**MRI Is CLEAR**

To quote Gianni, "I'm runnin' outta gas!" However, it must have taken heroic efforts for our family at LPCH to get us the unspeakably wonderful news. One more clear MRI. I know each one is as important as the last but Tony and I are breathing in a more regular cadence. We had a nice quiet night - the kids stayed up late and (for once) Gianni fell asleep before Mr. B.

More gratitude than I am able to express...

[Still] Gearing up for Cycle 7

Still gearing up for cycle 7, but for now we will be in low gear instead of high. Turns out Gianni is neutrapenic again (second time this cycle) which means her bone marrow is just pooped out and can't quite get her counts high enough to safely start chemo tomorrow (her Absolute Neutophil Count (ANC) is at ~400, they won't start chemo until its >1000). She will still have the MRI, but no LP with chemo; the plan is to give her a short reprieve from the chemo (about a week) so that her counts can come back up and we'll shoot for next Wednesday to start cycle 7. Gianni and I had a fun visit to the Urologist last Friday, she did a great job with the "tummy game" (ultrasound) and the docs could not find anything out of the ordinary. So . . . looks like the hemorrhagic cystitis is under control; we'll check back with them after this cycle.

The trip to the cabin was fun and relaxing (proof is in the puddin' - see accompanying pics). It was a cloudy and rained a bit, but we found some nice breaks in the weather to play and carouse outside. We hit all the staples - bubbles, baseball, brownies, family music night, movies, popcorn, lizards, cars, dollhouse, and soldiers (to commemorate and honor the true reason for the season).

We'll be laying low for a while, enjoying the kids.

Gearing up for Cycle 7

Quintessential Gianni

Clinic on Thursday was great - Gianni's numbers are good enough for our whole family to sneak up to the cabin!

Our only gate is another ultrasound and consult with the pediatric urologist at LPCH; our Super Nurse Practitioner Trish (SNPT) wants his advice before starting chemo for round seven. Last weeks bladder problem (hemorrrhagic cystitis) is most likely caused by the chemo drug Cyclophosphamide which is really weird because she is prophylactically treated with a "chemoprotectant" called MESNA which has practically eliminated this side effect for most chemo patients. But our little Gianni, delicate little flower that she is (HA), has figured out a way to become susceptible. Her symptoms have all but disappeared thanks to a very strict ("ball & chain" - SNPT's words not mine) regimen of water that Tony administers throughout the day. She gets a full 2 liters every 24 hours and boy have we gone through the diapers!

Of course the only available time (which we were lucky to get) is today... Friday... getaway day. But this is okay, we are grateful to get as much information as we can.

Next Wednesday is day 01 of cycle 7 and her 3rd (post start of chemo) MRI. No words express our feelings of hope, anxiety, and fear. Please keep Gianni in your thoughts and prayers.

We've had a really nice few days together at home and are fully looking forward to a stretch at the cabin - fishing, pirates, play dough, bugs, fire pit, marshmallows, KY hayrides, hiking, baking, BBQs... oh my!

CHEESE!

F-U-N Time!

See ya later jokers! We got discharged today just in time for Gianni to make her "Listening Game" appointment. She's still neutrapenic, but we are keeping all appendages (and anything else that can be) crossed for a good long run at home.

MRI was scheduled to be combined with her Cycle 7, Day 01 chemo (only one time under anesthesia); that will be 1 week from Wednesday.

Cycle 6, No F&N, but no F-U-N either...

So, it looks like we don't have so much skin on our teeth after all; Gianni was re-admitted to PEC on Thursday night and won't get to come home until early this week. This time we don't even have a fever! One of the chemo side effects is an irritation of the bladder (very rare mind you) and well, she's got it. Gianni has become the poster child for rare side effects, we just hope that if the rest of her cells are this sensitive that the cancer cells are far worse off. She had been complaining of pain while peeing, and we had seen some blood in her diaper - the docs have been treating this as an urinary tract infection. When no white blood cells appeared in her sample, some just chalked it up to being neutrapenic; she had no white blood cells period, let alone ones that could be spared for an infection!

Once her counts came back up (and still nothing grew) we were able to rule out a bacterial infection, test are still being run to determine if it could be viral but the treatment regime is similar either way so we are moving ahead with the assumption that something is hurting her and we are fixing it. She has been super hydrated for the last 72 hours, this keeps things moving and all her diapers have been clear since Friday morning; no more pain.

It's Sunday today, and we've started hydrating her through her NG tube now - not the IV, this is good because it means we may get to go home soon. She was given an ultrasound today to look at her kidneys, liver, spleen, and bladder - hopefully these pics will provide enough information to let the docs know what's going on. She was a barrel of laughs at the ultrasound (being facetious)
- considering all the horrible things she's had to do, this one seems to be pretty minor. They just glob some jelly on the belly and roll a pen-like wand around. She screamed bloody murder and wiggled the entire time! I had to laugh. I sure hope they got the pics they wanted.

Seems that she is neutrapenic again too, not surprising this late in the protocol (read: only TWO MORE TO GO!!!!). We are doing okay, and Bruno has been able to stick it out with us so far, so all is good.

Thank you for all your support, good wishes, and prayers - we feel it!

Cycle 6, No More F&N

Gianni's home. We got the boot on Tuesday evening around 7 pm. I was in such a hurry to get out of there that I forgot to ask the nurse if her counts were high enough to forgo the evening s-h-o-t. When I called the doc back to get confirmation he said, "Listen lady, you barely made it outta here by the skin of your teeth, don't push it!". Gianni got the s-h-o-t, and we are more than happy to all be home together again!

