part, sometimes fatal. Stop (name of drug) therapy if this occurs” .

What the heck does that MEAN? It sounds rather alarmingly Madeline L’Engle or Star Trek. An abnormal passage? Like a black hole? Ew. And honestly, if a therapy proves fatal, stopping it is probably a no brainer.

I know, I KNOW it’s so not funny. But you have to laugh (just typed that “half”…yeah, not so together)…God knows we cry enough.

So the research hasn’t been all that fun. (Understatement Alert).

To relax (ok, to aim my ire somewhere else) I read the blog that puts me over the edge, which I have not looked at in 2 months on purpose. I know, I KNOW, I am a moron. But after reading, now I know that the body heals itself. Case Closed. The body heals itself. Phew. Guess I didn’t need to research treatments for G after all.

One might argue that statement is predicated by a certain lack of research, and a certain ignoring of people at my house, but then one might get oneself into big trouble.

Sigh.

That’s kind of how things are, here. I waffle between Game Face, Weeping Secretly, and Being a Snarkamaniac.
I just can’t wrap my head around Doing This Again.

It takes a L-O-N-G to get past chemo. A long time. G didn’t get her reflexes back for a year. She STILL naps, has little endurance, she’s tired. It’s hard to think about starting again. For one to two years…on something that may or may not actually work.

SIGH.

The scan reports arrived on Saturday afternoon, in between Kids Cruise & party…reading them almost makes it worse. Both of them (even though Rosie’s is stable, there are things the doc wants to watch carefully). G’s is a radiological train wreck. Snap.

I caught her fiddling with the envelope…”Don’t read that, G,” I called. Not that she would understand ANY of it, but really…

“Why?” she asked (a reasonable question, after all it’s HER brain).

“Um…because it’s all full of medical words like …peduncle.” ( which is really in there, I did NOT make that up).

Well, G thought this was hilarious. She bopped outside singing “Peduncle! Peduncle! I’ve got a….Peduncle! HEY ROSIE! I’VE GOT A PEDUNCLE!”

Dave thought I made it up. I had to google it to prove to him that the cerebral peduncle is real . I guess I’ve earned that reputation. : )

So we’re moving on. I’m trying to NOT go to the dark scary place that this whole situation evokes. I’m trying not to get swallowed in the thoughts of “PEOPLE DON’T KNOW MY KID’S TUMOR IS GROWING” that plague me when I’m in public (haven’t had that moment in years, it’s singularly unpleasant). I’m trying to plan meals, and think about lesson plans, and support so many of our friends who are going through even WORSE times than we are. I bought a pendant with a giant squid on it, named the squid Sassafrass, and am wearing it as a Squid of Power (which is just silly, don’t be worried…but silly is how we cope with things…we are the people who brought you the song & hand motion version of TPCV). I still have thoughts of “maybe I’m overreacting, maybe I misunderstood, G is doing so great, maybe I’m delusional”…and then I read the report.

The Sound and the Fury is a more coherent read than this, I’m sorry.

Thank you all for the outpouring of support , good wishes, and prayers. We will take all…and if you happen to actually see me in person, don’t be alarmed, I will not ululate at you.

Probably.

Peace out, to all who survived this epic!
Kristin (and Sassafrass)

Thursday, July 29, 2010 8:16 AM CDT

Hi, all.

To my surprise, the world has continued to turn on its axis, the laundry continues to pile up, and everyone here still expects dinner at a reasonable hour.

Yes, even after Scan Day o’ Dismay, life goes on.

We officially heard from the tumor board this a.m. (the message got lost in cyber space, our doc sent it last night). We are ok to wait 6 weeks and re-scan, simply because the ventricle isn’t compromised and the other lesion we’ve been watching is a tad smaller. But everyone agreed, there’s growth in them thar hills…

Snap.

G is aware of what this means. She figured this out about 12 seconds after I posted last. Tuesday was rough, many tears, fears of losing time with friends and getting weak legs again (which hopefully would not be so pronounced. Come hell or high water, we are NOT doing vincristine again). She doesn’t want to talk about it…but occasionally comes to me and tells me she’s worried. I’m trying to be uber mighty for her, and I am formulating a game plan for whatever comes.

This is the one great advantage of the 6 week window. I have TIME TO PLAN. When Genna started treatment in 2004, it was scan-day-drive-to-Philly-the-next-day-surgery-the-day-after-that in such a state of shock…I seriously didn’t eat for about a week. A friend brought me a 3 lb bag of M&Ms, I didn’t open them for nearly 3 weeks (yeah, THAT’s how shell-shocked we were). This time, I have time.

And there is, I suppose, the slightest possibility that the growth will be slow enough that in 6 weeks we’ll gain a bit more time. The docs at CHOP didn’t seem to indicate that was a plausible possibility, but who knows?

Anyway, I am trying to Use this time wisely, even when I find myself vacantly wandering around my house. I hate the vacant wandering. Hate. It. I need to have my lesson plans really together for the first couple of months of school…at least a lot of the legwork on that is done from last year…but I’m picking up another period or two a week for another teacher, so that will take some planning (and shhh…I will actually be covering for G’s class…now THAT will be something to see, eek).

I plan to fill the downstairs freezer with casseroles and pizza dough and things that will ensure my family is fed when I don’t want to eat. Nobody else here reacts to stress with NOT eating, which is sometimes annoying to me. ; )

I had the girls write down some things they want to do this summer. G wants to read. Sigh, think Bigger, G! Rosie wants to go to a water park, a zoo, get a car…ok, maybe not that, but she was getting really into it. Andrew only wants to hang out with his friends, so I didn’t ask him.

G will still get to go to Ronald McDonald Camp, Rosie will go to church camp…we are trying to keep things normal.

The elephant on the sofa makes that challenging.

The other benefit to the summer Scan Day o’ Dismay is that bad news doesn’t travel as fast. Yes, I am kind of hiding (talking to people is challenging…I am moving from random weepfest to random curse like a sailor fest, which can be disconcerting to people, including me). But at least we don’t have to face EVERYONE who has been praying for G like we do during school. This is a plus…not everyone knows yet. And I like it that way.

Yes, I did notice I am posting this online. But I’ve had several folks tell me they don’t read her anymore, and I figure if anyone still does, I don’t mind telling you what’s up. I am much better in print than in voice (I won’t type my more pirate speech, and you can’t tell if I’m crying, so it’s win /win, really).

I even put on exercise clothes today, hoping maybe I’ll get my rear in gear and move a bit. Of course I am drinking coffee and typing while G lobbies to make pudding , but maybe I will exercise.

We have baseball tonight, barring weather, and Project Runway starts (Momma Therapy, there), and the girls went to Grandma C’s yesterday & may go back tomorrow (such a blessing; Grandma’s daycare keeps G so busy, she doesn’t worry). So life goes on.

Thank you all for being there for us. We so appreciate you. I don’t really know what to expect after 9/7, but I am trying to be prepared. The larger implications of this growth put me in a very, very dark place. I need to channel that into work for a cure, otherwise my vacant wandering will become chronic, and that’s not really acceptable.

One beautiful note…a few years ago G brought her special first Communion rosary to school. When I was a full time teacher in (choke) 1994 I went with our school’s choir to Poland. While in Czestochowa at the shrine of Our Lady (a really gorgeous place) I picked up a bunch of rosaries …and as each of my kids got to First Communion, I gave them one. My last one went to Rosie this spring. Anyway, G brought hers to school…and it got lost. She made posters to put up at school, asked everyone, it was really sad. When Rosie got hers, G cried.

A month or two ago, my old college friend, Karen, went to Czestochowa…I asked her if she could try to find us a similar rosary. Long story short, it came on Tuesday…during a really, really tough moment for G. When she opened it, she had no words…she just cried. Later she was much perkier about it, showed Grandma & Grandpa next door…we are keeping this one at home…

Anyway, it meant so much to her. And I know we aren’t alone in this. I don’t have delusions or presumptuous hope, I know the path for us has been what it’s been, and we are grateful for how long we’ve been privileged to stay in the battle. I do pray that we have a bazillion more years…better to fight than the alternative.

And the Camiolo Game Face is getting on…we are going to fight.

Or cry, or eat M&Ms…but hopefully mostly fight.

Peace out, all,

Kristin

Monday, July 26, 2010 6:55 PM CDT

hey.

Rosie is rock solid stable. Some question as to whether the plexiform is in fact a lymphatic venous malformation, but our doc thinks the point is kind of academic AND that it is probably a plexi.

For the first time G & R scanned on different floors , which made things really, really challenging. We had to utterly divide and conquer...I couldn't be there for my Rosie when she cried and cried with her iv... :( This made me very sad. G wanted me with her. It worked out, but it wasn't fun.

G's scan was not exactly stable.

Parts were stable. The optic & brainstem portions are stable. The middle...not so much. Our doc saw us ON TIME (egads!), and spent more than 2 hours with us, going over the films. G told some jokes, did her thing, and then went to watch tv...we were on a different floor, she was ticked to not be by the playroom.

The films are not nice.

We were given the option to wait 6 weeks to make sure things are progressing, and then deal with it. So we will scan again on 9/7. Right before school starts.

Trying to hold it together until my girls go to bed...I think I scared the poor med student by joking about the horrifyingness of everything, but really, it is freaking ridiculous...a DIFFERENT spot I haven't worried about...just not good...

just done for today. Thank you for praying for us. G knows that we have to rescan in 6 weeks. She knows that part of her tumors weren't stable. We told her we will have to figure out what to do if things still look funky. We have NOT specifically said what that could mean. She told me she does not want to do chemo again...asked if she could do oral chemo if she has to restart...but that is as far as we have gone thus far.

Right now G is telling me cheerfully about how Drew wants coffee coupons for his birthday...: )

life goes on, right?

really, really hating on nf right now. really hating.

not holding it together so well, need to go pay some attention to the little girls who are both talking at me...G telling me that Drew is tall but his mom is not tall at all, and R asking if Say Yes to the Dress is on or Cake Boss...

life goes on.

thank you so much for your prayers and support, please keep them coming.
peace,
k

Saturday, July 24, 2010 10:51 AM CDT

12 years ago today I had kind of a weird prayer, born of the desperation of being pregnant in July…for the second time. (You’ll note my 3rd child was born in May; I learned my lesson about summer pregnancies). Anyway, that hot July morning I prayed to my grandmother, if I had that baby on that day (my due date) and it was a girl, I would name her for my grandmother.

A few hours later, to my surprise, I actually started labor, and at 8:30 pm my Genna Marjorie was born.

My grandmother died of cancer when I was not quite 2. She was only 48 years old. We have very few pictures of me and Grandma, I have no memories of her, but I have always loved her. I sometimes wonder what she would have thought of our ragtag gang and the path of the last nearly 6 years. She survived leukemia 6 years…I often think she’s looking out for G through everything.

G was an insanely juicy, smiley baby right from the start. She was stubborn and silly and a climber as soon as she could walk. She has always been social and loud and enthusiastic to an EXTREME. She was a baby when I realized she had NF. She had her first MRI at 14 months old (it was clear. C-L-E-A-R. I can’t even imagine that now). The docs that day commented on how feisty she was, she fought them SO HARD. She is still a fighter…

Anyway, my Genna is 12 today. She already hit the diner with Dave, got some large print books we put on hold at the library (she’s been very anxious about her summer reading; we seriously went through her entire reading list to see if we can get ANY in large print, there’s a handful, but the regular print ones at the library she can’t read at all—a huge exercise in frustration), and she has answered a bunch of celebratory phone calls. She is having a happy day.

Wouldn’t you know, I had to stop typing mid paragraph there to answer a call from CHOP confirming our neuro-onc appointments for Monday. The world is too much with us.

Twelve is a day we did not always think we’d get to. Twelve is the cusp of teen-ness (ok, yikes), twelve is the brink of opportunity and growing up and adventure.

Today my G is 12.

The cake is decorated (badly. I am terrible at cake decorating). The pizza is planned (plain & pesto), and the cucumbers are picked. G specifically ordered pizza and cucumbers for dinner. ; ) Now she is hovering.

We also had Andrew’s birthday this week, a festive day with family, and then he & Dave & some friends went to the Yankees game on Thursday night (A-Rod hit 599, didn’t quite hit the 600 mark yet!).

Now everyone is around me and talking at me, so my attempts at poignant coherence are apparently over. I need to go clean up from G’s big party yesterday with her class, and get ready for Grandma & Grandpa coming over tonight. Normal, regular, everyday life, punctuated by the Elephant I can’t seem to get out of my living room.

Please pray for us on Monday. I am not doing particularly well with what it is all about, which isn’t a news flash, but it’s hitting kind of hard the last few days. I think the contrast of scan day with the woohoo of birthdays is a bit starker than I anticipated. Still, at least I’ll have leftover cake to get me through tomorrow.

Thanks to all of you for supporting our family since we first started this page when G was 6. It has been a long road, and we are so grateful for you all. Today I think a lot about all the people who have shown G kindness…it’s a long list, and one I keep close to my heart.

Peace, all,

Kristin

Wednesday, July 14, 2010 6:23 PM CDT

Hi, all. Happy Bastille Day.

It is Wednesday, and I suppose my delay again in updating is some sort of testament to the amount of laundry we had or simply the paralysis that hits me when I try to put words to page these days.

We had a great vacation really, even though it was so very hot the second week. Lake George is such a timeless place. Rosie is at her happiest there, Andrew has fun with the teens, and even Genna managed her anxiety pretty well this time. She got earplugs which she wore religiously EVERY night, and wouldn’t you know it, the first night we had a huge thunderstorm (epic, at least an hour of crashing thunder) and she slept through it. She is mildly phobic about thunderstorms at Lake George, they are REALLY loud echoing off the mountains.

Funny, after going to the Sierra Nevada, our beloved Adirondacks hardly qualify as mountains.

Home has been, well, home. The last few days have been trying, not just because of the 15 loads of laundry. We broke down and ordered a new air conditioner while at Lake George; it came on Monday, I wrestled it into place (it stresses Dave out so much, and he had to go back to work, so I did it), plugged it in…and no cold air came out. Air came out, just not COLD air. After some dismay, wailing, and gnashing of teeth (the gnashing only started after the Haier lady told me it would be a month to replace it…HELLOOO? I just bought it, it is defective? A MONTH? THIS IS SUMMER NOW??), the folks at J&R said I could return it and they will send me a new one. I can take heat, just Jersey humidity can be a nightmare.

Genna has gotten back into doing her summer schoolwork. She is so diligent. The more we do of the books I got, the more discouraged I get, but we will find a way to make things work. I HATE when the predictions of the neuropsych people come true. But G is a hard, hard worker, and she will prevail somehow.

I am working very hard to try and get her summer reading and now her reading for next year in large print or digital editions. If I ever have time, this might become my crusade: getting publishers of lower grade and especially middle grade text books to make a large print or digital edition that can be manipulated for kids with health impairments. I would think this could be useful for a lot of kids, and with the technology out there, it should not be that difficult to do. Buying large print is EXPENSIVE ($18 for Call of the Wild? Ergh!), but I did just find out school might cover some of that, there might be funding for G’s books that way.

We are seriously looking into a Kindle or iPad for G, so far the jury is split on which is the better choice.
Both girls are reading for the summer program at the library (and I am grateful to the librarians for showing me how to search specifically for juvenile large type books in their database), both are enjoying our little pool. Genna especially is a homebody, she is happier here than away. The rest of us are less woohoo. : )

I did finally call G’s Miss Nora, she is going to talk to her again in a few weeks. G’s anxiety has been kind of EXTREME RECENTLY, so I think some Miss Nora time might help.

So, ways lead on to ways. I don’t think I mentioned the wonderful dance recital, we left straight from there to go to the lake. Genna actually WON the Modern Scholarship, she is so proud of herself, Dave and I were all ferklempt, it was beautiful. She and Rosie both looked so happy on stage. G is galumphy as a dancer, but she LOVES the stage. Rosie was a rockstar. No, really, she said, “I look like a rockstar.” We are so proud of them both.

Summer ball has been ok for Andrew, he has had some issues hitting, which are a bit boggling after his hot spring, but he enjoys playing either way. I try not to stress out about it. Most of the games are too late for the girls to go, I haven’t even seen him play at all this summer! Next Tuesday Andrew has a 6 pm game, so we will all go.

Next week is The Week of Birthdays. Andrew will be (choke gasp erp) 15 on Tuesday (yes, game day). This is hard to fathom since I am sure I am only 29. Genna will be (!!!!!!!!!!!) 12 on the following Saturday. TWELVE.

When I was a kid, 12 was like the Magic Age, something about it had such a mystique of awesomeness. My G is going to be 12.

I have said it before, here it is again. We were never promised 12. We are so grateful.

Of course 2 days AFTER the big day is scan day, aka “Rain on my Parade Day”. Genna ABSOLUTELY wanted to be 12 when she went back to CHOP. Sigh. Both Rosie and Genna will scan, and we will see Dr. B later in the day. I have some concerns, some whatevers.

Scan day just puts it all in black and white and that funky grayishness that brains are on computers. We have two little girls with brain tumors. I can deny it most of the time these days, I can shove it under the couch with all the other scary things under there (believe me, do NOT go under our couch). But reality is what it is.

It’s good, sometimes, I think, to remember the reality. This gives me resolve when I am feeling like fettucine. Cooked fettucine, limp and kind of stuck to the floor. We have to keep moving for a cure.

Dave is signed up for Philly. Andrew might do it (depends on the day and the mood, he IS almost 15 after all). I am debating. Logistically I need someone to be able to be there with my girls, I hoped to find a Glacier Buddy (ie someone willing to “run” at glacier speed –pre-global warming glacier speed—the 13.1 miles of the Rock & Roll ½ Marathon). Not sure I can do that, but if I can find someone to come with us, I may try and get through the course.

I hate running (a lot. Like, loathe. Despise. Abhor.). But when I run, I imagine squishing tumors with each step, and leaving flowers in their wake…crushing the pain and suffering, and leaving a trail of beauty.

Ok, so MAYBE I don’t have enough blood going to my head while running or something, but it does help me. That, and the names. The kids. The grown ups. My friends.

I’ll keep you posted on whether I’m cheering or having panic attacks, er, running, in September.

Better stop, Windows 7 is giving me an ongoing word count and I am at 1100 words. Eek.

Please pray for my girls in the next 2 weeks until scan day. Thanks.

Rosie is here begging for ice cream for the neighborhood. Um, no. Momma needs that ice cream tonight. : )

Peace,
k

Tuesday, July 6, 2010 6:43 PM CDT

hey.

we are at Lake George, things are good, last week was chilly and today is stifling. Like fleece a week ago, hoochie tank top today.

Just a quick prayer request...
on July 1 my friend Tatiana's friend Dave succumbed to the injuries he sustained in the copter crash in Afghanistan. As we remember the birth of our country, please remember this soldier who died trying to rescue other soldiers.

T, I am so sorry.

Things are ok here, G jumped off the dock all by herself today (a first)...and walked into a window (not so much a first), yesterday she missed a step in a museum and face planted. Yes, friends, 3 weeks until scan day.

Rosie is a fish, Andrew is a teen. That pretty much sums up everything else!

G is waiting for a ponytail (it is SO HOT), Andrew is waiting for an ESPN check...better run. Wishing everyone peace...

peace,
k

Saturday, June 26, 2010 8:59 AM CDT

Hi, all.

As you can tell, I am a big fat liar. I never got back here...

And now we are off to Lake George for 2 weeks. I am trying to get psyched...the details that need to be done before we go are a bit overwhelming.

Today is also my girls' dance recital, which adds to the insanity. They are pretty excited, and I always find seeing G dance a sort of miraculous moment. She is galumphy, but she DOES it. We were never promised this, and a lot of brain tumor families don't get this. So I am grateful.

So far summer has been a bit of a bickerfest here with my kids. After Lake George I hope to get us into a better routine. I am likely delusional, as always.

I know when we return things will be crazy...dentist, baseball, baseball camp, 2 birthdays, a party about which someone has been OBSESSING out the wazoo (an ice cream social, in case she hasn't told you yet), then scan day. For both girls. I am a little concerned about Rosie, actually, but I'm not sure scan day will give me the answers I need. Still, at least they are both on the same day. Genna wanted to be twelve when she went to see everyone at CHOP. so we will go the Monday after her birthday.

This merits some sort of dramatic pronouncement by me, but I just have that feeling in my chest that I get when saying that sort of thing. Interpret that as you will...my heart is just kind of full.

Emily (my sister in Washington) is running the Seattle 1/2 marathon today with CTF. I am so proud of her, and so grateful. Dave just set up his Philly page...not sure Andrew is going to do it this year (he is being funky about distance running), I am debating if I can walk it. My knee is still a problem (ooh, forgot to pack my compression band for Lake George), so I don't think running the whole 13.1 would be realistic, but I kind of need to assert myself in the face of NF.

Maybe I'll see how July 26 goes first.

Ok, I NEED to go finish packing AND find the appropriate stage makeup for my girls (ew, I hate that part), and then clean a little...

please pray for our NF and bt friends...especially Gabbie, and Emma, and Drew & Joey, and Jenna, and so many others...

And much in our hearts this week is Sandra, on her anniversary in heaven. We miss you Sandy, and to all the Blumbergs, we love you guys. Trying to live one day at a time, since Sandra pointed out it is impossible to live two days at a time. ; )

peace,
k

Saturday, June 12, 2010 9:57 PM CDT

THURSDAY PRAYER REQUEST FOR A FRIEND!
Hi, all--just looking for some extended prayers/good thoughts/dances of whatever for a friend of a friend. My cb bud Tatiana (visitor #100,000!), who was such a great support to my niece when she was sick in Denver, asked if we could pray for a very dear friend of hers...

Last week a US copter was shot down by Al Qaeda in Afghanistan; 4 US soldiers were killed, and the pilot was gravely injured. Dave,the pilot (& T's close friend), is back in the US now and in a pretty desperate and precarious state. T's husband is in the Air Force, and it's a tight knit community...the loss of 4 and the catastrophic injury of the others is deeply felt. Please pray for Dave, that he can continue to confound the docs and recover. His family has a blog (http://www.wisniewskiblog.blogspot.com) ...T, if I got details wrong, please let me know.

I find it troubling that none of the news accounts I've read mention the survivors of this crash who are clinging to life. Mortality rates in the current conflicts may be lower, but that does NOT reflect the reality of brave men like Dave, struggling to survive catastrophic injury. People should know. sigh.

Thanks all...and please pray today, it is my friends' son's wake. :(

peace,
k

HERE IS TATIANA's UPDATE:
As many of you know, my husband Warren is a combat search and rescue pilot and flies HH-60 Hawks for the Air Force. On June 9, 2010 my friend Dave W. was the pilot and aircraft commander in a Pavehawk Helicopter which was sent on a rescue mission to assist wounded British soldiers engaged in combat. In the midst of the rescue, insurgents fired off two rocket-propelled grenades and shot down the entire aircraft. Four crew members were killed instantly including the combat rescue officer, flight engineer, and two pararescuemen. The gunner and copilot survived and are expected to make recoveries. My friend Dave however, sustained extensive and severe head trauma and the outlook isn't great, as the neurosurgeon is doubtful of survival. I am asking anyone and everyone who took the 30 seconds to read this to please offer up a prayer or anything for my friend. He is so loved and deserves to marry his fiancee and have children, as that's all he ever wanted in life. He is a true Rescue Warrior and dedicated his life to saving others. Please keep him in your thoughts and prayers, as well as the families of the fallen.
Thank you,
Tatiana R. - A Grateful Rescue Spouse
*************************************

Hi, all.
I am sorry. Things have been crazier than crazed, and I can’t seem to find words sometimes for what’s in my head anymore. I hate this weird silence that paralyzes me.

I know that my infrequent updates and general tone of dismay have turned some people away (I do LISTEN when people talk to me!), and I am sorry for letting people down by shirking things here. . .the dismay. . .well, that I don’t know how to fix. So before I say anything about our magnificent trip out west, let me give a Depressing Alert. Don’t read the next few paragraphs if you want to feel perky.

Yesterday the 13 year old son of one of my high school classmates was hit by a car while he waited for a school bus. He died today. I feel kind of in pieces, even though I was never close to this classmate (we were in a VERY small school. . .but we were not chummy, to say the least), but his wife is very nice, and his parents & in-laws ARE friends of my family and even more so Dave’s family. I would like to say I can’t fathom losing your only son . . .but I think this hurts so much because I’ve fathomed the possibility of losing a child so much in the last nearly 6 years. I almost feel like we dodged the bullet meant for us, which I know is utterly irrational. . .

But last night I could only think of those parents, sitting in an intensive care unit, praying their child would live. . .

And that hit way too close to home.

So I will try to find out the arrangements, put on my Big Girl Self, and let these families know that we are so very sorry...I remember when this boy was born. . .I can’t imagine their grief. . .

Ok, I will stop. But please, please pray for these families.

I wish I could describe all the joys of our trip out west. I did survive the flight (although I admit I left a toothbrush home in case DNA was needed. This should have clued me in to my need for medication, but I am stubborn). Unfortunately there was a 2.5 hour delay for thunderstorms, wicked horrible thunderstorms. I think at the moment we were on the runway and I saw the lightning start, that was about when I stopped breathing. About 3 hours later I restarted. Apparently saying “I’ll take a big girl pill and get through it” does NOT work the same way as actually being a big girl, calling a doctor, getting a pill, and then being able to function while ON the play without thinking ohmyGodpleasedon’tletmedieitisshakingsomuchthatcannotberightbutnooneisscreamingexceptmeinsidemyhead . . . .ahem. Lesson learned.

Genna did magnificently well. She was terrified during takeoff, but once up she did ok. The flight out had tvs on each seat, she found SpongeBob and all was well in the world. At the end of the flight she was so proud of herself. “I was so brave!” she told me...and I confessed to her that I am, um, a tad nervous about flying (UNDERSTATEMENT OF THE EON!), she was agog. “You ARE???”. Glad to know it wasn’t too obvious!

Because of the delay, we didn’t get to our hotel until about 1 a.m. CA time. That’s 4 a.m. NJ time for anyone keeping track. YIKES! We grabbed a few hours of sleep and then headed out!

We drove down Lombard Street, and then Dave & Rosie & Andrew ran back up it. Andrew saw a Lamborghini dealership, which he thought was awesome, and we couldn’t believe how HILLY everything was. Manhattan & Philly are NOT like San Francisco. Then we went to the Golden Gate Bridge, which was spectacular. The day was perfect, the bridge was gorgeous, Dave ran across, we took pictures. Perfection! We drove into Sausalito (replenished our coffee), then up into the Marin Headlands. Andrew saw the road from the bridge, so we found it and went to explore. I can’t even express how beautiful it was. The only bad part was my son (and to a lesser degree my spouse) hanging off cliffs. Not cool.

We are optimistic that we may have a Christmas Card picture in all of that. It was THAT good.
Once back in the car, the kids mostly went to sleep. The drive across CA was uneventful, and pretty cool, really.

A few hours in I realized that the clouds on the horizon WEREN’t clouds- - they were the snowy tops of mountains. In THE SKY. Holy cow!

The Sierra Nevada defy description. Like the Adirondacks on steroids. The trees were ginormous, the pine cones were the size of small animals, and the snow...my boys stopped to throw snow at each other. By the road it wasn’t more than a few inches, but hello, it was MAY 28!!

By the time we came down near Lake Tahoe, we were well into Completely Wowed.

We also were mildly frozen. It was 39 degrees at Lake Tahoe, a drop of some 26 degrees from the other side of the mountains.

Driving down Kingsbury Grade into Nevada was a bit hair raising (after the Marin Headlands cliffscapades, I refused to let my boys out of the car when we took pictures), but the valley was amazing. Miles and miles and miles of ranches, marshy areas, and deserty spots. Just WOW.

The hotel was only a few miles off the Grade, nestled at the foot of the mountains. Seriously, I could lie in my bed and see snow covered mountains like 10 feet away. Insane.

We collapsed early Friday night, because Saturday morning we needed to be up super early to get Dave & Andrew to Virginia City and the Bucket of Blood Saloon for the Bachelor Fest Mega Hike with John and friends.

Not sure WHY nobody out there believes in guardrails by cliffs. The drive to Virginia City was again a tad cliffy, but tension was eased by frequent humming of the Bonanza Theme (well, at least I felt better!).

Finally got to see John, meet his friends, see Rich, piles of Yay. We left the boys, and headed back to the hot springs at the hotel!

To my delight, they survived the 9 miles of mountain hiking through wilderness (no trails), Andrew even found a skull & antlers that we managed to smuggle home in Rosie’s booster seat. : ) By Saturday my whole family was there. We have not all been together in years and years, it was so great to just be with everyone. My family is my rock. I am so bad at expressing it (and they all get to see my dismay in action on a daily basis), but I am so grateful for my family.

Soon it was time for the BBQ at the park down the road, and I finally got to meet Wendy, John’s wife. She is wonderful. She survived all 9 Appert kids in one place, just to prove her mightiness, I think. I am so very happy for them both.

The actual wedding was Sunday, at a gorgeous golf course down the road, the weather ended up being SPECTACULAR, after all the dire predictions it was gorgeous! The ceremony was awesome (Woman of God Anna did a beautiful job, and I am so glad to have met her, too!), the reception was a Par TAY - - for the first time EVER Dave & I actually danced the whole time. And I ain’t talking Foxtrot, baby. Par Tay! Rosie and my niece Phoebe & nephew Damien did not stop dancing the entire night. We had such a blast, all together.

I miss everyone again!

The day after the wedding we explored Tahoe a bit (Genna was so tired), had a cookout with John & Wendy, and just chilled. Tuesday a.m. we began the drive west, eek. I have to say, the flight home was not nearly as bad. It was shorter, and I had to keep entertaining the girls (no tvs on the seats, G couldn’t see the movie screen too well). So MY brain was busy, which was good. We landed right around midnight.

I am so glad we did not crash, which kind of goes without saying, but I still shake inside when a plane flies over. Need to get over that. Urgh.

G was up at 6 a.m. the day we got home. She was READY for school. Andrew had had to stay up until 3:30 finishing work (do not ask), he was a lump. I let Rosie sleep until 10. SO TIRED!

This was Wednesday. Friday at noon we were off to PA for the next wedding!

This is why I don’t update, I get so overwhelmed. I’ll stop here...my girls finished school this week, Andrew finishes Wednesday. I hope the summer is good. We’ve had some challenges already, and I have two scans to schedule. One of the girls has mentioned some odd pains, the kind that get my internal panicmeter going, but I think I’ll talk to the pediatrician first.

Ok, I am so tired- thank you all who can stomach my roller coaster like whatnots- I promise I’ll be back to finish WeddingFest 2010 SOON!
Peace,
k

Thursday, May 27, 2010 9:45 AM CDT

I know that I shall meet my fate
Somewhere amidst the clouds above... WB Yeats

Ok, I am not getting any better at updating...and this is going to be short. No, Really.

We fly out to California today for my brother¡¦s wedding. I am really glad to finally meet Wendy, to see my other sibs, to see the West Coast. I am unfortunately remembering Exactly How Phobic I am about flying. Sigh. I need to pull it together, but the weather prediction is scary for people on the ground here tonight, and we are supposed to fly through it. Yikes. Genna is terrified, so I have to be tough for her. I got her a little pack of Pringles, so that should take the edge off. : )

This season is so crazy busy.

Sunday Rosie danced at a local minor league baseball game. She was insanely cute, I put video on facebook. G fell asleep during the game; I inhaled about 8 pounds of kettle corn. Yum. It was a great day. I miss when Dave & I used to go to games together. But anyway, Rosie had a wonderful time.

Monday Rosie turned EIGHT YEARS OLD!!!! Good grief! Where did the time GO??? Seriously, people are NOT being patronizing when they tell you time flies, cherish when the kids are little. Rosie has been such a joy to us, her creativity and imagination just make every day sweeter. She was pretty sick at the end of last week, had to miss her Fun Day at school, woe and sadness; but while on the couch at home she made a little picture that said "thank you mom for taking care of me! I love you!". She is so sweet it¡¦s insane.

She and Dave went for breakfast at the diner (birthday tradition) and she cuted her way to a free giant cookie. That¡¦s my girl! She had an Italian food fest for dinner and a ladybug cake for dessert; I couldn¡¦t get her to go to bed, she did not want her birthday to end!

All in all, it was a really nice day.

Genna is nearly done with school, thank God. She told me last night, kind of sadly, that she used to love school, but it isn¡¦t as much fun anymore. ƒ¼ I hate that it¡¦s getting so hard for her. Ugh. She works insanely hard all the time. This week she chugged out a project that¡¦s due when we return from Nevada. She is so diligent.

So if you think of it, please say a little prayer for us flying tonight, and for our drive across California tomorrow. Dave wants to run across the Golden Gate Bridge, and we¡¦re going to drive down Lombard Street, but then we¡¦re off to cross the snow covered mountains into Nevada. YIKES. Seriously, snow this week. It¡¦s 80 degrees here, sigh. I hope I packed the right stuff.

I think G will be fine once she realizes she can watch tv and a person will bring her apple juice. What¡¦s not to love?

Please remember all our friends fighting on. May is BT AND NF awareness month, and geez, these days I am painfully aware.

And a special Happy Birthday to Grandpa Nikischer, 87 today! We love you, Grandpa!

Peace,

K who hopefully will survive this trip...and if I don¡¦t, everyone needs to have a Costco Cake in our honor, ok?

Tuesday, May 18, 2010 4:23 PM CDT

Hi, all.

I am officially the Worst Updater Ever.

Not sure why I get paralyzed when I think about writing. My head has been in kind of a funk for a while now. Need to figure that out. But we have been crazy busy here. . .

Genna’s IEP meeting was demoralizing. Certain issues were raised that our neuropsych evaluation predicted would come to pass for G. . .strangely none of them include “will enjoy absolute easy success in all things academic “. . .we have a lot to try and figure out, a lot to work on over the summer. I just know how my big plans tend to implode about one week into summer vacation!

But we really need to help G with some things. I spent some time investigating one cognitive remediation program, and I have some other stuff I’m looking into. It’s all complicated and all expensive and none of it promises results for brain tumor kids.

The brain is far too complex an organ to get squashed and be ok. Kind of like if you throw your laptop out the window. It doesn’t like that.

In related ughulous news, our new laptop somehow died. This has added to my lack of updating, I hate being in my basement as the weather is getting nicer (well, except today, the weather is hideous!).

The day after G’s IEP Rosie had her eye exam in Philly. We only had to wait TWENTY MINUTES which is unheard of, and Rosie’s eyes were PERFECT! To quote Rosie's explanation, "I am 20 in one eye and 20 in the other, so I am 20/20!"

This is ginormously excellent. Because she will be 8 next week (EGADS!) and her eyes are still great, she goes from a 50% chance of vision loss to TEN PERCENT chance. That merits an unparenthetical EGADS. We were back home at noon, it was an insanely fast visit.

Our school had a monster rummage sale...I had 17 service hours last week alone (phew, finished for the year!). Genna LOVED shopping, er, helping. It was really fun and we made a good chunk of change for the school. And I scored “But No Elephants” and a vintage dress, as well as more books for my class. Genna had a field day in the book section.

I can’t type on the keyboard that goes with the new desktop. I apologize for any typos I miss, this is making me crazy!

As we are winding down the school year we are also preparing for The Mighty Family Expedition West. For the first time in at least 5 years ALL of my 8 siblings & me will be in the same place at the same time. Yes, I plan to get photographic evidence—and hopefully some cute shoes. The logistics of flying to California are a bit daunting to me, but I am getting excited to see everyone, especially John & Wendy. I’ve never been as far west as California, so that’s cool too.

The following week we head a bit west to Pittsburgh for Dave’s brother’s wedding. We are excited to see Tim & Laura & kids; we haven’t seen Katrina since she was sick & now better, and we miss them all terribly. I still need a present for Mark & Melissa (John & Wendy said no presents, so I only have to do one). At least we can drive to Pittsburgh, so if all else fails I will just throw potentially useful things into the van and we’ll roll. Again, the logistics are daunting, but I am trying to focus on the fun parts.

I am an unfocused person so often.

My garden is coming along, but Dave is a man obsessed in the yard. We are drowning in mulch and horticultural ambition these days. Eek.

May is both NF and brain tumor awareness month. I am just feeling really aware these days. Painfully aware. Most of the time we can bop about happily and do our thing and get stressed about homework and where are your shoes and things like that. But sometimes the breathtaking horror of things just whacks me upside the head.

One of Andrew’s former teammates lost a sibling last week to a random sudden illness. We are so sad for that family, and just reminded how short and precious life is.

I better run; I have to finish G’s camp application and a pile of other paperwork. Dinner needs to be made, and my kitchen has to be re-cluttered, er, re-assembled after the counters got resealed this a.m. G has dance tonight (both girls are excited about the Nutcracker production they will be doing in December; I just have to figure out how G can miss half of art for 3 months, sigh). Rosie gets to dance at a minor league baseball game on Sunday (should be adorable). Andrew should have had his last game today, but it’s raining.He had his best game ever last Thursday; pitched 5 innings, gave up one run, hit 3 for 4 with 3 doubles; had a tough game yesterday, but that’s baseball.
Life goes on.

But for a lot of families, the moment they got the diagnosis of NF or a brain tumor, life changed forever. And this month, that is more in my heart than ever.

Wishing you all peace, and please pray our plane goes up likes it’s supposed to and only comes down like it’s supposed to. Eek.
Peace,
k

Monday, May 3, 2010 9:34 AM CDT

Hi, all.

Sorry for the endless delay in updating. We have been Running at full steam ahead. . . running, running, running. . .

Figuratively, I have not been running nearly as much as I should be. Ergh.

First, and most importantly: May is BOTH Brain Tumor Awareness Month AND NF Awareness month. Not like we EVER get to be unaware, but in case you were wondering. . .this month we get to be officially doubly aware. That said, I am wearing my http://wallofcourage.com t-shirt and put my official bt pins on my big tote I tote around. Not sure if it was that, or the kind of nasty weather we’re having, but today is one of those days that has Train Wreck written all over it. . .so I’ll try to stick to the recap and not dissolve (again).

Just putting pins with BOTH OF MY DAUGHTERS’ PICTURES on my bag. . .and not cutesy dance pics or softball pics, smiling pics of children who carry a horrible burden. . .well, it’s not conducive to maintaining my Susie Sunshine persona.

ANYhoooo. . .

We have had a couple of big things. . .Genna and Rosie got to audition for a production of the Nutcracker that their wonderful dance teacher is putting on in the fall. Can you imagine a DANCE production my balance & motor skills & peripheral vision impaired kid can participate in? Egads! This is pretty exciting stuff, and I’m hopeful about how it will pan out. Rosie was pleased to show how she could do splits, and Genna could do a few of the dance moves. It was a positive thing, really.

Rosie also had her First Communion retreat (super cool pottery guy came and made blessing cups with them. . .honestly, I TOTALLY didn’t want to go, it was a gorgeous day and there was an RU LAX game, but ultimately it was a really wonderful afternoon). This Saturday Rosie made her First Communion. . .although it is unseasonably hot here (nearly 90 on Saturday!) it was sunny and gorgeous and Rosie just looked so sweet, and she was so excited. . .it reminded me of why we think our faith is so cool, if that makes sense. Seeing the joy through Rosie’s eyes just . . .it was really nice, even if I kept having painful flashbacks about Genna’s First Communion (she was in the worst part of her treatment then, AND our former parish was in dismay, to put it one way). I remember very little of Genna’s actual day, so I am glad Rosie’s was so lovely. Sigh.

THEN we ran off to see my sister in a production of Thoroughly Modern Millie (great job! Freakish channeling of my sister Megan –who is close to my age—Laura (in the show) is . . .um, WAY younger). . .and yesterday was Senior Day at Rutgers Lacrosse. Our girls (yeah, it’s like that! : ) ) were so awesome, they won in a “rout” as described on the RU website. . .at the end the team set it up so each of the defensive seniors got to score their first goal. . .it was a really impressive display of teamwork, and we went berserk with everyone else. (Maybe we were a little too enthusiastic, the Cincinnati family that accidentally sat by us moved for the second half, heehee!) : )

At the tailgate afterwards G’s buddy Annie added more songs to G’s iPod, which was super nice. We are really, really going to miss these seniors. Now that it’s been 2 years, I feel like we know everyone better.

This week is , well, normal. Insane, but I don’t have a big event looming, other than a huge school fundraiser I am helping with that will require a lot of hours of the next 2 weeks. Thursday Rosie has an eye check in Philadelphia. Woo. Hoo. The great irony is that Andrew is playing baseball against the high school that is literally 2 seconds from my house. Some of the fields are behind my yard, it is really THAT close-- and THIS is the day I have to drive to Philadelphia. The ONE day I don’t have to drive to get him from Flemington or Somerville or points yet unfound—I STILL have to drive to flipping Philadelphia. Argh!

Nothing creates joy like a rush hour drive to Philly.

Genna is quite pleased that she does NOT have to go. That rarely happens. She has horrible allergies right now, and I think we need to try and work out our schedule so she can go back to Miss Nora, her talking friend (ahem). . . and I have her IEP meeting on Wednesday. Not sure what to do there, this year has been a struggle for G. Her teacher has been fabulous, academically things have become more challenging. Just not sure how to fix the unfixable.

Sorry.

I don’t know what is up for next weekend. I’m kind of hoping a pile of nothing.

We are also getting ready for a bunch of travel at the end of the month. We fly out to California before Memorial Day for my brother’s wedding (San Francisco, then drive to Tahoe). I plan to overcome my severe phobia about flying before then, so. . . yikes. Logistically this trip requires some extreme planning. We NEVER fly, I feel like I need a packing strategy par excellence, since my normal strategy is a Jenga-like arrangement in my mini-van, with heavy use of a crowbar. I assume if we don’t crash and die (sigh) that any checked luggage will end up in WallaWalla, so I want to carry everything we need. Urp. That means I may need better luggage, the $10 Target bags we’ve used for 6 years are beginning to wear out, and I think our one nice suitcase is too big to carry on. Too much thinking!

The following week Dave’s brother is getting married in Pittsburgh. I have to make sure everyone has dress up clothes (ie I know Andrew has no dress up clothes as evidenced by what he wore to Rosie’s Communion!), and I have to just think. A Lot.

So that’s the way of things right now. No big drama, just daily whatever. For whatever reason, I’m feeling the marathon right now. The moment will pass. Just some days I can’t pretend it’s all ok. It gets heavy.
And our laptop broke. The new one. With the last
3 months of pictures on it (I thought there was an auto backup, not sure it was functioning). Sigh. What can you do?

Better run and finish the putzy little things that seem to fill up my day. Thanks all, for being there for us. I know this gets so old. But we appreciate you so much.
Peace,
kristin

Monday, April 19, 2010 9:06 AM CDT

Hi, all, happy Monday again.

Well, just the fact that I’m updating should indicate I am not dead, which is generally a positive thing. I survived my first foray into the world of NF Endurance running. . .it really wasn’t as bad as I expected, which shocked me, really.

The weather was cool, but NOT rainy (thank GOD), after some extreme panic on my part (not helped by checking out my piece of the course on Google Earth), we made it down to Seaside Heights in good time (yes, MTV watchers, THAT Seaside Heights). We found the NF team on the boardwalk and got checked in. Our neighbor Suzanne got the baton and at 8:30 her group started. . .Dave & I jumped back in the car & drove the 12 miles to Point Pleasant (right past where my parents vacation every year, kind of funny). . .we passed Suzanne on the course, she was flying, that is One Very Fast Lady (I think she was running under 8 minute miles. . .like CRAZY FAST).

We found our spot in Point Pleasant, got to the boardwalk. . .and then found out the transition was actually about 5 blocks down. . .trying not to panic. . .we had time, and I needed to walk a little, but that ADDED TO MY MILES and let’s not forget that I Do Not Run.

I was so nervous. Like insides falling out kind of nervous. Like biting Dave’s head off when he tried to be encouraging nervous. Sigh. I do not do nervous well, which is why I don’t always hunt folks down in the clinic when we are there on scan days. I am a menace when nervous.

Suzanne got to our checkpoint (still running strong) at exactly 10 a.m. . .I grabbed the baton and zipped away.
Honestly, once I was moving it was a lot better. And generally there were people around me, so I didn’t have to worry about getting lost (mine was the curvy part of the course. . .around the Manasquan inlet, over a couple of bridges. . .which were less scary in real life than on Google Earth—well, except for the creaky wooden drawbridge (Can you say SPRINT!)). . .I had a plan, run 3 minutes walk 1, based on Jeff Galloway’s marathon system.
Note to self, using cell phone as timer doesn’t work so great in the glare.

Silver baton in one hand, cell phone in the other, I galumphed along. It was so odd. It really wasn’t horrible. I mean, I FELT it, my legs were kind of like “whatchoo talkin’ about, Willis?” the whole way, and I got a bit out of breath (NERVOUS), but it wasn’t too bad. A bunch of people passed me, which I had expected (I was in a faster pack because of Dave & Suzanne’s paces. . .and they were in slower because of me). . .but I ACTUALLY PASSED PEOPLE WHO WERE RUNNING TOO! I could. . .not. . .believe it. I had to. . .even galumphing. . .

At the 3 mile mark I started to feel a bit yikes, but I grabbed a bit of water (mistake) and kept on going…I knew I was almost to the turn. . .then the boardwalk. . .then a half mile & done. I just kept saying the names. . .I had them all ironed on around the bottom of my shirt. . .and a pic of my girls & Sandra on my back. . .I thought too of Marta, and Deedy, and Amie, and Ori, and Melissa, and Ann, and Tara, and Kelly and so many others. . .the MOMS. . .I just kept thinking the names and pushing.

As I climbed up the boardwalk steps, 2 ladies were there CHEERING for everyone. . .”Be Encouraged! You’re almost done! Only about 5 more minutes! You’re almost there!”. . .

I wanted to hug those ladies. I could hear them behind me as I continued, calling out to people.

I kept thinking the names. . .but then I could feel the emotion rising, and had to catch a sob in my throat, all these beautiful NF people. . .had to focus hard. . .passed a pink plastic flamingo. . .(not racing, just in someone’s yard).

I knew I was nearly done. . .and then. . .ergh. I have a LOT of experience with nausea (3 kids x 9 months of hyper-emesis means pro at puke, sorry for the vernacular). This feeling at the 4 mile mark was, um, epic. Like, where can I throw up NOW??? I knew I was almost done, but I had to walk for a minute. My whole goal of running is 1) don’t throw up 2) don’t pass out. And now I was approaching the finish, I DID NOT WANT TO SAY HOORAYBJbhjhdjhdhfhgaergh in front of EVERYONE.

I got it under control (still not sure how), and then tried to jog again. . .I could hear bagpipes. . .hoped I wasn’t just utterly delusional. . .and then there was Dave, at the front of the crowd (so nice, knew I would be mortified to run the cheering gauntlet of runners). . .a kiss, a hand off of the baton, and then shaking heebie jeebie DONE!

And realized I was at about 9:49 per mile over 4.5 miles, further than I’ve ever gone, faster than I’ve gone in 2 years by about 40 seconds per mile. (44 minutes total)

TAKE THAT, NF!

Suzanne & I zipped to get to Asbury Park before Dave. . .we knew he’d run 9-10 miles in about 1:15 at the most, so we had to hustle with traffic and all. I felt pretty nasty (note to self, Gatorade is gross), got a juice at a Dunkin Donuts and felt better. . .we got to Asbury and Rita had brought the kids down, getting to hug my girls meant so much (Andrew wasn’t feelin’ the hug). . .Dave finished in great time. . .it was awesome.

I think our team time for the 26 miles was about 3:26? We were 91 out of 450 teams. (yes, I am riding on my speedy teammates coattails for that one!).

But in a rare display of whatever, I am very proud of me. I beat my own head, which so rarely happens!!! And I FINALLY got to actually do something for my girls and Dave. And I am so grateful to our neighbor Suzanne for joining us. I talked to her husband today (he wasn’t available Saturday, but he is a runner too). I hope he can join us sometime, too! We could not have done it without Suzanne. And she is IMPRESSIVELY FAST. Based on the half times (there’s a half marathon too), she likely could have won her age group. FAST!

