Who's the Sickie?

So, chemo this time, has taken a greater toll on Jill's body than either time before......quite understandably.....it builds up in her system & just gets harder for her body to take. She has been throwing up every morning & has developed a rash from one of the drugs that just doesn't go away (they can't stop the drug, so they just try to control the symptoms of the allergy). Sounds bad, but it's amazing to watch her bounce back from the tough stuff. She shovels handfuls of scrambled eggs into her mouth every morning (don't ask me how it is that she actually LIKES hospital eggs...I swear, they don't come from real chickens), then looks at me like, "wait, this wasn't what I thought it was" and spits them all out, then says, "Dat's DOSE! Dat's Nasee! (That's gross, that's nasty)", repeating what I say to her every time she does that (but maybe she's referring to the eggs). She'll do this like, 3-4 times until she realizes that she doesn't like eggs anymore. At least not when they taste like metal (which is what most chemo patients say food tastes like while they're on it). Anyway, then she starts to whimper, "Mommy, hode my hand. My body hurts." She barfs, we clean up, then she's out running up & down the halls, dancing with the nurses, practicing balancing on one foot (using the "ballet bar" in the hallway...one of her favorite nurses, Janel, has shown her how to lift one leg up onto the bar & stretch....I'm doing most of the work, it seems, as she's too short to reach the bar), dressing up as various princesses, Dorothy, random crazy people (tap shoes, tutu, & bunny ears, strawberry-shaped sunglasses, Mardi Gras beads, and a magic wand), and pretending I'm "Ryan" & she's "Sharpay" (characters from Anna's new favorite movie, "High School Musical"). Last night, we pretended we were various ocean creatures in the hallway (until about 11 pm)....she was a nice fishie & I was a shark taking bites out of her tail, I was an octopus & she was a seahorse going up & down, and up & down..."Oh no! I dot tandled in you leds! (I got tangled in your legs)". The energy on this one is no match for the fatigue chemo (supposedly) brings on. So, she's fine. And time is flying. Sort of.....kind of depends. I fear the next few weeks are going to creep by as I am her sole playbuddy at least 5 full days a week. Once again, we are open to visitors (especially during the week), if you are pretty sure you're in good health. The next week, especially, as her WBC's have not dropped to zero yet. She'll be unhooked for at least a few hours a day...if I know a friend is visiting, we can try to time the freedom with the friend. Give me a call either on my cell or the hospital phone (we still have our own room 562-933-8327).

Anna is doing much better.....she & I had a break through the other night.....she wanted to pretend that I was a 4 year-old friend who had a sister in the hospital with cancer & she & I talked/played for about 40 minutes with me in this role. It was a bit like "play therapy"....I asked her (in my best kidspeak) if she ever thought her mom was too busy to pay attention to her & she said, "Yeah." I asked her what she did when she felt like her mom wasn't listening to her, & she said, "I sometimes say mean things or do stuff she doesn't like." I didn't try to teach a moral lesson when she said this, but just tried (as her little friend) to identify with her....or I would just not talk about it at all & play like a 4 year-old with her. It was hard for her to let me transition back to Mommy (she was so into it, I told her I was cold & she took me down to her "mom's" room & showed me where she (I) keeps her (my) sweaters...."I'm sure she wouldn't mind if you borrowed one....oh look! It fits you perfectly!"). The next day, we spent so much quality time together....I stayed off the phone & followed her lead....didn't rush her.....let her be herself rather than some stressed out, rushed, other child of mine. She revelled in this role. It was nice, for both of us. And when she acted out....one time hitting me on the leg when I didn't respond immediately to a request, I completely ignored the behavior....I asked her what she wanted for dinner right after she did it, in a very nonchalant way, & she barked, "I don't want dinner from YOU! Uh!!!" and stormed off to her room, slamming the door. I went about my business, & when she realized she wasn't getting ANY attention for it, she came out & said, "Um, chicken nuggets would be great." I refrained from talking to her about her behavior & just really pretended like I didn't notice it. It worked. Not to say it will always work, or that I'll always be able to hold back from trying to "teach her a lesson", but maybe the lesson was learned without me getting on my preachy chair & letting her know who was boss. Amazing.

At the hospital last night, Jill & Anna raced up & down the hall on their respective vehicles (the playroom now has 2 tricycles...Jill can't quite figure them out, but Anna is in Speed Heaven). She had a tattoo on her arm from a packet she got a few nights ago, welcoming her into the "Super Sib" Club.....an organization started by a mom of a child with cancer to recognize the siblings of those who are sick & make them feel important. Anna proudly announced to all the nurses, "I'm a Super Sib!" and pointed out her tattoo. It wasn't long before Jill began telling the same nurses, "I'm a Super Sib, too!" Anna started hearing Jill say this and quickly rushed down the hall, pulled her trike right in front of Jill's car & stated, most emphatically, "No, Jillian. You're not a Super Sib. You're a Sick Sister." Although this is true, in theory, we're not convinced.

Happy New Year Everyone!

Round Three

Being at home for Christmas was fantastic. We decorated the house a bit, made cookies (Anna is quite the baker, and Jill is very good at unwrapping, and eating, Hershey's Kisses), drove around looking at lights, and were among a handful of guests at a Gingerbread Making Luncheon at the Hyatt in Long Beach. The joyful moments that led up to Christmas were just as beautiful as Christmas itself. We went to a Presbyterian Church Service at St. Peter's By the Sea on Christmas Eve & the girls marvelled at the presentation of the Christmas Story by a bunch of kids just like them. Jill danced in the aisle much to the delight of fellow church-goers and Anna sat up front bravely among the other little people, none of whom she knew, and participated as best she could in the singing. After church, we went out to dinner. It was really nice to eat at a restaurant with our family intact, among VERY few people, and not have to clean up our mess :) Christmas morning was so relaxing....the girls were excited to find the plate of Santa's crumbs (among which were half-eaten carrots for the reindeer, an orange peel for Santa's elf "Shinglyschmoop", and an apple core that Santa himself left, all because Anna thought Santa should be eating "healthy snacks, not just sugar"...that's my brainwashed girl). The first presents they opened were socks (as I explained to Anna, sometimes Santa brings you what you want, sometimes he brings you what you NEED)....Anna halfheartedly tossed hers aside, "Oh, socks." while Jill danced around the room with a huge grin & her socks bunched under her chin, "Oh, sots! Sots! I yuv sots!!!" (Difference in age? Personality? Both?) Anna perked up a little later when she opened a package of underwear......High School Musical Underwear. The morning went so smoothly....each girl would play with her toy or read her book right after opening...there was no rush. We didn't need to ransack the place or hurry up to reach the end. It seemed there WAS no end. After a few presents, we stopped for breakfast, omelets & scrumptious homemade cinnamon rolls made with love by our friend, Renee (whose family celebrates Christmas with that tradition each year). Then back to gifts....there were so many from friends & family....Nutcrackers of the Lion/TinMan/Scarecrow, a dress up trunk filled with fancy schmancy dresses & accessories, books, trains, the Nutcracker Theater Book/Paper Dolls, Colorform Dresses for Princesses, art supplies, dolls.....Santa was extremely good to our girls this year, thanks to all of you. After lunch, Jill took a nap, and Anna & I walked to a few friends' houses to deliver cookies. We joined our San Pedro family, Dina, Jim, James & Mikayla, for dinner at their house. The girls had a blast, as usual. Jill really sees them as her surrogate family (as does Anna). They are just such wonderful people. It was a magnificent holiday. And the first that we've spent as a family of 4 in our own home! We were where we should have been this day.

Day after Christmas brought the dread of going back to the hospital. I was having a rough day, feeling tired & run down from all the excitement & lack of sleep (my own fault), and as I've told many of you, for me, the anticipation of a dreaded event is usually way worse than the actual event. Jill was her typical jolly self, but Anna had various "problems" throughout the day that earned her time out after time out, which led to her stating she was going to get out a gun and shoot me, which led to me spanking her, which led to me feeling guilty for spanking her (even after she laughed in my face & said that it didn't even hurt), which led to an out-of-control spiral downward for the both of us until we landed in the hospital (that sounds pretty bad, huh) face to face in Jill's new (old) room hugging, crying (me) and saying goodbye for the night. I told her I was sorry I spanked her but I just didn't understand why she said what she did. She nodded, patted me on the shoulder & went on a little rant about wearing a hat versus wearing a hood. As she was leaving with Matt & I was sobbing because I just had the worst day & just didn't want to do this anymore & Matt was hugging me saying I was the best mom & the best wife he could ask for (what does that say about HIS standards?), I said, "Why am I the only one crying here?" Anna looked up at me with a smirk, shrugged her shoulders and said, "Yeah, why are you crying? This is a 'little thing'," parroting back what we always say when she goes on about perceivably insignificant traumas. Good lesson.