Cycle 6, Finally an Update!

True to form, our predictive capabilities are scary! Gianni was back in the hospital on Friday afternoon with a fever. The Carboplatin seemed to have worked; Tony clocked her with a 103-deg F after her nap. . . bummer. She did have a great week between the 1st dose of round 6 and this admit - she kept us on our toes (ref: Spider Gianni, Bongo Bonanza, Playdate with Jes & Bruno).

We know that the safest place for her is LPCH, and we got her in through the clinic and into her own bed on the newly opened 1 North in record time. She did have some sort of urinary infection - the labs never quite resolved what it was but the symptoms were undeniable - poor thing. During her stay she's received lots of antibiotics, two RBC transfusions, and one platelet transfusion. She, being the ultimate trooper, has taken the whole admit in stride and continues to charm the LPCH staff. She keeps a near-life sized Sponge Bob Squarepants, given to her by her childlife friend Courtney last week, near by at all times - really cute. Not to be slowed down, she has been sighted tearing through the hospital in nothing but a tank tee, a diaper, and some crazy socks. She drags her wagon everywhere and I think we've single handedly moved the vending machine company into a new tax bracket (we love yummy Ms). As we wait for her counts to rise, she looks great, and has so much energy the nurses and docs all seem a bit incredulous that she had to be here at all. The talk around the floor today is that she is "outta here" either tonight or first thing tomorrow morning.

Tony and I (mostly Tony) were able to swing keeping Bruno with us by alternating nights and leaning on our good friends Auntie Jen and Uncle Timmy. We all celebrated Mother's Day together (that was great) and are looking forward to a few good weeks at home. So all in all no complaints.

--- Funny Bruno ---
[per Auntie Jen] While teaching his friend Jessica how to make wishes on dandelions, Bruno's wish was for Gianni to not be sick anymore.

Green Tee

LP is negative... = )

Saturday was Gianni's 4th day of chemo (cycle 6) and the NBTF walk ("Angel Adventure"). Tony and I divided and ultimately conquered - Bruno and I went to the walk and Gianni and Daddy went to the LPCH day hospital.

I was so very proud of Bruno, he completed the 5K (just over 3 miles) walk, even after an hour of milling the fairgrounds (including a bouncy house and balloon contortions clown), with no complaints.

There were literally thousands of people in attendance - it was so uplifing to see. You - my family, friends, and colleagues (and your family, friends, and colleagues) are AMAZING. We raised nearly $5,000, and needless to say I was blown away by your generosity and support. My initial goal was $500 - powers of 10 are unspeakably grand.

Thank you.

The NBTF provided a silent auction, raffle, afore mentioned bouncy house and clown, food, and a few local celebrity speakers. It was a carnival-like atmosphere dominated by people, well, like us. My intentions were to first, raise money and awareness for childhood brain tumors, and second, go to the walk and meet people with the same interests and shared experiences. Once I got there however, goal two evaporated - I was semi-dumb struck and unable to strike up a conversation with one single person. Those of you who know me well are scratching your heads . . . "Karen . . . unable to strike up a conversation with a complete stranger...? Nonsense." It was everything I could do to keep an eye on Bruno and not crumble onto a bench and sob. Unexplainable (other than some maniacal twist of fate that has my “28-day woman-cycle” corresponding exactly to Gianni’s 28-day treatment cycle - when things heat up around our house . . . they really heat up). I guess I still have a bit of the "deer caught in the headlights" syndrome - even though we are "doing it" I still don't see how people "do it". Everyone seemed so positive, hopeful, strong, and full of grace. Even though our family is running a gauntlet - I know how lucky we've been. Regardless, I am happy we went, proud of the money we raised, and will definitely support this event in the future.

All participants were given white or yellow t-shirts with the NTBF logo; Survivors wore green t-shirts. So many people affected by brain tumors . . . so few green shirts. We are going to get one of those green shirts.

Enough about me. Gianni is doing well, she looks a bit tired and pale (a transfusion is surely imminent) but is holding her own. I am trying to brace our family for, well you know (“eff n enn”). The Carboplatin is a very close cousin of Cisplatin, and that drug really knocks her around a bit. The steroids are kicking in so her normally sweet and compliant nature (I laugh to myself as I type that) is masked a wee bit. She wants all kinds of weird stuff . . . and boy does she want it NOW!!!!! Bruno is incredibly sweet to her and has been exceptionally careful about his germs.

We went grocery shopping today to provide for a steroid-quenching smorgasbord lunch. We had green beans (must be cold and from a can), drinking yogurt (must be pink; Bruno must drink purple – not pink), macaroni and cheese (little bowl noodles – not tubes), raisins, catchup, crackers (square, not round), and milk (in the blue cup – not pink).

Whose running this show anyway?!?

Smorgasbord

Cycle 6, Day 2

Just a quick update: The lumbar puncture is complete (still awaiting results) and she did pretty well coming out of anesthesia. For dinner she insisted on saltines, catchup, croutons, and Parmesan cheese (from the can). Go figure.

The whole family carpooled today to take Bruno to school and then Gianni to the hospital - her and dad are now comfortably (as can be) installed at PEC. She walked right up to the 2nd floor like she owned the place, jumped up on the bed and started telling her favorite nurse, Ryan, exactly how to do his job. She is amazing, and even after all this, continues to run the show.