So. . .pondering. . .anyone want to aim for a 10 minute mile for the Philly half in September? I think if I had a buddy, I could do it. . .and we would cover the hotel. . .just pondering. . .

I am sore today (2 days later!) but my knee held up FINE with the compression strap, and I exercised today without difficulty. I still can’t believe it. I’m hoping next year maybe I can get Genna to walk the last 3 mile leg with me--have her officially do it, but I could run another leg and then accompany her).
We’ll see.

Yesterday was picture day at dance (no rest for the uber-weary), the girls looked so cute. I did have a moment, I was helping Rosie with something while it was G’s turn, then checked on her. . .they were trying to have her pose on one knee, her arms out and raised a bit. . .they would get her into position and she would start to l-e-a-n. . .they would prop her back up, she would start tipping. . .I tried to say “um, she might not be able to balance” but they just got her in position. . .snapped the picture a hair before she did actually fall. . .

She just laughed, and picked herself up.

But it was a reminder, you know? IT IS ALWAYS WITH US.

Ultimately, even though her glasses had some glare, that’s the picture I picked. Even while fighting for the pose, she was smiling and smiling. . .I had this weird America’s Next Top Model moment—G also liked Directing the Shot, heehee, but really, it was such a struggle. . .but you’d never know it to see her.

Which kind of says it all, don’t you think?

We raced from dance over to baby Cyprian’s baptism party, got to hang out with Marta (note to Marta: avoid Genna during bookathon season! Although really, EVERY book she read this year had been Sandra’s…she could see the print, and understand the stories…and she would come show me where each book had Sandy’s name in the front. . . ), get our baby fix and some cake, and then head home for a quiet evening. Phew!

I am going to learn jewelry making better, and start hard core NF Endurance jewelry making, maybe I can sell on Etsy, I just need a bit more technical know-how. I want my girls to have a future. I want them to take THEIR girls to get dance pictures in sparkly costumes. I have to get creative, but I will find a way.

I am hoping the dishwasher guy comes soon. . . we’ve been without a working dishwasher for over a month, he is supposed to come back today.

Peace, all, and thanks for your support—
kc

and p.s. Happy 41st anniversary to my parents!

Monday, April 12, 2010 9:58 AM CDT

WEDNESDAY: this is kind of cheating, but I updated my blog.
http://www.kmc-movingrightalong.blogspot.com

*******************************

Hi, all! Happy Monday.

The kids are back at school, it's sunny, I did my exercise for the day...I have no excuse NOT to update!

Spring break was not exactly a break this year! Andrew's baseball kept us hopping over much of central Jersey. Normally he hitches a ride with a friend from school, or gets bussed, but with school off, it was my job to chauffeur. He actually missed a practice by accident because he gave the team his cell phone number as his main contact.

His cell phone has been broken for a year, and grades have to be in a certain place before it is replaced, thus making me The Meanest Hard Gluted Mom in the Universe.

It's ok, though, I have the Waaaambulance on speed dial. And I guess I’m glad that hope springs eternal for my poor boy. ; ) His team is playing really well, Andrew is holding his own, so that's a relief for the mom who wore a bag over her head to gym class and can’t fathom having a kid who's good at sports. He hit a triple in his second game, I think right now he's hitting about .500 . Egads.

We did have some spectacular weather, the girls got to help Grandma Camiolo 2 days last week, which is always a treat for them (and made my chauffeuring much easier, I hate dragging them on endless drives).

Rosie started softball last week: her team is the Emeralds (even though she has trouble saying that!), with the bright green shirt & visor she looks like an ad for Ireland Tourism. She told her coach at the first practice not to worry, she had been practicing with her brother who plays baseball. And since there are first graders on the team this year, she isn't the shortest! Barely true, but we'll take it!

Genna and I went to the RU LAX game on Wednesday night. We never get to go to midweek games, G needs to go to bed by 8:30 in order to stay awake at school, but with spring break, we were happily off to RU. The night was gorgeous (and as we walked up to the field and G saw the monster lights, she said, “OH, I will definitely be able to see!” : ) ), G loved hollering at the girls, who CRUSHED Monmouth 18-6. The only awful moment was when one of G’s big sisters went down with a significant injury...we are praying for you, A...

After the game, G's Big Sisters presented her with a purple iPod...engraved on the back…they made a video of the team doing the wave for G(which G has shown everyone in central Jersey, I think)...she was ECSTATIC, one of the songs on there was the song her cabin did in the talent show at camp, I was in the shower when she found it and Still I got a full report (some breaking news Just Cannot Wait)...it was a great night to see everyone. We hope the team does great in their upcoming road games.

Yesterday we took the family into NYC for Mass at St. Patrick's Cathedral and then a stop at Bryant Park. Much of the trip was kind of disastrous (G couldn't see ANYTHING at church, even with tv screens on all the pillars...one other child was a Menace, the place was packed for Divine Mercy Sunday & Honor the FDNY Holy Name Society...the Menace didn’t notice the 100plus fireman in dress blues in the church until I mentioned it later?? which is telling)…...G did find the Yankees Build a Bear outfit she wanted to “torture Adam” , the hard core Phillies fan onco nurse at CHOP; we don’t go back with G until July and yet she was SO OBSESSED about this, so I guess that's good she found it. And I wore 3 inch heels the whole time, so I felt very New York even if my toe hurt and I could see over Dave's head. My pants were long, other shoes looked stupid...I kept reminding myself of that as we walked the 10 blocks to Bryant Park! :)

Today things are back to normalish. We are in countdown mode for Rosie’s First Communion, and we have 2 family weddings on the horizon (note to self: get over fear of flying stat! sigh)...and I'm helping with a big rummage sale at school, which should be fun. I am digging out things that should have been dug through long ago.

Some things, things from a few years back, are hard to purge.

G is so glad to be back in school...but school has become a real challenge, G studies, and works so hard, but doesn’t like me helping...and her grades are really suffering. I have to figure out how to help her get through stuff so she can understand it...sigh. She has been reading up a storm, the Bookathon is in full swing, but math is a trial, and she's struggling in areas she hasn’t before...I think we just need to work together, but I feel like we can never see right side up around here.

In other equally yikes news...I indulged in a Great Act of Extreme Folly. Like, as Acts of Folly go, this is Extreme. I shouldn’t get annoyed at G for being impulsive...sigh. I know I only update here about once a week when things are zen like , (!), so I should probably say something.

On Saturday, I am running (choke!) with the NF Endurance Team. Oh, the FOLLY!!! I swear I don’t smoke anything and I never have more than one drink EVER...WHAT WAS I THINKING???

Ok, so I am only doing 4.2 miles. Dave is doing 11, a neighbor friend is doing the other 11...it's the Jersey Shore Relay Marathon. We planned to do this for a while, then due to logistical concerns (and a son who didn't want to run) we accidentally missed the sign up...Dave was upset, I was bummed because I blew off a big fundraiser at A’s school thinking we’d be in Asbury Park on the 17th…so I e-mailed the race organizers last Monday and begged our way in.

This seemed like SUCH A GOOD IDEA until I hit “thank you thank you” after they said ok, and realized the race is, um, Saturday.

And I Do Not Run.

I'm not being self-deprecating, I really don't run. (I’m exceedingly proficient at self-deprecating, I promise I’m not doing that here!) I've been galumphing along on the treadmill, but not generally 4 miles. My knee persistently gives me issues, I bought an IT band strap thing to try and use to help it...but Oh, Prunella! (as my dad would say). This is a quandary.

I am SO SLOW. Dave & Suzanne run 8 minute miles or LESS when racing (Suzanne is running a half 2 weeks later, so this is a training run for her and won't be at full race pace...yeah, like 8:30 is a crawl?)...I finally got to about 11:30, but that’s still 1:30 off my 5K time of 2008.

Listen to me, I sound like I have a clue! Pay no attention to the girl in the neon yellow!

But REALLY, how long can I ask other folks to run for MY kids, My husband?

So, this is a good start. I hope I can get my singlet early enough so I can write names all around the bottom edge...Gabbie, Nora, Sandy, Drew & Joey, Emma, Katsie, Maddie, Caden & Preston, Ryan, Kyle, Kyle, Carly, Meadow, Ann, Siobhan, Ori & Amie & Melissa...Jennifer & Patrick...Jerry...Mia...Dakota...Kristi & kids...so many others...maybe I should have asked for a larger size, there are TOO MANY NAMES!...or I'll have to do initials...

So if you have an extra prayer for Saturday, or a direct line to St. Jude (patron of impossible cases), please think of our team. I think it's supposed to rain, sob!

Ok, this is once again War & Peace; thanks, all, for the reassurance, I don’t know why I got so rattled thinking I was blathering on to myself because I had irritated the whole world. These entries irritate ME sometimes, I wouldn’t blame you if you felt the same!

Have a great week, all…
And if you are feeling like It’s Time for a Cure already, my friend Heide made May is Brain Tumor Awareness Month gear for 2010 at http://wallofcourage.com ...you can get general kind of stuff or kid specific...both Rosie & Genna are there, sigh. There’s grown-up gear, too...

Special peace to the Pauxtis family, yesterday was Timmy’s angel-versary. :( sigh.

Peace,
k who would be fine if I could run as fast as I talk.

Monday, April 5, 2010 8:42 PM CDT

Hi, all.

Happy Monday.

Sunny, warm, springy, no school…and yet still Monday. Maybe there’s just residual Easter hanging around? Whatever it is, keep it coming!

After kind of a lame bummer of a Lent, the triduum (Holy Thursday, Good Friday, and Holy Saturday) were really quite good. The vigil on Saturday was so special…2 little boys we see every week at Mass got baptized and received first Communion, which was so moving to us…their grandma brings them to church…it was so beautiful. And Easter was lovely, so great to spend the day with family.

The highlight of the last millennium (er, few days) had to be the Friends of Jaclyn day at Rutgers Lacrosse. We got G there early (Camiolo early, not Appert early—my dad beat us there)…I got an FoJ t-shirt (this year they had smalls) and we headed over to the field…

And saw G’s “big sisters”…every girl had on a black t-shirt emblazoned with the Rutgers R on the front…and “Genna” with the number 1 on the back.

I almost had to lie on the turf.

G ran over with Rosie a step behind, carrying their big posters…the girls came over…I get all ferklempt even typing this all…we made a triumphant procession across the field, G asking about turf and do you need to mow it?
The team surrounded G…they had an Easter basket for her (which we managed to keep unmelted, despite the brilliant sunshine)…and a card announcing an iPod…G squealed “AN iPOD???!” and throughout the game kept saying, “I just can’t believe it, Mom”…for folks who have followed us for years, you KNOW how much the music means to G…literally the only thing that helped her in some really, really hard times…

G made pins for the girls (well, G made the hearts and I recruited some assembly help, she was struggling a bit)…
G helped with the coin toss, the girls joined the team arch o’ lacrosse sticks (just beaming with delight), then they went out on the field for the National Anthem (sung beautifully by Marlena, one of the team)…G wangled herself a cooler to sit on, and the game began. It was intense, RU came out really strong, then UConn caught up…G got to help with towels at the half (she LOVES to be useful), and the team came out uber-mighty in the second half and WON, a huge Big East win, 15-10…

Dave had to leave early to get Andrew at baseball, but we kept texting. And the tailgate was fabulous, as always. I had my first rice ball. Intriguing.

That kind of day carries us for about 27 years.

At the very end of the game a gentleman came up behind the bench with his kids…G got chatting (as she does)…then came to give a full report (as she does) …she was chatting with the Rutgers Athletic Director!! (who has ties to FoJ…hmmm, who knew? I love these connections). Mr. Pernetti is super nice, and I hope we get to meet him again when Dave is there.

So thank you, RU Big Sisters. What you do for G truly transcends words.

Since the kids are off from school this week, we are going to try and get down to Rutgers on Wednesday for the next game. G thought she might not be able to see the game…I was trying to tell her I’d just give her play by play like I usually do (her eyes just don’t see fast, if that makes sense)…then I realized she thought night games were played in the dark. : )

So Rutgers LAX, plus Easter, plus sunshine equals Happy Mom.

Baseball is going ok for Andrew; frustrating for the mom (apparently parents are supposed to know by osmosis what is going on)but good for him…too bad I don’t get frequent driver miles for this stuff. Rosie started softball tonight, which is cute beyond all.

Thanks, all, for thinking of us…and for reassuring me Somebody is still out there (I had a family member tell me 2x in about 4 minutes that They Don’t Read Here Anymore…not sure what to do with that…I mean, obviously, it’s fine, much of my family doesn't read here, no problemo, but why tell me? I don’t rant that often? I never rant without merit (she says in a ranting way… : ) ). Good thing I’m not insecure. ; )

Ok, I think sleep might be in order. How silly is it that I’ve hardly had chocolate now that Lent is over?

Peace out, all, and GO RU!!!

Peace,
K

I put pictures up on Facebook…I’m there under K.M. Camiolo if anyone is looking…

And thank you for the prayers for Joe, please keep them coming, we haven’t heard any updates…

Saturday, March 27, 2010 7:21 PM CDT

saturday Apr. 3: today was awesome, will update later. RU LAX made G & R feel like superstars...G still keeps randomly saying, "I just can't believe it, mom"...they chipped in to get her an iPod...after the scan day fiasco, this is...geez, this is huge. Anyway, more later... WE LOVE RU LAX!!!!!!!!!!!!

FRIDAY, APRIL 2
Hi, all, happy Good Friday. I will try to update after we visit our RU Lacrosse Big Sisters tomorrow, G is so excited. She has big plans...! A huzzah for Friends of Jaclyn is in order...
But I wanted to ask you to pray for our friend, Joe...he posted here last week for G...ok, made me cry just the love in his post...but Joe is very, very ill & in the hospital, so if you need something extra to pray for today, please pray for this wonderful man, who in the earliest days of G's illness was such an encouragement to us, sending G e-mails and prayers and jokes and just helping us feel less alone and lost.

Now he is battling a brain tumor, (HAVE I MENTIONED HOW I FEEL ABOUT BRAIN TUMORS?????) sigh, and is in a really hard spot right now. So please send him a prayer/good thought/etc.
thanks, and peace,
k

Hi, all.

I have no idea why I’ve been so paralyzed about updating. We’ve been busy, and I’ve been processing…

My girls are watching a St. Jude’s telethon right now. Yikes.

Anyway, scan day was ok. Big accident on I-95 made us 10 minutes late (which is saying something when you leave your house at 5:30 a.m.!), but G dashed in and we got settled. I asked about labs…apparently now you need some kind of pre-authorization/registration /paperwork thing….but I have sadly become the queen of “Immovable Rock of Yeah, We need you to do this, Thank you SO Much” until whatever we need gets done.

As it was, it still took the nurse 2 sticks to get Genna’s IV in, which was not cool, but G was so mighty.

She chatted with the child life specialist about trying unsedated…looked at pictures of a kid in the scanner…didn’t want to see the practice one…and then we were off. iPod in hand, I schlepped along…I didn’t know they’d let me go in with her, I thought I’d have to leave my glasses, but no, I was ok. Of course my little iPod somehow refused to LOAD Genna’s playlist…after all the wrestling, it wouldn’t go…I was beside myself…finally found an artist she liked (Chris Rice…none of the Matthew West transferred) …got it set…and then, there was the machine.

I’ve never seen my nemesis. Oh, Siemens Magnetom…so clean and white, like an oracle that holds the key to knowledge…it was a little…? for me.

The tech helped G onto the bed…G was lobbying hard for extra Doritos after the scan, the tech told her she could have 4 bags, not one! Yeah… ; ) They got her into position, put the monster headphones on, gave me earplugs…and then it began.

It wasn’t as loud as I thought it would be.

I could see G’s feet all stiff, her hands holding the panic button up under the sheet (the room was freezing)…like I said in the last update, she made it 3 series in…and then she had to get sedated.

Sitting there, watching the scanner scan (ok, watching a machine do nothing but make noise, it’s not like it moves), it was really a weird moment. I finally started to read a little, but MY brain was a bit…on edge?

I will say, when they made the call to sedate her, and I got ushered out, I did get a speedy glance at the computer screen…at least there was no obvious hydrocephalus or new lesion (I am SHAMELESS, I know)…so even though I was so disappointed for G, I felt a speck better.

Maybe we’ll try it awake again…maybe not. It’s up to G.

We had a bizarre moment going up to clinic…it is totally renovated since January. The sign doesn’t say Neurofibromatosis anymore, which is kind of a bummer to us (it meant a lot to see NF spelled out when we first showed up at CHOP in 2004). But the whole place is crazy new…but still, in the triage room window is a little picture I drew in the playroom one day of happy kids…this makes me feel strangely happy, even though I know eventually they’ll take it away.

Our doctor was very proud of G for trying unsedated…as were all the nurses & techs, everyone really encouraged her. G was pleased to meet the new child life lady up in onco clinic…we were befuddled, we knew her already…THEN we figured out, yeah, we met her in January with Rosie. Sigh.

G made Irish Soda bread for our Italian doctor, and we brought some of our homemade raspberry jam. This was the first time G didn’t have a pile of jokes…hm.

Generally things are stable. Since last July enhancement has mostly remained the same, there is one area of concern that’s been there awhile that our doc thinks merits some further thought. This kind of cramps my “DenialFest 2010” style, but it is what it is. We will scan again in 4 months…and our doc may discuss things with some folks, then we’ll see what’s up.

I’m still waiting on lab results.

G was ecstatic to go to Build a Bear on Friday, she picked a bunny covered in flowers. Her only disappointment: they didn’t have the pink Yankees outfit, she wanted to get it, bring the bunny to clinic next time, and then “torture Adam” (one of the onco nurses). She is more shameless than I am. Now she is obsessing about ordering the outfit online with her allowance money…poor Adam!

So…we continue Wait and Live. And try not to obsess. AND try not to drop kick the hypothalamus that made dress shopping with G this week a yikes. Ahem.

She was VERY pleased to go to Aunt Melissa’s bridal shower today. Big Excitement for my girls (and Costco cake…!).

In other related news, my little painted chair raised $275 for Ronald McDonald Camp! They led off the auction with it, and said there was a bidding war…this also makes me happy. Those camp folks have meant so much to G.

AND…a shout out for my sister Elizabeth, who is an assistant director for Rutgers Dance Marathon…at this very second they are dancing 32 hours straight for the Embrace Kids Foundation (helps cancer kids , sickle cell anemia kids…etc). I am so proud of her efforts for the kids…GO, ELIZABETH!

Ok. I better go be mom. But thanks to the 3 people who still read here (!), and for our RU Big Sisters, and for everyone who supports us. I hope I can shake the funk soon and get back in the game. We have to find a cure.

Peace,

k

Wednesday, March 17, 2010 11:22 AM CDT

Thursday: generally stable.
areas of concern still exist. we will rescan in 4 months. G couldn't do it without sedation, she tried so hard, got through 3 series and then they had to pull her out...she was nearly in tears, lower lip trembling..."this isn't my favorite to do it awake"...so we let her sleep...
but she is good, REALLY crabby right now (hey, so am I!)...
so stable is good. I just wish we could really have clarity sometime. It's so complicated...

peace, k
*******************************

Hi, all.

I know, I am the worst updater Ever.

We have been so busy…and things have been a speck stressful (what else is new?). I just haven’t known how to put all the frenzy into words.

Quick version: Great Wolf Lodge was mostly great, the girls & I had a blast. Andrew had to miss a day of baseball to come, which only became an issue after he arrived at GWL (for him, not the coaches). Alas. But we did enjoy our all-too-short time away. To my kids’ great surprise, my sister Cath came in from LA for Meg’s birthday. She was at my parents’ house when we got home, which was super cool.

Once back from our mini-sojourn, G was having school panics, she HATES missing schoolwork. Andrew’s baseball stuff was very up in the air (don’t even get me started) and Rosie was…well, just Rosie…super cute while quietly leaving giant creative messes EVERYWHERE.

Saturday was my sister’s birthday, Dave & I (and Meg with a bunch of friends) went into the city (NYC) to see In the Heights (fabulous) and then go to dinner. The show & meal were fantastic, the weather was frightening. Worst drive EVER into the city, the rain was coming down so hard. Coming home, as we drove down the steep hill from the highway it was like driving through a river, so much water was on the road. We didn’t quite get how major a storm this was supposed to be…until the next day, when we found out the next town over was totally flooded, the town just down the hill from us was under FOUR FEET of water…insanity! The kids had off from school Monday, the flooding was so bad. We’re fine, our house is kind of on the top of a small slope. But a lot of our friends have a LOT of water damage.

I am also still slogging through thank yous. I just have to address envelopes now, the letters are written. It’s a very good but very long job. And money is still coming in for the Coffeehouse, woohoo!

In one other mighty yay, we found out on Monday night that Andrew made the freshman baseball team at Immaculata. We are sooooooo relieved, and proud of him for working hard. Now if we could only transfer that work ethic to the academics…

And tomorrow is scan day.

I kind of don’t want to talk about it. Random emotionalness hit kind of hard the last 3 days. It’s stupid, we’ve done this SO MANY times before. We leave here around 5:30…I have to drop off my painted chair for Ronald McDonald Camp, somewhere in Philly too…note to self, must e-mail Maria…G is going to try it awake, we’ll see how that goes. I’m having iTunes issues, I may have to erase my entire iPod to get her mix on there…sigh. Stupid computers. Not sure how I’ll get through waiting, my normal approach is PLAY LOUD MUSIC DIRECTLY INTO MY EARDRUMS! I should just go buy G her own, she loves music so much and uses it to help herself sleep, relax, etc.

ANYWAY, she is trying to be brave & try this. We are going to Build a Bear on Friday even if she can’t get through the whole scan without sedation. She has earned it.

I will try to put a line or two on here tomorrow night to say what happened…definitely on Facebook. Sigh.

I hate this so much.

Today I have 42,000 things to do. If I don’t wash my kitchen floor it is going to implode with grossness…and I still have to meet a mom for lunch, to talk about what chemo is like when the doc says your little kid has to start it because of T^&#*$^@ NF and *#W^$#& brain tumors.
What do you think my chances are of holding things together? Yeah, I know how I’D bet on that, if I were a betting gal.

At least today is St. Patrick’s Day, the Irish Soda Bread, stew, buttermilk pie, and green jigglers are done. Cooking IS my therapy.

Too bad cleaning isn’t… : ) Well, I think floor washing might be. The crumbs are actually forming a picket line as I type, holding tiny signs that say “Clean Us!”.
Please pray for us tomorrow.

Must run and continue Mom vs. the iPod…

Peace all, and enjoy the spring that finally seems to have arrived.
k

Monday, March 8, 2010 1:29 PM CST

Hi, all. Sorry for the delay in updating, yesterday I was in official Road Kill mode. Ergh.

But on Saturday night, our Coffeehouse for a Cure went really well, I think. The number of last minute yikes were about the same as other years…making the coffee was more time consuming than we thought, the set list wasn’t done until Saturday (and then there had to be a change at the event), Andrew had baseball tryouts the same day, etc. etc.

We are so very grateful for everyone who stepped up on Saturday and helped us. We realized Exactly how much we rely on our extended family…since half of them have moved out of the state. We are hoping there is no correlation…anyway, we are so thankful to the Garcias, the Allens, the Khoury’s, my sister, my parents & sibs, Dave’s mom…even people I hadn’t asked who just showed up and helped (the 2nd grader who decided to do all the vacuuming afterwards was the cutest! And very thorough).

This year I wrote out a little speech so I wouldn’t get all emotional and forget half of what I needed to say. Of course the speech wouldn’t print, I ran out of time, and forgot to finish…2 seconds into my intro for the slide show (from last year, finally got it to work!)…yeah, all choked up.

Infuriating.

But how can I say this show is about our friends…and at least 4 or 5 of the kids in the slide show are back on chemo since last year….one has died (angel Nora)…I couldn’t even speak it.

I will not let NF rob me of my voice. So I looked like a dork. Whatever. Everyone in that room now knows we love the kids in that slide show, most of whom we’ve never met.
Sigh.

The raffles were so fabulous this year…really astoundingly good, people were so generous, and creative about it…, Marta & Deedy (Nora’s mom) made gorgeous baskets, and Marta rounded up about 47 fantastic gift certificates (and an astounding homemade quilt sewn by a friend)…so many baskets went to the person who really could be most blessed by them, for lack of a better explanation…the music all came off well, I think, Rosie & cousin Phoebe sang a Shirley Temple song...Genna sang a Sandra Boynton song (sorry--just realized half my sentence got cut before!). I may put up video, but I was next to G while she sang…and they—whoever THEY are—aren’t lying when they say the camera adds 10 lbs. I can tell you EXACTLY which portion of my anatomy those pounds appeared on. Yikes…the hips don’t lie…)…ANYWAY, our performers were awesome.

I regret that I didn’t get to talk to the NF folks who came until the VERY end, and some had already left. I couldn’t sleep Saturday night worrying about this…really, unless Dave & I figure out a way to spread out the details more, I am trapped in detail mode at the event…but I am grateful I at least got to say hi. Genna found Maddie , another NF kid who we’ve never met, and she was her normal chatomatic self. I’m so glad I finally got to meet mom, Linda!

In big raffle news…Rosie won the American Girl doll. I can’t believe it. All the times I’ve been to events and put tickets in FOR Rosie…here, at our event, when she used $5 to put 3 tickets in, I dumped the bucket into another bucket, shuffled, held the bowl over my head and picked with my eyes closed…I could NOT BELIEVE it…Rosie won. She was Ec-Sta-Tic! Lanie has been going everywhere with her, Rosie improvised a bunk bed for Lanie and the imitation AG Doll she got for Christmas…she was SO excited.

This also provided a valuable life lesson for Genna, aka She Who Did Not Win the Much Wanted iPod…eek!

All in all, it was a great night. I was so anxiety-wracked that night and all of yesterday, it’s only today that I can kind of reflect a bit more. Really, I’m Just So Glad It’s OVER. O-ver.

And today is SUNNY and near 60 degrees, I ran errands this morning…bought baby clothes for my friend who skipped the Coffeehouse to give birth (!), got me some Wendy’s French fries, and generally am in a frighteningly good mood. Really, it’s unnerving how cheerful I feel. ; )

Tomorrow we are off to Great Wolf Lodge for one night. Andrew &Dave have to join us late, the girls & my sister Laura and I will head out early. Stupid baseball. Genna is having major anxiety about missing school, but I am glad for some No Stress Family time, even if it is only for 24 hours. ; ) With all the other travel we have to do this spring for family weddings, I could only save up enough for 1 night..and with G’s scan next week, we just have no time for more days away.

On Thursday, Genna’s teacher asked me when her next scan was. This is never a question a mom wants to hear. G’s been acting a bit more…? I don’t know. I am in a good mood, so I am not going to think about it right now. I am going to go eat a leftover cookie and drink a soda and enjoy this day. Yup!

But please, please pray for us next week especially. And for Andrew, going through tryouts this week. He has to miss one day, which the coach said is ok (they only told us SATURDAY when the tryouts would be…argh!). But it is a bit stressful.

BUT I AM IN A REALLY, REALLY GOOD MOOD. SO THERE.

Ok, I need to stop typing here and get some of that sunshine! : )

Peace, and thank you all—
Kristin

Monday, March 1, 2010 8:57 AM CST

Hi, all…Happy Monday.

Well…it’s been CRAZY here…2 snow days…another foot or so of snow…a gigunda snowman…baseball…CCD…new computers…COFFEEHOUSE baking out the wazoo (I think I’ve made 11.5 batches of cookies, which works out to be about 50 dozen cookies. And I’m not done…ack…

The baskets I have are wrapped (I know more are coming in), I mostly have some sense that there will be some music at this event, and we are now pushing to find able bodied youths to help us set up. Andrew may have baseball tryouts on Saturday…down by the buffalo farm…we are trying not to freak out about this, but logistically there could not be a bigger yikes. There’s a meeting tonight, then we’ll know more what the details are.

Phew!

I won’t lie, I like snow days. Except when certain of my children get sniggy, snow days are a blast. We finally had to surgically remove Rosie from the Wii Littlest Pet Shop, but all in all it was nice to have the kids home. Now I need the Magic Cleaning Fairy to come and fix things…sigh. I desperately need to wash floors…but I don’t know if it will happen before Saturday.

Coffeehouse for a Cure: St. Mary’s Stony Hill, Watchung, NJ…doors open at 6:30, entertainment starts at 7:15. We have at least 40 raffles so far, some really, really good stuff. If anyone is in the Jersey area, come on down!

I am especially nervous/excited this year to have a bunch of our online NF friends coming for the first time. This means a lot…I want everything to be fun and nice and good…
AND I want to celebrate HOPE. Hope that we can beat NF, even if it’s through sneaky treatments or research or whatever. The whole vibe of the night will hopefully just be Hopeful …and , admittedly, quite delicious. : )

This past week marked Sandra & Timmy’s birthdays…our two friends who sort of embody the overlap of our NF world and our brain tumor world. We have to find a cure…we must find a cure.

Today is also the 8th anniversary of Dave’s grandmother’s passing…I wish Grandma could have met Rosie…and the older version of Genna, especially, I think they would have been so funny together. We love you, Grandma Nikischer…

So we march on…

One ginormous hooray of the weekend was the Rutgers Lacrosse game...we hoped to get to the home opener on Wednesday, but I just couldn’t manage it logistically…so Rosie & G and I went yesterday. Meg & her kids came too, Genna sported her RU Snuggie (it is a sight!) and Rosie and cousin Phoebe kept up a 12 minute continuous chant of “Let’s Go Rutgers, Let’s Go!”…seriously, you know how that chant peters out at sporting events? Not if it’s Rosie & Phoebs chanting! Genna of course kept hollering too…and RU upset #20 Cornell in an awesome (if COLD) victory!!! WOOHOO!

Genna was so happy to see everyone (and show off her Snuggie!)—she had already been telling EVERYONE that RU won the opener we missed (we follow along online)…she is so proud of her Big Sisters!!! WOOHOO!

And yes, the tailgate was wildly impressive. Really, I need to take a picture sometime. Genna and Rosie were agog as always…and their cousins, seeing the spread for the first time, were double agog. Seriously, if you need a feast catered, call the RU LAX parents, these folks have mad skills.

Then we went to Aunt Meg’s so Rosie & Phoebe could practice their Big Number for the Coffeehouse. Yes, there will be some extreme cute this year. : )

Last night I flipped the page on the calendar—can you believe it’s MARCH??…sigh. Scan day is in 18 days. I know, duh, I scheduled the darn thing. But ugh. Instant nausea. G told me a week or so ago that her head hurt “right by my shunt”…no other symptoms, nothing. It’s nothing. No-thing. Yup. Nothing.

18 days.

G is psyching herself up for trying it awake…drawing heavily on the promised Build a Bear trip.

Really, the Coffeehouse is the perfect pre-scan activity. Totally all consuming.

Which is probably a good moment to say I really have to get more butter, and then go make more space in one of the freezers here. I need to make sugar cookies yet, and lemon bars. And then we’ll see…maybe some Rice Krispy treats (I know that’s kind of cheating, but kids like them). No brownies though, they make a terrible mess to clean up, I am told (by last year’s clean up helpers….lesson learned! : ) ).

So if you have a spare thought for us this week, please pray for the details of this event. I know I will have a full bore linear meltdown at some point, Dave’s already nearly there…but it all comes together in the end. And for Andrew with his school stuff (baseball mostly), and G just because…Rosie is fine ; ) …And please, PLEASE pray we don’t get more snow! YIKES! At least I could drown my sorrows in cookies if we did…

Ok, MUST go to the store!

Peace,
Kristin

oh, I forgot...I have a blog now. I know, this essentially IS a blog, but I am trying to get writing again in a less rambly more organized kind of way. So if you feel like more mania, check out www.kmc-movingrightalong.blogspot.com .
There are words there. ; ) No promises as to the kinds of words, but there are words galore. ; )

Friday, February 19, 2010 12:40 AM CST

Hi, all…

We are in Full Bore Coffeehouse Planning Mode here…our extra room is filling up with baskets…the American Girl Doll came the other day (my girls are over the moon about that)…a local store donated a big Webkinz basket…the local Hallmark store donated a Vera Bradley bag & a $50 gift card…we have movies & crafts & party baskets, a beautiful Baby Basket made by Angel Nora’s mom, Deedy…lots of restaurant certificates (our favorite pizza place…the restaurant where we went for G’s “last supper” before chemo 5 years ago…the new bakery in town…and more)…a ginormous snack basket…so many wonderful things…so many donated things…so many generous people.

Honestly, I do find the whole business utterly overwhelming. I am a drown in the details kind of gal…so I think about “do we have the little numbers that go on the little cups that hold the raffle tickets” while Dave manages the “do we have big coffeepots, this thing is called a COFFEEHOUSE so that’s kind of important”. We make a good team…and I know that the little stuff will work out. I am still a little nervous about all the music…but I know it will all come together. It always does.

Coffeehouse for a Cure for NF …March 6, 2010…St. Mary’s Stony Hill, Watchung, NJ…$6 a person, $12 a family…raffles, music, cookies, and fun.

I so hope it all comes together! We have to keep slogging away for a cure. We have to. Sometimes folks say “wow, your fabulosity is beyond words” (or something like that) for doing all this…but really, how can we NOT do this? It’s such a small thing…one little night…but it’s our tiny line in the sand against NF. I am usually stressed out, manic, and disorganized in putting this together—truth!—but we have to keep trying. We have had the Coffeehouse in the worst moments of our NF journey, and you know what? NF couldn’t touch our cookies, our music, our raffles, OUR HOPE. It can’t, we won’t let it. So we have to do this.

Our fabulosity is completely separate. ; )

In other news, I don’t want to jinx us, but the stomach bug G had…well, let’s say it stayed with her. Phew! I hope we avoid THAT. I have to start baking 1000 cookies on Monday. Literally.

The long weekend was nice, the girls got to go help Grandma on Monday, and Dave (to my surprise) was home! We got through a lot of Coffeehouse details then, which was good. The week OF the Coffeehouse is kind of crazy, Andrew has baseball tryouts…yikes. Between now & then we have about 57 normal life things to do…but don’t we all?

I also finally bit the proverbial bullet and scheduled Genna’s scan. Ew, lurching stomach just typing that. BLEH. March 18. 4 weeks from yesterday. Bleh.

She is going to try and do it unsedated for the first time. We will see how this goes…they will treat it as a sedation appointment in case she can’t get through the first series or two without moving. I don’t know if G is claustrophobic…I know she has a lot of anxiety…so we’ll see what happens. We promised her a trip to Build a Bear the next day even if she can’t make it through. If she manages to do it, ultimately scan days will be a lot easier for her. But if she can’t, that’s ok too.

There is SO LITTLE we can control about any of this. If giving G some sleepy medicine every couple of months helps her, she can do it forever for all I care. The radiology staff might not agree, but they don’t get to decide. So there.

G has been having a bit more stress than usual…not sure what’s up. I just hate seeing her sad & anxious. Even so, she is VERY EXCITED about the Coffeehouse…it’s such a good thing for the girls to look forward to.

All 3 kids have really been enjoying watching the Olympics. Rosie is debating about starting luge (um, no) or being a “dancing skater”. She was practicing her “skating” in the kitchen the other day. I love the Olympics. I always have…and I feel like this is the first time my kids really have been able to enjoy them with me & Dave.

Which got me thinking…as I kept seeing all the coverage, and the references to what some of the athletes had done in Turino…why the heck did I not remember ANY of this? I can remember Dan Jansen…Brian Boitano…Bonnie Blair…heck, I remember the Jamaican bobsled team. I remember Nadia, for goodness sake! Why can’t I remember the most recent winter Olympics??

After a few days of feeling bewildered by all the Turino references, I finally had my lightbulb moment. February 2006. What was I doing in February 2006 that has wiped the Olympics from my memory completely?

You know how all roads lead back to Rome? (well, if roads are into air travel, I guess). I am becoming increasingly done with my mental roads so often leading back to 2006. It’s unnerving. And annoying. And not where we are headed…

Because 2006 was grim. On most fronts, it was really horrific. February was the worst of the worst, but really, 80% of the year rotted. I hate that it keeps oozing out into today. But you know what? THIS is why we do the Coffeehouse! In defiance of my stupid mental wiring. In defiance of That Which Made 2006 Grim.

Our future, to go vaguely biblical, is one of HOPE.

And that is what we’ll celebrate March 6, even as I start to enter full bore linear panic about G’s imminent scan…HOPE. HOPE can stop the ooze of the past…it acknowledges the ooze…but it stops it and shows us the way is going to be bright.

In hope,
Kristin

Wednesday, February 10, 2010 9:10 AM CST

Hi, All…

Happy snowy blizzard hooray day! : )

I am so happy for a real storm. We had some snow on the weekend, but after dire predictions of wild yikes, we were just north of where the Real Snow fell. Bleh. Even Dave is home today, which is indicative of Epic Alaskan Wilderness Level Snow. Heheheh.

The last week and a bit have been … well, interesting. John had his big race…he completed 72 miles in 34 hours, dragging 40 pounds of gear over a snow covered trail in temps that got to 21 below zero. While he was disappointed to not finish, the Yeti has a goal for next year!

Yikes. We are super proud of John, even as watching his tracker thing online all day Monday/Tuesday made me a nervous wreck.

My niece Katrina had a good scan this past week, which was an answer to prayer. She does not need surgery right now, so phew.

Also last week a friend of our family was diagnosed with a glioblastoma (the same tumor musician David Bailey beat once and is battling again). Even though we aren’t personally super close to this family, a few things stand out. It’s singularly devastating to me when I find out someone has a brain tumor. Doesn’t matter who, it just is very upsetting…as I’ve said before, knowledge isn’t always power. We know EXACTLY what those first days are like. For the record, those first days are excruciating. Physically painful to the family. I wouldn’t wish the first days on my worst enemy.

Also, Joe (the gentleman dx) was very kind to Genna when she was first sick…sent her e-mails with jokes & little funny pictures of cartoon animals, mobilized people in his circle to pray…he really went out of his way to be kind to a kid he only knew by association (he is more friends with my parents & Dave’s parents). This just makes it worse.

But he apparently came through surgery well, super upbeat and positive to everyone at the hospital…if you think of it, please send a prayer out to Mr. Joe.

Onward & Upward…

Saturday we had pitiful snow (still muttering about that) and actually went to a friend’s house for dinner, which was so nice. Just to laugh & eat & laugh some more…the best therapy ever! : )

The Super Bowl : well, I didn’t much care who won, I like both teams. Dave made his famous chili, a bunch of Andrew’s friends decided to come over, which was fun, we generally had a mildly jolly time…until the last 4 minutes, when Dave said, “hey, if the Saints score again and by some wild chance the Colts don’t, we’ll win the pool” (which a friend runs every year). And then the Saints intercepted…and it was a Whole New Ball Game for Me! We actually WON!!!! Holy Toledo, I still can’t believe it. We may use a bit of the money to get something nice for the Coffeehouse, like an Ipod or something to raffle. Woohoo!

Unfortunately, G was really dragging Monday morning, just tired and weepy. I almost didn’t send her to school, but she wanted to go…at 10 a.m. I got the dreaded “she threw up in the classroom!” call (she never said her stomach even hurt!). Poor G. She was so perky when I picked her up (“Mrs. F said that was the First Time anyone ever threw up IN her classroom!”…congrats, G)…but she was asleep 15 minutes after we got home. She was so sick Monday, 103 fever, throwing up, just miserable. Yesterday her stomach had settled but she still had a fever and pretty much stayed on the couch all day. By evening her stomach really hurt. I hate seeing her like that. She was so sad.

That said, right now she is doing “free step” on the Wii…I guess she’s better! : ) (she just told me she did 3002 steps! Hmm, impressive!)

In other news, the Coffeehouse is less than a month away (AAAAAAAAaaaaaaagh…oh, I mean, how nice!). We have a pile of great raffles this year…a bunch of restaurants, some local businesses, some fun baskets, AN AMERICAN GIRL DOLL (just found out this weekend about that), really good stuff. My musical side of this…not so set yet. I just want it to be really good, we have folks coming this year who haven’t come before, and I want it to be perfect.

Coffeehouse for a Cure to benefit the Children’s Tumor Foundation, Saturday March 6, St. Mary’s Stony Hill in Watchung, NJ …doors open at 6:30, entertainment begins at 7:15 …$6 a person/ $12 a family or just come. Raffles, Music, Crazy good Cookies, and FUN!

Rosie is saying she lost an earring back…uh oh, better go be mom!

This Weekend is the 20th Chocolate is the World’s Greatest Natural Resource Day, please celebrate accordingly. ; )

Must go search for a tiny earring back in our playroom (uh oh)…
Peace, and stay warm, all! I have to hunker down for the blizzard. : )

Kristin

Monday, February 1, 2010 2:42 PM CST

Hi, all…can you believe it’s February?

Today my brother started his 135 mile trek near International Falls, MN. Temp at lunchtime was 6 below…YIKES. He has a tracking thing which apparently worked great between the hotel & the start line…and then stopped! Hopefully if he gets it going again we’ll be able to follow his progress.

It's the Arrowhead 135 if you want to google it.

I am wearing my Yeti shirt today in honor of John’s trek. It’s not too late, if anyone wants to donate…check out www.yetifunk.com and then click on the Yeti Fundraising link on the right. Dinero goes to CTF.

Go, Yetifunk!

We are chugging along, prepping for the Coffeehouse. Dave & Genna & Rosie went foraging for donations this weekend and did remarkably well (much better than last year). We should have a bunch of really nice gift certificates and such. G even managed to wangle 2 free giant chocolate cupcakes for her & Rosie. Nicely done!

Andrew survived exams, G & R survived report cards…I am trying to survive having to change my expectations for certain academic things…the kid who can tends towards apathy, the kid who struggles is obsessively diligent, and the quiet kid gets straight As. Interesting dynamic there.

We went to the soup kitchen this weekend, which was really good. Getting out of the house to actually GO is always a train wreck, but once we get there it’s all great. Rosie was nearly falling asleep in the kitchen…cousin Phoebe was here on Friday night…I finally gave up telling them to sleep at 12:30 a.m. (and only because I finally fell asleep myself!)…Rosie fell asleep Saturday night at 6!

We also spent a fair amount of time watching the CTF car in the Rolex 24 Hour Endurance race at Daytona. I was just glad the car survived the entire 24 hours!

I am also chugging away on my chair for the RMC auction, I have to get it done this week so I can figure out how to get it to Philly.

I feel like my brain is just like this right now, little hurried statements of do this do this do this. I miss working. Not that I don’t have stuff to do at home, but the structure of needing to leave the house every day was helpful to my brain. Except for the dressing up part, I don’t miss that!

I need to get Rosie ready for dance & out the door in 10 minutes, so I better run…I’m hoping we can figure out a way to have some more balance here…things get stressed out fast, which is way not cool. Yesterday was 4 years since The Worst Scan Ever (followed by the worst month ever, craniotomy, eek)….4 years. Unbelievable. I hate having stupid stress here when we have had REAL stress here. 4 years ago was off the chart stress. Hard Core Stress.

We can’t forget the gift of today.

Must run, Rosie needs her hair contained before dance…

And I need to figure out some music to go with these raffles!

Peace, all…
Kristin

Sunday, January 24, 2010 10:44 AM CST

Hi, all.

I have regrouped a bit, and figured I should update when I’m less in road-kill mode!

Scan day did GO well, I didn’t say much about that. We did freak people out a bit, not having Genna there. You know you’ve been going somewhere too long…or maybe the folks at CHOP really are just nice, the fact that they remember G down in MRI when she’s NOT there always surprises me.

Granted, I think she’s nearly up to 25 scans, so maybe my denial is just running strong in that area!

Rose was really shot from the sedation. She didn’t sleep at all on the way home, so I decided to let her sleep in the morning. Normally Genna goes right back to school…but Rosie slept until nearly 9, and then was sniffly and sore and pitiful. A long bubble bath perked her up…and then I just let her stay home. We both went down for lunch duty (ugh), I managed to not randomly weep or curse at anyone (day AFTER scan is when everything goes out the window!), Rosie played with her class quite shamelessly, and then we went home and I collapsed for a bit before I had to take Andrew to baseball.

At least the days are getting longer, I could really see the buffalo in Readington. Why they make me feel better, I’ll never know. They just look so funny to me, a herd of buffalo in NJ.

ANYWAY, things were back to normal-ish by Thursday.

Yesterday Rosie made her First Reconciliation at church, and we celebrated with pizza & a Costco crumb cake, a new discovery for us. Yee-haw. Really insanely good!

I’ve also gone into full-bore Coffeehouse mode, we are only 6 weeks out and I am not nearly as together as I’d like to be. Hopefully this week will be the big week of firming up details with performers and figuring out some more good raffles and such. This is my first week not working & not going to CHOP, so I need to get myself into some sort of system. I also have to keep working on the chair I’m making…I broke my new woodburner (frickafracka) which set me back…I think I may have injured my sister’s woodburner…argh. Not sure what’s with that, it’s not like I haven’t done this before…

So we are busy…Andrew has midterms, G has projects (she is thrilled to have gotten Louisiana for her state project because of her buddy Miss Connie!), busy busy busy. Genna wants to know if we’ve heard back on any raffles about every 30 seconds or so…and Dave is really busy at work, as usual. I have to also get off the Denial Train and set up G’s next scan for March…yes, in the next 6 weeks. Still trying to decide if we should go before or after the Coffeehouse. Our first concert was 3 days before G’s brain surgery (which no one knew, we hadn’t told G yet, it was a hideous time)…remembering how I was functioning at a big fundraiser with bad news in my head isn’t necessarily helpful. The next year Sandra was in a tough spot…the year after that Rosie had just been diagnosed…not sure I want to Invite Drama To Come, if you know what I mean…

But since the brain tumor fairy has YET to show up and take the tumors away, I have to get myself in gear and set up the scan. We are pondering having G try without sedation, but I’m not sure it’s worth it for a variety of reasons I just don’t feel like typing.

We did have one near ninja moment this week with a comment someone made to G at school. Someone who should know better. Someone who has seen my little ninja pointy things of smite before…but it got taken care of by the principal (who happens to be G’s grandpa), so I got to hang up my ninja gear for the day. Foolish mortal, messing with G during R’s scan week…silly, foolish mortal. Ahem.

So that’s where we are!

This week my brother is going out to his 135 mile trek … I am still figuring out Yeti tchotchke to thank people with for supporting him, check out www.yetifunk.com and the Yeti Fundraising link to help support CTF. And pray that he survives this thing, it’s a crazy difficult trek (check out his supply list…YIKES!)

AND our Coffeehouse for a Cure 2010 is around the corner (YIKES! again). March 6, at St. Mary’s Stony Hill (www.stmarywatchung.org) . I hope it’s awesome. All proceeds go towards NF research and support. It’s budget friendly and family friendly, $6 a person and $12 a family SUGGESTED (if you don’t have cash but want to come, please show up, Andrew does the tickets and he’ll let you in!) We really just want folks to come and celebrate HOPE with us.

I know it’s small, but the Coffeehouse is what WE do, if that makes sense…we bake, our friends sing their hearts out, we tell people about NF, we raffle stuff, I run around like a maniac, Genna schmoozes, Dave works so hard, our families and friends all come…it really is an awesome night…and EVERY DOLLAR goes to help NF folks, even if it’s a single dollar and not a $100…ooh, can you tell I’m fighting off my annual inferiority complex? ; ) We so live in the wrong place! Although really, if we were gazillionaires, I think we’d Still do the Coffeehouse in our church basement, I’d bake 95% of the cookies, we’d beg our friends and their friends to come sing…it’s a special night. People seem to have fun.

I guess I wish we could do more. I wish by doing we could make the hard parts of life with NF go away. But really, doing just gives us some sense of empowerment in the face of the ever changing yikes of NF.

So we DO. And we hope that gives us more time to BE: happy, healthy, hopeful.

Thanks, all—we so appreciate you, and we hope if anyone is local-ish they can come out to the Coffeehouse. For out of town folks, we do have some room here, anybody can crash here (if you don’t mind a futon and maybe an air mattress!).

If anyone reads this today, please check out Nick News tonight at 8: Kids with Cancer…our online optic glioma buddy Lexie (“who told us about melatonin” G would add) is featured, please check it out!