Rewind: when we were sitting in the car waiting for Jim & Matt to lug 3 loads of stuff up to our room, Anna in her carseat asleep, exhausted from fighting with her 32 year-old mother, and Jilli bundled in her jammies & winter coat in my lap in the front seat, excited to be "at the wheel" for the very first time!!, we were listening to Jack Johnson's Lullaby CD, and I was crying, not even trying not to...I mean, I'd been doing that all day, why stop then?....Jilli took my face in her hands & looked SO imploringly into my eyes (like a SAGE...she was freaking me out), and said, "Mommy, don't be sad. Why you sad?" I offered the real reason to her (like she was going to get it or something), "Well, Jill, I'm sad because, today, we go back to the hospital, and you won't get to be home with your sister anymore for awhile, and I'm going to miss you being at home." And she said (like she totally DID get it), "Don't be sad about my hapitoh (hospital). I be here with you. Close you eyes." I closed my eyes. She brushed her baby hands down each of my cheeks. "Open you eyes." I opened them. "You feel bettuh?" I said I did. "You be happy Mommy. I yuv you."

Which brings us to today. Jill sailed through her bone marrow biopsy & spinal tap like a trooper. (Won't know the results until next week, but I'm assuming the best, and that's rare for me.) She woke up all loopy & scattered as usual, it's fun to watch....she's just like herself, only more mellowed out. She hugs everybody even more, and holds on longer. It's sweet. One of the nurses in recovery today (Janel) said that she wonders if how kids are coming out of sedation is any indication of how they'd be intoxicated as adults. Jill would be the one at the bar buying shots for everybody & kissing the bums in the alley. Janel was called to be a bone marrow donor yesterday, by the way. She'll know in 3 weeks if she's chosen, and will keep me posted on her experience. I'm excited to see how it turns out. What an honor. I got goosebumps when she told me.....

The San Pedro Bone Marrow Drive is a week from Saturday. A reporter from "More", our local Pedro paper, is coming to the hospital tomorrow at 10am for an interview. Hopefully the article will be in Saturday's paper so that the drive can be hyped. So many people have put so much work into getting the word out, fundraising, and supporting this effort. We are so impressed with the lot of you.

I've been getting a lot of positive feedback from people about how Matt & I are handling this. More about me, because I'm the one who puts it all out there in public (Matt is the strong, silent type). I appreciate the kind words & encouragement, but I certainly do NOT feel I am handling this well at times. There are a select (lucky) few who get to see me broken & out of my head about all of this. It's hard to reveal that side to people. I actually only do on occasion because I can't avoid it....I'm getting better at not feeling bad about feeling bad, but I'd still really like to keep up the facade that I am sailing through this storm with a smile on my face. Maybe it will comfort some of you to know that it is, in fact, a facade. Kind of like people (me included....in a big way) who send out photos of themselves and their families...in every photo, there are smiles, & laughter & hugs & kisses, & sunshine & daisies. Are some families just happier than others? Heck no. You think I'm going to send pictures of me losing it on my 4 year old? Or completely unproductive for a 3 hour stint on the couch in front of the dumb tv while my kids pull each other's hair out & wreck the house for lack of attention? Or snorting cocaine while downing a 5th of vodka (oh crap, I wasn't supposed to let that cat out of the bag)????? Yep. So, human to human, thank you for caring enough to read my journal. If I haven't thanked you personally for your card, gift, or service to help my family through this yet, don't hold your breath. There's too many of you!!!!! It never ends!! But seriously, we appreciate each & every act of kindness, and will send them back out into the universe when this weight has been lifted from our shoulders. We promise.

Hope everyone had a wonderful Holiday. Now go outside and breathe in some fresh air for me!

We'll be Home for Christmas!

The doctor saw Jill today...she is concerned that if she is congested tomorrow morning, they will not be able to sedate her. Her ANC is back down in the "normal" range (3000), so the doctor feels confident that we can wait another week to start chemo. So......as the title states, we'll be home for Christmas! I'm so excited!! There's so much we get to do now! We're going to the Hyatt Regency in Long Beach tomorrow for a Gingerbread House Making & Luncheon (for parents, kids with cancer & their siblings)...it's supposedly a really big deal...they only had 14 invitations, and Lori, our social worker, seemed really happy when she found out we could go! What an honor. Then to Candy Cane Lane for Christmas Lights (anyone want to join us? maybe Sunday?), we'll make cookies (I wasn't planning on it, but we have so much more time now!!!), Santa will have time to wrap presents...heck, we might even be able to make a few gifts! So, Merry Christmas everyone! It's going to be much brighter for us with our family all together AT HOME.

To Miller's or Not to Miller's?

We may go back to the hospital tonight....depends on Jill's cold....her ANC is 10,000, which freaked me out (they told us that they want to start chemo when she gets up to 1000 or 1500). All this means is that her body is fighting an infection...her healthy WBC's are doing their job. Healthy people typically have between 4000 & 13000 WBC's (the number is higher if you are fighting an infection). Anyway....Jill's doctor is not too fond of letting kids "hang out" at a really high ANC for too long (risk of leukemia cells coming back), but she deems herself more conservative than the other doctors in the practice...she said they would probably be fine with her staying out until after Christmas, as there is no scientific data to show that the longer your #s are high, the more risk involved. So confusing! So here we are...she was scheduled to go back tonight, BUT, she's REALLY congested right now, and they don't want to sedate her (for her lumbar puncture & bone marrow biopsy--both of which are mandatory before starting chemo) if she may have trouble breathing. We may be home for Christmas yet! (Don't know how I feel about this...kind of just want to get it over with, and it's so much harder to go back after being home for so long).

This morning, she woke up bright & sunny, as usual...excitedly pointing to her dresser "There's Dorsee! There's Dorsee!" I laid her down for a diaper change & she said, "Anna upstairs in the playroom watching TV. I wan see my sister. I yuv her." At breakfast, she said, "My medicine ha yittuh bit uh yodurt in it (that's about right...yuck!)." She & Anna are playing together with the Little People Hospital Shana bought Anna for her birthday (I let Anna stay home from school today). They are such great friends (with the every-5-minute squabble). I'm so glad they have each other. And regarding going back to the hospital, the girls both seem much more prepared this time...like they understand so much more. And neither girl seems sad about Jill going back in....Anna will get to spend more time with Johnny & Addie, Keili & Keira, Mikayla & James, & Jill will get to be the hospital celebrity again! And I'll get to not to do chores around the house all day! (Being here 24/7, it's amazing the mess you create). More when I know what's happening (waiting for her dr. to call back).....

Weekend Update

So, we've been home since last Saturday and what a wonderful stay at home it has been! Jill & Anna have gotten to spend so much quality sister time together (hugs & pushing down included). We have gone on a few walks, visited a few parks (Anna suggested Peck Park one day and Jilli said, "No Anna! Dat's a sandy part (park)!"), played in the snow (ice) on Mesa St. in San Pedro, danced around to Christmas music in front of the stage, acted out fairy tales (the same 3) over and over and over (props or no props), read lots of books (Jill's really into Nursery Rhymes right now...she can recite a ton of them all on her own..she read to all 3 of us this morning..it was soooooooooo cute!), put up our fake Christmas tree, attempted to decorate a gingerbread house, and did a mess of chores (that would be the grown-ups). Life is normal again. It's amazing how quickly we all can assimilate. Jill still talks about the hospital every day....especially CiCi (the nurse's aide). Yesterday she said, "The nurses are my fwends." I know she won't be sad when we have to go back, but it sure is getting harder for me to face....maybe it's the Holidays or all that I know we'll be missing while we're there. It's just the most enormous inconvenience I can imagine, and though the end is in sight....we still have so long to travel. We're just so thankful that Jill is HAPPY and (seemingly) amazingly healthy!!!! Anna has had a rough cold since Jill got home, but Jill isn't showing ANY sign of having caught it! She is such a hearty gal. Spunky. Totally spunky. I'd like to share with you some of her little ramblings from the past week:

"You ha pitty hair. I wan tutsit (touch it). Wee-hoo!" (she says this at least 5-6 times a day, maybe because we crack up every time she does)

"When Daddy all done tsainz my bopper, I tum pay wif you."

"You don't weed to me, Mommy. I do it all by mysef."

"Doh away Anna. I don't yike dat."

"I be Dorsee. You be Wicki Wisssss....."

"Don't see me! I will hi (hide) fum you. I doh wun away!"

"Wha you fawit (favorite) tuyuh? I yike bwu. Maybe you tan twy a marter (marker)?"

And my favorite....if you make a comment & don't have your facts straight....

"A---su-yee (actually)....."