Ok, I better go work on that chair, in case I have to go buy another woodburner today!

Peace out, all,
k

Tuesday, January 19, 2010 7:06 PM CST

Hi, all.

Superfast update: word of the day is stable.

But.

It IS good news, the very concerning stuff (more plexiform than og) are rock solid stable, and we are so happy about that, really, really happy.

But.

No need for freak out, but there is a new area of something. Could just be weird NF...but it looks different, and the radiologist (one of the 2 we like to have read the girls' scans) says "glioma cannot be excluded". It's blindingly obvious to Dave & me, which is really not cool. If WE can see it easily on a scan, it can be seen from space, you know?

We can still wait 6 months. But I am exasperated with NF, chameleon of disorders.

Not scared, not weepy, (wait until tomorrow, I know)...just bugged. Really, really bugged.

Rosie was a rock star, she was so sweet and good and brave. She keeps telling the Tale of the Two Stick IV like it’s a war story (thank GOD for versed, she was so zenlike through the moment, even though she said it hurt)...she was really, really dizzy afterwards, putting her finger on my face and saying, "you have a nose here...and here. You have eyes here...and here. You have a smile here...and here." And then giggling, "you look silly". But eventually she got less stoned.

Otherwise she's great. The hospital is crowded and under construction, but Rosie mushed her way into the packed playroom and started coloring me a "Happy Holoday" card. Almost 2 years to the day after learning she had tumors...how has it been that long?

We just got home, G should be home from dance in a minute, so I have to run...

Line of the day: a young boy next to us in clinic, who heard he might be moving into the long term survivor clinic, asked his mom, "In survivorship, what happens?"

Yeah, that definitely was the line of the day for me. I hope someone figures that out soon.

Thanks to all who have helped my brother. Fundraising has been tough, and in 2 weeks he's running 135 miles unsupported through literal snow & ice & gloom of night to raise $ for CTF...for my girls. If anyone can help with even a $1, check out www.yetifunk.com and click on "Yeti Fundraising" on the right hand sidebar. Thank you.

And please pray for our dear friend Grace, who just learned yesterday that she lost a brother in Haiti. :(

Thank you for your prayers today, and let’s cure this Y^#*$()^@# thing already, ok?

Peace,
K

Thursday, January 14, 2010 10:27 AM CST

Hi, all.

This is why I don’t resolve to update more often. Doomed to failure.

We are chugging along. The official paperwork for the Coffeehouse is in, we should have our raffle license in a few weeks. Now I have to start working on donations, performers, etc. Yes. I have to start. Must…start…

Honestly, I have talked to a few people, gotten some letters ready, etc. Genna is raring to start sending out letters! She has no fear of asking people for stuff…the force of Sandra runs strong in G. I just finished my grades, so now I have no excuses for Not Moving. Today is my first day not teaching; my course ended yesterday, (with cake, as is appropriate). I kind of wish I was still teaching today (although I’m loving wearing jeans and my ridiculous Nanook boots), I hope my class is noticing what’s going on in Haiti…we talked about so many of the organizations going in to help, terms we used are being bandied about in the media…I hope they notice. As a teacher, I hope they apply what we talked about with regards to the global community.

As a mom, my heart is breaking for those poor families, those children, the pictures are so horrible…

One of our very favorite people at our local grocery store is from Haiti. Favorite as in, every time I go to the store Genna asks, “Did you see Grace?? Did you go to Grace? Did you say hi to Grace?”…and if G comes with me, she hunts down Grace and hugs her. Rosie too. Grace has been praying for G for years now…and she is still trying to track down family members in Haiti. Our prayers are with all of those people, especially the families of Grace and our other Haitian friends at ShopRite.

Sigh.

Oh, did you notice the pachyderm? The large, break dancing elephant in my mostly organized craft room/office? Yeah, about the elephant…

Rosie’s scan is Tuesday.

My computer is not letting me on Facebook; I am realizing just how connected I stay on Facebook, and how lost I am not being able to connect with the nf/bt and friends crew. Especially this week…I am feeling it.

I don’t know what to feel about Tuesday. It’s always sickening, even as I feel like Rosie will be Fine. She has to be fine, right? She is so active…doing great in school…she is addicted to Wii Fit (I wish Genna was, alas!)…last night R came down in an exercise shirt and shorts and had me put her hair up so she could go do the Wii! She is totally stoked about the possibility of joining the Performance Company at her dance school in the fall, so she can dance at a minor league baseball game…she is doing so great…

That part of my brain is trying to hold against the part that knows NF. The NF Knowing part is loud and rude and obnoxious and oh, so persistent. We know. We know what it can do.

I did look up all the current plexiform trials just to be prepared. I spent some time trying to understand multi-kinase inhibitors and anti-angiogenesis drugs. I feel a bit more knowledgeable now.

My fire was fueled a bit (!) by an e-mail from a local chiropractor who pointed out that we have a moral obligation to share with people “the power of God within” that is chiropractic…and the “extreme danger of all drugs and surgery”…how we aren’t creating “peace on earth” if we don’t tell everyone “suffering from diabetes or cancer…how God saves lives through chiropractic”.

Once I got past being apoplectic about the offensiveness of this marketing system (ok, maybe I’m not past it; even Dave was agog, which says something, he normally just laughs at these e-mails…this one got him, too), I definitely found some fire for research…you know, of other drugs like the ones that saved my Genna’s life. No one should ever market their expensive services through moralistic bullying. If a back adjustment made brain tumors or NF go away, maybe someone who has actually studied these horrible things in medical school would have mentioned it.

Sorry. This isn’t the first offensive e-mail we’ve received, quoting the Bible & sloppy science all in one paragraph. Just in the week before a scan I’m allowing myself to mention it here. Sorry. It’s just so unethical, and dishonest, and horrible to vulnerable people to promise them a panacea. Delusion isn’t the same as hope. Delusion Kills hope. Hope and truth are sisters, they need each other. Even a dire truth leaves room for hope.

Ahem.

Yeah, I’ve hit THAT point pre-scan. It is what it is. If you live east of the Mississippi, be warned. East of the Delaware? Be doubly warned! ; )

In jollier news, I didn’t miss the deadline for a wonderful fundraiser Ronald McDonald Camp is doing…a “Chair-ity” auction…I can donate a painted chair. I may go buy the chair today and then have a frenzy before Tuesday. Painting is so therapeutic, and I have some great ideas for camp scenes all over a little chair. G loves Camp so much, I need to help them out.

I’ve been thinking, too, about different creative things for the Coffeehouse. My sister Anne has a Yudu screen printer…maybe this year we’ll have some fabulous Coffeehouse t-shirts! (and I am so coveting that screen printer…empires, empires will be mine.!)

In News of Insanity, the Yetifunk is running again! (www.yetifunk.com) My brother John is doing a 135 mile unsupported race near International Falls, MN. Yes, the coldest place in the US. In February. I may try to upload some pics of bracelets I’ve made to sell for John. He is running again for NF Endurance…for a cure for my girls. How do you say thank you for that?

Our old Yeti gear is still up online at Cafepress. I love my Yetifunk t-shirt. Embrace the Funk…find a cure.

In Yeti news (yes, this is getting weirder and weirder), my girls WON their school gingerbread contest for the Yeti Christmas! I think theirs was just so different and colorful (even if we didn’t use ANY gingerbread!). Rosie decorated EVERYTHING, meticulously applying gumdrops and hats and silliness everywhere. G did the snow, and marshmallow snow pile placement…they were so excited to win, and I am so happy for them. Rosie said, “I was so happy I was going to cry, but I held in my tears!” awwww.

Trying to explain to someone what the Yeti Christmas was, they finally asked, “so it’s just a weird Appert humor thing?” …yeah, it’s just a weird Appert humor thing. : )

Almost finally (I don’t want to end with this), G is having some challenges at school…she works so hard, to see these predicted difficulties start to show up is painful to me, but we will figure something out. Now I’m not in school every day, I can help her and try to ascertain what she Can’t do and what we just have to find other approaches for. Can’t is not acceptable to me. I am so done with Can’t. Can’t find a cure, can’t have treatments without horrible side effects, can’t fix the parts that are broken by tumor, can’t can’t can’t.

Can’t schman’t. We are going to BRING IT this year. We will inhibit some kinases and go all anti on tumor angiogenesis. We will run and shiver and sing and bake and raffle and cheer until NF just doesn’t know what to do with itself but run howling away…

Sigh.

I may be back here before Tuesday. If not, please pray for my Rosebud. Pardon my use of the vernacular, but scan day sucks. On every level, extreme suckiness is the word of scan day.

And peace to the people of Haiti.

Peace,
Kristin

Friday, January 1, 2010 9:26 AM CST

Happy New Year, all.

I am guessing my resolution should be to update in a more timely manner here…but generally no news is good news. And really, the futility of any New Year’s Resolution irks me. I have enough frustration over things I can’t make happen, let’s add “write a best-seller” and “climb Everest?” ?? I don’t think so!

Christmas was, to quote Rosie, “The Bestest Christmas Ever!”. The new Wii games have been a big hit, and Rosie loves Everything. Genna was less effusive this year, but happy…and we even have photographic evidence of Andrew hugging his siblings, which is a Christmas miracle that happens about once a millennium.

Having the family all home has been great. Cath & Rich are back to their respective homes now, Emily leaves tomorrow. I wish my family lived closer. I miss everyone.

I’ve realized that one of the weird sort of lingering fallouts of G’s illness, combined with my teen’s schedule and the diaspora of some of our old friends, is this sad compression of our social circle. We don’t get out a lot…ok, we were NEVER party animals, but we did get together with people a lot for games or just to have coffee...2 years out of everything, and then a restructuring of priorities has made family just that much more important to us.

So I love having my sibs around, and miss them when they’re gone. My kids do, too.

Sorry, forgot to cue the violins… : )

ANYWAY, while I got kind of partied out over the holidays, we really did have a nice time. I just can’t shake the funk that’s been around a while. But that’s not really for here, right? sigh.

A few special moments: G’s FOJ sisters at RU sent her two play lacrosse sticks…she came in giggling and giggling from outside, “Mom, it’s a Dirt Devil! For ME!” (so Meghan, if you read this, she thought the vacuum box was hilarious). Friends of Jaclyn/RU LAX always gets us unfunky.

Rosie LOVED her ZhuZhu pet. So a mighty thank you to Santa Denise who’s friend Santa Maureen had the elusive fake hamster. Honestly, Rosie’s favorite thing was probably the blue stuffed penguin she saw at Target that Andrew got her. She’s been carrying it for a week…well, and the blue pj pants she’s been WEARING for a week (ew) while singing a victory song about “I wear these every day! I wear these every day!”

Andrew ended up wearing each gift he got as he got it, which was kind of funny…and a clue that we got him stuff he liked. Phew.

Even though I couldn’t summon up much hohoho, Rosie especially on Christmas morning reminded me why the day is magical.

The girls are entering their school’s After Christmas Gingerbread contest. We built a Yeti Christmas (well, half way), no actual gingerbread is involved (I hate gingerbread construction), but I am hopeful that this will get me the Good Mom Points I am always losing. Andrew has his first indoor baseball game on Sunday…and in about 20 minutes the kids are going away with my in-laws over night. BUSY!

I have only 10 days left in the course I’ve been teaching. The school has already asked for this to be a full year course next year, so I will have a lot of work to do…but it’s good to be back in the teaching saddle as it were.

And this week Dave & I have to go into full bore Coffeehouse prep. We are already cutting it late (again) for the paperwork. March is only 8 weeks away. Yes. Be afraid. I am so tired, and so funky, and so overwhelmed at the prospect of this…BUT…NF is way more tiring, scary funky, and overwhelming. And it’s not cured yet. So we begin again. I’ll keep you all posted! (and if anyone feels musical, or wants to show up to help out, we won’t say no…well, I’ll feel guilty and probably say, “no, really, you don’t have to”, but know that that is only because I am a big wimp about asking for help. ; ) ! ).

Finally, as I run to get my kids ready to go…we did have one bright moment this week, we got to finally say HI to Miss Diane, our Australian friend. We tried to surprise Diane with a Christmas carol on Christmas Eve, but we’ve comically been playing phone tag ever since. It was LOVELY to finally say hello…the girls were so excited…

So to everyone, happy New Year. I hope it is blest with health and happiness for all. We scan Rosie in 3 weeks (finally set that up), so I hope we can get good news rolling…I so hope we can…

Peace,
Kristin

Monday, December 21, 2009 12:52 AM CST

Hi, all—

Happy almost Christmas.

I don’t know if I’ll get back here before the actual day, although if I can get a not weird picture of my family I’ll post it. We have been in full insanity mode here, and I am tired and admittedly not at my most jolly…but a few bright moments have jumped in among the chauffeuring/baking/thinking out holiday details-ing that are dragging me down a bit!

Friday was the Advent pageant at school. Genna read really well, I was proud of her (and honestly, just relieved she managed the steps of the stage ok, sometimes in the dark she gets a bit woobly)—and she managed to NOT yawn during her song this year! ; ) Rosie was an angel in the pageant, she had the most gigantic smile through the whole thing…it was so funny, she seriously looked like she had been Practicing that Smile and She Was Not Afraid to Show It! It was a really nice evening, and the girls were thrilled.

Thursday night when I went to check on the girls before I went to bed (10:40ish) Rosie was still awake. “I am just too excited to sleep, Mom!”…a sweet moment. I’m so glad the pageant was nice for her!

Genna has been CHUGGING out presents for people at her art lessons…some very…creative? items…she is pleased as punch about the whole process.

Late Friday my brother came home…woohoo! (Dave & I were in a frenzy trying to de-bio-hazard the house Friday night after the pageant…but it eventually got sparkly before Rich got home. Of course now it’s a mess again…). Cath got home last week…and Em, well….she got glomped by Saturday, which was….

The BIG SNOW!! We didn’t get as much as south Jersey, but probably about a foot fell here. This created major excitement in Camiolo-land (and yes, major shoveling come Sunday morning). On Sunday Rosie was a snow-player-omatic, Dave made her a fort in the big pile at the end of the driveway and she played and played and played. Genna kept going out to dig for our newspaper (which came today, go figure), and then had to change her clothes each time because she was, and I quote, “Sopping!”. Eventually we got her to go out and play too…and I had some fun with my sisters, we are now officially addicted to the game Bananagrams.

Em did get a flight in tonight, very late. Phew. Note to self, never book a flight at the same time as Em, she always gets stuck!

We are 95% done with Christmas prep…tomorrow is the last day of school for the girls & me (my lesson plan for tomorrow is “Eat Cookies”!), Andrew goes until Wednesday. He has baseball AND basketball tonight (sigh) and Genna has a choir rehearsal…I think tomorrow is something, forget what…Wednesday we are doing Christmas with my sibs (I host Camiolo Christmas at my house, my family goes to my sister’s)…then Mass on Thursday and the holiday is here!

While the last few weeks (months) have been a bit…challenging in some regards that I don’t really talk about here, I am so grateful for my kids and Dave. I so hope we can have a peaceful, stress free Christmas to just enjoy each other (peacepeacepeace) and appreciate the time we have. I just feel like this moment is so fragile, and the stupid busy of life can so make us miss the beauty we have no right to miss.

I pray all of you have a blessed holiday with those you love…and for all the angel moms & dads out there, you are so very much in my heart at this time of year especially. My prayers are with you.

And in case I don’t get back here, here’s our incredibly dumb Christmas letter (the ideas are good, the writing is Bleh…got the cards mostly mailed FINALLY, but I still have some I’m chugging through)…and to all of you who visit us here and pray for us and generally just put up with my weird version of life, I wish you a Merry, Merry Christmas!!

Peace,
K

‘Twas the month of December, we knew it was time
To ponder the blessings of 2009.
“For a good year of health!” was the first thing G said,
“for art with Ms. Brown and stable scans of my head!”
Next Rosie chimed in with her grateful list,
“Great Wolf Lodge, and swimming, and don’t forget this:
For Lake George and Camp and a good year at school,
and candy! And softball! And rollercoasters, too!”
“High school,” said Andrew, “has been pretty good,
And our baseball road trip, and all that great food,”
“And Rutgers Lacrosse is the best,” added K,
“We love Friends of Jaclyn in EVERY way!”
“I think teaching again has been a blessing for all,
And A’s Confirmation was a great thing this fall!”
Dave jumped in too, “Don’t forget Hersheypark,
And Lake George and Rutgers and Yankees…” “AND HARK!”
Added Rosie, “our daddy turned 40!”
“Yeah, ok,” answered Dave (with a look most unsporty).
The blessings kept coming, the joys piled high
As we listed great moments from months that flew by.
The Yankees triumphant, the Circus and Kids’ Cruise,
The basketball season Andrew’s team wouldn’t lose!
For friends and for family and G-FoRce! for a Cure,
For a Coffeehouse better than ever before…

True, the year has had challenges, sad times and strife,
But we know those are all just a part of real life,
So as Christmas comes near and a fresh year arrives,
We wish you all peace, love, and joy in your lives.

May your days all be joyful,
May peace fill your home,
And may 2010 be the best year you’ve known.

Merry Christmas and Happy Holidays from the Camiolos—
Dave, Kristin, Andrew, Genna, & Rosie

Monday, December 7, 2009 12:36 AM CST

Hi, all…

I know, it’s been like four score and seven years since I updated. We have reached a new level of crazy, I think. I was sick for a few days last week, and I am still running on fumes here…even I was appalled to see how long it’s been since I said howdy here!

Anyway, we did have a nice Thanksgiving…quiet, but nice. Dave ran a 5K in the morning, the girls and I worked on this and that, Andrew was a lump…the weekend after Thanksgiving was BUSY, too. Andrew IS doing this intense winter baseball program. I hope it’s good…he needs structure to motivate himself (one way to put it), and he loves to play ball…so hopefully the logistical gymnastics we’re doing to make this happen are worth it come tryouts in the spring.

I hate that I am that parent. More accurately, I guess, I hate that we Have to be the “go to the uber-$$ baseball thing in the winter so you even get considered in the spring” family. I wish it could just be a game. Why isn’t it just a game?

Which is something of too deep a philosophical question for a gray, cold, Monday, so never mind! ; )

Aside from my delightful couch time last week (ugh), we are chugging into Advent. Dave & I went to a parish mission last week…he got a lot out of it, so I am glad. I only did the first night, the second night the girls and I went to a concert by Sara Groves…my all time favorite singing lady. The slide show above is set to one of Sara’s songs…her music has helped me through a lot of tough times with Genna and on other tough days (specifically 9/11/2001). I think half the reason I love her music is because it’s so real and singalongwithable.

Anyway, the concert was lovely, I managed to NOT cough up a lung in the middle (not so successful at the parish mission with that!), the girls liked all the Christmasy songs, and at the end we actually got to meet Sara. Now I should preface this by saying I knew I was not in any shape to say hello when just watching the sign language lady was making me ferklempt (it was so beautiful to watch her sign the songs for the folks who were deaf or hearing impaired –they were right by us—and Rosie kept copying her—and then asked me, “mom, what would you do if I was deaf”…which, on the heels of another failed hearing check (not thinking about it now) and a stupid tumor on her auditory nerve kind of hit a sore spot in my heart—anyway, I was a mess over THAT, ergh!)…we just happened to be right there when Sara came out to the narthex after the concert, and you know Genna…”HI! MY NAME IS GENNA!!!” all smiles and then just standing there…and then I tried to say hi, and had That Moment…

You know, the moment where you realize, “Wow, this is one of those rare opportunities in life to thank someone who has no idea how much they’ve helped you out mentally. These moments NEVER happen, how lucky is this?”…and then start bawling.

Ok, so that’s MY version of the moment, to Sara’s credit she did NOT run away from the crazy crying lady with the smiling kid. But geez, did I feel stupid about 30 seconds later….

Still, it was a great experience aside from my Dorkfest.

The weekend was a blur: Genna and Rosie did wonderfully well in the fashion show at church, they loved every second…I have video on facebook of their model walk! I just wanted G to feel gorgeous, she’s starting to have self esteem issues…she rocked her gold lame trench coat, that is for sure! : )

Sunday morning was a craft fair (did ok—did manage to sell 3 more bracelets, 50% of that goes to John’s next Yetifunk race in February), then right to baby Isabella’s baptism party…then home, collapse…then school today…tomorrow is a holy day so we have off, and I am DETERMINED to a) put up some Christmas decorations, b) bake at least 3 kinds of cookies (I haven’t STARTED yet, alas times a million) and c) write our Christmas note that we brainstormed after Thanksgiving. Phew!

I also did my first treadmill workout today. Yeah. Um, not so great…dizzy! And my knee went out almost instantly, fricka fracka…although in a funny note, Dave figures I may need surgery, I could have torn something, it could get fixed and be much better…and I figure I could just not run, that might be a more realistic option for me! ; ) (it ONLY hurts when I run…and then after) Guess which one of us is the diehard runner, and which one is more the conceptual runner (like, it’s a nice idea but um, Ow) ? ; )

In a very sad note, I also learned that a little guy I’ve been following for 2 years died this weekend. Super Andrew, we love you. www.caringbridge.org/visit/aws . He was such a sweetie…

And other friends in bt/nf/cancer world are suffering right now. My heart is very, very full, and kind of sad about how things play out.

So that’s where we are right now. G is exhausted but well…both girls are excited for the Christmas pageant next week, and Genna keeps giving me hour by hour countdowns to Christmas (aaaaaaaaagh!)…I desperately want to just enjoy this season, the family stuff…but with a very active, very teenish-teen this is proving challenging. We did manage to have our official watching of Charlie Brown Christmas, and we got our tree (not up yet, but we have it). I just hope we can have SOME time to sit and be. I hope…

And I hope for all of you some peace in this season…

And cookies. Lots of cookies! ; )

Must go do something, this afternoon is scary. I had to cancel one appointment (G’s counselor, sigh, but I can’t trilocate)…but the other stuff is immovable. Onward and upward!

Peace, all—
kc

Wednesday, November 25, 2009 6:30 PM CST

Hello, all…

Happy Thanksgiving!

Even as I feel kind of run down & wrung out trying to juggle life and ignore the shadows, I am so thankful for so many things this past year. Even as I know how frail stability is, and daily I feel the pressure of the future, I am so thankful for the present. Even as sometimes that present is full of battles with my teen over everything, battles with my middle child over food & homework (to relax about it!), and battles with my baby over Move a Little Faster, PLEASE…I am so thankful for all three of them it renders me without words. Even as Dave works late and battles his own pressures, I am so thankful for how hard he works for our family and how much he loves our kids.

We are blessed.

This week was parent visit week at dance. Rosie is a pip, she mostly keeps up with the older class she moved into—and she is just a pile of cute. Genna, to my utter amazement, is actually Getting Better at Dance!! Seeing her face as she does her stretches right next to Miss Joanna…her beaming smile…makes me ferklempt EVERY time.

I am so thankful.

Look at her scans. I am so flipping thankful…she defies her own reality.

Last Thursday I had the girls’ teacher conferences…Rosie’s was a dream, G’s…well, not really surprising, but somewhat more painful than usual. We knew at a certain point certain things would get tricky…guess we’re getting There. Ugh. Yes, I got emotional (fricka dang fracka), but I am so thankful that we have Genna here to struggle in school. Tired & discouraged some days by these challenges, but oh so thankful.

I am thankful for being back at work…even if I HATE getting dressed up everyday (oh, the shoe-manity!), I love the class and the intellectual challenge of it. I’m learning so much, and for that I am thankful.

For all of our family and friends…for finally meeting Ori & Gabbie this year…for having folks join us at Great Wolf Lodge & Lake George…these moments are such joy for us, we are so thankful.

I felt pretty sick yesterday, but today only the remnants of a headache remain…I really have to go make a pie or some cranberry jello things, but I am tired. It’s been a long day, kind of stressful…so I figured it was a good time to remember what Thanksgiving is about. Because really, even in the most dire yikes, I am thankful.

I am mostly thankful for all of you.

Wishing you a blessed, peaceful Thanksgiving with abundant pie, laughter, and love.

Peace,
Kristin

Monday, November 16, 2009 8:56 AM CST

Hi, all…

I don’t know how I let so much time go by between updates…things have been normal crazy here, with the post-scan deep breath thrown in. Our first quarter of school ended on Friday, so I’ve been sort of floundering through grades. In an appalling disappearance of knowledge, I couldn’t remember how to do a weighted average…yes, you can find that on the internet…if you find the part of my brain that used to just Know these kinds of things, please send it home!

The week after a scan is always a pile of heebie jeebie, mostly because I ignore the existence of that week until it’s upon us…too many times we were burned making any kind of plan any time near a scan, I just don’t do it any more. Last week was no different.

We stopped giving G melatonin because it did not seem to be helping…but now she’s up more at night, so maybe it was helping some? We may start up again. I know it doesn’t hurt her, and I think it helps her mind to know she’s taking a vitaminy thing to help her sleep. Even it’s a placebo effect, that’s fine by me.

Academics have been a bit challenging for 2 of the kids this year…one because of, um, study skills? and the other because of processing issues…that even extreme obsessive diligence can’t help. I hope the 2nd quarter is less stressful on that front. I enjoy sleeping at night, really!

Last week Andrew did a tryout for the competitive winter baseball team that we have heard he needs to play on to have a shot at his school team in the spring. After a few anxious days of hearing nothing, we finally got word on Saturday that he made the team (and didn’t have to come back to the 3rd tryout…we missed the first one, they scheduled it during school hours…but Catholic school kids don’t get off for teacher’s convention!) . I am proud of him, but logistically terrified…it’s 35 minutes away, and the girls have so much going on…I told God, if it should happen, please make it happen…and then open the doors to get Andrew there! So we’ll see what happens.

Sorry this is such a blab, I have to go to work in a few minutes so I’m RACING.

Genna & Rosie are going to do a fashion show at our church. I wanted them both to do it because G is starting to have some self-esteem issues about her weight, and Rosie LOVES the idea of being a supermodel…of course it’s too expensive for any of our family to go, so I may be alone which is a bummer. Anyway, yesterday was the first fitting…Rosie will be sporting a sequined dress and a leopard print coat (yes, she was wearing an LLBean dress when we got there, this is WAY outside our style zone)…G didn’t get an outfit, at first I was a little perturbed…but then the very nice lady in charge e-mailed to say once she saw G’s coloring she knew she needed BRIGHT colors, not the black & white dress she had planned to have her wear. G picked out this Muppets gone Bad vest (fuschia, gold, and pink fur), she is ecstatic.

I had to apologize to G, I thought she gave the lady a pestery time about the vest…but apparently both girls were “gems”…someday I will relax and just be nice. I am proud of the girls, the fitting was long & chaotic and not all of the kids were cooperative, ahem. They didn’t all get the memo about “you wear what you are given, even if it’s not your favorite”.

I hope G feels like a superstar.

This week, in blah news, Laura (Dave’s sister) and the rest of the kids join Tim & the girls out in Denver. I have nothing nice to say about this. My girls are really unhappy about it, we don’t have a huge social circle, these are their good friends…alas.

Denver is a 36 hour drive away. Just saying.

So we are busy, having teen battles, trying to think of Christmas stuff so I can get done early & on a budget, trying to fix up some stuff that needs upkeep in the house, doing activities, etc. We are so busy…not always in the best way, if that makes sense. Yesterday was gorgeously warm, we pretty much did nothing…which was lovely. We need more nothing.

And I have to go dry my hair a speck before I race out the door in 3 minutes! Ack!

Finally, thanks to Coach Laura & Coach Kelly who (I think it was this weekend?) ran for the Children’s Tumor Foundation in Philly…that means so much…and to my brother, the Yetifunk man, who is planning a 135 unsupported ultramarathon in Minnesota in February. 135 miles. In the snow. Carrying all your gear. Insanity…for a cure for NF. Check out www.yetifunk.com for details on his blog (he ran a 39 mile training run the other night!)…and we’ll be designing some cool yetigear soon…

Off to explain globalization and discuss our role in an interconnected world…

Peace,
Kc

p.s. happy birthday, mom! (tomorrow!)

p.p.s. hooray for stable Drew & Joey & Emma & Angelica!

Friday, November 6, 2009 7:34 AM CST

Happy Friday, all…

Very brief update, I don’t feel so hot.

We got to Philly in great time yesterday…actually got into our eye check EARLY, which has never happened in the history of man. The fam got some good natured ribbing from the docs over the plethora of Yankees paraphernalia they were wearing…and we got to see Dr. Avery, who is running the optic glioma study. This was VERY encouraging. He has upwards of 50 kids in the study…which hasn’t happened before…and G is apparently mentioned rather a lot (not by name, of course)…it’s just encouraging to know that maybe all this crap can ultimately help somebody. That scientists CARE about this, and are trying to understand how these tumors work, and how more vision can be saved. Even though it won’t help Genna…maybe someday it will help someone else’s little girl.

That is encouraging.

In an unexpected moment, Dr. Avery printed out G’s scan report and handed it to me. Oh, Prunella! Wasn’t expecting that…but, since I had been reading over his shoulder and seen one word that bothered me, I was glad for the hard copy.

Everything is stable, overall…there is a possibility that the cerebellar lesion has increased in size…only a little (which could be a radiological discrepancy…ie, it may have been this large before, but the slices were different)…but seeing the G word (and I don’t mean Genna) on the report was a tad, um,

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGH.

Anyway, as I worked at remaining nonchalant about having the golden paper ahead of the doc visit, G’s eyeballs tested BETTER than before. This is good news. We did find further evidence of visual field deficits even in her good eye, which was intriguing; and apparently her color vision is only at about 25%. But her general acuity has improved!

Optic nerves are insanely complicated. That’s all I have to say.

Anyway, we worked our way up to clinic…G’s allergies meant she could not go in the regular playroom. She was Not Amused by this at all, having to stay on a couch away from the action. She wanted everyone to see her Yankees gear (stinker!)…eventually she took a 2 hour nap while we waited…and waited…and waited.

In the meantime we got to see our friends Meri & Caitlin (hooray), and Nurse Mindy who was due to have her baby YESTERDAY!! Even 9months pregnant she is still so cute—we hope her baby girl comes ASAP, because really, Mindy, GO HOME! ; ) But Genna was so happy to see her & show her her new giraffe earrings—Mindy always played “The Animal Game” with G while she did her port access.

4 hours we waited…literally EVERYONE went home…then we saw Dr. B, finally. She is happy with the scan, not uber concerned with the g word, but agreed we can scan in 4 months (she knows me too well). Really the most important part of the day, in terms of life, was Dr. B explaining to G why stable is best for her, why having all the tumor go away at this point would hurt her healthy brain parts. The way she did it, and the time she took, really, really helped Genna (and, quite frankly, me & Dave too). At least Genna is happy about things now.

There’s just a hell of a lot of tumor in there. Even stable, it’s a lot. Sigh.

G's weight...sigh. And we may drop the melatonin, since it seems to be doing nothing for G. Her neuro exam looked ok, so that was good.

By the time we left the hospital at 6:30, my daylong headache had morphed into an epic migraine (can’t figure out why I only get migraines on CHOP days…hmmm?!)…and my girls were bouncing off the walls the whole ride home. I think Dave got them to bed eventually, I was trying to keep all of my insides in by the time I hit my couch.

So today, we start again, the next chapter of watch & live…at least until January, when Rose will scan again. Thank you all for your prayers and support…

I need to improve my navigational skills as we chart a path through what life is. As G gets older, I have to help her stay steady and focused on living, and not on the stupid brain tumors that have re-defined so much of who we are. I need to foster more relationships for G within this community…it helps her so much to know other kids with the same kinds of tumors (Reca, she mentions Drew about 6 times each clinic visit…all for similarities with age, jokes, likes & dislikes…never NF/tumors really…just friend stuff…which is a eureka kind of moment for me…how can we bring these kids more together, even if geographically they are so far apart?).

I have a lot to work on. After I spend a week sleeping…I wish.

Better go exercise (I have exercise clothes on, but they are fast turning into comfy lay on couch clothes)…or get food for the hungry horde…or write next week’s test…or go back to bed until my head feels better. But I figured some folks don’t see me post on facebook or via text, and I don’t want anyone worrying inordinately.

And please pray for Drew, scanning today, Joey scanning next week, Emma scanning…well, in the next few days I think…and so many other kids. Sigh.

Peace,
K the exceedingly weary on all fronts.

Wednesday, November 4, 2009 9:08 PM CST

super quick howdy do...

We survived today...very long, very tiring. The absolutely preliminary report is "overall stable". To me there is a subtext that we'll explore tomorrow with the doc & the pics on the screen...but at least there is no imminent disaster. So this is good news.

Genna, unfortunately, was very, very sad.

She wanted the tumors gone, wanted them smaller at least...many tears, many hugs, some extremely hard moments. Until the last year or so I've been able to carry so much of this for her. Reaching acceptance of this reality has been so hard for me...I can't fathom how hard this is for G, she's just a kid. And it's HER body, you know? So in the midst of me impulsively typing "overall stable" to friends, G came up behind me and went from sniffling to teary to flat out bawling.

Sigh.

We'll know more tomorrow. Both girls have an eye check at 10:30, then G has neuro-onc at 1:30. We have to leave around 7, take Andrew & Marysia (carpool friend) to school, then keep going straight to Philly. The transit strike today was an unpleasant traffic maker. Tomorrow we'll be a little later, so it will likely be worse...ugh. Today we left at 5:12 a.m....I woke up before Dave's 4:20 alarm time...yuck. I know exhaustion isn't helping here.

Anyway, G was a trooper today. It took THREE times for the nurse to get the iv in, and we had many moments of having to explain that we knew best how our kid handles sedation. Like, 24 times before kind of best. The nurse eventually accepted that...ish. But G was happily trying to explain Friends of Jaclyn (she brought the bear the RU LAX gals gave her), tell jokes after getting the Versed (ie while stoned) and generally being one tough cookie.

I think that's why it's so hard when she gets sad...she is normally so tough about this stuff.

Ok, better get back to my Yankees watching...Genna was picking out Yankees stuff so she could, and I quote, "torture the doctors tomorrow!"...yes, she is DADDY's girl! ; )

Thank you all for praying for us...I'm sure I'll have something more specific tomorrow.

peace,
k

Monday, November 2, 2009 1:46 PM CST

Hi, all…

Happy Monday, Happy November.

I hope everyone had a nice Halloween. My kids got a pile of candy…in the rain. But at least it was alarmingly warm, nearly 70 degrees (weird). The girls had a good time, even if we did lose one penguin earring in someone’s yard…which necessitated a stop at Claire’s on the way home to replace it (with a panda, no more penguins, alas).

Race for Hope was AWESOME, as always. We had nearly 30 people there for the G-foRce!...and just before the walk portion started, Genna was surprised by a bunch of her RU Lacrosse Big Sisters!!! What an awesome, awesome thing…(or as my dad said, “that blows my mind, they came all the way down here”)…I’m so glad my family got to see how fabulous Coach Laura & Coach Kelly are…and all the girls who came…you really inspired G to Keep Moving for all 3 miles (she whispered to me at one point, about 2.3 miles in…”mom, I’m beating Coach Laura!”…heehee.

And all of them ran across the finish line with her…so wonderful to see…

But of course I’ve jumped ahead of myself. There were so many more people there this year, the event has grown exponentially since the first year. (Ie, parking was an issue!). Once we got settled we made our way to the famous Art Museum steps (and yes, Rosie ran up & down several times like Rocky!), and got ourselves together. I can’t even say what it means to have people come out with us…especially on a soggy morning, nearly 2 hours away from home…for such a cause…

A little after 8 the warm up started, and my girls rushed right up on stage (funny) to be back up exercisers. Then we bopped over to the Survivor’s Tent where G got a giant microbe brain cell…so silly…then to the Survivor Photo…which was a really hard moment for me.

My girls were front and center (do they ever find any other spot?), and the woman next to me asked the person next to her…”are those 2 little girls sisters? They BOTH have brain tumors? Oh my God…” and the gentleman next to her answered, starting to explain my girls’ story (he must have been a volunteer)…I tried to say “they are mine” (and yes, we had on matching shirts), but I don’t think they heard me…and then their response to our reality got really hard to be by (much aghast sorrow)…and I had That Moment of

OH MY GOD, MY CHILDREN HAVE BRAIN TUMORS.

Yes, Einstein I am not. Yes, I know WHY we were in Philly…I wish I could explain how the parental brain DOES this, but it really is unexplainable unless your brain has done it.

Telling Dave about it later, he agreed, we get used to it. We get used to the story, the yikes, the OMGMCHBT moment. How can you get used to that? It’s so utterly unacceptable…

Which ultimately is WHY we go out at 5:45 a.m. in the rain to Philadelphia to run for a cure. But still..it’s easier to focus on making t-shirts and cookies and getting rain ponchos than on the reality of why we’re doing what we do.

My daughters, both of my daughters, have brain tumors.

And while strangers (but really, just un-met friends in the common cause) were trying to control their emotions about my girls, Genna was making very weird faces (sticking her tongue out and such) and Rosie was being cute and oblivious and taking off her hat for the national anthem, etc. And I was wishing I had not opted for mascara.

Once that was past, the race part of the race was ready to go! A bunch of our G-foRce! team ran…the winner from our team was Andrew, who ran a blazing 21 minutes (and was mad at himself for being too slow)…he came in 26th OVERALL in the whole race…maybe because he wore his Derek Jeter Yankees jersey & NY hat? ; ) Dave also wore his Yankees hat…he had a great race, too! Tim, and my Dad & my sister, and Shawnie, and our newly met RU friends Andrew & Kevin all ran wonderfully, and we cheered like crazy people.

The walk was so beautiful, even if Genna does 5ks in the most spasmodic way…she zigs & zags like a speedfest for 30 feet, then walks again. If she wants to stop to take a sip of water, she just STOPS. In the crowd. Thankfully the RU girls figured out fast that G is unpredictable at best, and they kept up with her the whole way! Rosie was our shocker. She decided she was going to walk too, and ended up practically RUNNING the whole thing with poor Aunt Rita! We couldn’t keep up!

This morning she limped downstairs and said, “my legs hurt, mom!”…yeah, I bet they did!

I am so proud of my girls, my boys, all our friends and family who came down…the “twins’ friends” contingent, the Khoury & Garcia families, the Appert crew, the RU LAX crowd, Rita & friend Mary, Shawnie (Andrew’s buddy) and everyone. It was such a wonderful, hopeful day.

And at the VERY end, as we were leaving, I had to take the girls to the loo…when we came out, I saw Dave talking to some camera people. We’ve talked to the press before at Race for Hope, but this was different (he was miked). Apparently some NY tv station saw his Yankees hat, and wanted to ask about the event and about running the event as one person in blue in a sea of Phillies gear…which Dave LOVED. Then they talked to Genna about her favorite Yankees player (Derek Jeter), and when asked what she would say to him she skipped the obvious World Series reference they were looking for and said Derek could come to Race for Hope and she could talk to him the whole time! Now THAT would be something!! : )

We couldn’t figure out last night what the station was (I was too tired to remember),but it was a fun ending…or almost ending, we did hit Chili’s on the way home. Mmmmm.

I am now trying to slog through the many scheduling details of life I need to figure out in order to get through the week…scan day is so upon us…G said to me yesterday, kind of quietly, “mom, I hope my scan is good”…

Me too…

I don’t really have anything else to say about that, and I should be writing an assignment right about now, so I’m better run. Please pray for us this week. We won’t have results until Thursday…I am nervous leaving Philly before we have results, but I have no other viable option. We will hit the road around 5 a.m. on Wednesday, and may be back as early as 1. Barring disaster…

Sigh.

Better go stick a few more Milky Ways in the freezer…

Peace,
Kristin

p.s Next Monday is Gabbie’s birthday…if anyone can send her a card, that would be so awesome (good grief, I do know other words…)…check out www.caringbridge.org/visit/gabriellehughes for her address … or if you’re on Facebook, I posted it there.

Friday, October 30, 2009 11:52 AM CDT

Hi, all…happy almost Halloween/All Saints Day.

FIRST: a special thanks to our RU LAX BIG SISTERS!!! Genna LOVED the package, she made herself do all of her homework before she opened it…she pulled out one thing at a time, (first tried to get the bear out through a tiny hole she ripped in the top of the box…we had to regroup & start again!)…she oohed and aahed, THEN very methodically went to the next thing…it was so sweet of you, and it totally made her smile, laugh, show Grandma and Grandpa…well, You know how she is… so THANK YOU!!!!!!!!!!

And to the Blumbergs, Mark, Kris, Marta (and friend Eric) for the Grand Huzzah of pumpkin carving…Genna and Rosie were FLYING when they came home, Genna sang the Creature from the Black Lagoon song to my dad, Rosie kept giving us the play by play of everything…they had such a wonderful time, thank you for including them in your fun.

Today my girls dressed up as saints for their school celebration. There’s a parade, donuts, etc…sadly all done BEFORE my class period! ; ) But Rosie picked a saint from one of her little books, based on the fact that St. Agnes was pretty. Ok. I did have to laugh a little about that, until Rosie started having costume trauma about what constituted “pretty” in a 3rd century kind of way. We opted for a poofy dress, and she found a string of pearls. Voila! Early Church pretty…I guess. She meticulously wrote out the kid-friendly version of St. Agnes’ life, and apparently was one of the kids picked to read her card before the school and have people guess who she was. I am told it was a Moment of Extreme Cuteness!

Genna…decided to be Mrs. C., her kindergarten teacher, who was diagnosed with a malignant brain tumor just 3 months before Genna was diagnosed…in May of G’s kindergarten year. Genna borrowed a vest of Mrs. C’s from her teacher now (not sure how Mrs. F had this, but G was ecstatic), she wore a little corduroy skirt (apparently G has grown taller…eek, sorry for the short skirt, Mrs. C!), and her “high heel” boots. She carefully wrote down her details…how Mrs. C loved kids, how Mrs. C could sing Polish Opera (which was a joke Nora always told her kindergarten kids…don’t tell Mr. Appert –my dad, the choir director—that I can sing Polish Opera, or he will want me to be in the choir), how Mrs. C loved St. Therese of Liseuix…

What I remember most about Nora is how much she loved Genna…sending her little cards and things right up to the very end of her battle. Even when she was so sick, near the end, she was praying for Genna.

She was so good to Andrew, too…she called the first WEEK of kindergarten to tell me that I didn’t have to worry about Andrew being shy at school, he apparently was VERY entertaining…a bit TOO entertaining… : ) he loved Mrs. C too…

I suppose, really, it’s appropriate that G would pick Mrs. C as her saint on a year where the Race for Hope to find a cure for brain tumors falls on All Saints Day. It makes me sad…but determined. We can never stop hoping…hoping for a cure, hoping for answers, hoping for treatments that are not so devastating, hoping for ways to alleviate the after-effects of brain tumors, hoping for survivorship and hoping then for survivorship without the catastrophic emotional, physical, and psychological cost.

I think we are unofficially up to 28 people on the G-foRce! for Sunday, all hoping together. I have to make 28 t-shirts today…and finish G’s penguin costume for Halloween (don’t get crazy, it’s a t-shirt with felt glued on). I need to make a couple dozen choco chip cookies for our team…and pack the wagon, the signs, everything.

We can never stop hoping.

I am starting to get into pre-scan Extreme Yikes…not even worry, just emotionally taut, if that makes sense…again, the Race for Hope comes at the perfect time.

Thank you all, as always, for your prayers and support and for always Hoping with us…hoping that some day Genna won’t decide to dress up as someone we love and lost to a brain tumor or NF.

Peace,
Kristin

Sunday, October 25, 2009 7:21 PM CDT

Happy Sunday, all.

If life were made of moments…
Even now and then a bad one.
If life were made of moments…
Then you’d never know you had one…

Ok, so I don’t exactly get what Sondheim was aiming at here, but I always get that song stuck in my head when I have “a moment”.

This week in an itty bitty nutshell?
* Dave was in Miami for 3 days, and came home. I get nervous when he flies (understatement of century).
* I was solo mom for 3 days. Um, yikes.
* Genna saw Miss Nora…G has been doing great! Which meant the next 3 days were very emotionally challenging on the food front. Sigh.
*Dance/CCD/Kids’ Choir/Art…the usual.
* Andrew got a fever, everyone got globby.
* Andrew stayed home from school, which he can’t afford right now, and then got mad when I told him if he missed school he couldn’t just pick up his social life when the meds kicked in mid-afternoon!
* Our school closed a day: so many kids sick!
*My girls got their flu shot, after an hour and 45 minute wait to clear them for the shot (both apparently have bad allergies, who knew? They sound Awful).
*Andrew still had baseball Friday night…sigh.
*Andrew received the sacrament of Confirmation! Hooray!
* We had a little fest at our house (grandparents, our sibs, Andrew’s sponsor & a few of his friends)…
*which necessitated a full day of scrubbing on Saturday!
*there was Costco Cake!
*Today was the Children’s Brain Tumor Foundation Big Apple Circus event…SO AWESOME!!!

Seeing Rosie & Genna WATCH the circus…especially Rosie…is truly magical. Even Andrew enjoyed it once he got past his “you are so “psycho” for making me do my homework today after this” funk. Seeing uber talented people do their thing makes me happy.

Before the show, the little girl behind us was talking to her mom. “Mom, since I have a brain tumor…when I get older, will my kids have a brain tumor?” Mom answered fast, emphatically. “No.”

And I had a moment.

Thankfully Genna didn’t ask me…she heard the little girl (and she poked me and said, “oooh, that girl has a brain tumor, too!”…yes, MOST of the kids there did, but ok). But if she did ask me…
I couldn’t say no.

I couldn’t say yes, really who knows? But in that moment, I had the ol’ knock upside the head of not being able to say, “No, Genna, your kids would NEVER have a brain tumor. They will be balls of health.”.

I can’t say that.

We need a cure. I know this is a genetic thing, I know there is no quick fix. But somehow, every little loss, every moment seems fresh and raw when it hits.

This week…craziness, again. Race for Hope is Sunday…www.raceforhopepa.org …come on out, I will improvise a t-shirt for you...of course Halloween is Saturday, and we are only kind of set costume wise. And we’re supposed to go to the soup kitchen on Saturday, but I’m not sure I can if I’m not ready for Sunday…and the end of the marking period is here, I have so much thinking to do…

The kids are fighting over the leftover cake (!), I better run.

We are so blessed. I know. I hope G’s scan next week is stable. I hope a lot of things. I hope Andrew figures out how to “do” high school, and that Rosie NEVER has to have treatment for her tumors. I hope a lot of things.

All the beautiful people at the circus today…that gives me hope. If I can only connect the dots between the moments of hope…that would be awesome.

Better make sure they left me some cake…

Peace,
K

And special prayers to our friends at St. Patrick’s in Chatham…we are so very, very sorry. For anyone in the US, this story was all over CNN…the teacher I share a classroom with is a parishioner at St. Pat’s…for years, they live within sight of the church…sigh. Our prayers are with you….

Friday, October 16, 2009 12:21 AM CDT

Egads! I went a long time here…

The perils of Facebook…I can put up a one line yikes 2 or 3 times a day, and get it out of my system…and things have been so busy I feel a bit like blender head…everything is mixed up and kind of a funky color…

We are slogging along. Genna has had a horrible cold for a couple of weeks, but thankfully it hasn’t progressed into anything worse. She just hasn’t been able to shake it (both Andrew & Rosie did). The girls are supposed to get flu shots on Friday...hopefully everyone is healthy by then. G has also been having a really tough time sleeping. I have no idea what’s up with that. Granted, sleep has been an ongoing issue, I have G chugging melatonin and heck, this week I’ve been giving her cold medicine…all to no avail.

I feel bad, she is exhausted by the end of each day, and school is so busy, and we have so much going on…she is just getting wrecked by nightfall, random wailing and gnashing of teeth, etc.

In cheerier G news, she got her official Red Cross Babysitter Certification on Monday. She was so funny, just agog with the joys of her own Officialness. It makes me happy when she can do these things.

School is…good. Stressful juggling act at times, but generally going ok. Andrew is having a bit of a time adjusting to high school, but we are trying to help him stay on track.

I could go on, but …ahem. I am confident we have him in the best place he needs to be, I just get stressed about things. What else is new?

We had my nephew Owen here last weekend, he is a big sweetie. And RU homecoming was fun, if a bit chilly. Rosie was copying the cheerleaders : ) ! We had hoped to go get pumpkins and such this weekend (we didn’t go on Sunday because Andrew had school work), but the weather is HORRENDOUS. 37 degrees and raining. Dave is running a 5K tomorrow, I had hoped to get G to go walk it, but I can’t have her slogging through this weather more than necessary.

We scan in 3 weeks.

I almost feel like I should sign off there, really what else is there to say? I feel kind of brittle, like an ancient column holding an upside down pyramid on my head…but it is what it is. My kid has a brain tumor. Rephrase, (@%#(@#%!), my kid has brain tumors. It is what it is.

On Tuesday I went and heard a Holocaust survivor speak at the local high school. Eddie Weinstein escaped the death camp at Treblinka and has an amazing story. His life gives “surviving” a whole new meaning. The only time in his presentation that he got choked up and had to stop a moment: when he talked about the babies at Treblinka.

There is something so primal to our need to care for babies, for children, to protect them and keep them safe…Eddie couldn’t save those babies from the guards at the camp, and it haunts him to this day. As humans, we are genetically bound to protect our young, it’s just the way it is…

And witnessing children’s suffering hurts parts of the human heart I think we sometimes forget we have. I don’t know how you balance the pain of knowing with the act of surviving. Some people do it so well…others get swallowed…we kind of slog through, like walking through slush.

3 days before Genna’s scan day we will go to Philly and Race for Hope. Those days buoy my spirits…I’ll need some serious buoy action 3 days before a scan…anyone who wants to come along and march with us, just let me know…or log onto www.raceforhopepa.org and look for G-foRce! in the race team list (or my name, I am The Captain…I should have a unitard or something, but I don’t want to scare the other participants). We are NOT fundraising for this event (still sending out thank yous from our last event!)…but we will participate in this Race solely dedicated to a cure for brain tumors.

Then November 4, back to Philly for a scan…then home, then BACK to Philly on November 5 for eye check (both girls) & neuro onc (G)/scan results.

Sigh.

I have to go correct papers & try and plan out next week specifically. Dave has to travel on business to Miami, so I will be solo next week…not fun…at least my sister in law Laura is coming home tonight, hooray! Katrina is OUT of the hospital, and preparing for the next moment…they are praying that the doctors will be amazed, that K’s problem will disappear.

This prayer hurts me. I know it isn’t futile, I KNOW it isn’t…it just was for us, for Genna & Rosie.

Ok, even I hear the Awooooooooga of the warning sirens on that one. Not going there. But of course in my head I already did! But we do ask for continued prayers for K.

One funny note about that, when Dave & I were away he asked at one point what was I thinking…my response was something like a Simpson’s episode…I was thinking about the kids, and what projects they had for school, and did I need to go to AC Moore for supplies, and if I did should I pick up some of that heat proof paint for our little outdoor fire pit, and if so I wonder where we could get wood? It would be fun to have people over, maybe for Andrew’s confirmation we could make a campfire, and really he needs to give me a list of who he wants to have over for dinner…should I do Italian or Mexican food? Probably should order a Costco cake, maybe I could make a carrot cake too, but I should have something gluten free for my dad, maybe an apple thing if my mom has some kind of flour free- crumble thing, and I wonder if that bakery opened in Stirling yet? …not EXACTLY it, but something like this train of thought. I asked what he was thinking, and he said Nothing. Nothing?? I asked. Nothing, my brain is just empty, he replied. This amused me greatly, even as I envied him! : )

Maybe I can empty my brain a bit today…here’s hoping! : )

Peace,
Kristin

p.s. www.raceforhopepa.org ….we’d love to have the G-foRce! grow…
and Rosie & Dave are in the PSA, go to media relations or something, and about 35 seconds in you can see them for a minute in their royal blue G-foRce! shirts...

Tuesday, October 6, 2009 1:34 PM CDT

Hi, all…

Sorry for the long delay between updates…I feel like my brain is funkier than usual…the fall schedule is crazy busy, Dave & I got away for 2 days for our 15th wedding anniversary, and school is a lot of work…but generally, no news is good news here!

That said, I scheduled our next scanfest, finally. Bleh. November 4 G will scan, then November 5 she & Rosie see Dr. Liu, then G will see Dr. B. A logistical nightmare, but we need to have the eye check & scan next to each other, based on our last scan.

Which will be the first episode in my new soap opera, “As the Stomach Churns”…urp.

G is holding her own in school. I have not done well keeping her active, there just aren’t enough hours of daylight after homework (and I am a lump by dinnertime!). We need to figure something out there. Andrew is doing alright, if sometimes challenging my personal efforts to stay brunette (!), and Rosie is…well, Rosie! : )

The Rutgers Lacrosse scrimmage was so awesome. Genna LOVED meeting all the new girls, and seeing old friends (and to anyone she didn’t recognize…which would be everyone except the coaches and Faith, because Faith always wears her hair a certain way!—G has a TERRIBLE time with visual recognition. Don’t take it personally, that part of her brain is squished). The best part (aside from the killer tailgate) was the awards ceremony after the game. Coach Kelly had made an awesome highlight video of last year (including a little part about G), and then they gave out awards to all the girls…including the 1st Genna Camiolo Award for a girl who had perservered and shown great attitude & team spirit in the midst of personal adversity…CONGRATS, Eileen!!!!! It was very moving, Genna was pleased as punch to be able to present the award (and to “help” with all the other awards), and all in all it was a truly wonderful day!!!

I better check my pumpkin bread in the oven…Tuesdays are insane-o-matic, I have to have dinner stuff ready before we go to dance class #1.

ANYWAY, the other big news is that we Officially set up the G-foRce! Race for Hope Team. WE are NOT DOING THIS AS A FUNDRAISER this year, we are just participating…we would love anyone to join us (I will try to make t-shirts in blue, or we’ll just do the Cafepress thing). Just visit www.raceforhopepa.org and it will chug you to the right spot. The date is November 1, and the location is right in front of the Philly Art Museum. Running up the steps like Rocky is optional (!), but getting inspired will happen no matter what! : ) Just look for G-foRce! in the team list, and come on down!

I don’t hear my beeper yet…

Recently I have been working through my own head (yeah, what else is new?)…not sure why right now is hard. Maybe because so many of our friends are struggling? Maybe because I was worrying about the scan? Maybe because I feel a bit like I’m hitting that marathon wall (hey, I can’t run, but I can throw around running metaphors like a pro!)…NF is just really getting to me.

I can’t fix it. I can’t make it go away. I can’t make it any better for our friends. The powerlessness of a mom in the face of this beast is getting way old.

So there’s my Mini-vent, no need to call the waaaambulance. Just figured I’d spit it out and be done with it. We have too much living to do here to get caught up in stupid yikes.

This weekend I think we’ll have my godson (Katrina’s little brother) Owen for a couple of days, and we hope to go as a family to the RU Homecoming. It is also G’s “baptism day” (yes, we look for any and all occasions for Cake!), she is extremely stoked. Last year we had an ER visit that day (stupid Lyme disease that looked like shunt failure, fricka fracka…) BUT TODAY The sky is blue, I bought a chrysanthemum, and there’s pumpkin bread in the oven.

Take that, NF!

Peace out,
K

Saturday, September 26, 2009 8:04 AM CDT

ACK! I just lost my whole message....

THIS is why I cut & paste, SNAP!!!

Ok, so now this is the fastest message ever, ugh!

This has been A Week.

For those of you who don't already know this from my Facebook yikesing, please pray for my niece Katrina. She moved with her dad & sister to Denver a month ago (her mom & sibs are going to follow after they get a house out there); Sunday Katrina ended up in the PICU with a mass on her spine. This made for a few very dark days here...thank God it is not cancerous, but it is a big problem. (and no, K does not have NF). Mom Laura (Dave's sister) flew out Monday night, and Katrina is making great progress (out of the PICU): we know she'll be walking out of that hospital SOON!!!

But still...This whole "PICU/weird-rare thing/3000 miles away" deal made for some not so happy moments here. Apparently dark places are like sinkholes that open up unexpectedly in weird places. Sigh. Someday I will be able to afford therapy for everyone in the family, but until then, at least I have facebook! ; )

Special thanks to everyone who e-mailed or sent e-cards (K is at the Children's Hospital of Denver), and especially to CB friend /100,000 visitor to our page Tatiana, who actually WORKS at this hospital and got to bring our family a friendly hello. T, this really means so much.

Thank you all for your prayers, and please, keep them coming...K is working hard...4 of the kids are still in NJ, there are a lot of logistics that need to get worked out, so any and all prayers are appreciated!

I am so ticked that my first entry got eaten...I don't even know if this makes sense...

This week was also a L-O-N-G one at school...everyone is settling in a bit, which can be good & bad! I am really loving being back to teaching, even if it's still an enormous amount of work at this point. I know the first time through any class is like this, but yikes! I need more hours in the day!

Dance/art/ccd are in full swing; we need to get some baseball for Andrew, if he wants to play in the spring he needs to work now. And woohoo, that way I'll get to drive some more! ; ) So...Tired!

Speaking of the day, we are off today to see RU Women's Lacrosse scrimmage & do Friends of Jaclyn stuff...Genna is excited, she has her RU shirt on and she's lobbying for baking something to bring (we have to go in an hour, ack!). It should be a great day! Andrew is off to Great Adventure with Meg & Mark, so that's a fest for him, too.
Tomorrow is our parish picnic (Rosie was addicted to the pony rides last year!), and then we are back into things on Monday.

Oh, and the one nice thing (I am all globbled now!)...yesterday Genna went over a friend's house!!! Her buddy Danielle (the grade below her) invited her to come play...they seemed to have a great time! I am so glad they are building a friendship. D is wheelchair bound, so I can only have her to my house for short times (I don't have a ground level bathroom, my house is all stairs...which sounds Escher like, but you know what I mean?)...but HOORAY for a playdate!!

So thank you all for praying for us, pulling for Katrina, and supporting us. Weeks like this one remind me of how lucky we are to have such an awesome support system...much of which is comprised of people we've never met! We are grateful to you all...it's been a rough time for a lot of our NF/bt friends, and we are so grateful for all of you.

must run run run (and this time I'll copy this BEFORE I navigate away from this page! : ) )...

peace,
K

Monday, September 21, 2009 1:51 PM CDT

Hi, all…

It is very Monday here…

But first:

My boys rocked the Philly Distance Run! Dave finished SAFELY at 1:45:50 and Andrew was close behind at 1:54:11. I was beyond so relieved to see them at the 13 mile mark…Dave looked wiped but he was smiling. I realized I was shaking pretty badly by the time he got to us…

Apparently mentally the race got really tough for Dave around mile 12. They don’t call it NF ENDURANCE for nothing…my #1 NF hero is definitely my spouse. I am so proud of him for conquering the demons of last year and finishing strong.

And my first born said to me, as we were walking the mile back to the hotel, “you know, when I was really hurting around mile 11-12, it helped to think I was doing this FOR something”…which from him is Big Saying, if you know what I mean. My 14 year old is not Dr.Phil, to say the least. I am so proud of him, too.

The day was gorgeous, the NF team was so inspirational…the pasta dinner was awesome, my children discovered the hitherto unknown delights of a taxi, which was a bit unfortunate the next day when neither of my young NF heroes felt like walking across town! (“Can’t we just take a taxi, Mo-om!”…um, no!). We had a bit of a hotel snafu (I actually complained in writing, eek!) and Saturday night my kids were snipey, I couldn’t sleep, and at 4:30 a.m. a happy drunken crowd found their way to our floor, but otherwise the weekend was great!!!!

We cheered like crazy, made noise for every NF team member that ran by (and the Marines we say, too, I have to cheer for the Marines), enjoyed the brilliant sunshine, and ended our time in Philly with Mass in the Basilica chapel and then lunch at a pub.

Genna made some new friends, new NF friends, which is so great (Rosie was shy, but did follow the toddlers around). I love all the people on the team, I want to be them when I grow up.

WE CANNOT THANK YOU ALL ENOUGH FOR YOUR SUPPORT AND ENCOURAGEMENT FOR THIS GINORMOUS VENTURE!

We know the economy has us all wrapped in knots…we appreciate 10fold the generosity of all of our friends, we know that your help for a cure meant sacrifice…and we are so grateful.

My girls didn’t go into full-bore meltdown until last night (sorry, Reca, Rosie was a wreck!), but this morning all were well rested and ready to go. I could use a 2 week nap, but it’s all good.

Saturday is the big Lacrosse tournament, Genna can’t wait to see her RU big sisters!

I have to go do schoolwork, I was very thwarted today (made some of next week’s copies & spilled coffee all over them on the ride home!), and I have to make a test for tomorrow…and please, we have a very serious family special intention, I can’t do details but if you could pray for a relative in the hospital we would deeply appreciate it.

Peace, and thank you all times a million!
Kristin

Saturday, September 19, 2009 8:38 AM CDT

Hello all...

This will be the briefest of entries, normally I cut & paste and type, I only have time to type it right into cb today...

We are in a flurry of last minute getting ready for Philly...how exactly I ALWAYS have a flurry at the end I will never know, but we are trying to organize ourselves, figure out what exactly we need to bring...Dave's Nuun tablets & bananas, granola bars & gum for the girls, the camera (battery charged?), the signs, layers for the freezing morning/warm midday, Mass schedule, directions to hotel...convention center...restaurant...home, the aerobed for Andrew, sunglasses...ok, so I'll need to print this paragraph when I'm done here! : )

Andrew is nervous. Dave is nervous in a different way, he has trained so hard (about 30 miles a week), we've changed all the negative variables from last year (hence the aerobed, bananas, & Nuun tablets), and hopefully once he's out on the course he can run right over all the demons from last year.

G is hollering something about yoga pants...sigh, I have to hem her new yoga pants so they aren't 6 inches past her feet.

I'm nervous too, more about all the details that need to be figured out, the family logistics. And I should have graded my students' notebooks yesterday. Urp.

Thank you all for your endless support, for everyone who gave to this race effort...I will send out real thank yous when I hopefully have triumphant finish line pictures!

To all of our NF friends, know that we carry you all in our hearts tomorrow. I am trying to get a picture thing for Dave & Andrew to pin to their singlets, so far my computer is thwarting me a bit (very long story)...but even if they can't actually have the faces with them, know that every step is fueled by our drive for a cure.

Blue skies today...Timmy blue...and I know that Sandy & Nora are going to send us what we need to get through.

We need to find a cure.

peace,
Kristin

www.cafepress.com/go_GFORCE and www.cafepress.com/go_GFORCE2 have cute stuff, profits go to CTF

and it's Pediatric Cancer Awareness Month, check out www.teamunite.net to see what you can do to spread the word and help our friends find a cure.

Monday, September 14, 2009 8:47 AM CDT

Hi, all—

Just wanted to post an uber-quick update before I have to run to school. I am not used to having to be presentable every day! At least no one ran out screaming or fell asleep the first day, I always figure that’s a good sign!

Andrew started high school successfully! EEK, but hooray. The course requirements are giving me panic attacks (my boy is so smart…not so organized)…hopefully Andrew can hold things together and not end up with a bag of fossilized homework like last year. He seems pretty positive about things, I think he was glad to finally start. It’s much easier to meet people when you’re actually all in class together.

Genna and Rosie most exuberantly started school, too. So far they are loving things. Genna told me that the first few days were a little hard for her to be peaceful (ie. not a Wall of Continuous Sound at the teacher), but she plans to do Very well this week! : )

The weekend was busy but nice…Rosie and I hit the RU game on Saturday, in the rain that was not supposed to be happening at game time. Thank God I packed the emergency poncho. RU looked good, the Howard University Band made my life complete (!) and we got a snack (“free food! Elizabeth paid for it!”…Rosie’s take on things!) from the concession booth manned by the RU Dance Marathon folks (they raise $ for the local children’s oncology/blood disorders unit at Robert Wood Johnson--Elizabeth used her card, so the food was NOT actually free, and next time I'll get my wallet out faster!).

Sunday was my dad’s birthday, a fest…and we went to a later Mass said by Fr. Rea. Just a regular Mass (he did quick prayers of healing after Mass, but we didn’t stay for that). We weren’t going to go, but I couldn’t sleep Saturday night and just had a strong feeling we Should go…it was kind of weird, like 1:30 in the morning saying to Dave (yes, he was awake apparently because I was awake), “we should go.”

It only occurred to me as we walked through the doors of the church, that I might be having a Eustace moment. In C.S. Lewis’ Voyage of the Dawn Treader (a Narnia book), Eustace stumbles upon a dragon’s treasure, and takes a piece…which curses him. Eustace is transformed into a dragon, and only through a painful peeling back of layers can Eustace be restored.

The Mass was in our old parish…which we left under difficult circumstances during the most difficult part of Genna’s treatment. I haven’t been back since 2006.

Oh, snap.

Ultimately, I think it was positive, and kind of a healing thing to go back for such a beautiful liturgy in a place that a) I was married in, b) my kids were all baptized in,c) 2 of my kids received their sacraments in, d) was such a huge part of my life for 10+ years. But talk about blindsided…

Last night I decided to see if G’s melatonin could help me sleep. I don’t want anymore midnight thoughts! : )

Tomorrow Genna starts dance (Rosie does too), Rosie starts CCD on Wednesday, G goes back to Art on Thursday. Saturday we Blast Down to Philly for the race…Eek!

Thank you to everyone who has supported my boys. I will send out official thank yous, I like to wait until after the race so I can let people know how everyone did. If anyone can donate a speck, at this point could you donate to Dave? This sounds very silly…and all the $ goes to the same place, it doesn’t matter, except that Dave has a charity slot in the race, and has to raise a certain amount ($600). Andrew is there and past, thanks to all of you!!! : ) I know I’m bugging everyone here oh so shamelessly, and Dave sent out over 30 letters…it’s such a tough economy, and there are so many things to support…but if anyone can join the $5 challenge, a dollar for each year G has been battling the Beast…or $11 for each year of her life…or $7 for Rosie’s age…or heck, $1 because money is tight and we all are in that boat…we’d be really grateful. And if not, that’s fine, too…just please pray that Dave gets through the race ok, he is worried because of how last year played out. Like, he hasn’t done the same training run since. He has changed his hydration stuff. He is more worried than I usually see him, even though he completed a half marathon in hard conditions (extreme heat) back in April.

I’m so sorry to beg. I hate it (which is why you’ll never see me ask in person, I just can’t do it). It’s just…well, I ironed on G-foRce! logos to our NF Endurance Team shirts…and I want my girls to have the future full of hope we say we’re running for.

So thanks…I so have to run to school…

Oh, and a very happy woohoo…our dear friends, George & Jen, asked us to be godparents for their beautiful new baby girl, Megan Elizabeth!!! We were so surprised and excited and grateful…Jen, I have to call you…

Peace,
K

www.active.com/donate/nfpdr2009/DCamiolo

And I did make new G-foRce! stuff at Café Press, I so have to order for us!
www.cafepress.com/go_GFORCE
or www.cafepress.com/go_GFORCE2

and RU LAX, I hope we can get down there soon! G wants to see everybody!

Monday, September 7, 2009 10:03 AM CDT

Wednesday Commercial Message sponsored by the G-foRce!...Running for a Future full of HOPE!!

HEY, the new G-FoRce gear is here!
ALL PROFITS GO TO THE NF ENDURANCE TEAM! visit www.cafepress.com/go_GFORCE for fun stuff with pics of the girls, or www.cafepress.com/go_GFORCE2 for fun stuff that just has our logo without the picture!!

THANKS FOR HELPING US FIND A CURE!!!

*****************************
Hi, all.
Happy Labor Day.

Just a quick note, we’ve been trying to gear up for school and cramming in all kinds of last minute summer fun. The weather has been gorgeous, finally. Our trip to Hershey Park was a lot of fun…Rosie is apparently a roller coaster maniac, and this time even Genna went on a few smaller rides, which made the day a lot more fun.

Thankfully my vertigo cleared up by last Saturday, so I was able to do a few smaller things with the girls. I avoided the scary stuff…although I did realize, after attempting to help Genna be brave and going on the ski-lift kind of ride with her, that my fear of heights is nearly pathological. Ooooh, yikes. I just closed my eyes so I would stop envisioning us crashing to a horrific splat, and Genna sang “Oh would you like to swing on a star…?” …it was a spectacle. I opted OUT of the Ferris Wheel the next day ; ).

My brother has been home this weekend, which has been more than awesome. We’ve had a lot of great family time.

This week is the big leap into school…a lot of firsts for all of us. I feel like an anxiety machine, but it’s all good. Andrew starts high school in a new school, G starts 6th grade, Rosie starts second grade, and I go back to teaching. I am almost kind of readyish. Not. I have put in hours and hours and hours (of course NOW the weather is gorgeous, and my laptop is broken! Ack!)…hours reading and writing and planning, and things are starting to click. I have the first couple of weeks pretty solid, really, I just need to write them neatly out in one place (today’s job). All our activity things really start next week. Yikes.

And in 2 weeks Dave & Andrew run in Philly. Fundraising has been rough this year, but we are keeping on chugging. Thank you to everyone…we really appreciate your support, we know how rough it is this year.

Yesterday I saw Fr. Rea, the priest who does this healing thing. More accurately, he very simply prays with people, and a lot of times they experience healing. We met him 4 years ago…he is VERY low key, not at all what I expected/feared. He said a simple prayer with G…and of course, the next 8 months were the WORST ever. We kind of laughed about it wryly in retrospect…but I realized, ultimately, that for G the miracle happened in 2006, when we avoided what would have been a catastrophic tumor issue in a way that stumped the docs. Yes, G still has tumor. A lot. In a lot of places. But it wasn’t the horror the docs thought in 2006…we kind of said this to him when we saw him again in late 2006 or early 2007. I think, too, that talking to Fr. Rea in the desperation of 2005 helped ME accept this whole business and be able to be the advocate I need to be for G.

Which is kind of all backstory, but I realized yesterday, seeing him again (he was happy to see G looking so healthy, and she, of course, was delighted to see him—she asked him to pray with her, and he did, in a way that was very sweet and simple and made G happy), that in some ways the miracle of G has been a slow motion miracle. Each day that the tumors sleep is a miracle. Each day that I don’t join the Foreign Legion…well, maybe not a miracle, but probably a good thing! ; ) Each day that Genna overcomes the ongoing legacy of NF in her life…that really IS a miracle.

Maybe praying with Fr. Rea wasn’t the moment this path of slow motion miracle began, but I do kind of think that’s when I began to SEE that a slow motion miracle marathon might be something I could not only live with, but appreciate, even as I hope for more.

Yesterday Fr. Rea said “Hope is faith fixed on the future”…a belief that there WILL be good…(and he has this awesome New Zealand accent, so anything he says admittedly sounds cool! : ) ). But it really struck me…I don’t want to lose the belief that there will be good eventually…maybe not here and now, but good WILL come.

How can I look at Genna & Rosie and think otherwise?

Back to lesson plan, and hopefully get outside a bit, and then watch RU hopefully not lose, er, I mean, win! against Cincinnati…

And if anyone can help my boys in their race…even $5, a dollar for each year since G has been battling her brain tumors…that would be awesome.

And fyi, September is Pediatric Cancer Awareness Month…check out www.teamunite.net for ways to support all the kids who are fighting the beast.

I also finished the G-foRce! official new snazzy logo, maybe I can set up some Café-press stuff (just don’t look at anything I put up and any of Heide’s Team Unite stuff the same day, her stuff is uber awesome! : ) ).

Peace,
Kristin
www.active.com/donate/nfpdr2009/DCamiolo

www.active.com/donate/nfpdr2009/ACamiolo

Sunday, August 30, 2009 7:36 AM CDT

The Great Figure

William Carlos Williams

Among the rain

and lights

I saw the figure 5

in gold

on a red

firetruck

moving

tense

unheeded

to gong clangs

siren howls

and wheels rumbling

through the dark city.

How do you hold 5 years in a few paragraphs?

There really is no good way. I’ve been thinking about this, thinking about the chasm between five years ago and now. Thinking with some dismay about how much I’ve forgotten, how much has slipped away of the 10 years BEFORE this day. Thinking about the ups and downs and the terrifying speed of the whole thing. It’s an uber-cliché, but the whole thing really IS like a roller coaster that never ends…and this week, strangely enough, I’ve been having some insane vertigo issues (just an inner ear problem, apparently), so I actually FEEL like I’m on a roller coaster.

But really, among the rain of the hard times and the lights of the beautiful people we’ve met, the doctors who saved my child again and again, and the wonderful organizations that made my Genna smile…the figure 5 in gold moves…

Five years is a wonderful/terrible milestone.

If Genna’s tumors were gone, we’d say she was at the magic 5 year remission mark. But we know in NF that’s not how things work. With NF, the tumors are still there, quiet now, but the gong clangs and siren howls do rumble somewhere, if only in the darkness of my maternal heart.

With every scan that emergency looms, that firetruck comes tense, if never unheeded! With every weird headache or crazy day, I feel the reality of 5 years of accumulated yikes.

For G, 5 years is a remarkable achievement, and a blessing. She fought hard, and for whatever reason she has made it five years. So many of our friends from the very beginning—friends who also fought so long and hard-- haven’t…

“… wheels rumbling
Through the dark city”…

Hadley…Nora C.…Sandra…Timmy…Emma…Nora U…James…Justis…and more friends, more angels as the years go on…Kyle, Jessica, Dakota, Ryan, Erin, all the names in my little list above times 5.

“the figure 5/in gold”…

We’ve earned this 5 years of Survivorship pin, but it comes inscribed with the names of all of our friends and the children of our bt/nf community who have ended their battle here. That’s a painful inscription, and I would dishonor these kids if I didn’t acknowledge that.

At the same time, I celebrate my Genna, and who she is becoming…from a terrified (and Very Strong Minded) six year old to a vivacious (if still Very Strong Minded) 11 year old…Genna is funny, compassionate, helpful, enthusiastic, and sweet. She makes me crazy about 6 times a day, and makes me better another half dozen times. She sings little songs and hates hiking just as loudly. Genna is curious and diligent, ocd and a worrier, loving to little kids, engaging to adults.

Is she like this Because of the last 5 years, or in spite of them? I don’t think we’ll ever really figure that out. But either way, the figure 5 in gold is hers today.

And for Andrew and Rosie, whose lives were turned over by the last five years…I am sad/glad for them, too…glad for the blessings they’ve shared, sad for the Mom & Dad they sometimes kind of lost in the crazy of the last 5 years. They’ve earned a sibling “5 in gold”, too…just like so many other sibs of kids with catastrophic illness. They are the unsung victim-heroes (not necessarily in that order) of this journey.

Our lives changed forever, in ways far beyond medical, on August 30, 2004. Dave and I are not the same…we are older, obviously, but again, in much more than years. My heart feels like it’s 400 years old sometimes. We are still trying to figure out what we’re supposed to DO about all this, how we are supposed to help good come of this. For every child with a catastrophic illness brings good to those they meet…they are KIDS, not saints, and the inherent dignity and beauty of a child is focused in the struggle for life and death.

We are off to Hersheypark today, a fitting place to mark this moment, even if I have no energy…certainly better than being in our house, the shadows of diagnosis day still lurk in corners on August 30. We will eat chocolate, swim in an over-chlorinated hotel pool, and look for the giant walking Reese’s Peanut Butter cup guy. We will LIVE today, NOT five years ago, even though I know that will require much effort. LIVE Today. Because Today, even if it’s a hard day, is worth celebrating.

We will honor the 5…take a deep breath, and begin the next 5…10…50…

Peace,
k

only 3 weeks until the race…here are the links…thank you to all who have donated, we are beyond grateful…

http://www.active.com/donate/nfpdr2009/DCamiolo

http://www.active.com/donate/nfpdr2009/ACamiolo

Monday, August 24, 2009 8:26 AM CDT

TUESDAY: we made ice cream pies, and G made this chicken thing...a fest for all... ; ) --k

Happy Monday, all.

Today marks 3 years since we sat in Dr. B’s office, looking at G’s MRI films (always best to avoid this too soon after eating)…and hearing the utterly unexpected, “Genna’s been stable a while, I think we should take a break”. To stop chemo 2 rounds EARLY…?? We are Camiolos, we do NOTHING early. But Genna’s counts had taken such a hit from this third protocol. We had already dropped one drug altogether and decreased the dose on the other 3 to 75 It made sense to stop, since the tumors seemed stable.

We should have been wildly rejoicing.

We were terrified.

To go from multiple Philly trips each week to “come back in a month for a port flush” was staggering. Ultimately it was good, what’s NOT to like about stopping chemo? But still, to say we felt lost and adrift is an understatement.

Actually, I probably felt it more than Dave at that point, since I was the chauffeur for Transfusionfest 2006. But we were both really uneasy about stopping. G’s tumors have never behaved for more than 7 minutes. If we stopped hurling toxins at them, who knew what would happen?

Three years later…things are still stable. We’ve had some scares, we still have to be vigilant (our last scan reminded us again of that)…NF is a feat of endurance whether we like it or not. But three years off chemo is a beautiful thing.

It took me a couple of years to reclaim pieces of my house…to purge most of the baby clothes…to finally turn the extra room into a guest room…to repaint certain LONG neglected spaces. It took us 2 years off treatment to finish painting our upstairs hall…the job left half done on G’s diagnosis day.

So today, while we struggle with the knowledge that so many of our friends are starting the battle again, we mark this day. I feel a little guilty about celebrating when others are in such deep water; guilty and simultaneously defiant on their behalf…like we dishonor our friends if we don’t eat brownies in the face of the beast. Kind of “oh yeah? You’re going to smite our friends? Well WE WILL NOT BE COWED. We will find a cure, and for each kid who is fighting we will pray and send good thoughts and fundraise and do whatever we can because in the end, the tumors NEVER win. They don’t . We may lose warriors to the beast, but their spirits live on long after the tumors wither.”

Kind of a “so’s YOUR momma!” in your face tumor throw down.

Yeah, it’s been that kind of week. Marking this “end of chemo” day in the same week that we will mark 5 years of survivorship is an “ok, take a deep breath” kind of moment. Marking it the same week so many of our friends had such horrible awful news…also an “ok, take a deep breath” kind of moment.

But when Genna heard Lexie celebrated her 2 year mark off chemo even as she likely has to battle the beast again, (!hello, Courage 411? Never mind, I know the number), she decided maybe she should “have a fest”…heck, I’ve trained her well, she said “maybe we could get a small Costco cake?” (no, they don’t make small ones, that’s my girl!).

So we will do something today. And we will pray for our friends, and rejoice in today.

I have to say, too, that G’s haircut is adorable. I have to find my camera cord so I can upload a picture of her short hair. You can probably still see it at www.ronaldmcdonaldcamp.com under the Thursday pics…I still can’t believe she had 10 inches to cut off…

Anyway, better go start this day for real. We have begging letters to send for my boys’ race, I MUST get some lesson plans on paper for my “very part time back to work oh yikes” thing, and we may just have to see how small a cake Costco makes.

Peace,
Kristin

DAVE’s page for the race!

www.active.com/donate/nfpdr2009/DCamiolo

and Andrew’s page for the race!

www.active.com/donate/nfpdr2009/ACamiolo

no donation is too small…and at least in our house, no cause is so great.
Thank you…

Friday, August 21, 2009 5:05 PM CDT

Hey, all...
back from the Land Of Grim with some little hoorays. In a week where so many of our friends have awful news, I'll take any little hooray!

Genna DID it. She had her hair cut while at camp. Check out www.ronaldmcdonaldcamp.com today (the pics are under "Thursday", right now they are the ones up)...I saw the back of her head in a picture and said whoa, baby...scroll down further and they have a before & after shot. She so wanted to do this for Locks of Love...and I am very proud of her.

3 years ago G had thin, stringy, funky chemo hair. Half of it was gone, but she still had a covered head (she has mountains of hair)...today she has enough to share...this is a blessing.

And even more a blessing is the fact that she wanted to do it. Says a lot about who G is.

The living room is painted, almost cleaned up. The girls have a new bunk bed (The Assembly Project from Gehenna) and a fun little reading nook...tomorrow Dave & I will leave at 7 to go get G, then off to get Rosie...then I will have everyone home.

It's a good thing, because I keep having nervous fits each night thinking I forgot to give G her meds.

It's been hideously hot here, but a giant rainstorm came through and the air behind it, while still vaguely terrarium like, is cooler. Phew.

And once again, Dave & Andrew are running for a cure in September. I can't run with them this year (stupid knee), but I can keep begging shamelessly. If anyone can help even a speck, that would be awesome...

http://www.active.com/donate/nfpdr2009/ACamiolo

http://www.active.com/donate/nfpdr2009/DCamiolo

Thank you. For G, and R,and Emma, Jenna, Drew & Joey, Katsie and Carly and Gabbie and Rosie C. and Alex--and for our non-NF bt friends, who use so many of the same treatments...especially Lexie this week...thank you.

Must go cook salmon, while the girls are away the parents will eat fish! : )

peace,
Kristin

Wednesday, August 19, 2009 9:47 PM CDT

Hey all¡K

Just a note from the pit of despair that is our nearly painted house. If I never wear this paint clothing again it will be too soon. Bleh. Remind me, the next time we get our first 90 degree weather all summer, to NOT go paint something.

But the living room is nearly done. I think Dave is finishing up, then we just have to clean & re-assemble. Bleh. At least the paint looked like chocolate mousse when I put it on the walls¡Kit¡¦s a great color.

Genna is apparently doing really well at camp. She is in a picture online in both the Sunday & Monday shots (not Tuesday), and she¡¦s smiling in the Monday one, so that¡¦s promising. The camp director said she did yoga 2 days in a row (her favorite) and was actually quiet the whole time! Egads! Tomorrow she may be getting a very Special haircut for Locks of Love if her curls are long enough. Dave & I are really trying hard to be zenlike about her chopping off all her hair. Trying. Really. Hard.

She has talked about doing this Forever, and heck, We know hair comes back.

One report said Rosie was doing well¡KI miss her terribly. She is my little sweetie, and she takes such joy in everything¡K

It¡¦s not been the best couple of weeks here.

Without details, just been struggling with some big regular life whatevers. On top of this, FIVE, yes ¡KFIVE of our friends have had not great scans in the last week. 3 within the last few days. And yes, ¡§not great scan¡¨ is euphemism for THE FLIPPING TUMORS GREW. All these little kids, and the $^#& tumors GREW.

This is every bt parent¡¦s nightmare. And I DON¡¦T mean that metaphorically. Real, sleep robbing, bone crushing, gasping for breath nightmares. This is it.

We¡¦re having a heat wave here, and I have hardly left my un-air conditioned house because of the painting job. Today I checked my potted basil plants, and the one pot was alarmingly withered and thirsty.

This is what hope looks like in a week like this.

Brain tumor/NF worlds (which in our family are overlapping communities) can be so lonely. So very lonely. So these relationships, all but one of which are only ¡§cyber¡¨ or by phone, are very, very deep. My heart is always so full for these kids. One is Rosie¡¦s boyfriend. One is ¡§the girl who told us about melatonin¡¨. One is ¡§Jenna with a J¡¨. One is ¡§the little guy who came to our coffeehouse and had to leave to go to bed¡¨. And one is ¡§Genna¡¦s long lost twin in Wisconsin¡¨. We love these kids so much¡K

I¡¦ve always loved my grandmother, my dad¡¦s mom. She died when I was not yet two years old, but my whole life I have really felt her. A few years back we had the extended family in for Rosie¡¦s christening, and one of the great aunts gasped and said of me, ¡§she looks like Marjorie¡¨¡KI¡¦ve always KNOWN my grandmother, even though I only knew her as a baby. I know she loved me¡K

Which seems an odd segue, but the point is you can love people you¡¦ve never met. Your heart can break in piles of pieces for children you only see in pictures, for moms you only joke with on Facebook or cry with on the brain tumor support group lists.

So it¡¦s been tough this week. And tonight, hope is like that withered basil.

I know that the basil will perk up (I did water it once I saw it was parched), and I know I¡¦ll get my fight back. Right now it¡¦s a 99 red balloons that someone popped kind of night.

It¡¦s just a lonely kind of night. And I miss my girls so much. Andrew ended up only doing one week of camp, I¡¦m not just being mean, he¡¦s here.

It¡¦s funny, too, the stupid ¡§merely a flesh wound¡¨ on my hand (the infamous ¡§headstone incident¡¨) won¡¦t really stay shut, I keep hitting it on things (that¡¦ll wake you up)and covering it in ¡§Polar Bear¡¨ and ¡§Brown Teepee¡¨¡Kand I got new bandages, which I think I¡¦m allergic to. Like, blisters on my thumb¡K. I keep thinking of all the chemo kids who have such a terrible time with bandage allergies (G, thankfully, did ok with the tegaderm, which this bandage mimics). It¡¦s really not fun, and it makes my heart hurt for them far more than the blisters hurt me (they¡¦re actually itchy. Maybe Einstein should TAKE the Bandage OFF and try the Barbie bandaids¡K?)

Anyway¡K

Dave & Andrew ARE running in Philly on September 20 or 21 (whatever that Sunday is)¡Khere are their links¡Kif you can help at all, we would be grateful. Even a dollar. Every dollar helps, and we are woefully behind in fundraising.

http://www.active.com/donate/nfpdr2009/ACamiolo

http://www.active.com/donate/nfpdr2009/DCamiolo

Thanks, everyone. If you check out www.ronaldmcdonaldcamp.com you might see G in a picture in the next few days (or go back to Sunday or Monday¡Kshe is way down in the pics both days). And thanks for helping us find a cure.

Please pray for our friends¡Kespecially Alex, Joey, Lexie, Jenna, and Emma tonight. ƒ¼
Peace,
Kristin
p.s. happy Birthday almost, Emily!

Saturday, August 15, 2009 8:55 PM CDT

Hi, all...
a super brief note, just to say I dropped my baby off at Camp today.

She almost forgot to say goodbye to me, she was so caught up in her friends and fun...I just hope she does ok at night, so many nights she comes into our bed because she "has a scary thought!" (and she's amazingly barnacle like when you try to remove her from the bed).

Sigh, but hooray for Rosie.

Tomorrow we drop G off. She is a little nervous...the main issue now is so stupid, she managed to bite her lip yesterday after getting dental work done, she now looks like a prize fighter. It's swollen and nasty, I've got 2 meds on it now, hopefully it looks WAY better tomorrow so the camp folks don't say yikes. She is worried about being homesick, but I know she'll have so much fun.

It's been a weird week for her, she had an infected finger this week, too...bizarre stuff.

And I cut my hand on a headstone on Thursday(don't even ask), probably should have gotten a few stitches (after prying off the tape and looking at it today--heebie jeebie), but it seems to be healing ok. My career as a hand model will likely never materialize, but I think I can live with that.

The week's been a tad crazy in other ways, but that is...whatever. My living room now has almost all white trim, so some progress is being made. I am just dreading the ceiling, I hate painting ceilings (and this one needs a bit of patching).

Typing is still a bit painful, so I'm off...but please pray for my gals at Camp, and for all our friends battling on. And if anyone, anyone can help us find a cure, please check out my boys' links...

http://www.active.com/donate/nfpdr2009/ACamiolo
and the same thing with DCamiolo at the end. A half marathon...run with the NF Endurance Team (last year about 160 people!) and 15,000 other runners (like Olympic people, seriously they were SPRINTING to the finish, it was insane...insanely Awesome!)...please...

Another local NF friend is in a difficult time...another little kid, so little...We HAVE TO FIND A CURE!

sigh.

Ok, off to bed (ish)...so much to do this week...

And again, to our RU LAX friends, G is SO psyched about the messages (and the coin toss!) and seeing you all again. The picture above, where she is so happy...yeah, that's at an RU LAX game! : )

peace,
k

Monday, August 10, 2009 4:36 PM CDT

Hi, all.

Happy sweltering Monday.

Actually, in my basement things are ok. But the rest of my house is definitely heating up.

I only have a minute (yeah, newsflash!), but I did want to say that Andrew is safely off to Camp. This is a good thing, because as I go through his room I am not feeling extremely zenlike. The distance between us is likely a grace right now. Argh. I did ask him to try & sort some stuff before he left…yeah…his shirt drawer was still full. Two weeks of sleep-away camp and his drawer is full. Yikes!

Even though I am a bit irked at spending so much of today sorting through stuff he won’t use and books I can’t get him to read, I am glad for him to be at camp, he was really stoked about going.

Rosie got to go check out her cabin for next week. She wanted to stay…but momma isn’t ready for that yet! We gave her the choice of going to church camp with Andrew (where a lot of her friends are) or to Ronald McDonald Camp with Genna (the garden of earthly delights, but she wouldn’t know anyone). Rosie is shy, so she chose friend camp. We’ll bring her up on Sunday, then drop Genna off at RMC…then I shall begin running around in circles or making random noises kind of like a Wookie.

Ugh.

Otherwise, things have been chugging along. I feel a little bad that I haven’t tried to keep everyone doing school stuff at least a little this summer (except Andrew, he has assignments…you may have heard the gnashing of teeth last week, he is so glad his mom was an English teacher). But the break has been nice.

Genna has been laboring through her summer reading. I think we’re at an interesting point…we know abstract stuff is going to be hard for her, we’ve seen some evidence of that (she is Ms. Literal), but it has kind of gotten in my face the last few weeks. G has to read a bunch of books this summer; she can choose the titles, she just needs to hit a couple of different genres, one of which is fantasy. She is now on her 3rd book…she struggled through Phantom Tollbooth and totally didn’t get it (I never read that, so I was no help). Next she tried Time Cat, which I thought would be reasonable…nope. She tries so hard…so now we’re on to The Lion, The Witch, & The Wardrobe. She is mostly getting it, I think…she comes to me every few minutes with a question about the 1940s British vernacular, but she’s getting through.

This is a silly thing. I know. It’s just…well, I LIVED for books like the Narnia books, Lloyd Alexander, eventually Lord of the Rings (think I’ve read that 7 times?), just loved that stuff. To have G not be able to figure it out…

It’s a silly little thing, but it’s like cross stitch and other little things I love that she can’t share. It makes me sad.

Been thinking a lot about the 5 year mark coming up in a few weeks…the thoughts of “where we were 5 years ago” still occasionally take my breath away. Hello? I know. But they do. I wish they didn’t. I have accepted this all, really, I have. But I’m not at peace with it a lot of the time. And I’ve started to realize how that is spilling over into other parts of my life.

I think Dave is kind of on the same page, too…in a different way, but it’s surprising to me when he isn’t Mr. Sunshine…

Whatever. We’ve survived this far. We’re not giving up yet. We just feel kind of lost.

ANYWAY…we are off to a post-baseball pizza party without Andrew tonight (we love our team!), then I think there’s a neighborhood bbq tomorrow that I was supposed to RSVP to (oops), then Wednesday the girls help Grandma (the highlight of their lives) and then Thursday G has a dentist visit and then I think Dave has off on Friday…phew! We also kind of want to paint the living room in the next 2 weeks and maybe replace Andrew’s “got it off the back of a truck for free” bed.

Do you know how expensive beds are? Egads!

We have OFFICIALLY started Philly Distance Run fundraising…a good thing, since the race is in 6 weeks! I have some fundraising ideas…but for now, here is the link to Andrew’s page:

http://www.active.com/donate/nfpdr2009/ACamiolo

and Dave, who WILL NOT BE COLLAPSING AT THE FINISH LINE THIS YEAR has a page, too…

http://www.active.com/donate/nfpdr2009/DCamiolo

They are pretty much the same, since yours truly has to make them up. Well, right now Dave’s is very empty, I don’t know the password he gave himself! ; )

I know things are tight everywhere. I’m kind of thinking of doing a $5 challenge, like lets see if we can each find 2 people to donate $5…who each find 2 people…who each find 2 people…or something. I can’t make Dave be colorful (Andrew actually runs with a baseball hat on, he had it surgically implanted, I think), but I will try to think of some incentive to make this fun.

Because we need a cure so badly. On Facebook today I saw a little guy who just lost a leg to NF. He looks to be about 5…

We Really Need a Cure

Better get my gals ready to go…thanks for globbing along with us, we are so grateful. And please remember Angel Dani-Ella on her birthday tomorrow (US time)…

Peace,
K

and thanks, RU gals, it means so much to G to see your posts! : ) Can't wait to see you all!

Sunday, August 2, 2009 8:21 PM CDT

Hi, all—Happy Sunday.

I hate leaving an update up for a week, but I am singularly lacking in energy to say anything long. Maybe it’s Facebook-itis, I really do like expressing what’s up with my world in one sentence at a time! ; )

The boys are having a fantastic time on their baseball road trip! The hotels all worked out great, all within walking distance of the respective stadiums (Camden Yards, Baltimore…Pirates (Progressive Field), Pittsburgh, and Jacobs Field, Cleveland). This was a relief, I’m never sure when I put all this stuff together using only my trusty internet how things will work out. Dave called around 5:30 from the shores of Lake Erie, which is kind of cool.

I will be glad to have them safely home tomorrow.

The girls and I have kept busy celebrating Aunt Rita’s birthday with many a fest & surprise…cleaning our perpetual pit of a house…attempting to buy school shoes (I’m still muttering about that, don’t get me started)…and today …drum roll…BOTH GIRLS got their ears pierced!!!

Rosie has been planning since she saw her little friend Naomi’s earrings back in February; I said she had to get past her next scan (just figured I was jinxing things if I let her get them pierced earlier…it makes sense, any mom of a chemo kid knows what I mean!), and she has been waiting. I figured whenever she wanted to do it, we’d go. A few days she has been all ready to go and then our neighbors come over to play, and she gets distracted. But today was so rainy…so off we went!

(I can hear her walking by the window of my office saying “I saw earrings that said “R”!!).

Rosie was a trooper…she didn’t even peep when the lady pierced her first ear, sat perfectly still…so much so that Genna said, “I’m gonna do it!” and hopped up into the chair!

Say what, Willis?

I never thought G would do it. She Does Not Like To Get Poked. Figuring she’s been poked, oh, maybe conservatively 200 times in the last couple of years, I understand…

(now my nephew, who followed Rosie in, is saying with gusto, “I saw (name of college guy who lives on our street) and he has One Eaw Piewced! A EAWWING! IN ONE OF HIS EAWS!! Dis—gusting!” …heehee)

Sorry, I am easily distracted. Anyway, Genna did great! I just hope we can keep everybody infection free. I figure G has 4 months for these to totally heal before we have to take them out for an MRI, so hopefully all will be well.
I am tickled and very proud of them both!

We only have one week until Andrew goes to church Camp, then another week until Rosie joins him there and Genna goes to Ronald McDonald camp. Our local paper had a great article the other day about a woman who saved 121 POUNDS of soda can tabs for Ronald McDonald house! I was mightily impressed…I save can tabs, too, but hello, this lady grabbed tabs from everywhere, she had mountains of them. Unfortunately she died of cancer before she could deliver them, but her family finished the project for her.

Every day I am just floored by how many ways there are for us to help other people. Saving can tabs…like that’s a big deal? But as a gal who’s stayed at RMH twice in Philly, and who has seen what those folks do for Genna at oncology camp…I can’t even tell you how much that means…

Talk about distracted…I must admit, my nephew was followed by Rita (and Sharon) who invited us down the street for ice cream…Thomas Sweet ice cream, no less (an RU favorite treat!), so I sort of left for an hour and a half…and now I forget what I was going to say that was meaningful…

Well, that’s likely a sign I should just stop for now. I do hope to have Dave & Andrew’s fundraising pages for the Philadelphia Distance Run (a half marathon…the one Dave collapsed at last year, ergh) up as soon as they return from their trip…I have a preliminary logo done, but I am not convinced it’s enough…I just feel like life is racing by. But today was a very good day…church, ears pierced, torrential rain (it’s always a bit of an adventure to get caught in a downpour), a movie fest (the original Escape to Witch Mountain from the 70s…nice!), REAL popcorn & Swedish fish…then a bike ride down the street (one time, a neighbor was having a party and my girls just can’t steer, I was graying as I trotted behind them), then an unexpected ice cream treat…really, it was a GOOD day.