We are going to Manhattan Beach tonight for Christmas Carols & Fireworks. It's a tradition. And I'm so glad Jill will get to be there....it will be so much more special to us this year.

We will find out on Monday if we return to the hospital sometime this week (that's my expectation). Will keep you posted.

The Torrance Bone Marrow Drive was a HUGE success.....195 new donors & at least 60 gave blood. I will post more on this later.....but must give TONS of credit to Ann Gerlach who planned & organized the entire event. Many others helped! It was amazing!!!

Have a great week, everyone!

Bone Marrow Drive This Friday!!!

Blood & Bone Marrow Drive
Friday, December 14th
3:00pm-9:00pm
Torrance High School Annex Cafeteria

If you are planning on coming and have not let us know please RSVP to ann@getswabbed.org. Caucasian donors can help our fundraising money stretch farther by also signing up for a blood appointment with the Red Cross at www.givelife.org (sponsor code = Jillian). There will be a $10 fee for Caucasian donors who do not give blood. People of all other ethnic backgrounds are free!! Please bring your drivers license and the name/address/phone #/e-mail of two people who do not live with you. The NMDP will not contact them unless they are looking for you! Thank you for your suport!

Ann Gerlach :)

Home Again, Home Again, Jiggity Jog

Well, so, surprise! Jill was sent home Saturday night. No more cough (that was fast) & her ANC is around 300 something (it had hit 600 something, so they knew it was on the upswing, & felt confident it would be back up soon). The Dr. predicts she'll be home at least a week. We're so excited to have her back home!! She is such a little ball of sunshine. Always happy, always excited about everything. Cousin Kevin is staying with us right now (he got off the plane & said, "Operation Holy Crap is UNDERWAY") & she just loves him to PIECES. They've been playing all kinds of games & acting out fairytales & he's been teaching her phrases like, "Get with the program, Oprah" & "tastes like chicken". Her language continues to blow me out of the water!!! Tonight she said, "When Daddy done sainzing my bopper (diaper), I pay wih dis (Kevin)". And I'm so impressed with how she handles discomfort/slight pain & changes in her routine! For instance, when she got stabbed in the hand for an IV placement (for a kidney test) on Friday, she looked at me like, "what just happened????" & said, "See (she) hurt my hand!!!"...her chin quivered a little, but no tears. Tonight, I took the tape off her chest that held the plastic bag over her "dressing" that absolutely cannot get wet (for her bath)...it hurts, I know it does....it's TAPE...worse than a bandaid....way more surface area....sensitive parts of the skin (like her armpit, for instance)....I talked to her about Frosty the Snowman ("and what happens when he loses his hat?" "He tan't talk!" "And how about when he gets hot?" "He met (melt) away! And tids det sad (kids get sad)!") and before she knows it, it's over, & she is being praised up & down the block for being such a strong, big girl. Which she totally IS.

So, to backtrack....while Jill was confined to her room, the Child Life people never forgot her....they always sent special visitors to HER....we had volunteers make hand-painted aprons with her one day, a woman from the Long Beach Symphony come in to play her flute for 30 minutes while Jill danced around the room, our friend, Amy from Sunshine Kids, came to help Jill make Christmas cards, and Pandie/Huxley, Jill's 2 favorite "little" dogs let her pet them & give them treats. Friday was an excellent day for Jill & I. Santa Claus came to visit her in her room (and gave her a really nice gift) and we spent the next 2 hours on the first floor (they finally let her leave her room...with a mask) taking part in a HUGE event called "Santa's Workshop" sponsored by Tucker, the construction company that is building the new wing on the hospital. They had games & crafts, tables loaded up with toys & gifts that Jill could "buy" for every member of her family, then gift wrap with some volunteer help, yummy food, face painting, and caricature sketch artists (hers turned out so adorable!). Staff from Tucker slipped some gift cards for "mommy" in her bag, as well. It was so much fun!! The adoring comments made by so many people there about my baby made me feel so happy & proud to be her Mommy. The IV & kidney test (standard protocol at this stage of the game...and all is well) made me even more proud of her. Lise came that evening & stayed with her while Matt & I had a nice romantic dinner at a cafe right down the street from the hospital...we ran into a co-worker of Matt's at the Long Beach Historical Society building & had a very nice chat with he & his wife before Matt headed back to the hospital to spend the night, & I went off to pick up Anna from Kristi & Ian's. Saturday was a whirlwind day of "is she coming home or not?" while Matt waited to hear what the doctor had to say. Kevie went up to the hospital to move us out while I frantically cleaned for 4 hours straight while Anna played on her own (she's getting so much better at that) & fell asleep on the couch watching Mary Poppins. We went to Mikayla's 8th Birthday Party at Olivia's Tea Room shortly after Jill got home, which brings us to today....Anna's bday party at Ryan Park. Which was awesome. The weather was amazing, but even MORE amazing is the work my friends did to execute my plan of a fun & exciting day for our big girl. Rebecca brought balloons, Ann got food & drinks, Heather made games, Jannah brought more food & carted loads of stuff (including the games to the party), Renee made cupcakes, Sharon played guitar (complete with fun Wizard of Oz lyrics sung to the tune of "Down by the Bay"), Cristina brought a pinata, Sam brought plates, soooooo many people helped set-up & clean-up, Dina videotaped....the list goes on!!!! We could NOT have pulled off such a feat alone. It was so wonderful for Anna. She had a BLAST!!!! We had a blast! Jill stayed home with Kevin (on HIS actual birthday) because so many kids are sick right now (6 of Anna's friends could not come due to illness) & we didn't want to risk Jill catching anything. Anna went to bed tonight with a fever. Let's hope it doesn't spread....but I'm assuming it will. It would be miraculous if GiGi didn't catch it! If she gets a fever, she immediately goes back in. Ugh. Anyway, tomorrow's plan is for Kevin to entertain Jill upstairs (or rather, Jill entertain Kevin) while I contain little sicky downstairs, and Matt comes home as soon as humanly possible from work). I wish Kevin could stay forever. It is so nice to have him here.

Okay, I have to go to bed, but I MUST mention (MENTION? rather SCREAM & SHOUT!!!!!) that the Bone Marrow Drive held at Sts. Joachim & Ann today in St Charles, MO (plan conceived & brilliantly executed by my DAD, with many willing volunteers) inducted a total of:

232 NEW BONE MARROW DONORS

Wow. And that, with an ice storm. Impressive. God Bless All of You!!!! We heard a handful of inspirational stories from today & would love to share more of them on the blog. As you think of them, jot them down & shoot me an email. I am moved by the love sent out to us from so far away & only wish we could've all been there to witness it.

Happy Birthday Great-Grandma Hunn. "May the Dear Lord Bless You!" From Jillian's lips to God's ears. That doesn't taste AT ALL like chicken.

Much Improved

Jill is doing much better..still coughing & wheezing, especially when she sleeps, but the dr's have kept it under control with steroids (which make her hungry--GOOD--and moody--LAUGHABLE ... a 2 year old with a mood-control problem ... isn't that a given?). She is now yelling at Matt about something ridiculous while I take a very short computer break. He is going home tonight (I am now going on 48 hours here, but it's more hassle to go home & fight with a very tired 4 year old who has been at Disneyland all day...thanks Dina!) to get her to bed in time to get up at 6:30 so she can get to her RaceCar Driver's house at 7:15, so I can be back here at 8am. And making a lunch, and getting caught up in what a mess my house is (no thanks to Cousin Kevin, who arrived yesterday and hasn't done a darned thing....have fun at Disneyland, did ya, Kev? Hmm? Hmm? I'm KIDDING! I just hope you're prepared for how dirty our bathrooms are Buster Brown.)

Okay, so Lise is coming tomorrow (barring surprise illness) to stay a while with the "J" Bird so Matt & I can go out to dinner (with a gift card from Rebecca & Johnny). Matt will spend the night with Jill due to her coughing fits, and I will take Anna to ballet in the morning & do last minute touches for her bday party on Sunday. It's gonna be so great (thanks to 20 or so very wonderful friends that are pulling it off FOR me....I'm so excited!).

Thanks for all of your phone calls & notes, & emails, & gifts & donations & prayers. We are doing okay. Can't believe Christmas is just a few weeks away.

Pneumonia

Unfortunately, Jill's cough has gotten worse......she had a chest & neck xray last night following this terrible croupy cough & trouble getting air in. They put her on a narrow board, strapped her arms down by her side, tilted the top half of the board up so her head bent back (she was looking upside down), put massive headphone looking things on either temple & snugged them up, then taped her forehead & chin to the table (if you can picture this)....she fussed for me, I talked to her (they wouldn't let me stand next to her), and she calmed...."Mommy's right here, Gigi. Let's sing a song...." "Otay, Mommy, otay...." I started to sing & the tech said, "Shhhhh...I want her to cry (the inspiration would help make a better picture for the xray)." Ummmmmm....so, I'm supposed to pretend I'm not here while my poor little baby is strapped to a table, scared out of her wits? Okay, if it gives you a better picture. Gulp. "Mommy? Mommy? MOMMY?" Deeper, quicker breaths....quicker, quicker, sucking air for a huge explosion....SNAP,Click...."Okay, Mom, go get her." I dash...."It's okay, it's okay, it's okay....you did so GOOD!" I help get her unstrapped, untaped (OUCH), she's shaking, I'm shaking, she grabs onto my neck & wraps her legs around my waist, I start to sob. "I'm so proud of you, baby. I'm just so proud of you. You're such a big girl." She pulls back & looks at me, beaming. "Tan I have a Pwincess Stickuh?" I beam back through the tears. You can have THREE! She picks her three....Snow White, Sleeping Beauty, Cinderella. It's a trio. You can't just have one....or two....the tech walks by, "Oh, which one are you going to pick? Only one....." Screw her. Are you kidding me? I say, "Cinderella it IS." as I hand Jilli Cinderella & put Snow White & Sleeping Beauty in my pocket.

She didn't sleep much at all last night. They started treating her for pneumonia today with breathing treatments & a different antibiotic. The nursing situation is a mess as far as we're concerned. Our nurse yesterday & today missed so much, some of which was no fault of her own, but it's no fault of mine either. I expect that when my child is sick & needs a certain medicine, she'll get it....not another one that she really shouldn't be getting or that one will be skipped because of an "oversight". Thank god Matt brought a lot of the mistakes to my attention...I was too sleep-deprived to notice. The dietician is phenomenal....she is giving us a lot of good ideas about different foods to try (Jill is having a tough time eating, mainly because it hurts to swallow) & she researches new "whims" Matt has along the anitoxidant or herbal supplement trail rather than blowing him off.....she spent a good deal of time talking to him via phone today about a supplement he inquired about. So, with the difficult times, there are smooth ones. It's a balance. I am disappointed at times, but extremely pleased at others. What more could we ask for? This is Life. If it were easy, what would any of us have to do?

Matt & I feel that no one should come visit until the pneumonia has cleared up....we can't go introducing other random viruses (that you may not know you have) until this one is completely gone (and please send your prayers/positive energy for full recovery from this.....a friend of ours is in the I.C.U. with pnuemonia right now...same cancer diagnosis....it could turn for the worse fast). Please also pray that she doesn't have strep throat. This is one of the 3 top killers for kids in this situation. As well as she has been doing so far, this ugly disease is certainly not going quietly......it reminds us how precious every second of play really is. Another reason why I may not answer the phone when it rings (I haven't given out the new room # mainly for that reason...one phone ringing when I can't answer it anyway is plenty...and the room phones don't have off switches). Jill needs every bit of love and attention I've got....Matt too. He is doing a lot of this work too....don't want people to forget about him just because I'm the "voice" of this blog. He is inspiring to me in his love for our baby & our family. We got to go out on a date the other night (thank you Lise!!! I just realized your name is not spelled traditionally......sorry about that!). We had a very romantic dinner at Think Bistro in San Pedro & I was reminded of just how much I love him. I am so proud of his strength & will to make this better. He is truly the backbone of this family. And SUCH an atypical husband! He cooks/cleans/shops/cares for the kids....all gladly. As if it should never be a question. We have a very EQUAL relationship. We respect each other greatly (at least, I hope he knows I respect him.....I can get a little out of line at times) and love each other tremendously. He'll post one of these days, maybe. If either of us should be a writer, it's HIM. Okay, enough.....I have been told firmly by a few close friends that I should be in bed by now.

Thanks for all the hard work you're putting into the drive, Mom & Dad. I'm sure it will be awesome...the quantity doesn't really matter.....it's the love behind it, and the awareness you're raising. We are not comparing efforts from one drive to another, so I hope no one who is helping with one feels that way. I want you all to know how much we love you & appreciate every little thing you do & say to help support our baby through all of this.

Cousin Kev comes in on Wednesday.....hope he's bringing his apron, toilet-scrubbing gloves, & butler outfit. Boy do we have a job for him.

Garage Sale Success!!!!

Thanks to all who worked so hard putting on the Garage/Bake Sale to raise funds for the upcoming bone marrow drives. We grossed over $5000!!!!! Thanks especially, to Ally & Dave for giving up at least a week of their lives & opening their home for this massive event. Thanks to everyone who donated items, helped organize & sort them, hung up signs (Danielle & Sallie), moved furniture at 5:00am, baked (and bought) goodies, hung up/passed out fliers, manned the cash register & front table (especially the 2 Shaaana's, Brenda, Dina, Jim, Mikayla & Don---random shopper who offered security for a good 2 hours), passed out more flyers for the bone marrow drive all up & down Pacific Ave (another "shopper" named Lucy, and her beautiful daughter), helped watch the kids of the helpers (THAT was a big job....the 2 Ally's manned the fort most of the morning--that was probably the most exhausting of all jobs), helped sell, helped move, helped load, helped clean, helped count cash.....etc. etc. etc.!!! There were so many beautiful stories from that day.....I am waiting for people to get me their favorites so I can post them all here (I think everyone is still recovering at the moment). I will share a few:

A woman named Alyce attached pretty little rainbow notes to green bracelets which read "Tell Cancer to Take a Hike" for us to pass out/sell.....we did not know her....she happened upon the blog & was moved to action :)

A man came by & made a donation in the name of his 5 day-old baby, who passed away recently after being born prematurely.

Another man saw Jill's poster at the bank & made a donation....with tears in his eyes. Gave me the best hug ever. Didn't even know him.

Numerous friends & friends once, twice, and three times removed came to help (Beach School Family! You are Wonderful....thanks especially to Teacher Sandy & Tim!) & to buy, and to love all of us.

Our local Councilwoman, Janice Hahn, came by to show her support as well! It was wonderful to see her happy smile & to know she cared. Thank you, Janice, for believing in San Pedro. My husband & I did not grow up here, but feel now as if we have....I've never felt such a sense of belonging & community as I do here.

Thank you once again to the Pedro Planning Team for their vigilance with the GetSwabbed campaign! Ourania, for creating, and Shana, for ordering the shirts....and selling them with gusto! It is so empowering to make change happen, isn't it? Who knew just a few people could make such a huge difference.

I have so much else to share, but do not have the time or energy to do so right now....I need your help to share this story. Please email me at squashdiddlydoo@msn.com before you forget what an amazing day this was! (I don't think I ever could!!). Pictures to be posted soon.

I have not forgotten the gobs of people who do not know our family personally, who made sizeable, and (collectively sizeable) donations to the cause. Every little thing you do is MAGIC.

Fiasco Central

Jill had a rough day yesterday. She woke up nauseous & ended up getting sick to her stomach after a few bites of breakfast....took me forever to get her anti-nausea meds because the doc was in rounds & couldn't tear herself away. We have had a different nurse every day for the past 5 days (on every shift) because we are not on chemo anymore right now & they only have so many chemo nurses to go around....they are pulling nurses from other floors, nurses who have very little to no experience working Hem/Onc. It's frustrating, for them AND for me....I feel like I have to re-explain every single thing every day....no, we don't take that orally, why? because, well, see, it's a long story....and yes, we do need a sedative for dressing changes because she FREAKS OUT when we have to do them once a week....and why doesn't she have a standing PRN order for Tylenol? Why do we have to wait 5 hours for the doctor to put an order in for her to get platelets???? We got the VERY LAST bag last night around 6 pm....they now have to order more from the Red Cross, and it will be at least 24 hours before one is ready....if she had to wait 24 hours for platelets as bad as she needed them today...her gums were bleeding, she was bruising on sneezing! It was absolutely a ridiculous day. (By the way, if you ever donate blood/platelets, try to give directly to a hospital as the Red Cross, understandably so, charges hospitals for them). So, she was feeling sick all day....sleeping a lot....and towards the end of the day, started getting low-grade fevers. By 10pm, she was really warm....but cooled down just in time to NOT have blood cultures drawn to test for bacteria. (If she gets to 101.3, they consider it a "spike" & automatically draw cultures, then start a 48-hour antibiotic, which, if tests come back positive for bacteria, turns into 14 days; if tests are negative, it's likely a virus & will just have to run its course....may take longer in kids that are "neutropenic", meaning very low WBC counts.....this is why she can't go home while "recovering"....if she spikes a fever at home, we may not be able to get her to the hospital in time to get it under control).