The five year mark is this month. Five…years. Five years. Five. That is a lot of years to be doing this…and I have a lot of thoughts about it (for one: Rosie doesn’t remember life without brain tumors and Philadelphia and Dr. B…a sobering reality). Combine that with returning to work after 11 years out (cough choke gasp), and a kid going to high school, and Dave turning, well, grown up…I feel a bit like I’m on the “drain and spin” part of my washer cycle. Ergh.

But today was a GOOD day, and that is that.

Please pray for all of our friends battling…in five years we’ve met a lot of people…and lost a lot of people. That’s a trend that has to change…

Peace,
Kristin

Tuesday, July 28, 2009 11:20 AM CDT

Hi, all…Happy Tuesday.

It finally feels like summer in New Jersey. Hot, humid, bleh. Tonight is our last baseball game. I’ll definitely miss the wonderful families of Andrew’s teammates…I’m glad to have one less thing to schedule. My brain is just always so full.

Genna’s birthday was really nice—thank you all for the birthday wishes, she was very tickled to hear them all!

Saturday morning we went on the Children’s Brain Tumor Foundation Kid Cruise around Manhattan…it’s a great event we’ve been able to participate in for the last 4 years. DJ bagels face painting = one very happy Genna. The boat is sort of irrelevant for her, but the rest of us really enjoy the trip by the Statue of Liberty! We also got to see some of our online friends…and in a funny moment, we met the family that we were stuck in registration with at that ungodly hour last Tuesday! Their G was super cute for her birthday, and she and her sister danced with our girls…so cute.

Andrew had baseball Saturday night, a playoff game…I went late, with Rosie, we were there 2 minutes (literally) and she told me she didn’t feel good. Ugh. FEVER! Today she finally seems mostly better, her temp is slightly elevated (like a degree) but not the 101.5 of yesterday. My poor girl…

The big excitement here was actually Sunday. Dave & Andrew went off to baseball, and Genna went to Grandma C’s for a bbq. I called Dave to see how the game was going, and he sort of casually mentioned that there was a tornado watch for our area, specifically where he was. ACK! I have this weird tornado thing (recurring nightmares for years, never figured out why). Needless to say, I was not amused. Off to the Weather Channel…and sure enough, there were alerts, and a map with our town on it and a big whomping storm…

Now I wasn’t REALLY that concerned about a tornado. This is Jersey, after all, not Oklahoma. But I figured I should take down our patio umbrella and get the loose stuff out of the yard, close the windows, etc. I’d like to say my kids put everything oh so carefully away when they are done playing…um, not so much. I finished just as the big thunder was starting.

We had the Weather Channel on; Rosie was nervous…the rain started, no big deal…and then the wind…I looked out and saw Elizabeth’s friend Tim crouched next to his car…as the tree next to him was kind of alarmingly sideways…as were all the other trees in the yard. I grabbed Rosie and ran down to the basement, put her by the closet in the playroom and ran to the back door so I could see if anything was coming (our back yard faces due west, the direction the storm was coming). Hail was pouring down, and I could see 2 of our trees were down in literally the first 2 minutes…Tim and Elizabeth joined us in the basement (Tim got back inside ok)…it was about 5 minutes of very scary…rain was pouring in the cracks in the windows I hadn’t locked shut, everything was a mess…I called Dave (somewhat panicked) and he said it was sunny where they were. Of course it was! : )

And then the sun came out, and a rainbow…

We went out to survey the damage…our neighbors came out of their basement, too (wasn’t just me being nervous!)…leaves and twigs were everywhere…we lost one & a half trees (not actually 2, as I first thought, but half a tree is kind of pitiful), our neighbors had siding torn off their house, across the street neighbors lost 3.5 trees…across the main road a big tree was down…it was a MESS. Yesterday I finally drove down the main road, trees and branches were down everywhere. It was apparently worse down towards our supermarket…

My kids are so fighting upstairs, my teen is making my hair gray while I type, it’s amazing.

Anyway, everyone was fine. We still have to clean up the yard, not sure what to do with the tree. We are very grateful, though, that just a few days ago we took down the giant dead oak in our front yard…that would have been scary.

Just had a tattler down here…better run. Friday Dave & Andrew leave on their big Road Trip of Baseball, Baltimore/Pittsburgh/Cleveland. The girls and I will be having quality time here. I really need to work on school stuff…and I have to get to work on our Philly Distance Run fundraising. My personal running training ground to a halt after I hurt my knee. I am trying to determine if I can manage to do the race anyway, just slowly. The boys here don’t see Slowly as an acceptable alternative, but I hate feeling like a loser about this. Logistically it would be a challenge, too…would have to bring someone who could stay with my girls…I may need to wait one more year, but that is kind of a bummer. I do like cheering…Loudly…for every NF person who runs by…sigh.

I’m working on a new logo…for both G & R…need to write a letter…need to beg again.

I am so tired of this.

Oops, another tattle break…that may be my sign to keep moving. I figured I could update while I printed a history document, but now my printer cartridge went bleh. UGH!

Please pray for all of our friends battling brain tumors & NF, especially Drew scanning this week…for G who is nervous about camp…and for inspiration for fundraising…so we can find a flipping cure already.

Thanks, all…
Peace,
Kristin

Friday, July 24, 2009 4:00 PM CDT

From an American Cancer Society advertisement:

Happy Birthday is a Victory Song

And today, on Genna’s 11th birthday, I’d have to say that’s true.

We have so many victories to celebrate, today I am trying to cleanse my mind of the what ifs, the yikes, and the painful oh, remembers? and just celebrate the hooray of 11 years.

We were never promised that. Ever. And I AM grateful…even when she makes me berserk (really, TEN mozzarella sticks? All at once?...or please don’t tell me the same joke again, please)...I am so glad for her. I am so glad for her genes that are just like Daddy’s…and I don’t mean the NF ones, I mean the myriad ways she is utterly Daddy’s girl. I am so glad for her sense of humor, even when it isn’t funny (!), and I am so glad for her compassion.

She had her birthday breakfast with Dad at the diner, her Luau with the girls in her class & her buddy from the grade below (and thank God it didn’t rain…my house is not handicapped accessible, and I didn’t quite know what I’d do if I had to get her wheelchair bound buddy inside)…6 pizza doughs are in various states of rising on my counter, one really ugly cake is decorated (I am so bad at this), she is having a quick bath and just rejoicing in everything.

I have to go clean my house…planning a party with class & then with family for 3 days after a scan is kind of ill-advised, note to self…but I think we’ll pull it off.

We have a lot to be glad for…

And now she’s yelling down the stairs to see where I went shopping during her art lesson…I ain’t telling! : )

Happy birthday, G-bone, G, Gennahenna…happy birthday…

Peace,
K

And ps. Gabbie’s fundraiser was awesome, my girls won 2 prizes each, and we got to meet Supermom in person (and the Queen)…so happy, wish I could have talked to O more, we’ll have to meet again! : ) Esp. since I owe her cookies, I should NEVER be allowed to promise anything the week before a scan, you’d think after this many years I’d KNOW that…

Tuesday, July 21, 2009 9:07 PM CDT

Incoherent (literally, can't speak coherently) with tiredness, but short version: Rosie is solid stable. G is stable but complicated, to quote the doc. We won't wait 6 months again for G, certain areas just light up a bit too insistently for us to indulge in such delights again right now.

The girls did so very well, they are so brave...
from leaving our house before 5 a.m., we were gone until about 9 tonight...an insane day, scans, pokes, new friends, a long wait, and then ending with the eye study again...the girls were troopers both...and totally slap happy by the time they saw the doc, it was alarming.

A lot of interesting things today...some very, very sad (a first day family was there...like today was their diagnosis day, Dave had a really hard time with that, which was kind of interesting to me...), some just funny (met a little girl named Gina who seems to maybe be an NF kid (I don't ask before 7 am) and who has a birthday the day AFTER our G and who happily compared port scars with OUR G...just very cute and very funny to watch)...it was an interesting day, but I am nearly seeing in circles here, so I will come back when I can be not asleep.

thank you all for praying for us. It is good news...even if "extensive disease" is used in the conversation (SIGH)...just another milepost in the marathon we some how ended up running in involuntarily.

peace,
Kristin

Friday, July 17, 2009 7:34 PM CDT

Hi, all...

It finally feels like summer here in Jersey, hot & sticky. The mountains of laundry were finally overcome, Andrew did 4 days at basketball camp, Genna & Rosie "helped" Grandma C. for a day, and I managed to eradicate almost Every Pile In My Kitchen! I just have papers...every...where...

Funny how this summer the paper/organization thing is my pre-scan whatever. There are still rocks to move, but we moved most of them before Lake George.

So anyway, I figured I’d give a quick "hey!" before the weekend is upon us and while I'm still in my early evening haven't checked on other cb pages brain. Ie, relatively zen-like. Of course that might be because Dave & I just got a bite to eat, I had this lovely grilled shrimp burrito thingie, mmmm.

Anyway, I am once again piqued by the way things happen the week before a scan. From Andrew’s surprised, "ROSIE has an optic glioma??" moment of Tuesday (yes, really...he knew there was tumor, but I guess defensive thinking takes many forms) to finding a tube of LMX & a tegaderm in a Ziploc (the stuff we used to use to prep G's port for chemo), to finding my notes from one despairing night in the hospital when Dr. B came to visit us just to be nice, and how that made me feel better...all these things pop up This week?

Just a lot of reminders...a lot of explainings this week (to G's therapist, to random other people...the idea that low grade tumors are so viciously sneaky, they can wreak invisible havoc without us knowing until it's too late to fix things...or, more the way I have to explain it, "no, there’s been no symptoms of anything bad, but there doesn’t have to be for something to BE bad"). I get it, it's complicated.

Fighting...temptation...to break into related song...eek, curling my toes, trying...

But that said, G IS doing well. She is having more trouble at home with certain things just because it's hard to keep her busy. She LOVES busy. She told me while we were coming down a mountain at Lake George that she might be a chef someday, because she has a Lot of cookbooks and she could do a show for kids, because there aren't any cooking shows for kids. I find it a bit amusing that in her Food Network trained mind she associates being a chef with having a show! She loves her summer art lessons, she LOVES helping Grandma C. with the babies, she has so much love and joy. She is so into planning her birthday luau for next Friday.

And Rosie is perfect, too. Aside from being a mess and becoming hysterical when asked to make her bed (yes, still overtired from vacation!), she has no indication of anything wrong. She was doing fancy dance solos (in varying costumes) to a Muppet CD today, discussing when she can call Joey in Idaho back, making little flags out of scraps of paper and a bear punch. She has not forgotten that I offhandedly told her months ago that she could get her ears pierced AFTER her next scan...she was bopping up and down the other day singing about hooray for her scan, she can get her ears pierced…

I kind of have a different feeling this scan. Not the dread, so much, as a kind of empty uh-oh feeling. Like I know, intellectually, that the potential for cataclysmic yikes is just an MRI image away...but I almost can’t comprehend starting NOW, with an older kid or a different kid (twice as much fun, scanning 2 kids on one day, urp). I learned at G’s therapist the other day the idea of defensive pessimism (ok, so I read it in an article tacked to the wall, I get bored waiting while G is chatting)...the practice ...nay, the HEALTHY practice ; ) of expecting the worst and thus preparing for it. Some study found that people who do this are more fabulous or something (ok, so I was skimming by the end, or just rejoicing in my own validation!). But I just don't feel anything this time, except a kind of gnawing Jaws music in the back of my head (which just about drowned out Avril Lavigne, thank God for that).

In one kind of woohoo note (and then I’ll stop, really!), Dr. Avery called me about the study the girls did at our last eye check. Based largely on G and another kid, they changed the study! Apparently the idea of contrast-vision-issues as being important sort of stood out after seeing G and another child, so they re-vamped the protocol, and want to see the girls again. Since G JUST used her gift card on a joke book (heaven help us!) , she is thrilled...and I am kind of psyched that maybe all of this isn't futile after all, maybe somebody will help us find a cure...(and any og people at CHOP, they are still recruiting participants, and Dr. Avery, kind but foolish man, gave me his e-mail...! ; ) ).

So I know I will likely be back on Monday night to howl at the moon or something, but until then we have Big Stuff this weekend…much baseball, a dinner for Andrew in advance of his 14th birthday on Monday (he has baseball then, too), and then the girls and I are heading to Gabbie's Big Pose for A Cure event on Sunday ...which reminds me, am I supposed to have a pose-picture? Eek...I am excited to finally meet Super Mom herself, Ori, and of course Gabbie the Queen...nervous about the long drive, wishing Dave could come too (but Andrew kind of is very 14, you know? And in scan weeks, we have to tread gently, we have learned)...but excited. It’s not too late to join the fun…Pose for a Cure is on facebook, or you can visit www.caringbridge.org/visit/gabriellehughes to get in on the action. I am so bringing my camera… :)

Please pray for our friends, so many of whom are scanning right around now...and if ANY of our CHOP friends are in house on Tuesday, we'd love to find you. So far it sounds like everyone will be there every OTHER day, bleh.

Wishing you all peace this weekend…
Kristin

p.s. Judy—I can't remember how to get into your page! Been trying to check on you all, you’re in my prayers...if you stop in here, can you e-mail me? :)

Saturday, July 11, 2009 8:55 PM CDT

Hi, all…we have returned.

I am uber tired and drowning in laundry (2 weeks x 5 people = Everest sized laundry piles), but figured I should say something like “we have returned” lest people think we just took over a cabin forever.

I did learn many things on vacation this year. Here are a few.
1. If the Camiolos are going anywhere, they must pack umbrellas. Many umbrellas. And rain gear. Galoshes would have been a good idea.

2. The deleterious effect of gloggulous weather on my mental state is not assuaged by a change in venue for very long. Especially if scan day approacheth.

3. Kids are largely immune to this weather effect if there is a lake with fish and or swimming within 100 yards of their cots. Rain swimming is cool.

4. I really, really enjoy being with friends. Especially old friends, family-friends, and vacation friends!

5. Fishing is apparently better when the weather is only sporadically dry or warm. Although the best fish of the trip (19 inches?) was caught on one of the two or three glorious days we had, which was yesterday.

6. Dave’s fish cooking skills are now legendary among the 10-16 year old set.

7. I really hate the smell of anything fried in butter. Love fried food. Love butter. Hate that smell of the two combined. Even if the chef does have legendary fish cooking skills.

8. Having pets to Visit on vacation is a delight for my Rosie.

9. Genna is getting crazy good at Scrabble.

10. Aunt Donna & Uncle Ray have the best 4th of July show in the world.

11. I actually…wait for it…missed my exercise routine. Drowned my sorrows in peanut butter M&Ms, which was likely ill advised.

12. Genna saw the stars—and I realized that NEVER GETS OLD.

13. Rosie and I saw a dinner plate sized turtle while we were on our one kayak ride (did I mention the weather?) and I realized yet again how magically my Rosebud sees the world.

14. I learned how to make earrings. Ish. Thanks, Rita!

15. Watching the moon rise over a mountain is indescribable. So I won’t try.

16. Seeing a double rainbow that ends on the mountain across the lake takes the edge off another “surprise!” rainstorm in a major way.

17. There ARE worse kinds of pre-scan nightmares to have then had been seen before. Must be that fresh mountain air…sigh. But hey, sleep is overrated.

18. Hiking is awesome, especially if you find bright orange newts along the way and skip over rattlesnake holes. AND then slide off the trail down towards the cliff because your teen says “it’s the most awesome view EVER, we need a picture”, just as you remember exactly HOW height phobic and falling to a hideous death phobic you are.

But it was a great view. ; )

19. Sun chips never get old.

20. I miss my cyber friends when I am away from civilization for 2 weeks. A lot.

This is my “top of the head” list…at least everyone stayed healthy, and the kids had an awesome time. G did much better than usual on the food front, although the end of the week was tough emotionally for her. But overall she did great, Rosie and Andrew had non-stop fun, and we got to be not here for a bit.

But boy, am I glad to be back to a carpet and my own bed tonight! : )

This week is already insane (sigh), and next week are the Birthdays Galore here…so I’ll be back when I’m more awake…

I hope you all are well, I really have been thinking about people so much…

Peace,
Kristin

Tuesday, June 23, 2009 10:03 PM CDT

Hi, all…
Yes, I’m mixing it up, updating at night. I should know better…

Well, this weekend…sigh. Drove all the way out to Hershey on Friday afternoon, after opting to not go to the theme park. Dave & I have both been kind of stressed by life recently, just didn’t have the time to do theme park and then get Andrew to bed early at the hotel, etc. So we schlepped out to scenic Mechanicsburg, PA to a Holiday Inn, and settled in.

The room was nice, but Small…we had to wedge the cot in the one available spot, it was kind of comical (I got myself trapped in the corner), but we did eventually find a spot for everyone. The girls went swimming and Andrew went to hang out with his team. We managed to get everyone to sleep pretty early, a good thing since Andrew had to be ready to go by 7:15 a.m….

At 6 Dave looked out the door and said, “It’s raining…”

Now for anyone NOT on the east coast of the U.S., it has been raining for weeks. Literally a sogfest of near biblical proportions. My hydrangeas are seriously taking over the world, they are so happy, but everything else is sad and soggy and spindly and ugh. Saturday was supposed to have a chance of showers or thunderstorms, so we thought we’d get our 2 early games in…but the heavens opened, it was torrential for hours…

And the tournament got cancelled.

This was a significant bummer.

So we traveled home, very bedraggled and full of woe…we did have a nice impromptu visit with my aunt, who lives about 12 minutes from where the hotel was (I haven’t seen her in a few years, it was really nice to crash her Saturday & say hi to her & Uncle Bill!). Then we stopped at Cabela’s, which is always an experience. The highlight was seeing a guy vacuuming the animals on the giant mountain display…!

Sunday we were so befuddled…I had no plans for David for Father’s Day, we just sort of didn’t know what to do…Genna was thrilled, because we were once again free to go to Aunt Donna’s for our traditional Father’s Day fest. We did have a really nice time…thanks, Donna, for letting us last minute show up!

And so it goes…

I feel a bit like life is living me these days. Sorting out paperwork for various camps, school stuff, medical, whatever fills my brain. G has had some really, really challenging moments recently…and for whatever reason-- maybe the imminent scan?—I’m feeling a bit reminded of the underpinnings of our reality.

Grief is an odd bird. Every so often it glides across a day, just touching my thoughts with a shadow…it makes me so very tired.

Today I saw Genna on top of the swingset, trying to fix one of the swings (there are monkey bars across the top). My sister kind of gasped, “whoa, she can do that?”…and I had this wave of remembering…before…before G got sick, she was a monkey. I used to find her, as a toddler, on top of furniture, cabinets, you name it, she’d climb it. I once debated putting 2 gates across her bedroom door because she was such a Houdini…

This is the same girl who can’t skip now. Sports terrify her. She tries so hard, she’s gotten a lot better, and geez, I know she’s doing great, she can walk and play and run and I’m grateful…

But I’m mad, too. I’m mad for what G DID lose in all this. I love who she is…I just sometimes remember before…

My friend Heide made this amazing Wall of Courage honoring brain tumor kids…and seeing my girls’ pictures…God, my GIRLS’…S apostrophe, plural, how can this be? Anyway, Heide did a fabulous job…but I don’t want my girls to be brain tumor kids. I just want them to be kids.

Sorry…I know, I need some cheese with all this whine.

Yesterday was Angel Nora’s birthday (17) and today was Angel Erin’s birthday (5). My heart is so much with those families…and Heide’s Jessica’s birthday was 2 weeks ago…

I am so lucky…it’s like a smoothie sometimes, the feelings of “holy Toledo we are blessed” and “holy crap we are screwed” all in the same moment…I guess it would be one of those green smoothies involving things like wheat grass and cod liver oil and random noni leaves or something. Urp. Not strawberry.

THIS is why I don’t update at night! But tomorrow is so busy…

We are supposed to go to Lake George on Saturday, and I am so not ready. I’m just tired. And I need to start running AGAIN, this stupid rain has been a real downer. But today we had sun…

In one funny moment, I couldn’t locate the margarine in the fridge, so I asked Genna where it was (sometimes this is a rhetorical question, alas). She told me she was tempted, so she threw the whole stick in the garbage. While enterprising and showing admirable proactivity, I kind of needed the margarine…but it did make me smile.

Anyway, please think of my sister Em this weekend as she runs a half marathon with the NF team…and for Gabbie and her big fundraiser coming up (Ori, I will send you stuff, it may be in bits & pieces!), and for all our friends fighting, all our friends grieving. Next week is Sandra’s anniversary…and James’ birthday is coming up…
Please, please pray for all our bt friends.

Peace,
Kristin

Thursday, June 18, 2009 8:22 AM CDT

Hi, all…

So I blew the lovely Wednesday pattern I had going…so Happy Thursday!

I think New Jersey may have someone magically relocated itself to the Asian subcontinent, and a monsoon is coming through…we have had so much rain and gloom. I have been realizing anew just how much I need sunshine! My garden is looking like a rainforest, my basil and oregano are not really growing well, and our cherries…well, I’m going to have to go pick them today in the pouring rain lest they all be wasted. Bleh.

Everytime I put on sneakers to go try & run, the heavens open. Today I just conceded defeat. The only thing that keeps me moving (I so hate running) is thinking the names of all of our nf/bt/cancer friends…it’s like a little mantra, with much gasping and wishing I were better at moving fast! ; )

At least we’ve had a few nice moments this week. It’s hard for the kids when the weather is like this, everyone gets snipey, and it’s been too ugh to even just send them outside.

But ALL of the kids had friends to play with on Tuesday…yes, even Genna! Andrew & Rosie got invited places, so we invited someone to play with G (a girl that Genna loves to play with, someone who used to be in her school). This is the same little girl who, several years ago when we dropped Andrew off at church camp, came running up the hill yelling, “Genna! Genna!”…(yeah, I remember these things, they don’t happen much). G really enjoyed getting to play with Maddie, and generally a good time was had by all.

Andrew has been helping me with yard work, we are re-doing a slope in the back (was weeds, now will be rocks & garden-y, thanks to the rocks scrounged from Dave’s parents’ property). Unfortunately with the mud it’s been…well, muddy, obviously, but also way slippery, which is a bit dangerous with the heavier rocks. Rocks are way heavier than they appear.

We also got Genna’s correct report card (it inexplicably got screwed up again, which made G just barely this side of berserk). She did really well, all things considered. Rosie got straight As this year (ok, first grade, I know, but to see her say it with her hands…”I got all As like this” as she pantomimes a vertical line with her little fingers is about a 9.3 on the Camiolo Cute Scale, and thus merits mention). Genna already is plowing through her summer reading, despite my best efforts to have her pace herself.

I think our shed just floated by my window…

We did finally get the pool up and ready for swimming…and despite the average temp here of about 69 degrees, my kids have all been splashing about happily. This is a good thing.

And we saw fireflies for the first time this season the other day…when it rains they really don’t come out, so that one clear night was a blessing. Em’s friend came East with her for a visit, and she had never seen fireflies…I was inordinately tickled to get to catch one and show her…

One challenge with this weather is the “trapped inside” thing, but for G that becomes tough with the fridge. Really…tough. Poor kid tried to sneak bread WHILE I was standing in front of the fridge yesterday. Right after the appointment with her nice talking to lady. The cold air on my ankles kind of clued me in…alas.

I have unfortunately sort of started having ack moments regarding the scans. I thought I’d be better this time, last time or two the full scanxiety didn’t set in until a week or two before. We’re at just about a month out…egads, my stomach is turning, this should NOT be happening until like after vacation. Bleh. But as EVERY bt mom/dad knows (or nf mom/dad, for that matter), and that IS a universal positive, EVERY one of them knows that the weeks before a scan are generally punctuated by weird moments, pains parents don’t really want to know about, and mini-yikes. We’ve only had 2 thus far, but that’s enough. This far in, my tipping point is not hard to reach.

But it is what it is, I just have to keep moving.

And I have to stop opening the insurance/hospital things, my best efforts to stay brunette cannot withstand that kind of “oh, heebie jeebie”…very…large…numbers. Did you know that neuro-psych testing costs $2780? No, me neither. Last time I didn’t hear about it…(insurance just took care of it)…Dave assures me these things work out, but Heebie and Jeebie are the words that come to mind (at least in this family friendly forum).

Better run…G is off to a birthday party at 1, then her end of year art lesson pool party (which I think may have morphed into a movie party, based on the deer crew team working out in my yard)…then we are supposed to be off to Hershey tomorrow for a baseball tournament. We had the brilliant idea to go to Hersheypark before the tourney since we were all the way out there…but now we really just don’t feel like going, logistically it’s so yikes. Andrew’s first game Saturday is at 8 a.m., then another at 10:15…at least getting to Saturday church shouldn’t be a problem. Then they have a few more games Sunday if they do well enough Saturday. I have to call my aunt today, she lives right by our hotel, I think…I would love to see her (and my uncle) if we could.

So we have to make cookies for pool/movie party, pack for Hershey, and clean the guest room/bathroom for my sister from L.A. coming in tomorrow (while we’re in PA). And then Lake George is on the horizon…

A couple of shout outs…Emily is running a half marathon for NF NEXT weekend in Seattle (I think?)…at last check she was $15 from her goal…a measly $15…
Her link is http://www.active.com/donate/nfseattle2009/EAppert

And Gabbie’s big event in July is fast upon us! Her mom is already going green (hair!) at the event…but if she raised $10k she is going to shave her head. Ok, so Super and Mom are the words I’m thinking now…check out www.caringbridge.org/visit/gabriellehughes to see what’s up with all that.

Must do something here…maybe build an ark? Sigh.

Peace out, all…
Kristin

Wednesday, June 10, 2009 9:11 AM CDT

Hi, all…

This Wednesday thing is becoming a routine, I guess!

Today is officially the Last Day of School for my girls. Andrew went back down to school today…I guess once you’ve graduated, going to school is cool? Everyone is excited and woohoo.

I need some sunshine…but otherwise, I’m glad to have school be over. I need to get a solid plan for the kids this summer that does not involve 6-8 a.m. cartoon watching followed by 9-whenever I force him to turn it off ESPN watching! ; ) But already, the summer calendar is SCARY. Mostly good…but SCARY busy!

Andrew’s graduation was really nice, the party afterwards was great, in spite of the rainy weather. I still can’t believe he’s that old…and heck, he’s quite young for his class. Now I’m trying to figure out what he’ll be doing this summer, he actually needs a plan more than my girls, since he has daily delusions of grandeur. He will do a week or two of basketball camp (which is just icing for him), and maybe a bit of baseball…we are finishing the baseball spring league, and then the summer league starts right away, but at least, aside from a big tournament Father’s Day weekend in Hershey, PA, we will have our weekends back.

I’m hoping I can push Andrew to really learn to type this summer, so high school will be a speck easier. And the boy needs some serious study skills work…Let the Battle Begin!

Genna and Rosie are finishing up dance this week; we had Rosie’s last softball game (she was so bummed the season is over!), and Genna’s last art class is next week. Things are winding down…

And then the 27th we’re off to Lake George! Yikes!

Do you know how hard it is to find an inflatable alligator to replace the one Someone ran into a Canoe last year? I refuse to spend $25 on something I KNOW I got for $12 several years ago…but Dave is strangely attached to the idea of replacing the alligator. ; )

Big news du jour: well, the ugh is that I scheduled the scans for July 21. We had a lot of trouble finding a day, because of vacation and birthdays…so the 21st it is (Dave can only take one day off, so we will do the marathon day again and I will have to have G’s speech evaluated another day). Of course as soon as I scheduled this (which is always a bit of a song and dance, the scheduling ladies at CHOP are so nice), I realized if Genna has a shunt problem her birthday (which is July 24) will be screwed. Son of a frimfram…

She’s been planning a luau since April.

So if it’s not too uncomfortable, please start crossing your fingers NOW! : )

The other big news: I will be working very part time in the fall. I am glad but a bit YIKES in the biggest font imaginable. Of course the corollary to this is now I’m even MORE worried about scans gone awry…but I really need to work, I know many, many people who balance work & treatment, so I won’t go building that bridge until I get to the river…or something like that. ANYWAY, I’ll be teaching a 12th grade Modern History class at my kids’ school. I’ve been looking around for a few months, teaching jobs are very tough to come by around here (especially if you teach English & History and not math or chemistry and you’ve been stay at home mom for 10 years), so I figure if this is the door that opened, it’s the right one.

Of course this is a class that’s been in ongoing development over the last couple of years (in a weird small world kind of way, my dad taught it, and I have worked with him on the course structure, etc.)…so it’s still got a lot of room for me to do whatever.

I need to get in touch with my Inner Coherent Person, and focus, and read a ton this summer…but I am excited, I think this class is really a great challenge for the students (and me) and hopefully it will go well. And maybe from this I can eventually get a bit more work…we’ll see.

I’m kind of not wanting to have to find acceptable teacher clothes…bleh. But I’ll love my jeans & t-shirts more if I’m having to look presentable every day!

So things are hopping at the Casa Camiolo. G has been VERY Intense the last few days, in that respect I am so glad school is OVER. I actually had to apologize for being mean yesterday, she was making me crazy over bringing brownies to school . For G, being told “hey, anyone who wants to bring in a treat for the end of the year party can do that!” translates to “Humanity as We Know It Will Perish If You, and Only You, Do Not Bake Brownies While Your Mother is In the Middle of 27 Other Things”. But we got through it…and I made her leave a few brownies here for me, er…us!...

And THEN ran off to the end of the year concert, which was fantastic. Really. I’m normally not like “woohoo! A school concert!”…but this was great, Miss M outdid herself, the kids sounded great, they remembered their little choreography (old school friends…the 5th grade did “Hats”, and G wore this pimped out pink sequined cowboy hat she mooched off Kris Blumberg after the Coffeehouse a few years back), Genna only yawned 3 times during her song, and everyone really wowed the whole audience. I am so proud of my girls (who LOVE music class) and Miss M, who is going off to another place next year (ALAS!!). Congrats, all…

I am at 2.5 hours and counting until everyone is home. I did not run today (just too tired), but I exercised…I realized the mental battle of running is tough for me, I need another human being pushing me with exercise, which is why I can do the video stuff. But I MUST run…need sunshine…Andrew and I started building a natural rock area on a slope behind our house with all the rocks we scrounged from my in-laws property before they moved…but it’s SO muddy in our yard, it’s a challenge, and I figure that counts as exercise, too. We have a lot more to do…

And I’m sure you all do, too! Thanks for pulling for us…and please keep G in your prayers as we start summer, the food thing is a real challenge when she’s here all day, and she gets very anxious when her routine is off. I have some ideas…but if you can pray for her, that would be great.

And for all of our friends battling on…we just so desperately need a cure.

Peace,
Kristin, who I swear is a decent English teacher even though I consciously start paragraphs with “and” and abuse ellipses like there’s no tomorrow…ack, I can’t help myself! ; )

Wednesday, June 3, 2009 9:00 AM CDT

Hi, all…
Happy Wednesday, well, again!

I know I’ve been bad about updating…I feel like I have hardly been home one second in the last week and a half.

Tonight: my first baby graduates from eighth grade.

Which is bizarre, since I am like 24 years old, right? ; )

Of course when he tried on his dress shirt yesterday, the sleeves were too short. We may just have him roll up the sleeves, what can we do? The boy seriously grows about a quarter inch a day, I think. Actually, he managed to get a disciplinary letter on his second to last day of school because he was being a mess…we were taking bets on what he’d get in trouble for, I think I can live with “shirt not tucked in”…it ain’t defiant slobbiness (although he likes that!), it’s just the darn uniform shirt is too small!

He thought it was pretty funny, which I suppose is a healthy way to look at it!

Anyway, tonight is the big graduation, then a little party at school and an “after party” at one family’s house for the parents & grads. I think Andrew is pretty stoked about the whole thing. I haven’t had time to feel anything about it…

Except a little old, and sad, and feeling like I didn’t do enough good mom stuff when he was little.

So anyway, congrats to Andrew…

For my girls, we are in the final stretch. School ends next Wednesday. I really, really need to have a plan for summer. Genna needs a schedule. I feel like already the summer is full…hard to believe, but it’s only a few weeks until we go to Lake George!! Hooray…
But then the week after will likely be scan week, if I can get off the Horse Named Denial and schedule the darn scans.

The neuropsych doc we saw last week encouraged me to have G’s speech evaluated at CHOP, she has pretty significant dysarthria (she gloobs her words into one giant word)…so I have to see if we can put everything all at once.

I’ve been reading up on the cognitive remediation thing the doc recommended, I need to pursue that, I think. Reading the report again, I am a bit sickened by the fact that some of G’s issues are results of her biopsy back in 2006. We had so much good news in that report, I don’t want to knock that…but it’s sickening to think we created at least some of this…which is a veritable torrent under the bridge, I KNOW, but some days my head just goes there. My head ignores the giant “KEEP OUT, THIS MEANS YOU” signs and just goes Right There…around the hooray to the ever present sigh. Bleh.

Like “polish off the last of the Ghirardelli chocolate chips” bleh. Whatever.

Sorry, I am a tad overwhelmed by the juggling here. And certain portions of my house are a nightmare, like call a cable show to come in and document my mess nightmare. I’m hoping I can get the rugs cleaned in the next week, but of course that involves getting EVERYTHING picked up & sorted in the dirty rug rooms. Kind of silly, because we have a rug cleaner, so I can do one room at a time…but I would like to just blitzkrieg the whole thing! : )

So we are barreling towards summer. G’s anxiety has been a bit yikes, but transitions are always like that for her. I’m trying (unsuccessfully) to be mellow & patient (people who know me in real life can now stop choking with laughter, really, I’m trying). I hope we can get the pool set up in the next few days and then make a concerted effort to just BE, and not DO all the time.

This is not something I am particularly successful at. Dave is worse. But we really need to take some time, I think.

Sorry to be a bit bleh. I am tired….

In sillier news, yesterday I went for my first run of the year. A dinky 2+ mile jog/walk, but a start to my “get the ample backside moving so I can run for a cure in September”. About half way through…it started to rain. RAIN?!? Do you think God is trying to tell me, Oh Slow Girl Who Wears The Bright Yellow NF Shirt Only So She Won’t Get Run Over By An Eighteen Wheeler or Landscaper Truck (Because we Know She Looks Like a Sickly Fish When She Wears Yellow But She Really Fears Eighteen Wheelers And Landscaper Trucks) Who Really Isn’t Digging All This Running Because Certain Muscles Apparently are NEVER Used In Her Daily Workouts But Feels Like She Needs to Do More For Her Girls to Have a Future…maybe should stick to cookies? ; ) It was kind of funny, even in the moment. What can you do but laugh?

Wasn’t laughing so much when I tried to do a mini-workout today. OW!

So a happy Wednesday to you all…I have to put together A’s graduation gift (a cool idea we had…can’t tell yet!), and figure out what else I need to do here before the Big Shindiggity tonight. But please, if you have a second, pray for my G as we move into summer. She is having a bit of a hard time with things (asked the other day if she weighed more than I do…sigh), and I know the transition will be hard for all of us! And for all our friends fighting for life & working for a cure…

www.caringbridge.org/visit/gabriellehughes for Pose for a Cure

In an earlier journal I have Em’s page for her ½ Marathon for NF…

And always, www.yetifunk.com to see what the yeti is up to for the summer…

The 5 year mark is looming on the horizon for us at the end of the summer….and it’s weighing on me. Let’s pray/work/sing/run/eat/talk for a cure…for all our bt & nf friends, ok? It may not be Brain Tumor or NF awareness month anymore, but for folks in those worlds…well, we get to be aware all 12 months, and I am realizing (Again, I know) how stinky that is.

Peace out, all—
Kristin

Wednesday, May 27, 2009 2:27 PM CDT

Hi, all…

Very tired, just back from Philly after a marathon few days of running and running and running…

Andrew’s baseball tournament went well…they made it to the quarterfinals, then the semis…which they won in an epic 5 extra innings game…we had nothing left after those 11 innings!...and then they lost in the championship, but really, we were so proud of them after that semi-game, it didn’t matter (to the moms at least!—Andrew was less amused).

7 games, 3 days…yikes. Weirdest play: Andrew struck out, but the catcher dropped the ball...ultimately it was a strike out/double/RBI after a few errors and a lot of hustle. Who knew you could get to 2nd on a strikeout? : )

Sunday the girls & I played hooky from baseball and went to Uncle Mark’s graduation party, which was a lot of fun.

And Monday…my sweetie Rosebud turned 7. I felt really bad that her whole day was at the ballfield, but she seemed to have a good time with the other kids, drawing tattoos on each other…and she got McDonald’s for lunch, which is an unheard of treat…and then guilt ice cream cake from Carvel. We did an official family birthday thing yesterday with real mom-made cake.

I so love my Rosie. She truly is my delight.

She told me she didn’t feel different turning 7, she still felt six. And at 6, she still felt 5, but at 5, she DID feel older than 4 because she talked like a little kid at 4, but then she was 5…! : )

Yesterday was a bit rough on the mom-mental front. I moved a fair amount of mulch, but that didn’t even help. Oh well.

Today…off to CHOP downtown at 7 a.m. to meet with Dr. Armstrong about the neuropsych results. I was a little concerned since the office is in a different part of Philly than the hospital, but I got there in about 2.5 hours. I took a moment to be agog, remembering the days the thought of driving into a city alone would have put me in panic mode. Hmmm….

Quick report: VERY VERY GOOD!!!!!!!!!!

I couldn’t believe it, in most areas G is stable or improved, only decline in a few spots…none of which were really a surprise. I was so relieved, and really happy to hear this…and I do truly feel empowered knowing that a) one of the areas she needs help with CAN be remediated in a pretty straightforward way b) we can map out ways to help her succeed in some of the other areas, I think c) the doc thought maybe I could get training in the one system that might help G, which was mildly affirming (been feeling a bit mud puddle recently) d) the doc was VERY happy with how well G is doing.

Certain things we just have to live with (Captain Obvious is apparently here to stay, but at least now I can tell big brother that Captain Obvious is a neurological problem, not a little sister is being annoying problem), certain areas will get more difficult as Genna progresses through school….but overall the report was much better than I anticipated.

So now I have research & work to do…

And a bit of a headache, if I am going to be honest about things! ; )

G & I are off to see Miss Nora the Happy Talking Lady today, and then tomorrow I have to go to a memorial for my great Aunt, and then Friday is something I’m sure…Saturday off to the soup kitchen, Sunday baseball, Monday eye check for me (disintegrating glasses! Eyes are fine) and lunch duty…Wednesday Andrew graduates (Ack! Still Must Buy Shoes!)…I am so tired.

But really, today played out better than I hoped for, now I have to translate the results for G’s teachers, which is always an adventure.

Please, please pray for all of our friends…and always for a cure for brain tumors & NF. The checkout lady at Costco yesterday saw my giant “I’m Wearing Gray for my DAUGHTER “ pin, and actually started reading “May is…” and then her voice trailed off…it was one of those moments, those moments I’ve gotten out of since G’s been off treatment and we can be happily obscure again…I know, why else would I have a 17” pin on my bag (well, almost that big) except to raise awareness? But still…

Being aware of brain tumors hurts.

Ok, bus will be here in 3 minutes, better run…

Peace,
Kristin

Friday, May 22, 2009 3:04 PM CDT

Hi, all…

I really and truly have 10 minutes, so I have to be speedy here…but another week has slipped by…

We just finished Miss Rosie’s 7th Birthday Party…the actual day is Monday, but we have a baseball tournament in Red Bank all weekend. Sunday the girls and I are going to Uncle Mark’s grad school graduation party, but we will pretty much be all baseball all the time come tomorrow at 8:30 (which means we have to leave before 7, UGH).

Anyway, Rosie’s party was cute and nice and is done, which may be the best part! (shhh!)

G is off to dance in a minute, then Rosie has softball…somehow the end of the school year is still like a freight train running at full steam. Andrew graduates in a week & a half (note to self: must get shoes, he lost one on the bus…don’t ask), then the girls have a few more days…then more action, more busy…

Sitting outside after Rosie’s party today, I wished I could just SIT for a full day in my yard, just looking at the flowers and feeling the breeze…sigh.

G has been a bit better as the week progressed; no more “why do I have to have a brain tumor, Mom?” questions that make me cry.

She pulled a deer tick off her ear the other day…ARGH!! I slathered on some Neosporin and marked the calendar. Fricka Fracka…we’ve been finding big ticks EVERYWHERE, they are really bad this year…which makes me feel creepy crawly all the time!

Ew. Like now….heebie jeebie…

Big excitement this week was the end of American Idol. Genna LOVES American Idol, and I have to say, David Cook is The Man. Listening to the song he sang a few more times…well, he knows. He knows bt world, that’s all I can say. Thank you, David Cook.

Not much to report, really. G has really been trying on the food front, the weekend was pretty depressing (just stuff) and I feel a bit like I’m drowning in little life details…need to call about Confirmation retreat for Andrew (same day we go to Philly for the NF team stuff before the Distance Run…ugh), need to fill out basketball camp stuff, need to get the monster bags of clothes to the clothing drop and clean the rugs and and and…

My brain is full.

Trying to enjoy moments…trying to figure out when to schedule the next scan…trying to keep my computer running…

Hoping to stop and smell a flower or something…

I did have a nice conversation with Joel West yesterday. Interesting things in the works, Matthew West is also The Man (Joel too, in the not-public way). People caring makes such a difference…

I didn’t even have the oomph to exercise today, bleh. Won’t have time tomorrow…

Anyway, have to run G to dance, and break up the giggly game of Littlest Pet Shop being played with a toy from the party…thanks for thinking of us all. Have a great weekend (I wish I could just chill), and remember to thank a veteran if you know one.

Every year on Memorial Day my dad goes at 6 a.m. to the cemetery an hour away where my grandfather is buried, and he plays Taps on his cornet…I wish I could adequately thank all the men & women who serve our country…

Please pray for our friends battling…for a cure. We so need a cure.

Peace,
Kristin

Friday, May 15, 2009 9:28 AM CDT

Hi, all…

Happy Friday…and I’m sorry for the long delay in updates, we’ve just been crazy busy.

I hope everyone had a nice Mother’s Day; ours was mostly baseball. I like baseball…did not really want to spend the ENTIRE day sitting on bleachers, and poor Rosie got wildly sunburned with 50 sunblock ON, I felt horrible for her. Andrew also got terribly sunburned, but that is because he is a stubborn teen. Nothing nice to say about that. (!)

Let’s see…a quick rundown on the Week According to G…

The IEP meeting on Monday went astoundingly well. For the first time that I recall (I may be wrong) we actually had this year’s teacher & next year’s teacher there…which was VERY helpful. I thought we’d do the quickie 15 minute review I usually get, but the new Child Study Team lady talked with all of us for nearly an hour and a half! Next year’s teacher is very, very eager to help Genna however she can…and she presented specific examples of things she’s already been thinking of (the science text is due to be changed, and she was noting all the choices that came with a CD version of the text so G could have help if the print was too small…hello? Nice!). I was very encouraged.

Only once did G’s teacher now bring up something I thought was not appropriate for this meeting, and something that we had talked about months ago and I thought was resolved. Apparently he just didn’t tell me it wasn’t…I pointed out that my psychic powers are not as attuned as they should be, and that maybe the difficulty he was speaking of had a physiological cause (I think it does)…sigh…But I CAN”T HELP IF I DON’T KNOW THERE’S A PROBLEM!!

But nobody got emotional (even when I brought up psychic powers), everyone was very positive and generally I have some hope for next year.

Now if I can only convince Genna it will be good…she again was so sad last night about moving to 6th grade, she is worried sick about it. Not sure what’s cooking…

Monday’s insanity continued with lunch duty (which, since it was sunny & 70 degrees after a week of rain was actually Not Horrible! ), then Rosie had dance after school…race to softball…race to Uncle Stephen’s graduation “let’s have some quick dessert as a family” moment…phew!

Rosie has been having terrible allergies (I hope…headaches YIKES, but with a sore throat)…I almost kept her home Tuesday, but she didn’t want to miss gym…of course AFTER the bus pulled up the street. Back to school…strangely, later that afternoon she spiked a fever…101.4 out of nowhere…then was fine by 9 pm. Weird!

Genna also had her well visit doc check on Tuesday. Of course I thought I was finally getting her back on track, we could get up to date on everything, blah blah blah, I’d be ahead of the game for 6th grade (state law requires a physical)…but apparently certain vaccinations she has to be 11 to get! ARGH!! So on July 27th or so (the Monday AFTER her 11th birthday) we’ll be going back to get the state mandated vaccines for 6th grade. And not BECAUSE they’re state mandated, but because I think preventing infectious disease in kids is smart and the moral thing to do.

Don’t worry, I’m just eyeing the soapbox, I won’t get on it. Must…fight…urge…to…present…scientific facts…

Ok, I think the moment is past! ; )

Genna did get her chicken pox booster which is critical before camp. Chicken Pox can be dangerous for any child, but in immuno compromised kids like the ones at Ronald McDonald Camp it can be deadly. G was a trooper. She is officially 54 ¼ inches tall…the weight is a problem, but the doc was nice to us.

The food front is challenging as ever, more so when G is so worried about life. I hate seeing her as sad as she’s been.

BUT, in a happier note for her (this is a busy week for Genna!), she had a class trip yesterday, a long-awaited class trip to Jockey Hollow, site of George Washington’s winter encampment in the winter of 1779-1780. The kids saw a wonderful presentation about the encampment, toured the farmhouse where Maj. General Arthur St. Clair stayed (Washington stayed at the Ford Mansion in Morristown, about 5 miles away), did musket drills with wooden muskets, and generally had a jolly time.

Genna DESPERATELY wanted me to come on this trip. After my not so far distant throw down with her teacher I wasn’t sure, but I decided to go, and everything was fine. I interned at Jockey Hollow in college (yes, I was one of those people in the costume who sits and looks authentic except for her modern glasses because when I tried to do days without glasses I was a hazard and I was not SO committed to re-enactment that I could fork over $200 for period spectacles. Yes, I priced them out, but I WAS NOT so committed…sigh. Ok, I was, I just didn’t have the $200! : ) ). ANYWAY, it was fun to go back there, and I’m glad G had a good day…even if some of the social stuff I saw bummed me out. 

And then she ran to art class…

And then Dave as a surprise (ish, he told me Wednesday night) took me to see 1776! at the Paper Mill Playhouse, our local fabulous regional theater (they have a lot of Broadway folks…kind of like Goodspeed Opera House in Connecticut). I was SO tired, but it was a wonderful production, laugh out loud funny and inspiring and interesting all at the same time. (It’s a musical about the writing of the Declaration of Independence).

Now I shall be singing “Someone Better Open Up a Window! No! No! Too Many Flies!” from the opening song all day (it was brutally hot in Philly in the summer of 1776, the Congress suffered through LONG days of endless arguments in stifling heat). But the funniest part…I WAS singing that yesterday before the show (it gets stuck in your head)…and since we share kind of a 2 family house with my parents, my dad must have subconsciously heard me, because later I could distantly hear HIM singing, “Someone better open up a window….” Heehee!

I know this is an epic, and I’m sorry. I really shouldn’t go so long on a busy week. I’ve had intermittent computer issues (like it won’t go on at all) all week…not connection problems, actual hardware problems. But the next week or so should be quieter…I hope!

Tomorrow we are going to get our Mother’s Day flowers (I like to wait until after May 15 because of the danger of a late frost), and hopefully do MUCHO yard work. I see blue sky outside right now…woohoo! (yesterday was rainy).

Please pray for so many of our friends who are battling on….my heart is so full for so many people…for Emma, Gabbie, Drew, Joey, (their dad, Matt), Carly, Katsie, Andrew S., Luke, Lexie, Lauren, Charlotte (hooray for a good scan!), Devon, Steven, …SO MANY more who are mid-fight, or past treatment and dealing with life…. I’m wearing my gray again today (the softball moms may think I only ever wear this shirt…which would mean they’re aware, so that’s good, right?!)…too many kids need this cure.