Okay, so she finally crashed at 12:30am Wednesday.....at 6:30 am, her nurse woke me up to tell me (as gently as she could) that they were moving the entire unit down to the 2nd floor (General Pediatrics...they had moved those kids to another wing) as they needed to start construction on our floor (we were all under the impression that this wasn't going to start until Spring). I was like, "okay", and started packing....Jill woke up right as I was finishing (mind you, we just moved 2 days ago into this room) & I carried her down while the nurses aides took the crib & a huge wagon full of our stuff. We got settled in another private room....it was big & bright, but old & ugly & there were workers on ladders right outside our door working on something in the ceiling....dust was flying everywhere....the nurses seemed pretty concerned about this..."Let's close your door".....the filtration system on this floor is not as efficient as the one on 3rd.....we were all worried about that. The reason the Hem/Onc (Hematology/Oncology) kids are isolated on that unit is due to the HEPA Filtration System.....she was now going to have to wear a mask when in the hallway or playroom because the hallway isn't filtered. Makes no sense. Those silly masks don't even FIT her. What's the point? And now, her much anticipated playtime sessions were going to be cut from 2 to 1 so that General Peds & Hem/Onc kids could have dedicated sessions, with maximal cleaning by volunteers we don't have yet going on between sessions! So, as I'm putting all of our stuff in drawers, closets, cabinets and pondering things I cannot change, the nurse walks in & says, "Man, I wish you weren't so efficient (implying that I unpacked prematurely). We're moving back upstairs." Apparently, the doctors were not fully aware of this move & were livid that it was happening. They were adamant our kids weren't completely safe down there, so they shlepped us all back upstairs.

Soon after this ruckus, Jill spiked a fever, for real. She is now on antibiotics & Tylenol....Matt is with her (he is mostly over his cold, but not completely....I needed to get outta there for a night & see my favorite soon-to-be 4 year old, who called me "stupid" & said she didn't want to be my friend because I was walking behind her down the hall & she wanted me to walk in front of her....she yelled in my face & I nearly whacked her.....ooooooo. I'm running outta "what'sa matter honey?" I gave her a good "talking to" & she broke down & sobbed, "I want my Daddy, and my sister & my mommy all at the same time!" Man, this is TAXING. One can break into little pieces over such madness. I fear I am headed for the cliff sometimes, I swear.

I really need to get some sleep.....a lot of wonderfully special things have also happened in the past few days....I will share these in my next entry. I promise the next one to be more uplifting!

My thanks & PRAISE for the Garage Sale Committee.....this thing has taken off in such a big way! You are all so dedicated & amazing. I hope you know how much we love you & I wish I could help more!! I will be there Sat morning. Can't wait.

Cousin Jessie, for the "Jellybeans for Jillybean" campaign in St. Louis....putting cans out at various restaurants & her hospital where she is a nurse.....over $500 was raised in just under 2 months time. We are stunned. Thank you Fam!!!

Immediate thanks (and then I really need to crash) to Shaana the RaceCar Driver, Dina/Jim, Jannah/John, Kristi/Ian, Lisa & Michelle for being on call all week to take care of Anna & stay with Jill so we can have a rest....or a much anticipated DATE (please pray for nobody being sick on Friday!).

Oh, and Cousin Kev......get your flu shot, and wear a gas mask on the airplane. I'm serious. If you get sick, we're sending you home & putting a moratorium on any "by-flight" visitors. Poor Mary was sicker than a dog, and ended up going home 4 days early!! It's unavoidable and no one's fault, but such a complete bummer. As is 6:00 am, which is FAST approaching. I'd wish for more hours in a day, but that would just draw this whole cancer-thing out, so time.....FLY!

Emotional Roller Coaster & Pleas for Playmates (and/or Facilitating Adults).

Don't know how long this post will be as Jill is due to wake up from her nap at any moment. I've been really feeling emotionally drained over the past few days...like, it's hard for me to smile & make eye contact, and speak up so I can be heard. I'm having a really hard time blocking out little distractions, like the tv on while someone is talking, or Anna's voice while I'm trying to type an email, or the lights on too brightly, or 3 kids dancing around & having a great time right in front of me. I had a sore throat when I woke up on Friday morning and because of that, Matt was Jill's primary caregiver from Thursday at 5 pm to Saturday at 8pm (at which time, our friend Jim kicked him out & stayed the night with Jill, because by then, Matt had it, too). Now, my sore throat seems better, but who knows? It's so hard to judge when you're contagious, sometimes....and she's so at-risk right now. If we had a choice, neither one of us would be here....but we have no one who can stay around the clock with her, and know how extremely taxing it would be on her emotionally to be without us, always assuming that we're going to come back at any moment...she's so little and dependent still. How much would that lower her immunity, to be sad because her parents left her....we don't know what to do. Anyway, I'm here now, and she just woke up....so I guess I'll finish this later.

Well, it's the next evening kind of later, and it's amazing to me still how much of an emotional roller coaster this is. I went from being completely down about this whole thing...the novelty had worn off...I was DONE....just wanted to get outta here, but they moved us to a private room because she was coughing so much, and that has made all the difference. Not having to share your space, your conversations, your light, your energy, the sink....not having to worry that your roomate or his/her nurse or visitors are going to wake your kid up when she really needs to sleep (can't tell you how many times "naptime" was cut short because the roommate got a gob of boisterous visitors....or all the fluorescent lights on the roommate's side slammed on and stayed on...can't blame them...we have the natural light from the window, they have nothing). And it's not as if people are being actively inconsiderate...they are just trying to get through this horrible situation themselves. I have all this angst towards them through the rough times, even knowing all of that, and get mad at myself for being so daft.

The lesson here is that, to be victorious over this monster, one must be flexible, understanding, and tolerant. If we get to the end of this torn up & angry, we will have missed the lesson. "Oh, how wise", you may say.....talk to me in the midst of struggling to hear the calming voice in the midst of all the chaos, and you will agree, that I am as raw and immature as anyone.

There are so many stories I wish to share, but do not have the time due to being the only one here with Jill until Matt is better (not including my wonderful support system....Michelle, Lisa, Jim, Dina, especially, who have convinced us that we need to rely on them sometimes....in a BIG way....and don't allow us to feel the least bit guilty for it).....I have so few breaks from this little sponge of a child. She wants to watch /learn /participate 24/7. At present, she is sitting in her bed, pretending to be stuck in the muck..."Hep! Tin Man! Hep! Dorsee! I stuck! Ge me out uh here! Oh, tanks. I so pwoud uh you!" when she should be asleep.....I do feel bad for leaving her to play on her own so much today....I've just been spent. I would've talked about me behind my back to another parent before all of this happened. Now I understand why parents sometimes (often) ignore their kids. So, anyone wanting to visit must know that I intend to make you my kid's playmate (without any facilitation from me) for at least half the time you're here. If you have the time, she has the energy....and she will make you use every last bit o' yours.
Please come play with her! Please!!!!!

REMISSION ACCOMPLISHED

Yes, you read that right. Jill is in remission. They found NO Leukemia cells in her bone marrow last biopsy (one week ago). This was done prior to her beginning her 2nd round of chemo. Typically, children with AML have less than 5% Leukemia cells in their marrow AFTER the 2nd round. For her to have none after the 1st round is wonderful news! After Matt & I cried & high-fived & hugged over this, the doctor brought us back to reality with the cookie dough analogy.....when you take a scoop of chocolate chip cookie dough out of the bowl, it may have not ONE chip in it....that doesn't mean there are not chocolate chips in the dough, just not any in that one scoop. The sample of bone marrow they took showed no leukemia....but, we are not necessarily out of the woods (which is why they do 4 more rounds). That said...we're still elated.

She finishes chemo completely at 4 o'clock Friday morning & will have another 3 weeks or so of "recovery" before she can go home for her week (maybe two?). We hope to be home by Christmas, but would also be satisfied to start back on the road to getting this OVER WITH. She is wearing us out with her constant need to be entertained every second and her Go Go Gadgetness. That girl is quick & very unpredictable the past few days, especially.....today I stopped in her doorway to talk to another parent & she darted into the room (she's not attached when not having a drug administered....only if she stops hydrating do we hook her up to fluids). I didn't think much of it, she does it all the time & usually just dances around with her "Biddy Boddy Boo" wand or searches for a new toy to play with. When I pulled back the curtain which divides the 2 sides of the room, she was in her crib. Yep. She had climbed up into the big armchair that sits next to the bed and straddled the 8 inch gap between the chair & the bed, shimmied over her crib side (which was raised about 2 inches) and floopy-doop. There you go. I shrieked, "Whaaaat? How did you....where is the....who put you there?" And she very proudly stated, "I time into my bed my SEF." Oh, and apparently (according to a phone call 5 minutes ago from Matt, who is currently at the hospital with her), she can climb out too. "It starts out as a headstand....." HA!!!!!! (I'm laughing because it wasn't on MY watch).