I am going to read Dave’s magazines about running (which yes, I stopped in October…but I’ve been really committed to exercising, I hope to be a ninja Very soon)…I think I may need to try and run in September…on principle, not on desire to run, if that makes sense. We’ll see…

3.5 years ago when we first did Race for Hope, I didn’t own sneakers. And now…

I don’t want to waste our time of stability, I want to move Forward…it’s so easy to get stuck in the quagmire of yikes that happens when treatment stops and one has time to THINK about what the he** just happened her?…I live right by the edge of the quagmire, I need to keep trying to step forward. So if anyone is feeling like they want a challenge at a Ridiculously Slow Pace, let me know…and maybe we can limp together in Philly in September with the NF team…

And if you have an extra thought, can you pray that G can have some less worry? My heart is so sad for her when she is so sad…

Peace,
Kristin Who, On Reading the last Few Paragraphs, May Not Be Able to Convince People She Is Not Delusional.

p.s. Ori is going Green…literally, not environmentally…check out www.caringbridge.org/visit/gabriellehughes to see how YOU can be a part of the Mayhem for a CURE!!!

AND Yetifunk is running again…check out www.yetifunk.com to see where John will be running this summer for CTF!!!

And Emily is running a half marathon in Seattle for CTF in June (ok, so my whole family is going to shame me into getting off my extremely ample backside!)…her link is…
http://www.active.com/donate/nfseattle2009/EAppert

Friday, May 8, 2009 7:55 AM CDT

Hi, all…

I am utterly procrastinating about exercise, I am tired and still sore from Wednesday’s workout (it is somewhat demoralizing to have Every new workout make me sore in new creative places…ow!), but IT IS FINALLY SUNNY!!! After a week of rain, sun is seriously medicinal.

The Camiolo crew rocked Philly yesterday. Short story:

Rosie: rock solid stable, near perfect vision!

Genna: stable in good eye…IMPROVED in her bad eye! Say what, Willis?

Seriously, it was a bit better. Now I know there have been fluctuations in other vision tests, particularly in the color plates (a contrast test which G always does abysmally at), so I have an e-mail to the doc to double check how woohoo I should be. And to ask…um…WHY?

This is such complicated stuff.

In a really interesting note, the fellow who did the primary exam of the girls is running a research study because he has a theory about the thickness of the optic nerve & it’s correlation to vision loss. Kind of simply stated, his hypothesis is that if you can determine that the optic nerve is losing thickness, doctors may be able to start treatment on an NF/og kid BEFORE there is vision loss…ie, the nerve thins FIRST. There is a new laser camera tool used in glaucoma patients that can measure the thickness of the nerve in microns (as opposed to the millimeters seen in MRI imaging). It was intriguing stuff…

And INSANELY hopeful/refreshing to see someone passionately working on NF optic glioma stuff. Will it help my girls? No, obviously it’s too late, but Genna particularly is a perfect person for him to study, because she has had vision loss.

Once he mentioned that study participants would get a Barnes & Noble gift card, Genna practically started jumping up and down…”we will do it!”…the head doc pointed out that the Camiolos were definitely the most enthusiastic study participants! ; )

So we stayed an extra hour or so and both girls did visual acuity tests & this funky camera thing, which was hard for them but good. Both even submitted to getting eye drops, which they had avoided in the regular exam…I am really proud of them both, and so grateful for the opportunity to maybe actually Help someone someday.

The last time we participated in a study it was a chemo thing & G flunked out fast. This was a much less drama kind of thing yesterday, which is what we like! : )

You know it’s a good day when the doc says, “this is a boring clinic visit! That’s what we like here, boring visits!” …AMEN.
So anyway, it was a long day…pushing the appointment later was a great idea, made the morning less hideous…driving home was a bit nasty, torrential rain. But we are good on that front for 6 months. AND I got further confirmation of one of G’s difficulties seeing, the whole contrast issue, through some of the additional testing Dr. A did. This needs to be reiterated at G’s IEP meeting.

So while I need to go move my ample posterior into exercise mode, thanks for all the good thoughts…now that we’re past this I kind of have to at least schedule the scans for the summer…but not today.

It’s sunny. : )

Please, too, if anyone can help out Gabbie’s supermom Ori with her fundraiser, that would be awesome. www.caringbridge.org/visit/gabriellehughes . I will get Emily’s link for her half marathon up…

I did start my promised research the other day. Major mistake. It started ok…there isn’t much out there on hypothalamic eating stuff, although I am now slogging through a paper on signaling pathways in the hypothalamus, which did give me a few intriguing questions for our neuro-onc, particularly about brainstem involvement in appetite regulation and satiety. But then I looked into a few other weird things I’ve noticed recently…and then found out NF kids are more prone to one of my great fears, medically…and that risk increases in direct correlation to the amount of chemo a kid’s had…

And therein lies the road to madness. Or at least nearly losing my lunch.

So I am staying away from oncological research right now, it just does NOT end well. I can only go onto the med sites if I’m reading about processing and such. Sigh.

Hopelessness is unacceptable. I don’t want to go there again.

So no more weird tumor reading for me, for a while at least. I hate that I can’t push through it…but when I do, I am a wreck for my kids, which isn’t good for anyone.

Alright, I so have to get moving on that exercise.
Peace out, all…let’s hope for a cure.
Peace,
K

p.s. happy Mother’s day, all…we have such a busy weekend, I doubt I’ll be back here.

Monday, May 4, 2009 10:53 AM CDT

Hi, all…
Happy Monday.

I am already having some EXTREME computer issues (like the screen goes black and there’s a beeping reminiscent of a nuclear sub alarm)…hopefully this will work.

Just wanted to say that my girls were FABULOUS in their dance recital. The actual recital was akin to War and Peace in length (certain portions of my anatomy fossilized), but it was nice. Rosie was beyond so adorable, she was so into her song (Seasons of Love…this is where I first REALLY heard it, and then decided to use it as our Coffeehouse opener). Her hair mostly stayed put, and she just smiled and glowed on stage. Genna did fantastically well, too…she pretty much stayed with everyone, she did NOT stick her tongue out of her mouth (her “deep thought” expression, inherited from certain relatives I shall not name!), she smiled and smiled and just made me so flippin’ proud I could hardly stand it.

No one would know, to see her up there, that she has massive brain tumors.

No one would know that she can’t always balance super great, or that she runs people over on the left, sometimes.

No one would know that she had no reflexes in her legs and feet for 3 years.

No one would know she was anything other than a kid who likes to dance…not the best in the class, not the most graceful, but her happiness just glowed through her skips and plies and her very methodically pointed toe.

Thanks to Miss J, who is a wonder worker in getting G to do this. I really can’t express what this meant to our family who all came out for this. It’s like a little miracle.

And a lot of times in NF/BT world, the little miracles are all we get, so we NEVER let one go by without a huzzah.

In this case the huzzah included pizza, so Genna and Rosie were even MORE exceedingly happy at the end of the night.

And here’s the Funny Genna-ism of the Year: As we come in from the recital, I turned on the Kentucky Derby. I know NOTHING about horse racing, but I enjoy watching the Triple Crown races. The guy yells, “And they’re off”…G sits down right in front of the tv, and says, “are those COWS??” …ok, so maybe her eyes still don’t work so great…I did NOT fall off my chair laughing, she was so serious…

Imagine the Kentucky Derby run with Cows.

You’re welcome! ; )

Baseball yesterday got rained out (ugh), and the day was kind of gloomy. I thought a lot about our friends racing for hope in Washington, D.C….and I heard today that David Cook, last year’s American Idol winner, lost his brother to a brain tumor on Saturday…and David STILL showed up at the race…he is The Man, really.

Now that the recital is done, I feel like we’re starting to see the end of school and such. Of course I sort of forgot (or chose to not remember) that the girls both have a Philly eyeball check on Thursday (urp); next Monday is G’s IEP meeting, and I have lunch duty (double urp), and then that next Thursday I am accompanying G’s class on a field trip to Jockey Hollow, the historic site I interned at in college…should be fun. I’m equally as glamorous as I was at 21 when I worked there, (all the same people are there!), good thing life hasn’t beaten me down or anything…(yeah, triple urp).

G has been having a brutal time with food, we see her counselor again this week. I am starting a new project, it’s called Go On PubMed & MedScape and Print Out Every Study/Trial/Coherent Thought about Hypothalamic Issues in Brain Tumor Kids That Has Ever Been Written and Then Contact Those Doctors and Beg for Answers. I’ve done bits of this in the past, but I feel like I need to make a concerted effort to know exactly everything that is out there. I need to do this for plexiform stuff, too. I know that shoe is always in orbit, waiting to drop. I want to be ready.

I have been enjoying stability too much…ok, that sounds wrong, you really CAN’T enjoy it too much…but I’ve been less aggressive in my research, and that’s not acceptable.

And I realized in the last week or so that I have finally crossed whatever invisible line it is and I have to exercise. I won’t say I love it, but I do find it satisfying. I hope to actually be a ninja by the summer. I should start running again, I have to make a plan.

Genna and Rosie are into full bore party planning…Rosie’s birthday is in 3 weeks (!!!!ack, my baby will be SEVEN????) and G’s is in, um, 2.5 months, but they are all about themes and games and excitement. Rosie has a list scrawled in purple pencil on a piece of paper…she wants a “circus” or “carnival” party…we brainstormed yesterday, I gave them each a budget (read that idea in Familyfun…granted, we are bargain party kind of people, but this gets the kids involved), we looked at Oriental Trading, had some fun. We are also trying to get their room in order…I spent about 6 hours over the weekend emptying their closet…I think we have about80% of the tchotchke dealt with, now onto the clothes in multiple sizes…sigh.

I just need to get things together.

AND I need a new coffeepot, our Farberware was defective or something and shorted out…thank God for the French press I’ve had for 14 years (wedding gift from Carl & Dan, in case anyone wondered…see, packratiage sometimes is handy)…but I need a big pot again. The French press is some fork-ish coffee (like, you need to eat it with a fork). I like it that way, my stomach isn’t so thrilled.

So if anyone has an extra good thought for us on Thursday, please send it along. Everyone SEEMS stable…but even saying that seems like “cue the menacing music!”. Sigh. And I REALLY don’t feel like driving to Philly.

It’s not too late, May is still NF & Brain Tumor Awareness month…for bt gear visit www.wallofcourage.com . I do still have yeti stuff up on Cafepress somewhere, I may do some new stuff eventually…I think the Yeti will be running again this summer, stay tuned!

And if I ever remember I’ll get Emily’s link up…she’s running her FIRST HALF MARATHON EVER for the NF Endurance Team & my girls in June…

Ok, must stop avoiding Monday and the extreme lack of milk in this house, and go deal with life. Try not to miss the small miracles today, ok?

Peace,
K

Wednesday, April 29, 2009 10:18 AM CDT

Hey, all.

Happy Wednesday.

We are chugging through here…the bookathon officially is done today, thank GOD!!! Genna is a tad obsessive about this (ok, endlessly maddeningly obsessive), so I’m very glad it’s done. She & Rosie together raised nearly $400 for their school! I am proud of their efforts, just wish G wouldn’t be So Intense about collecting money, etc.

If she can channel this drive someday, she Will Be A Force To Be Reckoned With.

Dave’s birthday ended up being really nice; just with our immediate family (the ones who could come) we had about 25 people. Saturday we went out to dinner with friends, which was alarmingly fun. I miss that kind of thing. And I tried Real Sushi for the first time and totally loved it. Really good. I got Dave to try the King Crab legs, but he wouldn’t go for the sushi. Maybe at 41? ; )

Sunday was a whirlwind here…2 little girls to get dance pictures of…Rosie was insanely cute in her tutu, I did manage to contain her hair. One of the dance mom’s showed me this invention that helps pop the kid’s hair right into a bun…I need to go find one, I am Way, way not skilled with hair (which is why we are always kind of wild here, at least on the hair front). Genna just needed a tidy ponytail, parted to the left side…which I managed. Thankfully it wasn’t the right…her hair has grown in beautifully, but she does have a fine white line from forehead to ear…I just had to pull a little hair over it and she was good. The child has a Mountain of hair.

Funny, how something we so take for granted is such a sign of how far we’ve come.

I have to get pics of G on Friday at the dress rehearsal, I missed her on Sunday…but she looks pretty cute too…a unitard with fringe…heehee. It is very exotic, and thank God it fits. I had to adjust it some (legs too long, fringe too long), but now it’s fine.

Our only girl drama this weekend was my poor Rosie…we dragged out the slip n’ slide, the weather was insanely hot the last few days. Of course 2 seconds into sliding Rosie hurt herself. I wish I knew what she did…I literally was taking video, stopped to watch what I had recorded, and while watching that she somehow slid wrong. She hurt her back…like crying and crying hurt…and then didn’t want to play again (!!), told me her ribs hurt (well, geographically speaking)…finally went back out, slid again and was hysterical, crying…it freaked me out.

Of course I had instant visions of disaster, paralysis, doom. But some ice and advil helped…she was in a lot of pain at bedtime, but by morning she was a bit better, so I figured we were ok to not go to the doctor. She was moving ok and everything. I wish my brain didn’t always jump to ohmyGodohmyGod in these moments. Apparently my threshold for yikes is very, very low.

But all’s well that ends well. Rosie mentions her back hurts once or twice a day, but she was flipping on the swingset yesterday, so I am not really alarmed now! : ) Genna’s sore foot seems to have finally healed up…still not sure what she did, but it looks like everyone will be good for the recital this weekend.

Andrew also had a double header on Sunday, his team won both games. He pitched the first game (kind of glad I missed it, I get so nervous when he pitches); it was his first outing since the fall, and he pitched into the 5th inning (of a 7 inning game), so that is good. It was REALLY, REALLY hot, in the 90s, but sunny and nice.

90s in April doesn’t feel like 90s in August in Jersey; no humidity, so it’s quite bearable.

Then we had a barbecue at the home of one of Andrew’s teammates, THEN we all came home and collapsed!

Phew!

Then Monday was Rosie’s first softball game…she was so cute, her coach told them they were down by 4 and came back to tie it in a courageous rally…(of course they don’t keep score, there are no outs, everyone bats, etc.)…she was SO EXCITED. Rosie is the smallest on her team by about 5 inches, her strike zone is so tiny. Her first at bat she stopped half way to first base to see what she should do next…

It makes me really happy to see how much she loves this.

Yesterday I had my nephew/godson Owen for the day. He is so sweet and good, didn’t fuss once…I am SO out of the baby season of my life, I realized, but it was fun to do for a few hours. : )

So things are busy, but good. School is getting a bit tiresome on some fronts, but the end is in sight. Andrew definitely has some eighth-grader-it is…I can’t believe high school is around the corner. Genna is worried about moving to sixth grade; she seems worried about a lot recently, not sure what’s up. I wish we could just shake that, but I know that’s not to be. Sigh.

And as you likely know (because I say it ad nauseum) MAY IS BRAIN TUMOR AWARENESS MONTH! Obviously if you read here, you are aware of this already. But you may be saying to yourself, “wow, I wish other people were as aware as I am that May is Brain Tumor Awareness Month. I am so aware, and awareness shared is way more productive…but how? How can I share all this aware?”…

Well, you are in luck! Supermom Heide has created a pile of stuff at www.wallofcourage.com , t-shirts and buttons and mugs and bags and pretty much anything you can write “May Is Brain Tumor Awareness Month” on. For daughter, son, brother, sister, niece, nephew, friend, parent….there are items for anyone. A portion of proceeds goes to a bunch of bt charities, Heide has them all listed.

If a t-shirt is too much, a button is a nice option. I have my “I’m Wearing Gray for the Kids” t-shirt with “group one” on the back…Genna & Rosie and a lot of our friends…and my “I’m Wearing Gray for My Daughter” GIGANTIC button. Guess what I’m wearing to the dress rehearsal on Friday? (well, with other clothes, obviously)…

I am really quite done with brain tumors. I am really quite ready for a cure.

And don’t forget to check out SuperGabbie’s webpage for her NF fundraiser. Strangely, May is also NF Month, usually…busybusybusy. There are so many ways to help…
www.caringbridge.org/visit/gabriellehughes.

Finally, a hearty yeehaw to my Yetifunk brother & future Mrs. Yeti. Any girl who will dye her hair funky colors in support of the Yetifunk is someone we are proud to be related to! We are so happy for you both.

Ok, off to conquer my girls’ closet…again… ; )

Peace,
Kristin

p.s. for anyone in the D.C. area, this weekend is the Race for Hope for brain tumor research…last year’s American Idol, David Cook, will be there…his brother is battling a brain tumor…many of our bt friends will be there…if we didn’t have the recital, I would so find a way to get there. Only in standing together can we stand in hope.

Friday, April 24, 2009 12:06 AM CDT

Hi, all—

This will Truly Be A Quick Update! I have zero time…but I wanted to say

HAPPY BIRTHDAY, DAVE!!!

Today he is officially a grown up.

And since he was kind of alarmingly vague about How Exactly he wanted to celebrate, I am now running like a crazy lady. More than usual.

But today FINALLY the weather is gorgeous, just for Dave, I think!! And I have a few nice birthday things for him, I think it’s finally coming together. And a happy birthday to Laura, Heather, Phoebe (all yesterday) and Mark (tomorrow). PHEW!

The girls LOVED their day at DRS with David. They got name badges (which both wore to school today) and pink camouflage t-shirts with the DRS logo. They had bagels & pizza & cake (yes, someone upstairs loves Genna) and drew pictures and generally had a very jolly time.

The Bookathon is also officially over (thank God), now we just have to collect all the money. Phew.

This weekend is picture day for Rosie’s baseball team (even though she hasn’t had a game yet, due to rain) AND picture day for both girls for dance. Life after brain tumor means I buy every picture ever. Always. We also have a double header on Sunday for Andrew’s team, it’s supposed to be freakishly hot (like 88 degrees…after 49 on Monday, go figure). We are on Drink Duty, thank God for Costco. I have piles of Gatorade, Vitamin Water, and Propel (tried to get the low sugar stuff, it’s become a compulsion…which is utterly contradictory coming from she who had girl scout cookies for breakfast).

Ooh, almost forgot, we had an awesome, albeit chilly time at Yankees Stadium…the new place is astounding, I was surprised to be as impressed as I was. Despite our freezingness (I should know better, we needed warmer coats), the game was great, the stadium was impressive, and we all had a great time…even made it in in one hour, amazing lack of traffic!

Somehow Genna hurt her foot while there, she’s been limping…hopefully it’s better for dance today, she only has 2 more rehearsals before the recital.

Anyway, better run & get the rest of the party goods for the family folks coming over tonight!

Peace, Kristin who actually fit this on one page, someone alert the press!

Monday, April 20, 2009 9:32 AM CDT

Hi, all…

I am so supposed to be starting my day, so I will try to just give a quick whatever (NO, REALLY!!!).

First off, happy anniversary to my parents…40 years yesterday. Wow.

We got through all the crazy of the weekend and live on to tell the tale!

Friday was L-O-N-G. Really long. We left at 6:20, made great time getting to CHOP (arrived by 8:40…yeah, how glad am I we’re not doing that every week now? Let me count the ways!!), and got to see one of our favorite nurses in clinic. Genna also got to race into the playroom and dig out the book of the week, speed read it, and get her prize. This girl knows what she likes!

Dr. Armstrong eventually came, and we had to go upstairs for the actual meeting stuff. I was a little bummed about this…yeah, how times have changed, I WANTED to sit in oncology? Let me tell you, sitting up on the neurosurgery floor has no good associations whatsoever…and I knew I wouldn’t see anyone I knew. But it was fine, ultimately.

G started her testing with the fellow, Carrie, around 10:15…stopped for lunch a little after noon, we zipped outside to sit by the panda statue, it was SO gorgeous and sunny and warm. A little sparrow hopped right up to Genna (close enough she could see it), we enjoyed the break quite immensely. Then back to testing from 1 until nearly 4…

L-O-N-G.

At least I found a window to sit by…unfortunately that meant I could see/count the medevac copters, 3 landed while we were there. We’ve never had to do that (thank God) but that sound kind of instantly puts me back on Day One Of Genna Has a Brain Tumor: The PICU Night…and a strong tie to some of the horror of 2006 (too long to explain) …sigh. God bless those poor folks getting flown in… : (

Genna apparently did GREAT with the testing, she was cooperative and happy. Really, one on one puzzles and games are her favorite thing, I knew she’d enjoy it. They finished a bit early BECAUSE she was so good. I felt proud of her…and I got through 100 pages of the book I got for Christmas and haven’t had time to read.

Note: Cokie Roberts writes Fascinating books about the women who helped found our nation. Really engaging, both from an historical & women’s studies viewpoint. Just in case you wanted to know! : )

Genna was strangely quiet on the way home. Like freakishly quiet. She was tired, I know…and worrying about going to 6th grade…sigh. I think it was just a long day. We should get the report in a few weeks, which will mean a trip to Philly for me. I forgot about that woohoo…well, I remembered the theoretical necessity of a trip, forgot I’d actually have to arrange child care, put my fanny in a car, drive to the other CHOP offices in Philly, hear kind of demoralizing stuff, and drive home. Urp. But it is SO valuable, I know, and I’m grateful.

The girls had a great time at the last RU game; even though it was a tough loss for the team, Genna LOVED seeing the girls…they are funny and engaging and really make my girls feel like superstars. The transfer of my children to my sister behind the College Ave gym went fine…ok, that sounds wrong, but it was a logistical success…I got to where I needed to be on time, and no one fell asleep or demanded a refund on the spot, so I guess that is good.

Dave & Andrew survived the half marathon…they were both about 3 minutes slower than normal, the heat worked against them. Dave has a really hard time (we are learning) with running when it’s warm…and it was 70 near the end of the race. But both got through it, and agreed it was nice to run by the ocean.

And in a lovely blessing, yesterday did NOT get rainy! (which meant I got to have some time outside, I desperately needed it!) . We planted our shrubs, once today’s rain is done I am going to spray them with so much “GO AWAY, DEER!” spray my yard will be enveloped in a foul cloud.

Appealing, no?

This week isn’t too bad…well, today is insane, later, (dance/baseball—ROSIE’s first game, eek!/ccd drive/school meeting), but otherwise the week looks good. Tomorrow night we are ALL going to Yankees Stadium! We got $5 tickets the minute they were released for sale, so for Dave’s birthday we are going as a family…for the first time, and in the new stadium. Woohoo!

Thursday is a HUGE treat for the girls: Dave is taking them to work. Apparently his company does a very fabulous “take your kids to work day”, and my girls are able to go this year…they are SO EXCITED. Anyone from DRS who reads here, be prepared for the ecstatic Camiolo girls descending upon the company on Thursday! : ) Andrew opted out…missing school was countered by “having to hang out with the excited about everything—in public!--little sisters” all day. Public excitement is not cool, so Andrew is heading to school! ; )

And then…Friday is Dave’s birthday…sort of a momentous one (sorry, honey!), I have to make something superb. Just had a great idea, need to see if I can make it happen. Why do great ideas occur 5 days before you need them? Ack! And then onto another flurry of activity weekend…all good, but all busy.

Even though some stuff with G is uber-challenging right now, I am so grateful we can have regular life. Being in clinic on Friday was such a reminder (like I don’t remember?) of EXACTLY how far we’ve come…through great doctors, cutting edge science, many prayers, lots of chocolate, and mighty perserverance by G…

Phew.

And dang, this ISN’T short…I really do try…

Please pray for our friends in tough spots. I’ll try to put up some links for stuff, if anyone wants to join the fight.

And on that note, I have to go start this day (exercising makes me not move fast for a while!)…need to mail that box….

Peace,
K

www.wallofcourage.com for brain tumor awareness items, Genna & Rosie are on the “Group One” t-shirts & mugs. I don’t really wear t-shirts with writing…well, I didn’t until my kids got sick. Now I have a CTF shirt, an NF Endurance team crew shirt, a Yetifunk tee…and my “I’m Wearing Gray for the Kids” shirt is on the way. Yeah, it’s like that.

www.caringbridge.org/visit/gabriellehughes has the link to Ori’s Network for Good badge…Ori is committed to dying her hair GREEN for their “Pose for a Cure” event in July, the more money she gets the crazier she’ll go…and more $ will go to NF research.

And my sister Emily is running a half marathon…I need to get her link up, too.

Starting to wonder if I can follow in those footsteps…hmmmm.

Thursday, April 16, 2009 9:54 AM CDT

Hi, all…

I hope you all have recovered from any choco-induced ecstasies! : )

Easter was so nice here…the vigil Mass was gorgeous (and we again escaped with no one in my family burning down the church with the candles…even though my oldest was the one messing with the candle the most, I guess pyromania is familial, too…ahem). Sunday morning was very peaceful, the kids were excited and found their baskets fast (we hid Genna’s in the guitar case from Matthew West, heehee), they enjoyed the neighborhood parade (and I snuck out of half of it, it was COLD here, and windy!), and then we went off to a really nice celebration at Donna & Ray’s house. It was a blast.

The Giants helmet looks fabulous there! : ) (they won it at the Coffeehouse, which was one of many things that made my night then!).

The weather has been kind of bleh this week…today is sunny and promises to be nearly warm, which is nice after the soggy days. We bought a bunch of plants at Costco (giant azaleas for $13.99? Hello?), now we need to plant them...I’m wishing I could deer fence our yard so the plants STAY gigantic, but that would require construction akin to the Great Wall of China project, and we don’t scan again until July, so I don’t have the psycho-oomph needed!

Rosie just asked if Andrew could take the training wheels off her bike…sigh.

We did see G’s counselor again this week. We are kind of back at square one on the food front, it’s been very, very hard. I’ll leave it at that…but it’s so constant, and so not nice. Poor G.

Tomorrow is our big CHOP day, I am kind of not amused…it’s supposed to be 70 and sunny tomorrow! (how many days like that have I spent in the hospital, watching time go by?…sigh. I think it only especially rots because it’s one of the first nice days this year). We have to leave around 6:15 to make sure we’re at CHOP by 9, then Genna has neuro-psych testing for 6 hours, then we make the 2 hour trek home (it takes longer in the a.m. with rush hour traffic outside Philly). It will be a VERY long day, especially for Genna, who tends recently to be extra tired, and these tests are intense…if you can spare a prayer for G, I’d appreciate it.

This testing is so valuable for all aspects of G’s school experience. The doc at CHOP does a lot of the same tests a child study team would do, but then filters them/explains them in a brain tumor context. She gives me the WHY of all of the test results…like the cerebellar tumor causes G’s brain to process info in this particular way, the optic issues do this, the hypothalamic involvement causes this, but all specific to Genna. It’s an astounding branch of science, really.

The final report is like gold. Demoralizing gold, but gold nonetheless. I take the parts I want teachers to know and retype in simple language. We had this done a few years ago, and this is G’s “before middle school” follow up. She had fun last time, she was smitten with the fellow who did the testing! : ) I pray it goes well, and that I don’t fall asleep driving home.

So, if you can send any good thoughts G’s way, that would be great…and for Andrew, who has to babysit Rose all day because all our regular folks are busy. I think my parents are around later in the day, and it IS supposed to be nice out.

And if you have any extras after that (!), Dave & Andrew are running a ½ marathon on Saturday a.m. for the NF Endurance Team. I can’t be there (I am such a moron…I am such a moron…but I’m handling it well, right? ; ) )….and after Dave’s last finish (DRAMA) I am a speck concerned. He is pretty confident he’s made the necessary adjustments to his training, he has the electrolyte drink my brother recommended (John, he LOVES those nuun things), he is sleeping at home the night before and driving down early…it should be ok.

I have to bring the girls to my sister in New Brunswick, so she can take them to the last RU LAX home game/senior day/etc. (I am such a moron…etc.). THEN I have to run and give a talk somewhere…better get directions, hmmm…so if there are any dribbly drabbly good thoughts left, can you send me one? I figure I so colossally screwed up my schedule there must be some higher plan behind me having to do this talk (at a prayer day thing for young women)…which doesn’t exactly relieve the pressure, you know? Hopefully it will go ok. I mean, I have a big calendar & carry a calendar with me…how did I screw this up?

Yesterday I finally got a firm outline together, my brain just…well, if you’re reading here you KNOW the tangential ways my brain moves! And it’s a tough topic for me, several times going through things I got emotional and I do NOT want to do that in front of people. This isn’t Oprah, for heaven’s sake. I hope the right words come out, that’s all.

So we are officially busy, and getting optimistic that Spring may be finally here!

We have our box packed to send to Gabbie for her “Pose for a Cure” NF fundraiser…check out www.caringbridge.org/visit/gabriellehughes to see how you can help Ori have the coolest green hair EVER!!! I have to wrap the box and get it in the mail…we must find a cure. NF marches on, we have to sprint ahead & ambush it at the pass, you know?

And for our BT buddies, check out www.wallofcourage.com to find cool gear for Brain Tumor Awareness month in May. We’ve lost a grandma, a beloved teacher, and too many kids we love to this horrible disease. I will be wearing gray for the kids in May…and on the “Group 1” shirts & stuff there are some familiar faces. The proceeds go towards a variety of bt charities, Heide (designer/angel mom) has done a fabulous job. (and it’s the ribbon…the ribbon is gray, so the shirt may be a different color, it’s the ribbon on the shirt that counts. That’s how I figure it!).

Better go find my girls, and see how Rosie’s training wheel-lessness is going (and dig out the SpongeBob bandaids, too!)…

Peace, all…and Happy Easter Season!
--k

Saturday, April 11, 2009 12:12 AM CDT

Hey all...

Happy Easter!
and to our Jewish friends, I hope you had a blessed Passover.

Now back to the crazy cook/clean fest that is today...church tonight...and happy choco festing tomorrow!

May the hope that IS tomorrow flood your homes like a herd of chocolate bunnies. : )

peace,
Kristin

Wednesday, April 8, 2009 9:36 AM CDT

Hey, all.

Happy Wednesday, almost the Easter triduum.

Figured I'd throw in a short whatever before we get into the busy of the next few days.

The Book-a-thon starts today. Genna & Rosie are agog. Unfortunately there were some discrepancies in how things were being run, exacerbated by my child who is a human Tape Recorder...just finished a pretty intense phone throw down with a teacher about things, which ultimately ended well, but reminded me that a) I stink at conflict (always do fine until the stupid brain tumor comes up! Dang) and b) I am always right. ; ) Which maybe is why I stink at conflict when it involves my kids! ; )

I think we cleared things up. I did get to clarify a key aspect of my child's way of thinking, which somehow had been missed all year? Sigh. You can't tease/joke around about How Things Should Be with a child who processes EVERYTHING literally. If when asked "what's for dinner?" I say, "tonight we aren't eating, I figured I'm not hungry so nobody else is", I get a horrified response. It's gotten better, I can now say, "G, do you REALLY think I'm not going to feed you? Have I EVER not fed you? In your entire life? Ever?" and she is ok...but if someone says something jokingly at school, she takes it as gospel.

Which really, for someone like me who is a walking albeit quiet in public mouth, is a good reminder that I need to be careful of what I say.

But now I feel like road kill.

G's teacher did say he meant to call me today (before the phone call I should have saved for Dave to hear)...to say that G is one of the most kind, caring, and compassionate kids he's ever seen in nearly 40 years of teaching. This meant a lot...

because G's been having a bit of a tough time. We've not seen Miss Nora for a while...I was sick when G was supposed to last go. Just seems like her anxiety is up a bit. A rather noticeable Bit.

Have I mentioned How Much I Hate that Brain Tumors Mess with EVERYTHING in the Brain? Have I mentioned that?

I am so grateful for stable. And honestly, kind of mad today about the lingering wreckage our kids have to deal with. It just doesn't go away.

My friend Alice had this quote on Lexie's page a week or so ago, and I copied it, because it was so...perfect?

Hope has two beautiful daughters - their names are anger and courage; anger at the way things are, and courage to see that they do not remain the way they are.
-St. Augustine

Could there Be a better way to describe life in nf/bt world?

Feeling more of the anger than the courage today.

But it's sunny, and the kids have a half day...we are going to try and clean the playroom (a NEVER ending task) and find a shirt for Andrew for Easter and then run over to a local church for confession...I have choir rehearsal tonight (Suzanne is so nice to let me come bellow along during Holy Week, even if some of the lyrics hit too close to home...I missed Marta on Sunday as we went through the same hymns that ...well, that were tough last year).

I know God understands pain. I know. And like GI Joe, Knowing is half the battle, I guess...just need more of that other half.

Tomorrow Damien & Phoebe will be here during the day, we have a short morning church service (shhh...I mostly go because there's crumb cake after, fabulous crumb cake one of the parish ladies makes...lest anyone think I am like lobbying for canonization by going to church a lot! This is really a notable cake!), then spring cleaning/keep the kids occupied...early dinner & off to church…then Good Friday should be a quiet day, and then Saturday...busy!

And it all comes to fruition on Saturday night at the Vigil Mass. Sunday our neighborhood has a parade, and then we're off to Aunt Donna's for Easter dinner.
Busy, hard stuff, busy, hooray.

The next 4 days are kind of a microcosmic version of life, really!

I did buy Really Good Chocolate yesterday, which made me exceedingly happy. I am trying to not eat chocolate this week, to make up for 5 weeks of half-hearted Lentiness. I realize I like chocolate Way Too Much.

Anyhoo, I am so grateful that G has gotten so much stronger. Just looked at a picture from when we were stuck in house in 2006. She was so little (this was before her food stuff), but so pale, her hair was so thin, she is beaming and coloring with the hand not plugged into an iv...

We are so blessed right now. Need to remember that, move from anger and sad to courage. One step at a time.

For all our friends in tough spots right now..you are in our prayers. For everyone in the same spot we are, this odd limbo of watch & LIVE, you are in our hearts...

And especially for Susan & Jay this weekend, Timmy's angel anniversary...thoughts, love, and prayers to you...

Peace out, all--
Kristin

Ps. Do check out www.caringbridge.org/visit/gabriellehughes to see the crazy cool stuff her super mom & fam are up to to beat NF to smithereens.

I know, this isn't short...really, did you think I'd manage that? ; )

Friday, April 3, 2009 10:00 AM CDT

Hi, all. Happy Friday.

Or, if you're in NJ, Happy soggy rainfest ugh Friday.

But let me tell you how I really feel!

Hopefully the new CB settings won't botch all my punctuation again. I may have to eventually get a new site for G...why that is mentally hard for me I can't explain, maybe just that I started THIS site only about a month into Genna's whole brain tumor/nf journey. It is such a part of everything now.

It's been a good week, generally. Good to have Emily home, good on the school front mostly, not horrendous on the food front. Genna is almost psychotically motivated for the start of the school's annual Bookathon fundraiser. Well, not really ALMOST--she is like a child possessed. She has been planning who to call to ask for pledges since January. Asking about going to the library (for the APRIL bookathon) in January. She is VERY MOTIVATED.

Someday this child will simply hound science into curing NF.

This is Rosie's first year doing the Bookathon, too. In classic Rosie fashion, her pledge sheet is already a wrinkled mess, but she is excited to participate. It's a great fundraiser, it just gets to be a little crazy for Genna.

I really have to start assembling the paperwork for Genna's neuropsych evaluation. I want to go in prepared, and I don't feel prepared yet--with questions, concerns, and really thorough descriptions of G's classroom challenges & strengths. It's an odd thing, the classroom situation for G, it's kind of always in flux. Some stuff is hard, then easy, or vice versa.

Her vision is the same way. Weird moment: we were at the RU LAX game on Sunday, and G has a Very hard time following the game. She just can't see the ball at that distance, everyone is running, it's hard. That said, she saw the assistant coach, Brian, on the sidelines, maybe 30 feet away (we were in the stands). "He's wearing an UnderArmour shirt!" she said--she could make out the tiny white circle on the back of his shirt, and knew that was the UA logo--bizarre! But show her a bird in our yard, she can't see it. Flux...

She has been working on a little project for the basket for Gabbie's Big Fundraiser in June, which is so good for her. Kids helping kids with NF--Sandra would be proud! You HAVE TO CHECK OUT GABBIE'S PAGE, her supermomma Ori has issued a challenge involving serious hair color and money for nf! She is so mighty--check out www.caringbridge.org/visit/gabriellehughes to see what Ori is up to, and how we can support their battle against NF.

My kids have a half day today, and the weekend is kind of busy. I should try to go over to church for a few minutes, I could use the time just to reflect a bit. It's been a rough few weeks in bt world. Rough.

On that front, my friend Heide the Magnificent created all this awesome stuff for May, Brain Tumor Awareness Month. Genna & Rosie are on t-shirts & such, there are magnets for support, etc. Go to www.cafepress.com and check out the Wall of Courage store--or search under brain tumor. The stuff that says “I’m Wearing Gray for the Kids” is Heide's, from there you can link into the full Wall of Courage store. There are support items for grown ups, too.

Now that I've bugged you all for the 57millionth time about how to get a cure, here is an awkward segue!

Lest anyone worry, we aren't starving to death or weaving clothes for the children from the tall grasses bordering our yard or starting to gather firewood to create some warmth or anything. I am (NEWSFLASH) a bit of a worrier. And growing up, my family never wanted for anything, but that was largely because my parents were frugal and creative. 9 kids on a teacher’s salary (a teacher at a small Christian school) was a lot to handle, and we never had much money around. That said, I NEVER felt deprived or bothered by that, my parents are big Do-It-Yourself-ers and really quite creative in ways to have fun and such without spending the big bucks. We all worked hard in school because we knew we’d be paying for college. I never owned a new car until I was married (and that was a ’94 Tercel, we had to get it with our wedding money because someone hit Dave's grandma car, er, sedan, and totaled it). When we were first married and I had Andrew, things were tight. Frugality was a habit. So living in a fiscally conscious & responsible way is in my head.

Strangely, Genna being sick helped me lighten up a bit about that. Life is too short to not do the special little things that maybe cost a few dollars--and we’ve been blessed to be able to not be as tight as back in the day. Our time in oncology taught us well on that front.

The current economic news just makes me sort of meander down memory lane--but without the filter of Mom & Dad handling the bills! : ) With Andrew going off to high school, and me not working outside the home right now, I am just more aware of the bills these days! (as a side note, Did you know in Saskatchewan the Catholic schools are FREE???? I am agog at that.)

We are fine, all is good, I just feel more in control of my life when I am finding a good deal on peanut butter. It's all good. Dave goes crazy when I worry about it, I just think the mental insecurity of the financial yikes is contagious. And I don’t even watch the news or anything!

So I will try to stop worrying about it and go clean my house, (yeah right), work on mending, iron some shirts (yeah right again), get ready for the kids to come home early, finish up Basket #1 for Gabbie, work on the talk I'm supposed to give, pack up Flat Joey for his trip back to Idaho, find a tilapia recipe (Genna is not going to be amused about that!) and just live today.

Because when it comes down to it, I have my kids today. Kids who unconsciously defy the disorder that plagues them just by living with joy and energy (even if it’s ocd Bookathon energy! ). Life is too short. Gonna try to embrace that anew in the coming weeks. I feel like we dishonor the kids who didn't make it if we don't embrace the joys of everyday.

You know I don't say this randomly, but go hug your kids or someone you love today. Just do it.

Peace out,
Kristin

Tuesday, March 31, 2009 8:09 AM CDT

Hi, all. Not sure why every apostrophe has turned into a question mark, and every ellipsis--I think I got most of them out, perhaps CB is feeling inquisitive? sorry, it's SO ANNOYING.

Happy Tuesday.

It is sunny and hinting of spring here, which is nice. I seriously need some spring.

Trying to get back into the groove of things without getting alarmed by the way my calendar is glomming up. I don't want to miss life by being busy, if that makes sense.

We had a great time at the RU game on Sunday. The girls played hard, and held their own against #6 in the country Georgetown. while RU ultimately did not prevail, Genna loved cheering for them, and she brought choco brain pops for everyone, which I hope took the edge off a tough loss!

Emily is home for a week, hooray!

Genna and Rosie had a few too many late nights over the weekend, with the RU game, a party for one of G's classmates, and then a welcome home dinner for Em…even at the Sunday RU game G was fading a bit. By last night she was a wreck. I felt really bad, trying to comfort her about going to 6th grade (yes, that's not until September, but she was just heartbroken about leaving 5th grade…um, overtired?). Finally I decided it was bedtime, and even G agreed sleep was the key.

Even though I know she was tired, it's hard to see her so anxious and sad. Rosie was trying to find ways to make G feel better (and was not amused when she realized she was off to bed super early too!). Both girls slept in this morning…for G to get up at 6:30 is insane, Rosie had trouble getting up after 7…tired, tired girls.

Of course as I think about it more…well, I'll keep an eye on things. G has been so tired recently.

And we've had so much bad news in so many quarters…

Rosie LOVED her first softball practice. She is kind of hopeless (and apparently the smallest on the team), but so excited. Both girls are getting ready for the dance recital. Easter is around the corner…Andrew starts baseball this weekend…

Life is good. There are challenges…food has been tough again here…it's not even really about the food, it's about anxiety and such, but it gets old. And then I wonder if I could be doing more…

And as I wonder if I could be doing more, I end up kind of floundering about doing nothing! Ack!

Genna and Rosie are excited to be putting together a basket for our buddy Gabbie's Pose for a Cure event on June 14 (www.caringbridge.org/visit/gabriellehughes for info), we have picked out some VERY cute things and used coupons, so it’s almost an economic lesson! We have to keep doing stuff…

I may set up an Etsy page or something to try and sell the bracelets I made for the Coffeehouse. I am still new to the jewelry thing, so anyone I gave a bracelet to, if it falls apart let me know! I am not too coordinated with the crimp tool thing yet. But I feel like we have to keep plodding forward—even if that means making little bracelets that hopefully can chug a few bucks towards research or something. Like The Last Battle, by C.S. Lewis, higher up & farther in, we have to keep moving forward in our battles for a cure. That phrase has been a lot in my mind recently, as I feel a little like I’m spinning my wheels in the mud.

Higher up & farther in…

In that vein, May is Brain Tumor Awareness Month…it’s also (in many places) NF Awareness Month. Lucky us…ANYWAY, my friend Heide made these amazing shirts & buttons & things on Café Press that say “I’m Wearing Gray for the Kids” (or “for my daughter” , “for my sister”, etc.)…with pictures of our kids. The Cams gals are in Group One. Heide actually knows how to do graphic design, there are no hand drawn yeti, if you know what I mean! The stuff she makes is really fabulous. I will try to find the actual link, on Cafepress her store is called Wall of Courage…or go in under Brain Tumor Awareness and you can find it. www.cafepress.com

I have a beautiful gray/blue stone called sodalite, I may try to make some brain tumor specific bracelets. Heck, even if I don’t sell this stuff, it’s at least equivalent in cost to therapy ; ) .

Ok, I better go organize or clean something. I'm very conscious of our economy these days, trying to go through my boxes of whatever and make sense of stuff, see what I can make use of. Sometimes I think in a previous life I lived through the Great Depression—I am trying to remember all my old good habits of frugality. It's empowering.

And these days, ANYTHING empowering feels good. There's just way, way too much bad floating around.

Please pray for Erin's family today & tomorrow, as they lay their sweetie to rest. In the last 2 weeks I think 5 kids from our BT list have earned their wings.

Higher up & farther in…

Peace,
k

Wednesday, March 25, 2009 6:18 PM CDT

saturday...rest in peace, little Erin...so sweet, and juicy, and pink...forever 4 years old...dancing and singing...
brain tumors #&$)^#@!!_ . : (
please pray for the Roderick family...
www.caringbridge.org/visit/erinroderick

FRIDAY NIGHT:
GO, RUTGERS!!! GREAT WIN TONIGHT! WOOHOO!!!!

Hooray for a nailbiter win...I have no voice left!...And the girls all high fiving G at the end, and then cheering "Genna! Genna! Genna!"...and then "Rosie!Rosie! Rosie!"...to my beaming girls...I CANNOT thank Friends of Jaclyn enough for that moment. A crowd of super cool college athletes cheering for my girls...priceless.

RU LAX, we are so proud of all of you, and Genna wanted desperately to cheer "GO BIG SISTERS!" through her megaphone...

hooray!
peace, k
*************************************

Rest in peace, sweet Nora

Hi, all.

I know, I just updated, but it was too neurotic even for me, so I decided to list a few hoorays.

? It has been sunny.
? Today was in the 50s, ie Delightful!
? Genna has mostly been not a Wall of Sound at school, an improvement.
? We got the neuropsych appointment much more easily than I anticipated.
? Genna e-mailed our doc some jokes, which always makes me feel better.
? Because I miss our doctor. Which I know seems insane, but she has been a ginormous part of our lives for 4.5 years. We miss her.
? We do not miss Oncology. Not being there for 2 months already has been Fantabulous to say the very least.
? I got to talk to Kelly Jarego, Choco-Basket lady extraordinaire, Last night! This was just such a pick me up?even if Rosie followed my pacing self around in circles. Seeing ?Saskatchewan? on the caller id is pretty cool.
? I managed to get the wide tooth comb out of Rosie?s hair without scissors involved. She was detangling herself, a process that went terribly awry.
? I got through the laundry. Except for the bleach load. But the mountain is now a mole hill.
? Rosie is wearing fuschia capris and a red shirt with sparklies and her blinkie shoes, and I haven?t told her yikes. Well, not more than once.
? Um, I accidentally defrosted lovely pork chops instead of the crock pot meal I meant to. So yum.
? Fruit salad tonight?yummy yummy.
? Because it?s a feast day I forgot about, Annunciation (you know, like from the Christmas story??an angel was sent by God to Mary??a big day, if she hadn?t said Yes, well?). It?s a good day to think about saying Yes to the hard things.
? The people I know in the bt community who are so hurting right now (it?s been a really rough week or so) are just such examples of love in action.
? We are determined to cheer on RU this weekend!
? Em comes home on Sunday!
? Klondike bars were on sale this week. While I can?t really buy them anymore (oh, I wavered!), the 100 calorie version were on sale, too! Woohoo!
? We actually have taken some steps to be a speck more involved in the prayer group we used to be very active in?Before Smite. Baby steps, but positive ones.
? I cleaned a cabinet today and got rid of a gallon sized bag of lollipops from who knows where? And I finished off any M&Ms I found. I mean, I cleaned them up. Ahem.
? Today my brother went to a Mets spring training game?and because of where he was sitting, we could see him on tv, one of the ESPN channels! It was so funny, totally made my day to be texting him about ?I hope your soda is tasty!? and ?what kind of ice cream is that? (should have asked that, I didn?t get to)?so funny and cool to see him there. We miss you, Rich! (glad I DVRd it).
? I JOGGED TODAY, just a little, I didn?t mean to, it just happened?a quick walk, then the open sidewalk beckoned, and I ACTUALLY SPONTANEOUSLY JOGGED, WHAT HAS HAPPENED TO ME? I will likely be unable to walk tomorrow.
? Genna was thrilled with her choir practice, baby Zoe was there, which is always a high point.
? We got G?s camp forms for Ronald McDonald camp?Great Excitement.
? It?s still light out!

So this is my list of things that hopefully don?t sound like a call for the waaaaambulance.

I can?t lie, there?s a lot of sad this week, my heart is still in pieces for Nora?s family, and for the bt families in horrible places right now, especially little Erin?there?s a lot of sad. Heavy sad?

But like I said in my uber-neurotic post (still hope someone will guess the musical)?I am so grateful G is stable right now, and Rosie hasn?t needed treatment. I wish they had some more NF friends or BT friends close?but I am so grateful for their Idaho boyfriends (!) and their RU big sisters, and for their buddy Gabbie?and for our memories of Sandra?I am grateful. We are very blessed?

And I?m so happy for our friends with good scan news, our friends in the Wish process, our friends working for a cure (go, Gabbie!). These happy things go a lo-o-o-o-ong way towards keeping the waaaambulance at bay. And I really am grateful.

So I hope you enjoy this mild fest of festiveness. I know Caringbridge is cheaper than therapy, but I don?t want to make people feel the need for prozac AFTER reading here! ïŠ Thank you all for bearing with me as I navigate Watch & Live with G & R?

We are so blessed.

Peace,
Kristin who still is wildly neurotic but hey, I can embrace that. If I was into embracing, you know?

Tuesday, March 24, 2009 12:26 AM CDT

rest in peace, sweet Nora

Hi, all…

Happy Tuesday.

I feel a bit more back on my feet…after the Coffeehouse, then nearly a week of sick, then away with the kids, then the loss of Nora…I felt like I was impersonating a pancake. Just flattened.

But yesterday and today have been sunny…I got to go to Costco & get milk and cheese and detergent and such, I’ve started the mountain of laundry, and I am starting to work through the mending and mess that sort of wander around here all the time. And I entered the Wergle Flomp poetry contest, which was Way Too Entertaining for me (google it, it is a riot).

We did have a really lovely time away…my sister Laura came with us (she is 2 years older than Andrew, they are good friends), which is always nice—my kids are nicer to each other when Laura is around! And this year my sister came up with her 2 kids and my good friend Ceril came with her 2 kids. We had a blast. Genna was much braver this year about the waterslides (she went on with one of us a bunch of times), and by the end Rosie was doing the slides alone!

Just having everyone taller made me more comfortable with all the water. There was only one spot in the whole park over Rosie’s head.

Genna had fun using her allowance money in the arcade, as did Rosie, and generally a grand time was had by all.

It’s just really nice to be together as a family NOT at home. I love home, but here there is always something to be done. Great Wolf Lodge really has become a place where we can relax.

We came home to busybusybusy, of course. Genna had dance, Andrew had a retreat thing on Friday night and then basketball most of the day Saturday…and of course he woke up with a fever! Still, he managed to score nearly half of his team’s points in each of the games they played…and they won the town championship! Thank God for Tylenol! Genna also had a party on Saturday…it’s nice, her class is finally doing group social things, so G is included. She is doing better on that front…and I only cried randomly at one absolute stranger, this is why I hide after we lose one of our warriors. Sigh.

I still have a pile of thank yous I need to find addresses for or have Dave sign…and I need to do some serious reorganizing of the craft stuff here and the girls’ closet. I keep trying to scrounge with what we have, but I may need to bite the bullet and actually get some shelving that is meant for the spaces I’m trying to organize, instead of stacking crates and stealing my kitchen plastic containers!

Sunshine is very helpful to me.

Of course today got started a bit slowly, I just re-started exercising after 2 weeks of not, and then Dave called…Yankees tickets went on sale today! We managed to get tickets for our whole family to go 3 days before Dave’s birthday, which will be a great present (and they were the $5 bargain tickets…we didn’t think they would have those this year with the new stadium). This is a milestone birthday for Dave, and he has been very unhelpful in telling me what special thing he wants to do…but we’ve never gone as a whole family to see the Yankees, and to be there in the first week of the new stadium will be AWESOME (even if we can touch passing aircraft from our seats!). I tried to get bargain tickets for Andrew’s birthday but could not, even with 2 computers going on ticketmaster at the same time! Phew!

So it goes. We do have a definite date for G’s neuropsych evaluation…April 17th. I’m supposed to give a talk at a Catholic women’s thing (which I am realizing I am utterly unqualified for, the more I try to think about it! Dang) on the 18th while Dave & Andrew run their half marathon…yes, I’m a scheduling moron in addition to being utterly unqualified to pretend I have anything all together in my life! I so want to be there, but I screwed that up, so it is what it is. I hope Dave finishes ok, he’s been training very carefully, cognizant of his last dramatic finish line moment. And Andrew…sigh.

I think God might be laughing at me.

In a related note, Dave got a thank you for his donation to CTF (I guess he bought raffle tickets at the big fundraiser?)…and it was signed “great to see you both there!”…um, I was home sick on my couch…but Dave LOVED my rendition of “Mrs. Cellophane! Mrs. Cellophane! Shoulda been my name…” (he loves that as much as when I sing “I am old/I am ugly/ I embarrass you! You are ashamed of me/you are ashamed!”...name the musical! Or “there was a time/when it all went wrong”…name the musical! …my poor spouse)…we did laugh (Dave has an invisible wife! Who knew?), but it kind of reinforces my sense that the talk I’m supposed to give will be more cautionary tale than “hey look! This is how I got to be secure in myself!” ; ) .

The girls’ dance recital is the first weekend of May…Rosie starts softball soon (be afraid!) and Andrew starts baseball this weekend. We are also hoping to get to the last 2 RU home games for Lacrosse this weekend…they’ve had a tough season, and very few home games…G needs to go give them a literal SHOUT OUT I think! : )

And then Em is coming home for spring break, hooray!

I wonder if I could save up enough for another night at Great Wolf Lodge? ; ) Just typing this makes me ready for vacation!

Anyway, that is the story. We are well…and I am grateful. So grateful for every day my G makes me berserk with her Wall of Soundness or constant, constant food issues. We are so blessed to be on this island of stability when so many others aren’t…

We just have to make the absolute most of it.

Always hoping for a cure, and now off to try and clean something in my cluttery house.
Peace,
Kristin

Friday, March 20, 2009 4:17 PM CDT

Hello, all.

We had a lovely time away...which I'll talk about sometime.

Came home to find out sweet Nora, one of our NF heroes in the slide show, ended her battle yesterday. She is the sweet pink princess on the page with Gabbie & Sandy...she loved pink and princesses and baking (I have great admiration for Nora, she puts me to shame on the cookie addiction front, and that is saying something!). She was so brave and so sweet...

there just isn't enough glue to keep putting hearts back together, you know?

please pray for Deedy (mom) and Nora's dad and her extended family that loves her so well...

we've been praying so long...

rest in peace, sweet Nora...
we will never
never
never
stop working for a cure for NF.
Never.

peace,
k

www.caringbridge.org/visit/nora

Tuesday, March 17, 2009 9:38 PM CDT

Hi, all—Happy St. Patrick’s Day!

The whackadoodle formatting issues were making me crazy…and the Waaaambulance has taken the Whinosaurus…well, at least out of earshot! ; ) So I figured I’d say howdy again before we head off on our mini-awayness.

The kids are so excited to go away. I’m excited to see them excited…and aside from a few sore throats, no one else seems to have gotten my plague! And Rosie’s sore throat Could just be her Fruit Breezers lozenge craving acting up!

The sun was out, kids were playing outside, I only had about 10 minutes of headache today, and I managed to mildly exercise…I think we are on the upswing.

I am still trying to balance things in my head (as opposed to on my head, but really, I’m equally bad at both!)…realized after talking to a friend (who was a force for our Coffeehouse) that we just live too close to Manhattan sometimes. It skews reality, our proximity to the big city.

In real life, cookies ARE supreme.

Anyway, we are STILL getting in donations here and there, and I have to tell you, when I open an envelope from a little old lady on a fixed income…who sends a little note apologizing that she couldn’t come, but here is some money…that just moves me in a way difficult to describe. Folks gave to us from their need. People gave of themselves so my kids (and my friends’ kids) can have a future….

Wow.

So I am trying to shake off the old demons that harrass me, and trying for the 80th time to organize my girls’ closet in a way that will STAY organized, and trying a new recipe (hey, all that time sick on the couch watching Food Network paid off, Ina Garten’s homemade hot fudge sauce is a home run for a St. Patrick’s Day sundae!)…really, trying our best is all we can do.

I’m trying not to cry too much for our friends in dark places, trying to focus on the massive hooray of other friends (DREW THIS MEANS YOU!), trying to find hope in both moments. I’m trying to find any t-shirts that don’t look all crinkled and nasty, trying to pack for a getaway, trying to think of Every Piece of Food we might need so we don’t have to buy $6 nachos (!), trying to figure out when we can get back to RU to root on G’s big sisters, trying to at least start thinking about G’s upcoming neuropsych exam, trying to NOT think about going to CHOP for anything like an upcoming neuropsych exam…

Try, try, try.

I maybe need to try to keep my wonderful friends from going ninja for me? ; ) I love you guys. Thanks for picking up my pitifully insecure self….AGAIN! NF admittedly sucks, but getting to know all of you has been more than a silver lining in this cloud. More like sparkly rainbow colored lining….

ANYWAY, thanks again to all. I hope that Genna has fun at GWL, she already told me she is Not Going On Any Big Water Slides. But this year she’s too tall for the really little ones that she likes…alas! Still, she is planning to go around & around the Lazy River and to swim in the pool, she is trying to not worry about everything.

Oh, Dave just got home from work…better run and make sure he gets some of our Irish stew, soda bread, and the aforementioned hot fudge. He won’t touch the cabbage…even though he is almost as Irish as he is Italian, although he doesn’t look it! Rosie wanted to know today if Genna was as Irish as she (Rosie) is…she didn’t believe me at first that they are all equally heritage-filled! ; )

Wishing you all peace, and health, and inspiration for whatever you are trying today. Who knows what great thing will come from whatever we try?

Peace,
Kristin who really wants more hot fudge…mmmmm.

Sunday, March 15, 2009 2:53 PM CDT

I HAVE NO IDEA WHY THE FORMAT IS ALL FUNKY, I AM SO SORRY! I KEEP TRYING TO FIX IT...ARGH!

i, all¡K

Sorry for the Abyss of Silence over the last week¡KI would like to say that I was a busy beaver, finishing ALL the thank yous, counting the raffle tickets we sold, cleaning my pit of a house until all shone with a brilliance appropriate to my domestic goddessness.

I would like to say that.

But if I want to avoid being a big fat liar, I have to say I was sick as a dog all week! My Monday uber-exhaustion morphed into actual fever & yikes until Friday, at which point I moved UP to feeling like road kill! I never, ever get sick like this. Ever. My kids don¡¦t remember seeing me like this, neither does Dave. I¡¦m not sure if they were more concerned because Mom was a heap or because the fridge got frighteningly bare, except for some fruit & veggies (!).

I have to say, I was not amused. I have soooooo much to do post-Coffeehouse. And I still am only at about 70 I am just so tired.

But in happier whatever, our Coffeehouse total has continued to climb¡Kwe are at about $6800 for the night! Partly from new donations, and partly because I apparently can¡¦t count at 1 a.m! ; ) Hey, if Dave finds dollars I missed he can recount 20 times! ƒº It¡¦s all for a good cause!

So for everyone I should be thanking¡KI am so sorry for the delay. I had all kinds of grand delusions of speedy efficiency. I hope to finish the last few bazillion tomorrow & Tuesday¡K.Wednesday we are going away! ƒº It¡¦s our 3rd annual ¡§hey, remember Make a Wish? That was awesome, we should celebrate life with a little getaway Every March!¡¨ trip. I can¡¦t wait¡Kwe are off to Great Wolf Lodge for 2 nights, thanks to a 20ff coupon & that editing work I did. Woohoo! It is so one of our favorite places¡Kand this year some friends are coming, hooray!

Genna has been ¡§practicing¡¨ the guitar. I caught her today trying to tune it¡KACK!! We had to cancel her Miss Nora appointment last week because I was sick, we are fighting the food wars in earnest again. We NEED spring¡K.and outside, and playing, and Out of the Kitchen! G is not amused to be missing 2 days of school next week, but she¡¦ll get over it! ƒº Andrew & Rosie are SO excited.

Dave went to the Fancy Big Money CTF event the other night, he said it was really impressive, and he got to meet a lot of NF folks, which is great! I think I probably need to evaluate the value of what we do. I think it¡¦s really good¡KI think grassroots community type events have intense value¡Xthe old ¡§knowing is half the battle¡¨, but I can¡¦t really pretend that our really great evening is equivalent to a night that generates well over $100k. I just don¡¦t know¡KI saw on Facebook that a gentleman up near where Andrew goes to camp is doing an NF fundraiser called Kilt for a Cure. He is wearing a kilt every day in April to raise $ for CTF. This so appeals to me (look for him on Facebook, it¡¦s a pretty cool story)¡Kbake sales and swim a thons and keychains and whatever¡Kthis is how I roll. But is this the BEST way to help our kids? I just don¡¦t know. But I think maybe yes? But I¡¦m not sure how to rationalize that out.

There are some perils to living as close as we do to Manhattan! I¡¦m NOT a fancy girl, I am realizing.

But even as I question all this (too much couch time this week, I know!), I can¡¦t forget the love and laughter that filled the room last Saturday night. So much positive energy¡K

I also had a couple of comments on YouTube about the slide show. 2 people expressed¡Kum, irritation? that I focused on the kids too much and not adults. I realized (oh, so much self-realization!) that my skin is rather too thin when it comes to this! Dave heard (when I was telling my parents) and was ready to go ninja (which from the guy who¡¦s picture is next to ¡§even-tempered¡¨ in the dictionary is saying something). I just gently pointed out that many, many of the adults in the slide show DO have NF. Just because people don¡¦t have Obvious cases of NF doesn¡¦t mean they should be judged negatively¡Xnot every devastating tumor shows, you know? (and really, anyone WITH NF who saw Dave would probably be suspicious). I was just surprised that people would resent the kids. I¡¦m married to a grown up with NF. Many of my best NF friends are adults with NF. The whole point of our work is so our kids CAN grow up to be adults with NF. Sigh¡K.

Oh well. No good deed goes unpunished. I guess my days of supportive film making may be numbered! : ) It¡¦s all good, but I may take the video down.

Can I go to Great Wolf Lodge right now?

Anyway, thank you again to everyone for all your support. I just keep saying to people that we were so blessed last Saturday. So blessed. In this rotten economy, we did our best ever by well over $1000. A room full of kids and family and friends, teammates and fellow bt warriors, everyone came together so beautifully. Genna can¡¦t stop talking about how much fun it was, and Rosie has been singing Good Ship Lollipop out the wazoo! ;)

And yesterday I saw a bunch of girls from my high school class, it¡¦s our mumblemumble reunion year, it was so great to see everyone even if I was a lump!

So thank you¡Kplease pray for so many of our friends in the thick of things¡Kespecially those kids (ahem) in the slide show, Nora, Gabbie, Drew, Katsie, Emma, Joey, Jenna, Mya, Jaxon, Gigi & company, and everyone. Dave & Andrew are prepping for their next race, in April. I think I botched things and won¡¦t be able to go, which is killing me ((I am so dumb), but I have to be true to my word & I committed to something else. Gabbie & Supermom Ori are planning a gigunda Fest for a cure in June, check out www.caringbridge.org/visit/gabriellehughes to see what they¡¦re up to¡Kand thank you for everything¡K

Please, too, pray for little Erin, a bt warrior in a terrible place right now. She is so sweet and cute and pink and reminds me of two little dancing girls in my house¡K ƒ¼ www.caringbridge.org/visit/erinroderick .

Ok, better go see what G & R are up to¡Kwe need to dig out our bathing suits! Hopefully nobody else gets my feverfest of woe¡K

Peace,

Kristin

Oh, and happy St. Patrick¡¦s day (from a gal who married into the Italian name but bleeds Irish!) and a happy St. Joseph¡¦s day on Thursday¡Ka week of feasting, hooray! I can¡¦t wait to make Irish soda bread¡Kmmmmm.

Sunday, March 8, 2009 2:20 PM CDT

Hey…

Almost incoherently tired, but pleased to say that the Coffeehouse for a Cure seems to have been a success. A few detaily ughs, but nothing too cataclysmic. I do have piles & piles & piles of leftover cookies. Note to self for next year on quantities….and now I know which ones people like the best (the choco-dipped-blue-sprinkly ones, which shows I have very smart and tasteful friends).

AND yesterday was the Friends of Jaclyn RU Lacrosse fest of all…so first we blitzed through set up, then G & R and I ran down to RU…to our delight, we got to be on the RU sidelines, G was honorary captain and got to do the coin toss…even if they did announce her as Gina Camioli (the funniest part of which was all the girls on the team stage whispering “IT’s GENNA!!!”, until someone ran over and told the announcer. Genna loves being with the girls, and Rosie loved playing with the extra lacrosse stick. Genna & Rosie were part of the pre-game stick-raising high fives, and part of the end of the game hand shake with the other team….they felt really loved through the whole thing.

Genna has a Really hard time following the game visually; while her sight has vastly improved in the last 2 years, this kind of sport is very, very hard for her to follow…so I did a fair amount of play by play, and she made herself comfy on the new turf. She couldn’t quite figure out the concept of turf…”So, how does it grow?”…she just couldn’t figure out fake grass that was soft and, to her eyes, real.

Our only trouble came when Rosie needed to go to the bathroom…the security guy didn’t want to let us back over to the sidelines. Good thing I could outrun him…er, explain that my daughter was Genna, the one whose name they kept saying (never did quite get “Camiolo”) with the Friends of Jaclyn announcements. The girls all had on FoJ t-shirts, raised $ for FoJ, it was awesome!!!

I had megaphones for the girls, so G was Amplified in her loud cheering; the team WON in a double overtime, Genna was bubbling over the whole ride home with “they said I WAS THEIR LUCKY CHARM, MOM!!! I WON THE COIN TOSS and THEY COULD HEAR ME YELLING “DEFENSE!’ SO THEY DID GREAT!” (she said this to me about 5 times on the ride home!). Thank you, thank you, thank you to Coach Laura & Coach Kelly & Coach Brian for welcoming us in, and to all the RU players, Genna loves having big sisters, and we totally are following your away games online. We are going to figure out when we can get back down to CHEER some more! : )

Then we raced home….to begin the final frenzy!

I think things went well, like I said earlier (good Lord, I am tired). We had some nervous moments over the coffee…I should have taken a picture, we had about 6 coffeepots of different sizes perking in my house, my mom’s house…then we filled the Thermovats & were off (ish). The final setup was a bit hairy (special thanks to MacGuy-Ceril-ver who rigged up the back drop with paper clips & an American Flag (really)), the coffee stirrers Disappeared (only to appear last night in our clean up at home…!), and our one beverage donation kind of never materialized…but people seemed happy.

I wish I could have said hi to everyone…I got to see Susan & Jay (hooray!), Angel Timmy’s mom & dad, and the Dickey family…we met Caitlin at CHOP last summer…I can’t believe you guys drove all the way up!...and my friend Dave from high school who donated the helmet stopped by…so good to see you, Dave. Andrew & his friends worked like busy bees, his whole baseball team was there (we are so grateful to all of them for coming…and they made 2 spectacular baskets WHICH ANNETTE WRAPPED SO I DIDN’T HAVE TO thus gaining my eternal affection.

We moved a lot faster than last year…the performances were (I think) really good…I personally only have short video of Genna & Rosie (and unfortunately I’m in part of Genna’s, which is not cool), but I know we have a full recording somewhere. I know I have SO MANY people to thank…I am just so tired, Daylight savings and not sleeping at all last night have kind of have me incoherent today.

I always wish I had said MORE about NF & why we do this, I get all nervous & stupid.

One of the coolest things was the raffles…and how in many cases, the PERFECT person won the perfect prize…which is crazy since I dumped the tickets in a bowl, held the bowl over my head, shuffled the tickets and then pulled one without looking…a friend who won the organic turkey last year & loved it but couldn’t come this year so sent $ for tickets with my mother-in-law won the turkey AGAIN!...Andrew’s classmate who carried up the snack basket actually WON the snack basket (which was a riot), Susan got the picture painted by my sister and one of Marta’s special projects, baseball team folks won a bunch of stuff, there were just a lot of specific moments of Oh Hooray…oh, G’s teacher won the kids’ books basket, Rosie’s teacher won a door prize…just nice moments. I love handing out prizes. I wish I could do that as a full time job, just the calling of prizes. It’s awesome.

And…I am so tired & there’s no short way of this story…so here goes.

A lady came up to me at intermission to say she had heard the Matthew West shout-out on the radio on Thursday…and I think recognized our last name, my brother-in-law was the youth group guy in her parish for years. Her family was really helped out by the radio station a year ago when they tragically lost a child to illness…a musician named Mark Harris really reached out to them. So she came to the Coffeehouse bearing a huge folder of photos from concerts she’s been at, all for G, pictures of Matthew West, Mark Harris, Toby Mac, Mark Schultz, Casting Crowns…all G’s faves. She also had a huge stack of magnets that we added to the prizes…

And then she won the guitar.

And gave it back to Genna.

!

I didn’t quite realize, in the “I AM NEARLY DONE BEING “ON!”-ness of my mental state that she had actually GIVEN THE GUITAR TO GENNA. Dave got all ferklempt (to quote him, “now my Italian is coming out!”), Genna didn’t get it until someone told her offstage…

Wow.

What else can I say to that?

Thank you, Arlene. We were blessed to meet you, and Genna never WILL forget that night, or all the love people showed her. Thank you…

Uncle Mark tuned it, and, in Genna’s words, “He gave me a peg!” (a pick, G, a pick!) and we have now christened the guitar, as it were, by having a rousing chorus (well, by me, at home) of Momma, Don’t Let Your Babies Grow Up to Be Cowboys (I wasn’t kidding, that really IS the only song I know on the guitar).

Really, a kind of magical end to a great evening. Well, the end before the clean up! ; )

We’re still working things out, but for the EVENING we are about at $3500…well more than prior years. We are so grateful…with the donations online, and Dave’s company…we’re looking at over $6000…

Which is insane, for an evening of coffee & cookies and our friends singing songs and Genna playing the kazoo…

I wish some CTF organizational folks could have come. It’s all good, we unfortunately are the week before a huge NJ event (that we were invited to be a part of, but really couldn’t…$80 a ticket is just too much these days for most of our friends, and we want to be able to do these things with friends & family)but because of that, well…I guess you could say we saw the effects of our scheduling yikes! But it’s all good…we’re all working for the same thing, even if it’s on different scales. Maybe next year!

Ack, SOMEONE just wiped her nose on my couch!
Sorry…

This is an epic, and everyone is talking at me now, and alas, there is still a MOUNTAIN of cleanup. At least I’m working my way through 50 cups of leftover coffee…and the cookies (I had 1 cup of coffee & zero cookies last night! ALAS!).

Thank you all so very, very much…for everything…for all the moral support & encouragement and everything. We so appreciate you all…and especially to our families, who were there as I unraveled yesterday a.m. (eek) and for Meg, Ceril, Suzanne, and Marta…for everything.

Peace out, all….and when I can get the dang video to load somewhere, I’ll let you know!
Peace,
K

Friday, March 6, 2009 9:50 AM CST

Hi, all—

So today I have 27 seconds, not even 30.

Yesterday Matthew West went on our local Christian radio station and gave quite possibly the most beautiful shout-out to Genna I have ever heard, like a “make the mom all ferklempt before coffee” kind of shout-out….so encouraging, really kind…we are so grateful, and utterly humbled by this whole turn of events.

I panicked, then, and made more cookies!

Yesterday afternoon the guitar arrived, autographed by Matthew with Phil. 4:13 under his name…which is funny, because 42,000 years ago when I was young & unafraid (and dreams were made & used & wasted…ooh, sorry) and involved in Church group stuff, we had to make a HUGE banner with that verse on it.

I am not so hot at banners.

Anyway, the guitar is Awesome, on Facebook I put up pictures of my kids enjoying the box! It’s all fun & games until Genna decides to stand the box up with Rosie in it, and then Rosie face plants the other way…oh, the wailing! Well, and when Andrew wouldn’t get OUT of the box. And Genna tried to pull his socks off. And he kicked her (which was, quite honestly, her own fault). But again, oh, the wailing!

But the guitar is AWESOME. AND they sent autographed CDs, and a huge pile of other artists’ cds from Matthew’s record label. And t-shirts for the family.

Genna was agonizing over the t-shirts, there were 2 she LOVED: both are big, but I can adjust them. One is pink, and says in little letters, “this is my Happy shirt” (name of one of MW’s albums), the other is kelly green and says in gigantic letters JESUS IS MY EVERYTHING. Genna had both in front of her…and the conversation went like this..

“I LOVE pink…but this one (the green) says JESUS in Big letters…but I AM always happy….”

G is my hero.

Food has been a struggle again, activity more so, I’ve been bailing on our early a.m. workouts (I am just not awake). But she is, at the end of the day, such a happy kid.

And Rosie has been doing a Christmas style countdown… “ Only TWO MORE DAYS UNTIL THE COFFEEHOUSE!!!!!” etc. Yikes!

Andrew is recruiting friends to help…our college contingent returns tonight & tomorrow…people are being so generous. It is insanely humbling.

Dave took off from work today, thank God. I’m a little freaking out. We got a LOT of last minute raffle things, which are a huge hooray, they just need to be wrapped & listed & numbered (for the legal stuff afterwards). I am Done baking except for lemon bars. I was going to skip those, until Mr. Blue Eyes said, “but Mom, your lemon bars are my favorite…” . I need to print the program (hopefully I have all the thank yous on it!) and the raffle list, and then run like a maniac.

Please pray, in the silly detail way, that I can get the projector I borrowed to work with my pc. Otherwise the slide show will be challenging, even the video format isn’t coming through right somehow.

Tomorrow will be crazy…we are going to the RU Women’s Lacrosse home opener…looks like G may get to do the coin toss! (I have to tell her how to do it, or she will just toss it, she is so guilelessly literal). Then race home…and we’re off!

For all our NF friends…know that you are so much in our hearts as we slog through all this. Really, your faces & struggles & joys drive us onward.

Wishing you all peace…and hopefully someone other than me brings a camera this year so I get some pictures! : )

Peace,
Kristin

Wednesday, March 4, 2009 4:30 PM CST

I have like 30 seconds...

Just wanted to say to anyone local (or in our time zone!) that Matthew West will be on 99.1 fm tomorrow morning to give a Coffeehouse shout-out. Genna is agog with delight, as you can well imagine. You can stream Star 99.1 online at www.star991fm.com .

I am fluctuating between peaceful and panic, which I guess is about par for the proverbial course. I hope to have all the raffles organized by tomorrow (most are wrapped or signs are set up, just need to finalize the master list, the numbering, etc.). We had a music rehearsal the other day that went well...and I have 21 batches of cookies done. Phew!

Check out Coffeehouse for a Cure on Facebook for more info, pictures of cookies, and a video....

Rosie is asking, "Mommy, if Genna wins the snack basket, will she have to share?"...as I type. Apparently Genna told Rosie...well, guess! : )

poor Rosie is FINALLY better, she was so, so sick. I hope everyone stays healthy.

Please just pray everything comes together...and that people have a good time...and hope fills the air. Really, it's all about hope for our kids, I have to keep saying & saying that.

must run & get dinner finished (simple meals this week!) so we can finish keychains & basket wrapping tonight. Tomorrow the guitar from Matthew is coming (Genna is ECSTATIC)...and then the final push.

AND Saturday is Friends of Jaclyn day (I think) so Genna & I (maybe Rosie?) will be dashing to the RU Lacrosse home opener on Saturday afternoon! We are excited to see G's big sisters...they are off to a great start this season. This does mean I have to get things DONE in the next 2 days...

must run...please pray especially for Carly, getting re-ported tomorrow. The reality of NF is not nice...Kelley & Adam, we are pulling for you guys.

And for Gabbie, Katsie, Nora, Drew & Joey, Mary Margaret, Emma, Lauren, Sarah, Timmy, and SO MANY NF kids...always hope, always, always hope.

peace,
k

Saturday, February 28, 2009 9:36 AM CST

Hi, all…

Things are insanely busy…normal busy, and Coffeehouse running in circles busy. A few details are still not quite as finalized as I wish them to be (!), but I hope I can really blast through things today…I need more butter, need to figure out coffee…yeah, key to a Coffeehouse, right? Our donor from last year won’t do it again, so I have to figure it out. I don’t mind making the coffee, we just need to make sure we have ample power in the Church basement, which was an issue the first year…and then I worry that the set list is too mellow and that folks coming who haven’t come before will be like wow this is dumb and if I don’t make enough cookies to counter any possible other lapses then disaster will befall……..

Yeah, not sleeping so great! : )

I am feeling a bit stretched. I know stretching is good, but ugh. I am Quite Comfy writing out what I’m thinking, need, etc. Actually Saying It In Front Of Other People makes me want to hide under my bed. And now I’m at the spot where I need to really ask & then present and ack.

My girls were supposed to have a fun overnight with Rita last night…everyone bopped off so happily…2 a.m. the phone rings, which is Never a good thing…poor Rosie threw up and had spiked a fever..home they came! Poor everybody! I was supposed to go to Andrew’s basketball game this week, and then all of us were off to the Cams for Peg’s birthday…looks like I’ll be on home patrol. My poor Rosie got sick right after last Sunday’s update, too…high fever, ugh, then better…weird stuff.

Genna has been working REALLY hard in school to not be so talkative. She’s been a bit bummed the last week or so, not sure what’s flying there. It’s unlike her to be sad. Still, there have been moments that perk her right back up…a pile of raffle stuff from Marta, a hug from baby cousin Owen, an e-mail from Joel West…

Big excitement on that front, Matthew West is sending an AUTOGRAPHED GUITAR for the Coffeehouse!! Wow…we are astoundingly grateful…AND he’s going to go on our local Christian radio station and give a plug for Let’s Cure NF already!!! I am so nervous but grateful and happy….I don’t want to let down the folks who have been so generous to us.

(for those who aren’t as familiar with Matthew West, he is a Christian artist who not only sings & records on his own, he writes music for Mandisa, Rascal Flatts, Point of Grace, Salvador, and a bazillion more people I don’t remember…haven’t sipped my coffee yet today! Matthew has been nominated for 5 Dove Awards, the Christian Music Grammy type award…and his music is pretty amazing. A lot of it has spoken VERY personally to me…and Genna is a huge fan, she sings along and totes her CDs everywhere. I actually haven’t been able to pry them away from her long enough to load them into my Ipod! So that’s Matthew West…we are kind of amazed by , well everything about this). I’ll give you the definite, but right now it looks like Thursday morning at 8:05 a.m. EST Matthew will be on Star 99.1 …you can stream it live at www.star991fm.com

WOW.

So for the first time ever we have some gigunda Coffeehouse raffles…the Giants helmet, the Guitar…and we have about 30 other things, holy cow it just GREW. The Choco Survival Kit arrived this week, THANK YOU Jarego family! Looks So yummy (or, as G said, “that is so hilarious, mom”—it looks like a little old fashioned doctor’s bag!). Marta is the Queen of raffleness…Genna’s wonderful art teacher donated an original piece of art, which is gorgeous, there is just stuff from generous people everywhere.

It’s all very humbling. I don’t want to blow things for all the folks helping us.

Because while I prattle endlessly (yeah, I admit it’s endless) about cookies and details and blah blah blah…this is about our kids. G is cutting paper in shapes (which she just wrote “Rose Feel Bet…ter” on ) , poor Rosie is sick on the couch…Thursday was Sandra’s birthday in heaven…Katsie is battling headaches and so much…Drew is slogging through chemo, Joey is scanning, Gabbie is mighty every day in her fight, Nora is gently fighting to the end, Carly is preparing to start chemo again, Lauren is getting through each day, Emma is just done with chemo and adjusting to living with NF tumors off treatment…and there are so many others…

WE have to do this for them. Everyone lives so far away. This is the only way I know to try and help. So many different battles…I really and truly believe that our time of stability can’t be wasted. And I know that while in the big picture our little night of Coffee and cookies and people I know singing and lots of set up and clean up don’t really make a huge dent in NFness, I hope we can help build hope. It is just so uphill both ways sometimes. I don’t want to let people down.

Ack, normalcy: Our fish tank filter just blew while I was sitting here, this isn’t good. Dave just spent 10 minutes whacking at it (ok, I stopped typing to help)…now we have traumatized fish in a cloudier tank. Ack! Wasn’t looking to get a new tank today, argh!

And I should have exercised today…that 2 a.m. fest of awakeness blew my early start to the day…and strangely no one wanted to wake She Who Hands Out Saturday Chores…eek! I feel like a blob.

So I must stop typing here and get to work. I only have 2 batches of rugelach, 2 batches of oatmeal, and 4 batches of chocochip done (probably over 300 cookies so far), the kids want to help but I need to get things done. There is a chance of a snow day on Monday…while I am SO READY for spring, I have lunch duty on Monday, so I am praying for a snowy stay home and bake day! Shameless…

G just finished her card for Grandma. Dave is scarfing cereal, ready to take Andrew to his game. Life goes on. Even NF can’t make regular life stop, it just makes it really ugh sometimes. For us today is good…my heart is very full for all our friends for whom today is a full on battle day.

I’m going to keep the slide show up. Actually, my calls about projection equipment need follow up…ugh. Anyway, here it is…I’ll try to update sometime before Thursday…and hopefully I can get some other pictures up, my laptop (picture home) has been obnoxious.
There’s a LOT of activity going on around me…so sorry if this is incoherent!

Thanks all, for all your support.

Together is such a big deal. So much of this is very lonely, together really helps.

Off to make toffee bars…

Peace,
Kristin

Please, too, remember Timmy’s family on his birthday tomorrow…thoughts of heavenly cake only go so far, you know? Peace to all our angel families this week… : (

Sunday, February 22, 11:46 a.m. Eastern time

I'm leaving up the slide show...even though it's missing the last slide (argh!), it does illuminate Why we do all this stuff.

But I figured today merited an update. Not only because it is officially the 19th annual Chocolate is the World's Greatest Natural Resource Day...but 3 years ago yesterday G had brain surgery.

3 years ago today I had remarkable relief in the midst of the desperation we were slogging through, I was so relieved G made it through surgery, so relieved all those warnings on the papers we signed had been avoided, so insanely relieved I almost forgot WHY we were opting for this...

A surgiversary is a weird thing. Remembering dates like that...well, it makes me feel like we're faking stability or something, like REALLY that WAS our life...and I feel grateful to be where we are (3 years ago the docs were...well, we didn't think our family would look the same today, let's put it that way), and guilty that we escaped when so many others haven't.

Today, though, we are good. G has a horrible cold, she seems slightly better today but yesterday I thought she was headed towards really sick. We are hopefully running over to church for free ice cream! (what's not to like about that?) ; ) And then I need to work on arranging baskets, fiddling with the set list, and making bracelets for the Coffeehouse.

Tomorrow I start to bake (I freeze the early batches).

So today, the beepings and whirrings of the PICU are a slightly more distant memory, but the gratitude for where we are, even on hard days, is undiminished.

wishing you all peace...and please pray especially for the Blumberg & Pauxtis families in this birthday week for angels Sandy & Timmy. Our hearts are with you.

peace,
k
now to go referee my children, who are in a great fit of normalcy fighting with each other...

This is why we do the Coffeehouse.

peace,
Kristin

and p.s. the biggest Thank you in the universe to Dave Newman, who donated an autographed Giants Helmet...signed by Phil Simms, Bill Parcells, and Lawrence Taylor. We are a giant wow here...just insanely encouraged...

NF IS such a marathon. Feeling a bit tired these days...this kind of thing just lifts us all, helps us to NEVER STOP FIGHTING FOR A CURE.

peace, all....k

Monday, February 16, 2009 10:19 AM CST

Hey, all, happy Presidents’ Day.

I don’t really have piles to say (!), but that last update was kind of a bummer.

Andrew has some nasty bug, high fever & cough, but I think we can ride it out. He was no worse today. Tomorrow his class has a trip to hang out with the CFRs in Newark (a Franciscan order…super cool, awesome guys who work with the poor). He really wants to go, so I hope he feels better.

At least his history project is done. I am practicing Detachment and Letting Go (while the history nerd/mom who was a teacher & put together all the content guides for the history fair in me is saying REALLY??? That’s all you’ve got???). sigh. I need more practice.

Genna and Rosie and Dave are off to visit Grandpa this morning. We had a fun weekend of busy-ness, family over for dinner on Saturday, some Valentine’s treats (cream puffs!) and Coffeehouse work.

I am officially nervous. Details are starting to swarm. We have to call the parish office this week, that makes me nervous, too.

The Coffeehouse has a certain…vibe? Relaxed, a tad mayhemish, lots of cookies, lots of love…really, it’s almost tangible, and I am so NOT Miss Huggy KissyFace (more Ms. Personal Space is Best Measured with a Yardstick)….but the Coffeehouse is very much an evening of hope and love and awareness and together we can maybe beat this dang thing-ness…

Yes, there is hugging. And it works on Coffeehouse night. ; )

I think we still have to sell the merits of that a bit. And I’m a psycho planner, I have to make peace with the mayhemness. So many people so generously help us, bringing everyone together just gets a little crazy. Good crazy, but crazy nonetheless.

G and I are trying to figure out exactly what she is going to do, it’s hard to find a follow up to “God Bless My Underwear”.

G & I went shopping for a few basket supplies yesterday. She is just so funny. The child NEVER stops talking. Ever. She just has So Many Words. Today we exercised (many words, not so pleasant! ), I need to find new ways AGAIN to motivate her. Together we CAN be healthy! But eek, it is a battle. She is excited because we are going to make stromboli for dinner, and she gets to help.

This week looks to be kind of insane, with the history fair Thursday, and Chocolate Is the World’s Greatest Natural Resource Day on Friday night (a small get together this year), and lots of Coffeehouse stuff. I have a slide show done, it just needs some tweaking. I think it’s not stupid. I hope. The beautiful faces of our NF heroes will carry it…I hope.

Whoa, a hawk just flew by. Cool.

The worst part of Andrew’s illness is the continuous SpongeBob in my living room. I think I have to go stage a Remote Coup and silence the Sponge.

Anyway, please keep praying for Luke as he recovers from surgery; Gabbie, Drew, Carly, Katsie, Nora (sweet Nora especially, she fights peacefully on), Lauren, Erin, and so many other kids.

Please, too—if you could pray especially today for Matthew West’s wife, who is having a baby over a month early due to some complications. Genna is very concerned…she worries about people (yeah, yeah, the apple doesn’t fall far, I know). But please, if you can pray for them today, that would be awesome.

Thank you, always, for all your prayers and support. If you are in the Jersey area on March 7, come on over to the Coffeehouse. I want to hit the 1000 cookie mark this year. If I could bake us a cure, you know I would.

And dang it, it would be Delicious.

Peace,
Kristin

Wednesday, February 11, 2009 8:28 AM CST

Hi all…

Happy Spring-y day!
Ok, so it’s actually only 40 degrees here, but the forecast says NEAR 60 today! It’s sunny…taking Rosie out to the bus, I saw one tiny sprout of an early bulb peeking through in my garden…the same garden that was under 4 inches of snow a week ago!

The snowman above was made on Sunday…by Monday morning he was a puddle of his former self! ; ) Apparently Sunday’s bedtime story was an elaborate and grim tale of the Snowman’s Demise, which my girls & biggest boy all enjoyed way too much!

It’s an odd kind of week.

Sunday, Genna sang with the kids’ choir at church, a favorite activity for her. During the first reading I had this weird déjà vu kind of feeling. I would like to say that every week at church I sit with rapt attention, drinking in every word…but then I would be a big fat liar. I try, I really do, but shopping lists and to-do lists and random cartoon theme songs of the early 80s just get in my head…so it was odd to have this feeling of rememberingness.

Then I recalled that in our liturgy the scripture runs on a 3 year cycle…so 3 years ago we had those same readings.

February, 2006.

Nothing like flashbacks at church! Ack…

I remember sitting in church that Saturday (we went to the vigil), and as each reading came out…first from Job, then a psalm about the Lord healing the broken hearted, then the gospel about Jesus healing all sorts of people…I remember just crying and crying and trying to not be obviously crying in church (it’s kind of WAY not cool), and thinking Hello? God? …and it was a Mass in remembrance of a parishioner who had been killed in a car accident the year before, a young dad…so other people were randomly crying…and then a guy got up and played a tribute solo on a harmonica, which struck me as wildly and inappropriately funny, so now I’m crying and giggling…after Mass a friend in the row behind us, a woman recently widowed (husband literally dropped dead, it was awful) asked how I was, and we both sort of snuffled at each other…sigh.

And this week Fr. Brian talked about Lourdes…a shrine in France where people visit for healing. Someone offered us a trip there once, Genna is petrified of flying, and I wasn’t really comfortable with me & G heading to Europe alone…and I don’t know anyone who actually HAS gotten better there, everyone I know who has gone there has died. But the whole homily was about healing and etc., all geared at the kids…

Normally I really & truly do feel mostly balanced. We are in a good place. The issues of every day are trying but really in the big picture of life, manageable. The parental brain apparently has a lot of scary cabinets that can come unlocked at weird, weird times.

So it was an odd experience, really.

Sunday night the kids and I went to see Popple down in Flemington. My girls are Shameless Groupies, they sat Right in the front, and pretty much had their lives made utterly complete when Dan (of Dan & Kyle, aka Popple) said, “Are there Camiolos here tonight?” and then “YES!”. Genna practically swooned, it was like watching the reaction of teen America when the Beatles showed up, but without the screaming. G & R have not stopped talking about it ; ) . And then afterwards Rosie bounced over and begged me to let her get her Popple shirt signed…so both girls marched over and now have autographed Popple shirts. (www.popple.us)

Popple is silly happy stuff. I’ve been singing the cheat code to Contra for days…

I am in full-out Coffeehouse prep mode the last 2 days. I bought a ton more beads to hopefully sell bracelets & such at the Coffeehouse. I can see how beads can be frighteningly addictive. I’m also trying to put together a slide show, I’m about half way done. I still need some more pictures, but I think it’s looking pretty good. Even if it ultimately is kind of lame in text, the pictures of our kids & friends are awesome, so hopefully that will carry it!

My brain is so full…so many friends are scanning, testing, surgery-ing…there’s a family online that I’ve known but only recently come to know a bit more who just had big time surgery yesterday. The more I read of their story, the more astounded I am by the similarities between Luke & Genna (except that he is non-NF, their tumors are in similar spots, so many of their struggles kind of match). And just reading about his surgery, seeing the scar…

3 years ago next week is G’s surgiversary. I didn’t take any pictures, I probably should have, but until the last 2 years I never really brought a camera to the hospital, I just couldn’t. But the pictures in my head are still really clear…and the fear…the desperation…American Idol on every tv in the PICU… ; )

Good grief, I WISH the scary cabinets would stay dusty and locked…

So as I prayed for our friends (especially Luke) throughout the day yesterday, I finally was able to munch on chocolate again, which I did with abandon. Actually I didn’t go too crazy, but it was delightful. Funny, a month without chocolate & for the first time ever we have a)no leftover candy canes from Christmas b) no leftover cookies of any non-chocolate variety c) very little leftover Halloween candy (some always lurks in corners)…d) we tried a bunch of new dessert recipes…

You think maybe my problem is more Sugar than chocolate? : )

Alright, better run & finish up some History Fair stuff they need for school. G has an appointment with Miss Nora today, and Art tomorrow, and dance on Friday…she’s been in a mini-funk, need to figure out what’s up. She seems really anxious. Sigh.

Please pray for Luke especially today (on caringbridge he’s pa/lukeronco), for Charlotte who scanned yesterday (thought it was today, frickafracka), for Gabbie & her supermom & all their testing, for Drew on chemo, Carly re-starting chemo (sigh), for Nora & Katsie and so many other NF and brain tumor kids battling on.

In weeks like this, when I reflect on where we were 3 years ago, and where we were told we’d likely be today, I have to say with every fiber of my being and every beat of my heart that we are lucky/blessed/fortunate beyond all. I am so grateful. I have to be ok with the fact that those scars are deep, and just keep moving. My heart is so full for all the kids fighting so hard. We’ve been there…our hearts & prayers are with you.

Peace, all…

And don’t forget, Coffeehouse for a Cure is March 7 at St. Mary’s . I’m hoping it all comes together, I’m getting a tad anxious. Next week I start baking…

Peace,
k

Saturday, February 7, 2009 2:23 PM CST

Hi, all…

I know, after the deluge of updates I’ve been a veritable desert of silence. It was a strange, busy, but good kind of week, I’d have to say.

And only 3 more days until my choco-fast is over. Not that I’m counting. Or dreaming (again!) about accidentally eating chocolate…! Which falls under “you know you’re too scrupulous WHEN…” !

So, this week…well, I survived lunch duty, got Genna into the dentist’s office…where they PULLED her broken tooth,eek. But ah, technology, no trauma! When I was her age my dentist decided I had 4 teeth that really should come out, so he took them out. No novocaine, they weren’t loose (as I recall), it was a Mess, and I hate causing a stir so I just sat there and let it happen…G’s only moment of ugh was when the dentist used a minty gel to pre-numb the area where the novocaine would go…Genna HATES mint (her “peaceful” medicine used to be mint…until the day I discovered one very guilty looking child and one very relaxed kitchen sink, then we learned to swallow pills! ). The dentist took one glance at her after he got her up for more x-rays and said “Whoa, if looks could kill…!” .

G Really Hates Mint.

But she was a perfect trooper through the rest of things! And the tooth fairy gives more for teeth that are forcibly removed, which pleased G immensely.

I also spoke to 2 of Andrew's teachers, his school woes are more a case of 13-year-old-boyitis than academic, which was a little encouraging. Ish. ; )

We had more snow this week but no snow day. Still, for 2 days it looked so beautiful outside, like “a famous picture” to quote Rosie. Every branch was snow covered, the cardinals in our yard just looked liked postcard models (who knows, maybe they ARE models?). Today things are finally warming up.

I never heard back from school about my scathing (gentle) letter, but I also haven’t been burned in effigy, so I figure that’s a good sign. Genna is excited because her teacher (who really Is a Good Guy) designed a system for her to work on her impulsivity, and she calls Aunt Rita every day to say exactly how she is doing. (thanks, Rita!).

Our great piece of excitement was a phone call from Joel West, Matthew West’s brother (for Christian music fans, you likely know who Matthew is…or have heard other artists singing his stuff, he is a really talented song writer…and I am insanely picky, so really…good stuff). G sent Matthew an e-mail…well, I don’t want to holler too much, but we are really excited about possibilities…as a gal who has made up songs about God’s Joystick Being Stuck on Smite, you know I don’t super-spiritualize things…in this case it Totally seems unquestionably clear that God is doing something Big, the timing of G’s e-mail to Matthew & initiatives he’s working on…amazing stuff.

Amazing enough that I was rendered temporarily speechless. Really. Joel is my witness, for about 8 seconds I had nothing…

So if you all can say a prayer that whatever It is that is coming together works out in perfect timing and clear whateverness (certainly more clear than my dancing verbally around it…you think this is awkward, you should see me Really dance…oh, the humanity!)…

I was beyond utterly encouraged. Insanely encouraged.

Post scan—especially good scan, somehow, after a bad scan it’s a different beast altogether—anyway, post scan is kind of discouraging. The tumors are so…there. Large (in G’s case particularly). Daunting. Thumbing their cellular noses at us. It’s so easy to feel like we aren’t getting ANYWHERE in finding hope. I know that NF can’t technically be cured. It’s genetic. But we need to find treatments and therapies and ways to prevent the crazy tumor growth…that can cure and curb the effects of the dysfunctional gene…THAT we CAN do, but post scan, post looking at the pictures, looking at the history…I feel like a speck in the war against the Mighty Tumors.

My conversation with Joel gave me such hope & encouragement…it’s hard to quantify.

So thank you, brothers West…you all are in Our prayers…and I will update here as is appropriate. (or I’ll sort of gleefully dance Around things, I’m sorry!) : )

And daily life continues…Coffeehouse details are a little crazy (!), I escaped for coffee with a friend this week (!!)…good stuff, all, really. My beads arrived this week, huzzah! I made a really festive awareness bracelet, green & blue for NF, a crystal butterfly for Hope, a smiley face for the G-foRce!, silver for brain tumors…ok, that sounds scary, but it is so lovely. I am still learning how to do all this, but I hope hope hope to be able to make something beautiful that maybe can get some more dinero to CTF, fund itself (ie I am agog at how the dollars add up when buying piles of teeny tiny rocks and Swarovski crystals!), and maybe have a little bit left I can put towards G’s art therapy or cognitive behavioral therapy.

Beads are INSANELY FUN. And I finally caved and learned how to use the tools a little bit.

Just today I figured out how to make an online donation thing for the Coffeehouse through www.sixdegrees.org , so if anyone wants to donate but can’t come, this is an easy way to do it. We’ve had some requests…please, you all are so supportive, I’m not fishing here. But for folks who wanted to, hopefully here it is! If I did it right, a little “badge” that people can click on should show up on this page & maybe on my facebook page. If anyone DOES use the badge, PLEASE “designate” the donation for “G-FoRce! Coffeehouse for a Cure” or “Camiolo Coffeehouse for a Cure” so the folks at CTF know that our little event does something. They give us a lot of support, and I want them to know we appreciate it & that it matters a lot!

Phew! I am so not computery.

Oh, along those lines, if anyone who reads here friends me on Facebook and I don’t know you, can you tell me you know me from here? I don’t usually friend folks I don’t have some random knowledge of (ok I’m cautious), but if you are a cb friend and I just don’t recall you, please remind me! (I’m a doof rather a lot)!

Mmmm, we made carrot cake today & beef burgundy, my house smells Good. I haven’t made either thing in years. Genna told me her arm HURTS from all the carrot grating. She is not convinced about the beef…no one had any qualms about the cream cheese frosting for the cake…go figure!