Thanks to friends Lisa & Michelle who visited yesterday & brought gobs of fun stuff to do! The stamp kit, construction paper, crayons, STICKERS (Jilli decorated many doors yesterday at 11:30 pm & gifted each night nurse with two hands-full of their choice of stickers), foam decorations, shells & rocks (which I'm saving for a really crazy rainy day), and I'm sure I'm forgetting 50 other things...Michelle, you SPOIL us. Madison & Jilli became fast friends. It was so endearing. Thanks also to Michelle who printed out, copied (color-copied) & sent out 85 letters to my highschool graduating class ('93, 'yo) in the span of a few hours. Acted like she could've done it in her sleep, and immediately asked, "What next?"

Don't know if I thanked Laurie (Sammi's mom) for the incredible craft basket she put together for Jill & Anna, complete with tons of prepped crafts & either a model or photograph of completed project! And the accompanying basket of supplies with which to make each craft! How very thoughtful & creative. The girls have gone through 3 of them already.

To Jolly Jaeger, friend of my Uncle Tom's....she & her husband, Dwight, live in AZ. We've never met them....they've sent us 2 of the most darling care packages! Homemade playdoh, a lullaby CD, a ballerina dress (pics to be posted later).....WOW. Humanity.

To my Pedro Home Team who have rushed like madpeople to spearhead their GetSwabbed campaign & to set up the Garage/Bake Sale (150 people so far on the eVite list....Ally, you rock!). The website is nearly finished....I was so moved when I read it....if flows so nicely (Jim is a computer GOD). Shana G. cemented the location for the Jan 5th drive (Cabrillo Aquarium). Ourania is feverishly working on the pamphlets, and there is so much else being done behind the scenes, I can't even imagine! My friends are going to CURE LEUKEMIA! It's nice to have ambitious friends :)

To Dina, for always calling me when she's at one of 5 grocery stores "Do you need anything while I'm here?" and for being at my beck-and-call day and night. When I thank her, she makes me feel like it's a given.

To my sister Beth, who gave me her noise-cancelling sound machine which drowns out most of the beeping, crying, chattering, buzzing, and moaning all around us in the wee hours, so I can sleep better. One man's trash........

To the incredibly caring and forward-thinking NURSES at Miller's. Wow. Don't think any of them read this blog, but I want everyone in the world to know what wonderful care they bestow on their patients. The LOVE. The understanding. The compassion. The knowing what we're going through open-heartedness. Service with a smile. Free babysitting every time I need a little break (and thanks to CiCi....number one Nurses' Aide magnifico!!!!!.....for loving Jilli and for teaching her Spanish, one song at a time). And the Child Life Specialists, who make being there so much more FUN. Alison & Rose are incredible people. Jill looks forward to "Open Playroom" time every day. But is content to sign autographs in the Hallway Walk of Fame when it's not.

To Aunt Mary Wonderful for staying with Jill all morning Tuesday while I took Anna to school, went to the gym, and bought bras (whoo-hoo! that was exciting). And for buying & preparing Thanksgiving Dinner for our family, letting Anna help make the pies, and staying behind on Thanksgiving Day because of a stupid cold!!!, while we ate drank (& missed Mary) at the hospital. It was nice to be a family on the holiday, but our thoughts were with the person who made it so special. She's now tucking Anna into bed, after acting ultra-impressed with how well Anna can float in the tub, brushing teeth, reading books, and trying to muddle through her logic over why she doesn't have to go potty because she went 3 hours ago.....what a blessing she is!

So many I'm not mentioning, mainly because I need to go to bed myself. Tomorrow is my night at the hospital & if Friday is anything like Wednesday, I can expect to be exhausted the next day. As long as she is in high-spirits, there is nothing, really, to complain about!

Hope you all had a wonderful Thanksgiving. I am so thankful for all of you.

Thank Yous

So much to be thankful for.....
(in no particular order):

Renee's mom Michelle for knitting hats for Jill.

Kristi & Jannah for taking care of Anna each & every time we need her to be taken care of.

The teacher at LAUNCH (I'm sorry, I've forgotten your name) who had her class make Jillian beautiful cards! They are bright & colorful, and brought such a smile to our faces.

The teacher in Florida (whose Mom works with Renee....but I'm not sure which of the 3 Renee's) who had her 1st graders make cards for Jill. Some of them made me cry! I've been meaning to write your class back....I promise I will soon.

Tammy, for organizing a "Tips for Jilli Day" at her hair salon (that brought in an ungodly amount of $$), for making pink & purple ribbons for everyone to wear (Anna says she will wear one every day until Jill is better), to her husband, Aaron, for making a beautiful poster which they put up in the salon....and for all the spectacular people (fellow hairstylists & clients of Tammy & others) who donated & bestowed such kind sentiments upon our family.

Heather for the adorable hand-made hat & shirts, and to Jannah for contributing the white shirts as Heather's "canvas".

Grandma Hunn, for the sweet notes that show up in my mailbox just when I need them the most, and for your "little somethings" in nearly each one. For being there to listen & make me feel so protected & loved every time I call. I LOVE YOU.

Dad, for feverishly organizing the Bone Marrow Drive for Dec 9th. For making the beautiful fliers, and for setting up the Fund. You have Missouri covered. I will not call to tell you she no longer has cancer, so you can stop hoping for that....but I will call to tell you what a difference you've made to her getting better (and to so many others...I know all of your efforts will result in at least one life saved! I KNOW IT!).

Laura, for organizing the Bone Marrow Drive in St. Louis. It was a great success! I was impressed at how quickly you jumped into action & at how, even faced with adversity in other ways, you pulled off this amazing thing for Jill. Thank you also to Nicki, Steph, & Jenny for putting in your time! I wish I could've been there with you.

To Kami, who visited with Jill & I this weekend for a good 3 hours. It was so wonderful to talk with you & glean from your vast experience. Thanks also for the Starbucks treat!

Colleen & her mom, for the Wizard of Oz quilts for the girls! They are so soft & comfy & adorable. We've gotten so many rave reviews on them....Jill is very attached to hers, already (& Anna just carefully informed me that the blanket in Jill's bed, is actually NOT the one Colleen gave to her...."That one is actually MINE, Mom. But Jill can borrow it.") I will send pics of them with their blankets as soon as I can get them to sit still.

Renee, for making us dinner nearly EVERY week since we got Jill's diagnosis. The presentation is impressive, the food is divine, the gifts & homemade cards....icing on the cake! You are such a fantastic person. Your mom must be soooooo proud.

Kate, for 2 wonderful dinners (it's not a competition, so don't go making any more....and don't feel bad for "following" Renee.....I dreamt of your Ziti) and for visiting with us when Jill was home. Your family is LOVELY.

Shana, for some great meals! LOVE your soup!!! And for all the hard work you've done so far helping to organize the Pedro Drive. You are a very special person....one that attracts goodness like a magnet. To know you is to be inspired, to feel so blessed. You will find a cure on your own, I'm nearly positive.

Jim, for putting soooooooooooo much time & energy into not only organizing the Pedro drives & setting up the meetings (once a week for months!!), but for spear-heading (along with all the other Pedro reps...Ally, Shaana, Shana, Ourania, & Rebecca) the Get Swabbed Campaign!! You are another vital person to have in one's corner. Jill LOVES you. We'd love to have a visit again soon :)

Dina, Dina, Dina.....there is no room in this entire blog for everything you've done. I need something--anything--I call you. You have a way of making me feel like it's perfectly natural to ask for help, and to cry & complain, and have no idea which road to take. You are an incredible person. One I'm so very lucky to call my friend!

My cousin Linda, for sending such sweet pictures drawn by her boys, Jack & Justin....and for not letting 10 or so years of no contact at all stop her from hugging me from Idaho!

Aunt Kathy, for jumping on any need she can possibly fill in an instant...for the sweet cards, ice cream money for Anna, family address list, and endless stream of pictures.

Aunt Debbie, for the sweet homemade cards & gifts for the girls. Please thank your friend, Helen, for us too!

Aunts Susie & Annie, for the great gifts (what did you send, again? Ha ha ha ha ha!) and consistent phone calls that cheer me right up!

Beth for getting those addresses for me (thanks to Heather for faxing them!) & Michelle for xeroxing, addressing & mailing out letters!! I will hunt you down & pay you for copies if it's the last thing I do!

Michelle F. for the Trader Joe's gift card! We will use it in no time!

My Speechie Gals for the fun night out at Hermosa Comedy Club. If I would've known you were buying my drinks, I would've gotten coffee.

Sallie, for helping me rent the park for Anna's bday party at a greatly reduced rate. Any chance you'd want to trade residences permanently? We can see the Lighthouse from our balcony!

Pat, for organizing the "Cans for Jill" at LAUNCH. Such an amazing gesture. My LAUNCH family continues to be my home away from home. Every little thing every one of you does, goes right onto the "Reasons Never to Leave California" List. There's no place like LAUNCH. There's no place like LAUNCH.

To Leah, Sandra, Debbie & Ian for becoming Donors this Friday. It was great of you to stop by & see us on the way out. We are so lucky to have you in our lives!

Ally, for organizing a Garage/Bake Sale for Jill. I am impressed at your gusto! Can't wait to be there with all of you!

I have not thanked everyone (of this I am certain). But nothing you do goes unoticed or unappreciated. I will get on official thank you's soon....I promise.

Pat & Oscar's Fundraiser

Last Thursday night, I had one of the craziest out-of-body experiences ever. I walk into this restaurant....it's PACKED....there are 20 people waiting in line (all with coupons in hand)....I look around....I see someone I know....she smiles & waves energetically....someone at the next table notices.....he waves....it spreads....soon everybody in the place is shooting love in my direction....and it's all for Jill.

My good friend Lisa Rosenbaum organized this event....a full day of Pat & Oscar's in Torrance generously donating 20% of every guest check (with coupon) to the National Marrow Donor Registry, to offset the costs of our Torrance Bone Marrow Drive for Jillian. The manager (pretty lady on the right) told me with a smile and arms full of breadsticks that the joint had been jumpin' since 11:30 am (it was then 7pm) and that the turnout was one of the largest they've seen!!

I haven't had a chance to speak with even a fraction of those who attended, but have heard that almost the entire staff at LAUNCH took part (Lynn even got scolded for handing out coupons to people in line...ooops... thanks for trying Lynn!), Carden Dominion, Anna's preschool, was greatly represented (by staff and parents alike! Anna was over the moon getting to visit with a good chunk of her preschool class all having dinner at the same place!), friends from Pedro, parents of kids I was Speech Therapist to 5 and 6 years ago were there with their (now much bigger) kids & entire families....all to hopefully find a cure for my baby's cancer. It was overwhelming! I felt like I was at my wedding reception (minus the husband, who was holding court at baby's bedside...wish so much that he could have been there). I wish I could have talked to each person more, that I could have somehow really let each & every one know how incredibly HUGE their being there was to me & my family. I continue to be moved beyond belief at the LOVE that surrounds us! How Matt & I have attracted Southern California's most Big-Hearted Cross-Section of people, I will never understand. I just hope all who attended realize what a tremendous impact they made by doing something as simple as ordering a meal.

To the staff of Pat & Oscar's, we extend our deepest thanks for hosting this fundraiser. I received so many wonderful comments about the food, the cleanliness of the place, & the terrific service (even at your busiest, you were smiling & making sure everyone had what they needed). Many people who visited had not been there before, but I can guarantee, they will come back, and bring friends! It's things like this that make a business stand out. Thank you.

(And thanks to Sue Espinosa for buying our dinner, much against my will).

Lisa will let us know soon how well we did.....thank you everyone.

My Funny Valentine

It is 5:15 am. The fluorescent lights, incessant beeping, constant opening & slamming of doors(okay, slamming, probably not, but it sure sounds loud when you're in the middle of a dream sequence), running (storm drain style) water, Christian music (looping looping looping..."I exalt thee"....oh, could we do that when the sun's up, please?), & miscellaneous noises from behind the curtain (I will spare you descriptions) are just some of the many reasons I am awake 3 hours before I was hoping this would happen. Why do I need sleep? I'll tell you.

BECAUSE JILL IS A MANIAC!!!!!!

From the moment she wakes up to the moment I let her know in no uncertain terms that it's time to sleep, she is movin'. This ain't no "la la la" skating through the day kind of movin', this is hardcore, get outta my way, I can't sing unless I dance in a tight circle, and I can't dance in a circle unless you move with me, Mom...no wait, sure I can! Being tangled in 5 wires is FUNNY! No, what's funny is watching Mommy try to untangle the wires while I take off down the hall (yep, I can run with cords wrapped around my middle) while she zoom pulls my IV pole behind her, shouting "Wait! Wait! Stop! I said STOP! Jill!!!!!!!" And what's even better is that every single person I speed past is rooting for me & grinning. I ROCK. Mom, EAT MY DUST.

Yes folks, this is my child on chemo.

For those of you who haven't gathered, Jill is doing great. She's in perfect health (except for the cancer), and is psychologically sound (some would say a tad off her rocker, but I think that's just a ploy for attention)....oh wait, unless you deny her something precious, such as, playing hide-n-seek, which Matt found out the other day when he turned her down (how can he hide & Jill find him when she is attached to an IV pole? I will tell you later. It is possible.). Ooooooooooh...the wrath of JillyMonster. She was so mad. Crying, stomping the feet, if she was bigger she woulda done somethin' about it, kinda mad. She is getting used to the fact that she has a friend around every bend, so Mommy has been allowed more frequent solo trips to the bathroom without the agonizing worry of "Is she okay with _____?" Her interests are evolving....I have withheld Wizard of Oz for the past 3 weeks, and though she is still fascinated with the characters, giving them rides on her push car (which I am officially renaming "Turbo Blaster"), making every doll or little character in a play sequence "Dorothy", "Taretow", "Tin Man", "Yion", "Dinda", or "Wickee Wisssss", and performing the "Lollipop Guild" with gusto, complete with imaginary handing of said lollipop to her audience (though, rarely on command, so don't be disappointed if she won't perform it for you). Her favorite movie (and sometimes, the only workable distraction) is now "Totoro", a Japanese anime-style movie about, as Jilli will tell you, "2 Sistuhs, a Daddy, and a Big Wabbit". She continues to love books, and is especially into Fairy Tales....she LOVES retelling the stories "Goldilocks & the 3 Bears" & "The 3 Little Pigs". She and Anna were really getting into to acting them out at home (hiding under the laundry basket, "Not by da haya uh mah sinny sinn sinn", then bolting under the easel when the house was blown down), and is really into "Give me 5"....the advanced version. I say "Give me 5" (she does), I raise my hand & say "Up high", she then moves my hand down & says, "Down Yo", then when I pull my hand away before she can hit it, she bursts "You too syo!! You too syo!!". She's actually the "too slow" one, but refuses to accept this.

Fun fun fun. But seriously, I am delighted that she is feeling good and seemingly unphased (so far) by the toxicity that is taking over her cells. If she were really hurting, this whole experience would be so much harder to handle.

I would like to encourage people to visit. Of course, calling first is always a good idea...we never know when she could turn for the worse. We are not lonely, by any means....always moving, always busy with something, but I would love for my friends & family (especially those who haven't stopped by already, although repeat guests are always welcome!!) to see what I'm sayin'. To experience her is a joy. I don't think that's just the mommy in me talking. So, if you are in the mood for laugh, and don't mind speed-walking up & down the hall with us, taking part in various "games", & especially if you have new songs, games, crafts, or other ideas up your sleeve, we would love to see you.

We are in Room 331 (at the end of the hall, just before you get to the Playroom), next to the window (AAAAAAA-LE-LU-IA!). Our phone # is 562-933-8332, although I am more likely to answer my cell (when it's charged!) 310-748-4378. If you cannot get ahold of me and will settle for my darling husband (who also welcomes visitors....and I've been trying to get him to post to this blog, but he is more of a private person, and though he doesn't mind ME sharing, is not necessarily all that into posting his deep thoughts on the World Wide Web)...his cell is 310-846-7254. If all else fails, you can try the Nurse's Station on the Ped HemOnc (Pediatric Hematology/Oncology) floor: 562-933-8500. We're always here, except when we're not (which is seldom). Again, Michelle's email is squashdiddlydoo@msn.com, if you'd rather your dialogue with me be personal (although anything you say can & will be shared in blog form...I'm kidding). Okay, next up.....the Thank You Diaries......so much to SAY!!!!!

Round Two

Jill's ANC is 1600 today! Wow, she skyrocketed fast. When you're up, you're up. She is such a hearty girl....never got sick before this....hasn't gotten sick since. They will be admitting her tomorrow night at 8pm (thank you Kristi for taking Anna home with you!!) and she will have another bone marrow biopsy (they think they did the last one too soon, so they want to re-do to make sure they have a good idea of what percentage of her marrow is luekemic) & spinal tap to inject chemo (preventative measure). She will then begin Round 2 of Chemo, this time only 8 days, on Thursday afternoon.