Tomorrow Andrew has registration (gulp) for high school. Dave is supposed to try & get to some of his first Knights of Columbus meeting…did you know they don’t just GIVE you the Napoleon hat? ; ) And we’re seeing Popple tomorrow night, so Genna & Rosie are in a tizzy. (www.popple.us). Oh, the silliness!

Prayers for all our friends, especially Gabbie this week…all our NF friends particularly are much in my thoughts these days. Our bt friends, too, our worlds overlap so much.
: ( For Luke, having surgery at CHOP, and Lisa (a cb friend!) having a pile of testing at CHOP…you all are in our prayers.

Especially, too, our buddy, Charlotte, scanning...busy week at CHOParoni...

And please remember the family of Kasey Radford, who earned his wings this week. Rest in peace, Kasey….11 years old…

Sigh.

In a jollier note, ,Happy Birthday to my brother, Rich!

Wishing you all peace this week…and anticipation not dread. This week I had a glimpse again of a future full of hope…and I hope you all get a taste of that this week, too…

Peace,
K

COFFEEHOUSE FOR A CURE IS COMING SOON!

(4 weeks, oh yikes!)

March 7, 2009

St.Mary’s Stony Hill, Watchung, NJ

To benefit the Children’s Tumor Foundation and help find a

cure for NF!!!

GREAT MUSIC, FABULOUS COOKIES,

AND AWESOME RAFFLES…

Come on down & bring the family! : )

Monday, February 2, 2009 9:10 AM CST

Hi, all…
Happy Monday.

I type really fast, otherwise I couldn’t be updating…today is INSANE. I have (grumble) lunch duty, then have to take G out of school for an “emergency” dentist visit (lost a filling or tooth or something, not sure what exactly fell out during the SuperBowl, ew), then back to get Rosie to dance, then I’m the driver for CCD tonight for Andrew…

To quote Sandra Boynton…”I’m very very busy and I’ve got a lot to do, and I haven’t got a minute to explain it all to you/for on Sunday, Monday, Tuesday there are people I must see, and on Wednesday, Thursday, Friday there are places I must be/with my most important meetings and my most important calls, and I have to do so many things and post them on the walls”!

PHEW!

That said, things are chugging along here. Last week was very irritating. G’s report card was totally wrong. Absolutely wrong. A gigunda typo. Academically, this answered a few of my questions (in at least 2 subjects she was 10 points higher! I knew she was doing better than the grades showed…and she was a bit lower in the subject I knew she struggled with, so that made sense). Unfortunately, her Wall of Soundness has apparently Not so much improved…which meant she couldn’t go out with Aunt Rita. I didn’t want to stick to my guns (oh, I did NOT want to!) especially since I was pretty steamed about the giant typographical mistake (must have just typed the wrong line in the grade book or something)…I was only upset because a) Genna was upset and b) I NEED accurate grades for her, especially since we are doing neuropsych testing in 2 months.

**********************************
AN UPDATE AFTER LUNCH: I feel bad now, I saw the person at school who made the mistake, she was upset almost to tears...oh, dear. Thank GOD I decided to just let this one go (after asking for it to be fixed, obviously), I only ranted & raved at a friend/relative or two, I know the person who messed up feels awful, and really, is it that big a deal in the larger picture of life?no...
**********************************

Genna was very honest and called Rita right away; while there were some (many) tears, she is determined to really work hard this quarter.

I also wrote a note to G’s teacher about BMI and fifth graders…well, in my files it was called “scathing BMI letter”…but now I’ve toned it down, one more gentle edit and I’ll bring it to school. It was the teacher, not the nurse, so my approach has to be a tad different, even if the message is the same. It’s just not an appropriate thing to tell 5th graders to lose weight (and then tell them they can bring in treats whenever they want…even if I think that sounds yummy, too!). Friday was a very crabby day for me.

Her brother brought home his report card, too. Let’s just say his social life is Over. The one peril (for him) of doing so well on the HSPT is that we KNOW he’s smart (which we always knew, but he denies it…as if that means then you don’t have to work?), we have written proof. I am finding this season of life challenging. (what a tidy way of saying AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAARGH! Isn’t it? ; ) ).

Saturday Andrew had sport stuff, we had a quiet evening at home, then yesterday we enjoyed a chili-fest SuperBowl! I made my first ever guacamole, yum. Great game, congrats, Steelers! Their owner, Dan Rooney, is a great guy. I am happy for them all.
Genna and I also went for a walk, it felt balmy at about 48 degrees! Genna was not amused to be walking, but we are fighting hard to make fitness not stink. We were up at 6:30 again today, doing our Muscle Mile. I have to figure out some muscle things; G has leg muscles that are so tight, or just don’t want to go…we saw this in swimming, and I finally realized in the Leslie Sansone workouts that there are some moves that are hard for G not because she’s tired or has trouble with coordination (the hands up in the air while walking is an amusing challenge), it’s that her leg muscles don’t go that way. Maybe yoga stretches would help?

I am so not fitness-y.

We might sign up for a 3 mile walk for NF; there’s a huge Jersey Shore Relay Marathon/1/2 Marathon & now a 3mile walk that we could do as part of the NF team. This might be a great thing for G to aim for, it’s in April and at the beach, what’s not to love? (ie.it’s FLAT. We are all about flat here). Dave wants to run a ½ and NOT collapse at the finish before doing Philly again in the fall, Andrew wants to do the relay with friends…maybe WE can do something, too!

I look so fabulous in neon yellow.

Strangely, G actually CAN carry neon, even if it’s generally an ill-advised fashion choice. That child can wear ANY color. Rosie and I look a bit scary, but G looks like an 80s video waiting to happen.

We noted with some amusement that Steelers player Palomalu (?) looks like he has Genna hair when it pops out under his helmet (his is curlier, but it looks kind of the same). Genna thought this was Very Funny.

Ok, must go do one or two or seven more things before I head out to lunch duty (sob!). Only one more week without chocolate…I only just started REALLY missing it. It’s good for me to do this, I know it!

Anyway, please pray for so many of our friends in difficult spots right now…

And peace today—
Kristin

The Coffeehouse for a Cure is on the way!

Saturday, March 7, 2009

St. Mary’s Stony Hill

Doors open at 6:30 for raffles

(and ok, some munching on cookies!)

$5 a person/$12 a family…all proceeds

benefit the Children’s Tumor Foundation!

Thursday, January 29, 2009 9:04 AM CST

Hi, all—
I know, I just updated on Tuesday, we are not exactly a mecca of grand happenings here…but you know how it is, this is kind of my overflow spot when my brain gets too full.

Just had a weird Genna surgical flashback, ew.

Anyway, life continues along its merry way. I got the report from Rosie’s MRI on Tuesday, AFTER my cheery update, which is probably better. Not sure how I missed the last point on the report, the one that used words I didn’t know and measurements I did (hey, the metric system is scarier when talking about my child’s head and random things that shouldn’t be there)…after a few frantic e-mails, some medical research (now I know what the pinna is), and some random maternal angst, I think we’re ok. I’m not totally satisfied, but I SAW the scan—I could look at it again, but I just don’t have time to be an emotional speed bump again today. I know there’s nothing NEW, it was just the quanitification of the known whatever with a different vocabulary that threw me for a loop.

Which is a much more vocabularious way of reporting that my reaction was pretty much a sustained AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGH!!!

I am grateful for our doctor, who for about the 87th time talked me off the ledge. Things ARE stable. Including the neck in Rosie’s scan just…well, things got observed differently.

Stable MRI sadly does not always equal Stable Mom!

The girls also brought home report cards on Tuesday…Genna is doing ok, a few areas we need to work on (but I have some thoughts about that both as teacher and as mom), she has been more peaceful in class, which is huge. She was SURE she had done badly on the behavior part, she just TALKS constantly. But she is working hard, and improving.

Rosie’s grades were great, and she, too, is less “MissMunozMissMunozMissMunoz” all the time. Both girls are going out with Aunt Rita tomorrow to celebrate their hard work!

Genna also came home with a height/weight thing (I think the school has to do that?) with her BMI on it…of course she was more than at the hospital (have to go with CHOP on this one; I don’t own a scale). Someone talked to her class about how being over a certain BMI means you need to lose weight…

Smell something burning? Oh, that’s MY TEMPER…!!!

After my poor G was so built up at the hospital for all her hard work in keeping her weight steady & exercising…argh! I told her WE Do Not Worry About Losing Weight. We are Into Making Healthy Choices, And She Is Doing A Great Job! She wasn’t actually that upset about it, just mildly perturbed. …(My mind filled with old sayings about the academic pot calling the kettle black, but maybe that’s just because I am sniggy when someone messes with my kid…who has to REALLY work on this area because of the stupid tumors…)

Anyhoo, the timing of it all maybe ratcheted up my response (right after my first frantic e-mail to the doc)…I am deciding if I need to just gently explain that with 5th graders (especially one who takes EVERYTHING folks in charge say as gospel) we need to talk about healthy choices, not weight loss.

Hey, I’ve been exercising EVERY day (yes, you are still on Genna’s page, this is still Kristin typing)…how can I ask Genna to be active if I’m a lump?

So aside from MRI report, report card, and card with weight (I think this an old game show…chain something?), things are normal! We had a snow-ice day yesterday, the girls and I made sculpey stuff, I showed them how to make beads. Genna made a pizza (!) and a bear, Rosie made a pile of pasta (!) and a little angel like one she had made in art at school. We played the Wii, made soup, and generally had a snuggly kind of day. Only 2 or 3 times did I have to remind my stir crazy kids that we do not play tag in the living room (which was a bit worse when it was Andrew & my sister, Laura, who are WAY TOO BIG to be running around my house! ; ) !).

I have to run to the store, we are out of bread (I refused, on Tuesday, to be one of those people who frantically runs to the store at the slightest mention of impending snow!...and thus we are out of bread! Pride goeth before, well, breadlessness)…and then try to figure out a couple more Coffeehouse things (Big Apple Circus is giving us tickets again! Hooray!...but I have a few musical things I need to really think through). Then off to school to get Genna, bring her to art, and then off to Grandpa Camiolo’s for his birthday fest!

Busy busy busy…and not with chemo, not with surgery, not stuck in the hospital…3 years ago today we were just out of the hospital after our 10 day stay…and 2 days shy of the worst MRI ever.

I am so grateful for stable…but I also can’t just sit on that. We need a cure.

Please pray for all our friends in tight places right now…my heart is so full for everyone, you can’t live in this bt/nf world long without feeling every test, surgery, scan, med, chemo, waiting, decision, treatment for your friends. You all are constantly in my thoughts & prayers throughout the day.

Ok, off to brave my icy walk & get some bread for the masses, er, family! ; )

Thanks, all, for your support and prayers. They mean the world to us.

Peace,
Kristin

DON’T FORGET: MARCH 7, ST. MARY’S WATCHUNG…
COFFEEHOUSE FOR A CURE!
A family-friendly musical celebration of hope…hope for a cure for NF!

Tuesday, January 27, 2009 9:12 AM CST

Hi, all—
Happy Tuesday.

The dust is settling here in Camiolo-land. Genna and Rosie have been enjoying the whole wheat mini-bagels Grandma C gave them for being so brave last week. Andrew’s face had a close encounter with the ice down the street (messy, but not stitches-requiring), Dave managed to get in a run or two (the streets have been too icy, he’s going crazy), and I’m…well, I’m getting my sorry act together. It’s all good.

I know I’ve said it before, but after scans I feel like one of those old (ok, dating myself) Fisher Price toys with the little balls in it, it was like a big rectangle thing that the balls would fall through different levels if you moved little levers and such. I always feel like the week after a scan I’m still processing through what went down. The little balls are falling in my brain…

And really, we’re good for today.

Rosie does have some more NF markings in her brain, not a big deal but something to note. Genna has tons, Dave has none (referring to markings, he has plenty of brain). I set up G’s neuropsych tentatively for April, but I may have botched it since I set it up Before the new NF Coordinator called…I’m not accustomed to having help on that stuff, so I just barreled ahead. Oops. I need to ask about nutrition stuff too (you know that’s my Favorite subject {says she who knows it does NOT say in the Bible that man shall not live on chips & Coca cola alone!} ). I want to be proactive in getting G to be as strong and healthy as she can be.

That was a little like balls falling, no order to that paragraph at all. Welcome to my brain!

Genna was very proud to tell Dr. B about all her exercising. We are really, really trying.

So now it’s a new day, a new week (well, ok, Tuesday). I am really focusing on Coffeehouse stuff this week. Some exciting (and otherwise) developments:

1. the one stressful snafu of last week seems to have been smoothed over, many thanks to Suzanne, Intercessor, Diplomat, and Liaison extraordinaire.

2. Genna wrote to 3 of her favorite Christian singers, and Matthew West’s manager wrote back…Hooray! We are so excited (I’m a HUGE Matthew West fan, too, he just writes so well…and hearing Genna translate his songs for Rosie…hilarious. “When he says, “I love you more”, that’s God, and He loves you more than like, Water, or a house”. We used to have to sit in the car if the “La La song” was on (Rosie’s name for it!)) Thank you, Matthew West (& Joel West!).

3. Sadly, her address for Chris Rice isn’t good, I have to follow up on that.

4. The NJ Devils are going to give us tickets again!! This is huge, they have a shiny new arena and a great team, the tickets were a VERY popular raffle item last year. In the present economy, we need all the woohoo we can wangle.

5. The Somerset Patriots are donating tickets as well! Hooray!

6. I almost have all of our singers lined up…the show will be shorter than last year, I know last year was WAY too long. I have trouble saying no when people want to help, we just had a few too many songs last year: all so good, just a few too many.

7. I started getting a few pics for the slideshow. I think I know what song I’m using…maybe…

8. I found this tool that can make letters on metal, I am experimenting with “Cure NF” dog tags or metal beads. Do you think I can justify buying a small kiln? A Kiln for a Cure?

Um, likely no. Me being careful about budget & hitting Costco & not hitting Payless (oh, the spring shoes!) go out the window when I hit any craft place before an event. Maybe I’ll go laminate something therapeutically! : )

ANYWAY, I am determined to use this time. I’m still helping with history fair at school, I need to talk to the people running it…Andrew has a registration day at the high school in a few weeks, Genna & Rosie hope to see Popple again (www.popple.us) , basketball and baseball practice (indoors) and school projects abound.

I have to be ok with normal life. I braced myself for the seismic shift back to oncology life and then the fault line closed. I can step out of the doorway now…

And really, to effectively get a move on for a cure, I NEED to. It’s sometimes just hard to find the way.

Ok, the phone just rang…I didn’t botch the neuropsych thing, woohoo! (The NF lady called yesterday exactly as my kids walked in the door from school, which is a quick formula for incoherent mayhem).

I better go really get started on this day…I exercised (yes, be amazed) and have had almost a cup of coffee. It’s time to move.

Heck, Genna is now rejoicing in stable. She didn’t at first (not amused when she asked if the tumor was any smaller—she always uses the singular—for the first time we started to mention “sleeping” tumor…for the optic tumor we are getting close to the magic mark age wise, not so much for the others…need to research cerebellar glioma in NF again, I know brainstem spots tend to be indolent)…sorry, brain spasm there! Anyway, once past the sad face, G was happy once home…and has been telling everyone at school…

One mom said, “our prayers are being answered”…and you know, she IS right. Ok, so the tumors are all still there (sigh), but No Chemo today IS an answer to prayer. I know so many people pray for us, think good thoughts for us, eat chocolate for us (hey, that counts! Especially since I still have 2 weeks left off chocolate)…we are SO GRATEFUL for this moment, even as I struggle to find my footing.

There’s an NF conference in April in D.C….wondering if I should go…

Just trying to find a place in this world. I have a purpose…I just wish the path was clear.

If you made it through this rambly almost optimistic fest, congrats. Go have a cookie.

Peace,
Kristin

And don’t forget, just a few more days of www.onemeaningcouture.com giving part of their proceeds to Friends of Jaclyn. I got a couple of butterfly buttons for my girls, and an FofJ button for me—I put them on my hospital bag, and a “code” button for Andrew (like he’ll care? But I DO! : ) ).

And I apologize for the number of parenthetical expressions squandered above, my mind just functions that way, which is why I am always running in circles.

PLEASE pray for Gabbie, Carly, Nora, Drew, Katsie, Erin, Emma, Caitlin, Lisa, Luke, Lauren, Mia, Landon…so many kids...

Saturday, January 24, 2009 9:51 AM CST

Hey, all…

Starting to regroup here. I keep thinking of things…

The day after a scan is historically not my finest hour, even when the scan is good. So apologies to anyone I talked to yesterday (thankfully only really a few good friends who know I’m a psycho the day after). I think the intense stress beforehand…the revisiting of every hospital moment of the last 4 years as soon as we walk into clinic…this time, staying at RMH (which we did the night before Genna got her port & started chemo back in 2004)…going through our whole history with the new NF Coordinator (only one dicey moment there, explaining February 2006…my brain just stopped, it was freaky)…the long wait in that room…looking through scans and getting good news in the extreme context of Good Grief There’s So Much Tumor!...a long drive with crabby children (that ended in Rosie losing half a million dollars…kind of, the magician gave her a million dollar bill that she was so proud of, somehow half of it disappeared on the ride home…a very UnMagical moment)…and then the Plop! Back at home…

At which point all of my extreme containment protocols go out the window.

It’s stupid, but true. I’m more emotionally wrecked AFTER. Wound like a top beforehand, but just a limp pile of weepy after. Pitiful.

So today is A NEW DAY. I don’t have time to be a wreck today.

A few other notes from scan day, good stuff…
*Genna got a kid size pair of hospital pjs to start…she was a human Italian sausage. Funny, but we asked for bigger pants…so she got these adult size scrub pants, they were huge. She tucked her gown into them and pulled them up, Erkel-esque, and laughed and laughed and laughed…

*Rosie in clinic was giving tutorials to everyone on how to make a “One Cut Cross”…in kindergarten she learned how to fold construction paper and with one cut make a cross shape. I find them in Piles all over my house. Anyway, my normally shy child was explaining to kids and parents alike how to fold the paper, how she learned to do it, she drew the line for one little boy to cut his…it was astoundingly cute.

*By hour 3.5 in clinic Rosie was drawing big sad faces on paper, running over, giving them to me, and saying, “THIS is how I am!”.

*Trying to explain G’s food issues to the NF Coordinator…at that Exact moment G came in lobbying hard for a snack. It was so funny to me, such perfect timing…helped my explanation!

*This was the first scan where the radiologists did not mention our horrible scare of 2006 that we do not much speak of ever. This is the first time THEY did not say it, the word…not sure why, maybe because time has passed, nearly 3 years since biopsy? Of course I don’t have the report…they gave me the CD when we were still in MRI, which I hate, then I don’t get the report. I’d like a report that doesn’t say The Word. This is good, really good…only known tumors mentioned, woohoo .

*Rosie’s plexiform is not too close to messing with her spine or airway. Yes woohoo…it’s just so counterintuitive (and kind of nauseating, but maybe that’s because I exercised today) to say woohoo about any tumor in my baby.

Today is a new day…today is a new day…today is a new day…

Deep breath.

Finally used my iTunes card from a year and a half ago (love this new high speed). Wish I had the Natasha Beddingfield song about freckles when I was a kid (which is playing right now). She makes them way cooler than they seemed when I was a kid.

So now we begin again…a season of possibility. I HAVE to DO something. As always I have 57 million ideas. I am ordering beads…I am going to make NF bracelets that are pretty (not that a rubber wristband doesn’t have its own haute couture edge, but it looks funny with dress up clothes…I wear it anyway). If I can sell some, donate ½ to CTF, cover my supplies and hopefully put some $ away for G’s art lessons and dance and nice talking lady…then I can maybe help further research & help my own kid in the things that have been so therapeutic for her…I have to get cracking on the Coffeehouse…finalizing music, working on raffles (we finished the legal paperwork this week), I want to make a slideshow of NF kids & families & friends all working for a cure (so if you have a picture of your NF kid, or you are a friend who wants to hold a sign that says something motivational & send me a picture…I’ll take it!). I need to keep writing my bt kid story…so much to do, it’s overwhelming. But NF is overwhelming, and I can’t let that stop me.

I just can’t, even though I feel very, very small right now.

Today is a new day. I don’t want to miss the time we’ve been given. I still feel like I haven’t done enough with our 2 years of stability. I know, we’ve had other stuff (Rosie’s diagnosis whomped me for a while…G’s scare in July…and October…sigh). But I need to use the blessing of time.

For a family battling any terrible illness, time is the most precious gift of all.

I did reserve a room at Great Wolf Lodge for March. I have almost one night covered, I’m trying to keep writing to pay more. We got a great coupon in the mail, hooray. That place is so precious to me, it’s silly I know, but my kids have had such happy times there…even our first year, when G was only a few months off chemo and fell asleep on a chair in the waterpark…

Ok, maybe I’m not so regrouped today. Must get it together, I can’t hide all day today again…scan day just rips the scabs off very deep, old, wounds. Urp. (sorry if anyone was eating…)

Today is a NEW DAY. Full of promise and opportunity and TIME…

Please pray for our friends, so many in tough spots…Carly, Gabbie, Drew, Erin, Devon, Katsie, Emma, Nora, so many many others…

Ok, need to go work on the necklace beads I’m making (yeah, that’s another idea). Not sure I like them yet, I am learning as I go along.

Peace,
Kristin

Oh, and if you have a chance…check out this cool website, www.onemeaningcouture.com (hopefully I spelled that right)…it’s a jewelry thing that’s pretty cool (kind of expensive, but they have cute buttons I might get for my kids for Valentine’s Day)…until the end of January a percentage of their sales goes to Friends of Jaclyn, the wonderful organization that matched Genna with the RU Women’s Lacrosse Team…cool concept, great cause, funky stuff.

AND DON’T FORGET…MARCH 7, 2009…COFFEEHOUSE FOR A CURE FOR NF.
Maybe this will be the year?
And next year we can just gather and eat cookies and celebrate the cure that together we found….

Today is a new day…

Thursday, January 22, 2009 3:59 PM CST

just about to leave the hospital...yes, it's VERY late.

BUT EVERYONE IS ROCK SOLID MOM STABLE HOLY TOLEDO HOORAY!

trying to remember how to breathe, now off to face traffic...

thank you all...
you carried us.
peace,
k

LONGER VERSION, AKA WE'RE HOME
after a very long, kids at each other's throats drive...which rendered me very crabby and at some point during which everything kind of hit me.

It's so silly, I really am busy & focused & together leading UP to a scan, after is really almost worse.

We are so freaking lucky/blessed.

Please, please pray for our friends who scanned this week and got horrible news. I feel so awful, just really, really awful. There but for the grace of God...which seems a horrible thing to say, really, like what the heck does that even mean?
But please pray that our friends, particularly Carly & Erin's families, get whatever grace they need for today.

G's scan was as good as it's been in a LONG time...beyond the excessive diffuse tumor all over the place, there was nothing new, no areas of extreme new concern...the word "fabulous" was used...holy poop. Rosie's stuff also seems rock solid stable, her plexiform & her og. She aced her hearing test, not sure what the deal was at school.

So 2 kids, 4 plus tumors (G has at least 2, but there are random spots other places, hence the plus)...all MOM stable. Yes, I ALWAYS ask if it's mom stable, meaning NO GROWTH AT ALL. Like a statue of a tumor (that would be one ugly statue.).

I am in a mood. I'm sorry...

Yesterday was a marathon, left home at 5:43 (my attempts at Appert time did not prevail), got to CHOP just on time...pondered the fact that they TOOK DOWN the bridge we used to drive on, which raises some troubling questions about the last 4 years of commuting...G did great with her stuff, she was in rare form for the nurses...people recognized us, a sure sign you've been doing this too long!

Rosie was VERY alarmed at the prospect of the IV. Child Life came, she learned to breathe & sit very still, she gave a doll an iv...and was still wrecked. She spent the last 45 minutes before the scan curled up on my lap. The versed helped her chill, and she got through it with 2 nurses & me & Dave & the Child Life lady, but it was very sad. She did great...

But since she & G ended up on the same scanner, as they rolled Genna out--AWAKE--they took Rosie off...so I only stared at the floor, the wall, called Ronald McDonald House, realized my energy bar had chocolate on it so I couldn't eat it (I am ridiculously scrupulous, it's not cool), wished I had brought my peanuts into the hospital...I thought it wouldn't be such a long day. But G was up and hungry fast...and Rosie's scan was 2 hours,(did her neck, too, apparently, to check on the plexiform), then she slept almost another 2...they finally forced her awake.

Logistically, it was a challenge. Not sure if we'll do 2 together again. Emotionally...ditto.

We didn't get out of MRI land until after 2...thank God Ronald McDonald House had room for us. Rosie was skeptical, but as soon as she saw the playroom her world was complete...complicated only by her complete stonedness. She was running around the playroom, falling over, and saying "I meant to do that!" as I kept going into cardiac arrest at her.

Both girls got a toy, Rosie got a Cabbage Patch Kid for heaven's sake (which would have been the apex of a certain season of my life)! Then a rest before dinner...then delicious food made by volunteers, Greek food, SO YUMMY...God loves me, there was couscous...having a real meal right after a scan was so...oh my gosh I so appreciated it. And we met a family who knows another CHOP friend...they got the good news train rolling for us today. Hooray, Joey!

G & R visited some therapy dogs, (note to self, Corgis are Awesome) played Chutes & Ladders with a nice volunteer, and then we went to watch American Idol up in our room...which was one of the original rooms in the original old house, 14 foot ceilings and a big fireplace (nonworking but super cool aesthetically). Rosie freaked out at bedtime, cried for an hour...?? Not sure what that was about, but glad it's done.

Ronald McDonald House is a gift. Just getting to talk to other families...for folks battling low grade tumors, we do a lot of battling at home, alone. Just to meet other people who KNEW...it kept my mind off the scary stuff.

Today we got to CHOP right on time-ish, 9:10 (yes, we were 5 minutes away, it's pitiful)...Rosie had her ear test of hooray, then we waited for our 12:30 appt....which ended up being more like 4ish. Ouch. At least at the beginning there was a magician there, Genna & Rosie were in their own nirvana.

By the last hour, they were Not Happy Campers. By the time we saw our doc, they were so slap happy, Rosie was making up jokes (Reca, you know how THAT goes!), Genna was tickling Rosie...the 2 did their neuro exam at the same time, which was hilarious.

We talked about Stuff...I will be setting up a new neuropsych evaluation for G for the summer...and kudos to G, we've kept her weight steady since July!!! Hooray!

I am losing coherence by the second. I might go play find Mii to relax. Or maybe find Sangria. Or find Cake. Dang, I hope Andrew didn't finish the cake.

I know there were many meaningful things i meant to say, but forgot. Thank you all...I can't tell you how much it means...

we have a reprieve...maybe 6 MONTHS, God help us. Now I have to get to work, serious, hard core work for a cure. This just can't go on like this.

starting to sound like a street corner Yeller person (THE END IS COMING NEXT TUESDAY, DO YOU HAVE A BUSHEL BASKET?? or something like that)...better go find something.

wishing you all peace...and to our friends in tough spots, you're in our prayers (esp. Carly, Erin, Gabbie, Emma, Drew, Nora, Katsie, oh dear, God, I just typed Hadley...

WE MUST FIND A CURE FOR THESE CHILDREN!!!!! ...ok?

Tuesday, January 20, 2009 7:15 PM CST

Hi, all.
In 12 hours we’ll be checking in to CHOP.
Woo.
Hoo.

Rosie is detangled, I think both girls have all their time-filler stuff packed. It’s a little tricky mixing “stay over bag” with “just in case bag”…since the 1 night stay & the 3 night stay can conflict (I always assume there will be some shunt situation, and base my neuroses on that).

Please pray, Genna got snuffly, I have been trying to surreptitiously de-congest her. We NEED her to be able to scan tomorrow. Eek.

We’ve had a couple of coffeehouse challenges this week, I’m trying to not obsess…yeah, right. Scan week is not the best time for this stuff…

But Neurotic Me aside, here’s the plan.

We will leave our house hopefully before 5:30 am…coffee around 6 (yes, that merits scheduling…it also marks G going totally NPO, we’re cutting Rosie off then, too…can you imagine letting Rosie sip juice while G is fasting? Hell hath no fury)…Anyway, hopefully we’ll navigate the South Street detour for the first time around 7 & then check in by 7:30.

Genna scans at 9, Rosie at 10. Rosie’s scan will be longer, there’s some new imaging study for plexiforms, Dr. Fisher’s project? Whatever. Hopefully we’ll have both girls out of their respective scanners by 10ish and 11:30-12 ish , um, respectively.

During the scan I plan to do one or more of the following:
1. Listen to my Ipod, either something LOUD or something Happy, not sure.
2. cross stitch the super easy thing I started so I’d have something for scan day.
3. say a rosary.
4. continue reading Word Freak, a book about competitive Scrabble players that Rita gave me for Christmas. I started it for tomorrow. New things don’t get started on scan day, I’ve learned that.
5. prepare an entry for the Wergle Flomp poetry contest. A contest for Really Bad Parody Poetry? My own personal nirvana…
6. Write the devos I need to get done.
7. stare at the floor.
8. eat honey roasted peanuts secretly, so as not to be a problem for kids in the waiting area who are NPO.
9. stare at the wall.
10. ponder how hard would it really be to memorize letter patterns so I could be a competitive Scrabble player.
11. Call Ronald McDonald House to see if they have room, if they don’t…panic and start calling hotels. Now we remember why we usually avoid this option, the possibility of panic is too great.
12. Jump out of my skin EVERY time someone walks through the door, especially if they are a) a doctor I know or b) have “neurosurgery” embroidered on their coat.
13. probably wish I hadn’t given up chocolate for a month.

Likely I will mostly do 1, 7, 9, 12, and 13 (and make Dave do 11).

Then we may head up to clinic to see if they can draw G’s labs from the iv. Onco nurses have magic hands in this regard. I’m just not sure of the logistics of it, I’ll have to call clinic while the girls are scanning (#14). Baby Andrew is supposed to be in-house tomorrow, maybe we’ll see him!

We WILL NOT KNOW ANYTHING ON WEDNESDAY unless it is BAD. If something is really bad, we’ll know right away—at which point the” stay over bag” morphs to the “just in case bag”. Bad News travels at light speed. So pray we know nothing tomorrow (or get a mercy call of “stable!”, but I didn’t ask for that, so I don’t expect it). So don’t panic if I am strangely silent tomorrow.

Although, if I’m bored enough, or frantic enough, or something silly happens, I’ll probably post something.

In that vein, Rosie asked tonight (while being detangled) “mom, how come doctors don’t ever go to the bathroom?”…ponder that.

On Thursday morning Rosie has her audiogram at 9:15…then there was a schedule snafu (surprise!) and so we don’t see the doc until lunchtime…I think 12:30? Dave took that message, and didn’t write the time down. Hopefully by early afternoon we’ll have some sense as to whether we are going to hell in a handbasket or not.

I’ll try to get word out, I know I am a Major Page Stalker when I know someone is having tests or anything…I hate hate hate waiting, I’ll try to not make you all feel like me.

Yes, friends, she was an English teacher at one point in her sorry existence.

We’re going to watch American Idol, I may have the glass of sangria I forgot to have the other night, and then…I will attempt Sleep.

Ugh.

Thanks, all, for the support. It means more than I can say. Only really the last couple of days have I really started unraveling…while detangling Rosie I had the thought…if she has to start treatment, the obnoxious ritual of detangling may only be a memory…

Sliding….

Ok, enough. We don’t want to have to call the Waaambulance.

Genna did totally wipe out on the ice the other day…I didn’t see her fall (I was fixing the zipper on R’s coat), but she totally knocked the wind out of herself, she was shaking through her coat, sobbing…and this was about 2 minutes after we got to the pond…an ignominious end to her boot “skating”…

Not sure why I’m mentioning that…kids keep talking to me as I do this, so I’m getting less coherent by the second.

Anyway, thank you. Please, please pray for us, and for all our friends in super tough places right now.

And HAPPY BIRTHDAY, DREW!!!! To G’s Idaho twin, we wish the happiest birthday ever.

Peace, all…
K, who will boldly go where, well, we all have gone way too many times before.
And I don’t even feel that bold.

Saturday, January 17, 2009 7:27 PM CST

Sunday:
a weird note, and a disclaimer. Not in that order...

Really, I'm not falling apart every second, if I say things here I can hold it together when I'm around other human beings, so if you see me around (unlikely, I'm hiding) don't worry, the real me hasn't been abducted by aliens. I feel bad for making people feel bad.

And the weird note: just realized the date. A year ago yesterday we found out about Rosie's tumors...

If I had any skill with computer graphic blinkie things, there'd be a giant sad face or a weeping yeti or something here.

A year...
nothing like a cheery anniversary to brighten up scan week! Heck, we've been in this a while, we're running out of months without negative associations!

March? I think March is our least-scathed month, maybe May.

Anyway...thanks for loving us through the past year on top of the last 3 years before that.

i wish we could find a cure for my little girls. :(
peace,
k
*******************************

Brrrrrr.

It is cold here, a veritable Arctic Wasteland. The first couple of days are ok, but by now…my house just holds the cold.

Pardon me, there’s an elephant in the room, it’s hard to see the keyboard.

Anyhow, we are trying to stay warm. I have been eating my way through the house, which is bad. Very bad. I’m working on Coffeehouse stuff a bit, trying to juggle details of things, trying to figure out whatevers. I forgot to e-mail about labs for G, that will be logistically challenging this time. I think I’m going to learn how to bead, I have Ideas. And beads are therapeutic. I started drilling holes in things to make beads. Power tools are also therapeutic.

Ugh.

I did have a lovely jolly joyous time out last night, celebrating a dear friend’s birthday. It felt good to shed my HermitMom persona, even if it was 8 degrees outside!! Unfortunately I have to add Mahi mahi to the “don’t EVER eat this!” list, alas, but at least initially it was delicious! ; ) We laughed and laughed and laughed…I forget I know how to do that sometimes. It made me feel good all day today!

Which was nice since Dave had to work…I needed a little oomph. Andrew went ice skating and to my great surprise Rosie wanted to go, too. She’s never skated…she went, and had a blast. I made her come in after an hour or so, but she wanted to go back out. It made me happy…Genna never would try after one ill fated attempt when she was little. But Rosie was ready to go…a little dash of normal—for which I’m always grateful.

In the Elephant category, Genna told me rather perkily yesterday that she had fallen 2x at school. Today she told me about another fall…which could just be klutzy, could be stuff in the way at school…could be, should be…

Always RIGHT before scan day.

Ack…the Elephant, it dances!
And badly, doesn’t that figure?
Well, after all, it is My Elephant! : )

So it goes.

Anyway, tomorrow G sings at church, the kids have off Monday…I have to be Super Meanie and make Andrew & his group work on their history fair project on Monday. Tuesday will be whatever, and then…we’re off.

Scanning 2 at once is like Russian roulette with 2 guns. We’ve dodged a fair number of bullets in the last year. I just don’t know how many more ninja moves we have left. I’m trying to pray, sometimes it’s hard before a scan…or, more accurately, it gets more monosyllabic…”please….God….help!”. And there are so many others who need prayers, so many in really hard places right now.

I had a moment, on the way to the restaurant last night…I was listening to music in the car, going through CDs looking for a song. I want to make a slide show for the Coffeehouse, faces of our kids, our heroes, and those who fight for them…Yetis included! I was listening to a Sara Groves song, I Saw What I Saw…a song written about a trip she took to Africa….and how her heart was touched seeing all those beautiful people…and all I could think, as I heard the words…

your pain has changed me,
Your dream inspires
Your face a memory
Your hope a fire
Your courage asks me what I’m afraid of…
And what I know of love….”

I thought of Sandra, Genna, Rosie, Drew, Joey, Nora, Gabbie, Katsie, Sarah, Emma, Carly, Carly, Timmy, Julian, Landon, Esther….

How can I be afraid, if they are so very, very brave?
How can I fall apart, if they are so mighty?

Please, pray we find a cure…or at least dodge the bullets again this week. We are so grateful to you…and we’ve been so blessed, really. Elephants and all.

Peace,
k

Tuesday, January 13, 2009 6:53 PM CST

Hi, all.

The psycho ramblings of the weekend were bugging me.

And the kids are arguing behind me about having too many Miis on the Wii…Rosie made her whole class, and random other little people, and it makes Andrew berserk. He is even as I type lobbying to erase some of Rosie’s people…and she is adamant that every one of her 10 characters stay…so we’ll see how coherent this is.

Tomorrow is the one week before scan day mark. I think it kind of hit me yesterday…that, and recovering from my …whatever…I feel a bit like a giant vat of empty. The kids are back in school, it’s so quiet here in the day, I’m trying to get Coffeehouse stuff together, mailing the requests and the forms and the please help us-es.

Someday…someday I swear we will be CELEBRATING A CURE instead of just hoping for one. We will.

The girls had a pageant at school last night. Yes, they do Christmas after the fact, which honestly is easier schedule-wise. Rosie was a sheep with a curly horn, and she colored her sheep/hat thing with rainbow horns. Genna’s class sang 2 songs. True to form, G yawned her head off midway through one song…she looked nervous, which was odd…

Now Rosie is getting weepy, Andrew said if she doesn’t erase some of her fake people he will erase Flabby, who we now all love…ok, that looks very silly all typed like that. You get attached to these Miis.

That sounds even sillier.

Anyway, the pageant was really good, all the kids did a great job.

Genna has been working very diligently to help write some letters for the Coffeehouse. I am so proud of her. She is so genuine (and absolutely shameless about asking for help…she had to rewrite one letter that was too “hey, you can give us money or anything, we’ll take it!”…which is true (!), but we’re trying to build connections, to extend the knowledge of NF in people who maybe can help).

Andrew has done one or two…I had to make him rewrite one, he talked about NF and how it wasn’t harmful in his sisters’ case…I guess we’ve done better than we thought in keeping the horror at bay! I had to explain to him that Brain tumors are inherently a Big Deal. I was taken aback, really.

And so it goes. I know the days will just slide away until it’s next Tuesday night and I stay up too late in denial of the 5:30 a.m. departure. I sent a note to Ronald McDonald House today; we might try to stay there, it’s right in the city, and I think we could get in right away, but I’m not sure if we qualify since the girls aren’t on active treatment (thank God). If not, I have a hotel we can go to, everything is expensive. Dave wanted me to try RMH. I always feel guilty, like that’s for the kids Who Are Really Sick.

I know…

I don’t want to scan.
I don’t want to know.
I like just pretending that life is normal, normal normal not brain tumor normal.
I want to go to an island with palm trees.
I am trying to actively market some writing stuff so we can do 2 nights at Great Wolf Lodge, I need something to look forward to. Somewhere warm, where everyone splashes and smiles and ends up pruny-fingered and overtired at the end of the day.

I can feel it creeping in, that feeling…it’s not worry, so much as a feeling of sliding down a steep hill. My hands are still on the ledge, by the weekend it will be my fingers, by Monday I’ll be hanging on by fingernails, and by Wednesday morning, as I watch my babies forced into sleep, I’ll be sliding, sliding, sliding…

Ok, maybe I’m closer to fingers than I thought.

American Idol starts tonight, my girls are ridiculously happy about it. They just ran upstairs to make their lunches before the show. We will watch together, and we will laugh at the awful people, and wonder at those blessed with great voices, and my girls will try to sing and Andrew will get annoyed and tell them “you can’t sing to save your life” and Genna won’t care (well, she’ll get huffy but she won’t stop singing, Rosie won’t even get huffy, she’ll just sing louder). Good times.

And tomorrow is a busy day, I also have to get a presentation about the school’s History Fair ready…I think I’m supposed to talk to 7-11 graders sometime this week. Better dig out my powerful shoes. Andrew loves when I talk to his class ; )! They find me funny…him, not so much!

And an arctic blast is supposed to hit us in the next few days, the high on Friday is going to be 14 degrees. That isn’t even really a temperature. Ack. I don’t leave the house if possible when it gets that cold…although I am supposed to go out for a friend’s b-day on Friday, that will be fun.

And so it goes.

Please pray for all our friends…so many in hard places…and for all our angel families, especially Hadley’s family, I still just…

You know. Wishing you all peace,
k

Saturday, January 10, 2009 8:10 AM CST

Later Saturday:
see, if I waited just a while longer...
the one thing I had been bugging St. Jude & St. Rita & St. John Neumann & my grandmas & Dave's grandma & pretty much anyone I thought was anywhere NEAR heaven about got resolved. While I can't really get detaily, I will say I feel a bit like Scrooge at the END of the story...I feel like I can have Christmas day in my heart. Which, since I've been in sort of a panic attack mode for several weeks, is a relief.

Now if we just didn't have scan day in 10 days...sigh. Last time both girls scanned I had a crisis right before...not sure why my entire being betrays me now like this.

So even though I promised God I wouldn't eat chocolate for a month...really...I am a bit more peaceful, and very much hoping I don't have to watch too many more 3 a.m. documentaries.

We also got a letter today that said that Andrew was in the top 20percent of kids who took the HSPT (high school entrance exam)!! WOW!

Thank you all for pulling for us. I'm sorry to be such a slug, I think maybe at one point in my life I chirped too sincerely, "Please God--Please! Don't let me be normal!" and then burst into song (anyone know the reference? if so, thanks for being not normal with me).

Hopefully I can channel my pre-scan AAAAAGH into pre-Coffeehouse Git-r-done...

ok, now peace for real...
K who isn't naturally brunette anymore, do you wonder with the way my stupid head works? sigh

*********************************

Hi, all—
Sorry for the great silence…just kind of churning about here.

The kids are fine, we are already back into so busy. It’s a little demoralizing to look at the calendar, so full already. The kids had a great time with the Cams. Dave & I pretty much cleaned out the office...yeah, romantic! : )

In good news, Andrew did get accepted at Immaculata yesterday. If I weren’t…churning…I’d be a lot more woohoo. He did better on the test than we thought…or, 8th graders all over find this test challenging…he was above average or high on all but one area (the English stuff, which I expected!). I am proud of him.

We’ve started working on preparations for the Coffeehouse for A Cure, March 7, 2009. I am continually amazed at how long each tiny piece takes. I know these things are great, and important…but the overwhelmingness of asking and asking for help gets old. I’ve been trying to think up defiant bumper stickers or t-shirts just to randomly have…

Genna has been doing well exercising EVERY day! I’ve been chugging along with her, we do the easier things together a couple of days a week, and then on the alternate days G does her own thing and I do something hard. I can see how this can become an obsession, still trying to see how it’s fun?

See, I try to avoid posting when everything comes out like something Ted on Scrubs would say (“this is for if I’m sad…that is for if I’m really really sad”)! Sorry…

Today we’re supposed to get snow, little flakes are lazily drifting by right now. Andrew’s supposed to have a basketball game. Dave has to work, and we need to take down the Christmas tree…yes, it’s still up, but technically it was still the season. Actually, as I type G—who is wearing a pink sequined cowboy hat and doing a word find—is irritated at Rosie who is drawing and singing an enthusiastic version of Santa Claus is Coming to Town. Apparently word finds are tricky while singing is going on.

Which is ironic, since while G and I did Leslie Sansone’s 2.5mile walk/jog this morning, G talkedtalkedtalkedtalked…!

I did learn some very interesting things about the Dust Bowl of the 1930s at 3 a.m. this morning. Nothing’s on at 4, though. Sigh.

I’ve been throwing everything I’ve got at God (and St. Jude & St. Rita & Padre Pio & Jesus) these past 2 weeks or so, and I’m not sure He’s getting the message. That old “He won’t give you more than you can handle?”…um, I’m thinking perhaps that is a loose translation of “PREPARE TO BE SMOTE!” or “Ha! Betcha didn’t see THAT coming!”. Which I know isn’t theologically whatever. I’m just having a cataclysmically hard time right now.

I’m trying to find the mad, my friend Ori is my hero on the fighting front. I just feel a bit like we’re fighting on quicksand right now.

Last night Genna’s eyeball was drifting freakishly. Eek. I know it drifts, but it was rather pronounced, I’ve never noticed it like that. I hope it doesn’t happen often (her weak eye is…weak). That would freak out other kids.

Hey, it could be worse, a 20,000 foot cloud of topsoil could be blowing towards my house. Really, it was an interesting documentary.

Please pray for us…and for our friends, especially Drew & Nora & Gabbie & Katsie & Carly & Emma…everyone is near scan/post scan/decision time/hanging in there…it’s so rough.

See, silence is golden, right?

Thanks, all—
Peace,
K

And if you’re on Facebook, I created an event listing for the Coffeehouse. I’ll put more details up as I have a clue what we’re doing…

Friday, January 2, 2009 6:17 PM CST

Saturday: Genna perked up around 8 last night, went to bed fine...and all 3 kids left with Grandma & Grandpa about an hour ago!! All 3 kids were pretty psyched, they were up before 6 I am told (eek). Now it's so quiet here, I exercised already and now I have to figure out what we're doing today...
thanks for pulling for G. I'm trying not to think about why she would have just felt "not right" (her words)and slept for hours 2.5 weeks before scan day...not thinking about it.
Maybe Dave & I can go find some chocolate store today, I know there's some pretty fabulous places not too far away...or somewhere with breakable things or a need for Inside Voices...oooooh....
peace,
k
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Hi, all--
Happy 2009.

I know, I should have posted something uplifting and Woohoo for a new year...my own typed rendition of Climb Every Mountain or something. I'm just not feeling it. Without raining on anyone's parade, my head is a bit like...well, on the Wii game there's a skeet shooting game where in the last round space ships come to carry off the little Mii people, and the people run in circles with their hands over their heads silently going AaaaaaaaaaH!

That's how I feel.

And really, that's kind of a whatever, since this is supposed to be about the kids. But it's the kids that make the little people in my head run in circles...

That sounds quite wrong, somehow. ; )

Rosie seems FINALLY to be mostly better. She has been draggy all week. We went to the Met the other day (Metropolitan Museum of Art in New York City), we had a coupon...but traffic was bad, and on the way in Rosie got a monster headache...she was weeping in pain, which has never happened...of course I had an ice pack and some water, nothing else...I finally let her get out of her booster seat and go lie down in the back seat next to Andrew (we were going 2 miles an hour in the Lincoln Tunnel)...when she woke up she felt a bit better, but it scared me. And then she hasn't really been eating much, because her stomach perpetually hurts...

and a happy 2009 to you, too!

The kids are supposed to go away tomorrow with John & Peg (Grandma & Grandpa Camiolo) and now G isn't feeling quite right...like she fell asleep without dinner...ugh ugh ugh! If she is sick, and misses this...really, I thought we turned in the smite magnet after 2006...or at least the beginning of 2008...argh.

I know, a sick kid isn't that big a deal. It's just...well, we're within the 3 week mark of double scan day. And I feel sick about it, and just about other things...even Dave doesn't feel good about 2009, which from Mr. Optimistic is alarming.

Sorry, I will try to break into a chorus of Auld Lang Syne or something.

We did have a nice New Year's Eve with friends...and church was good, Fr. Brian talked about reflecting on the best thing of the past year (G's clear spinal scan? that realization on the Saturday of our vacation that we had Another Whole Week?)...and the worst (Rose's diagnosis...G's July scare...losing Hadley & Jim & Esther...). It made for an interesting discussion at dinner that night.

I know the next couple of weeks will be a little...whatever. But we are so lucky, really. I have 2 beautiful girls who I get to worry about still (and a too cute for his own good son who is making me gray, but that's another story! : ) ). I am just bugging St. Jude & St. Rita and randomly begging God to give me a mental hand here...

I wish you all a blest New Year, with health and happiness for all. I am so grateful for you all...

G just woke up, she wants food, maybe that's a good sign? We've been working to exercise more, the 2 of us, and I have to get us healthier eatingish in the upcoming weeks, the holidays have NOT helped us on that front. Trying to just be better this year...to gear up for whatever the next round is...

must go be mom...
peace,
Kristin

p.s. it's kind of funny, G made her neuro-oncologist on the Wii...she (Dr B) is quite good at baseball!...and now Rosie is asking "who wants to watch me beat Dad?" on the Wii...I am so glad we got it!

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