I'm too tired to be creative with this post and tomorrow is a big day for Jill....last day of outside time for a while, so I need to get some sleep! Just wanted you all to know the plan! With Matt being back at work, this month will be difficult...one of us having to get Anna to school by 7am so Matt can be at work by 8, so he can be out by 5, so we can pick Anna up by 5:30. Fortunately, Kristi & Jannah have volunteered to be Anna's caretakers for that overlap time (and every Friday night OVERNIGHT....GOD BLESS the IKEMORI'S!!!!) when we need it & friends Dina & Jim have been, and will continue to "Anna-sit" as they are able & we need it. We don't know how we would do this without these heaven-sent friends.

I have so many people to thank (I've slacked so big time).....will get on that as soon as I am able.

These past 2 weeks have been SUCH an incredible blessing. Our baby is SOLID. She's READY. LET'S DO THIS.

Marrow For Jillian's Tomorrow

Hi Southern CA Folks,

We will be hosting part one of "Marrow For Jillian's Tomorrow", a blood and bone marrow drive for Jillian. It will be:

Friday December 14th
3:00-9:00pm
Torrance High School Annex Cafeteria.

Participants will be asked to fill out a form and take a swab of cheek cells to be analyzed and added to the National Marrow Donor Program (NMDP) registry. If you are a bone marrow match for someone in need, NMDP will contact you and ask you to donate your bone marrow. Bone marrow is removed from your hip bone using a needle under general or regional anesthesia. You may be a little sore, but you could save a life as a result!

Because bone marrow follows ethnic lines, Jillian's donor must be Caucasian. The family already knows that Jillian's sister, Anna, is not a match. Matt & Michelle encourage EVERYONE to join the registry and save a life in Jillian's honor. They are getting to know a lot of people at the hospital who will have less of a chance simply because only 20% of people in the bone marrow registry are of other ethnic backgrounds.

There is a $25 processing fee for Caucasian donors. People of all other ethnic backgrounds are FREE because there is a federal grant available to pay your fee. At our drive, the Red Cross will pay the fee of the first 60 Caucasian donors willing to also donate blood. To make an appointment to donate blood go to http://www.givelife.org/ and enter the sponsor code = JILLIAN.

We will also be hosting a fundraiser at Pat & Oscar's at Del Amo Mall in Torrance on Thursday November 15th. They will donate 20% of the proceeds from people who bring in our official coupon. This money will go to offset the cost of the $25 processing fees, so hopefully it will be much less for people to participate. We will update you after the fundraiser! To get a coupon, please go to http://www.cdecena.com/jillian/index.htm and click on the link in the lower right hand corner of the page. Feel free to contact me with any questions at carothersann@hotmail.com.

For more information about joining the NMDP registry go to http://www.marrow.org/.

If you are interested in coming to our drive and have not signed up on a list at a Torrance school, please contact me so we will know how many people to expect. We want to make sure that the NMDP has enough staff, kits, and volunteers to help things go smoothly. If you plan to come, please check http://www.marrow.org/ to see if you meet their requirements, bring your driver's license, and contact info (name, phone, number, address, e-mail) of two family/members or friends who could help NMDP contact you should you move or cannot be reached.

If you can not come to this drive, Part 2 will be in San Pedro on January 5th! There will be more information on this drive later.

PLEASE COME!!!! Let's make sure Jillian has a match if she needs it!!!

Thanks,
Ann Gerlach

One More Week!

Jill had a clinic appointment today. Her doc gave us the results of the bone marrow biopsy from Monday & it is great news! She has less than 5% leukemia cells in her marrow (ideal...not all that uncommon, but definitely ideal). Her ANC (Absolute Neutrophil Count....basically, the part of the White Blood Cell that "matters" when deciding when the body is ready to be hit again with chemo) is only in the 500's (the level at which she is allowed to leave the hospital after recovering from chemo). As many have asked me to explain this better, I will try:

Chemo knocks her down to nearly zero.

She spends the next 3-4 wks trying to get up to 500. It usually takes a LONG time to get to a 3 digit #, then it rises fast. Case in point, two weeks after chemo ended, Jill was at 12, the next day at zero, the next at 19, the next at zero, the next at 13, the next at 216, the next at 480, the next, high enough to go home! The reason she keeps going back down to zero, or close to it, is because her body is likely trying to fight off a virus & uses up the few WBCs it has each time this happens.

She goes home when her ANC is at least 500...a number high enough that she will likely be able to fight infection without succumbing to it (depending on its intensity), but too low to start another round of chemo. They want to see her WBCs recover more & give her an opportunity to increase her weight & strength before knocking her down again. During home stays, she has to go to the clinic every 2-4 days to check her ANC.

She gets readmitted when her ANC is around 1000. They usually admit her in the evening & a spinal tap is scheduled for the next day (to draw fluid out to test, and to inject chemo...although she will likely only have this done once per cycle now...the 6 she had last cycle were due to the fact that they found leukemia cells in her spinal fluid...once they are obliterated completely, they rarely come back...it is not as certain in the bone marrow).

Each chemo cycle usually gets progressively harder; the body takes longer to "bounce back", thus making her hospital stays longer, but also, perhaps, her stays at home in between cycles.

Now, don't worry...I won't do this to you every month! But here's the lowdown for this cycle:
Jill was released on Wed 10/31, with an ANC in the 600s....on Friday, it was down to 100...on Monday, it was in the 300s....today, it was 540. She has another clinic appointment on Tuesday (the doctor does not anticipate her ANC will be 1000 by Friday) & will likely be readmitted on Wednesday 11/14 in the evening, to begin chemo next Thursday, taking us through Thanksgiving. If we're lucky, we'll be home for Christmas (but I'm not going to hold my breath).
My Aunt Mary will be 11/19-11/30 (yay!) and Cousin Kevin will be here 12/5-12/13 (yippee!). When we have someone staying with us (especially if they can drive...we can lend one of our cars), this is so much more do-able. We haven't yet had to do this with Matt being back at work & no one staying here....I'm sure that will pose challenges, but am confident that friends will help out in any way possible, if we simply ask. Thank you though, for anticipating need! Having to ask will never be "easy" for us. We are blessed with so many family & friends who just KNOW what to do to make this experience more bearable.

This past week has been so "normal". Jill is so full of life, and so energetic & rowdy...it just blows my mind that she has cancer! It's still not real. Not until we are faced with some of the terrible horrible things I have been reading about on other people's websites (why do I do this?), will this become real to me. Right now, the hospital is just another playground. When we arrived there on Monday for the bone marrow biopsy, my heart sank....but Jill started kicking her feet while still in her carseat, and excitedly cheering, "Hopitoh! Hopitoh! Hi Werters (workers)!!!!" to the construction crew that lives outside her bedroom window there. She is such joy. If I have to be cooped up in a place surrounded by sadness & disease, I'm glad she's my bunk buddy.

If any of you are around from Thurs-Mon and would like to see her, we will likely be venturing out to a park or two (preferrably one without sand, not known for being "yucky" & not crowded) or a walk & would love it if you could join us! We hesitate to have little kids in the house with her, especially if they go to school or are around older siblings who do, as this is just a bad time of year for surprise illnesses. But outside is ideal...they cough into the wind...she's not likely to pass through it :) Adults in the house are fine, so if only for a few minutes (if you're "in the area"), come on over! (Call first, just in case we are all still in pj's....wait a minute...I DONT CARE!!)

Good Luck to Matt on his first day back in 5 weeks!! I know it will be very hard being away from your baby, honey. She'll be okay. I promise. And I'll try to play more & clean less. Really I will. Priorities....priorities.....shakin' off that OCD.......!!! I love you.

And to all, a good night!
Michelle

For those who are interested (and are not on my "photo mailing list"), I can email you a link to gobs of photos & add you to that list. Just email me at squashdiddlydoo@msn.com.

Still Home!

Jill had a bone marrow biopsy today. No results yet, but they do not expect her to be in FULL remission until the end of the 2nd round of chemo. Her WBC count is around 400 (it needs to be 500 for her to leave the hospital, and at least 1000 to be readmitted so that the next cycle of chemo can start), so it's gone down (it was in the 100's on Friday!) & come back up....concerning, because she is at increased risk for infection, but heartening because it shows the luekemia is not coming back in full force!

So, we have another clinic appointment on Wednesday. The earliest she will be readmitted is Thursday or Friday of this week. Matt may start back to work this week. Nerve-racking for both of us, but necessary...we need to save the handful of weeks he has left on Family Leave for those REALLY HARD times...this certainly isn't one of them, but it sure has been nice to be all together as a family of 4, nearly every minute of every day these past 5 days!

Thanks for all of your prayers & phone calls & cards & packages & good wishes! Keep them coming!

Toys and Dishes

Thank you EVERYONE who has given to Jill & Anna so generously during this past month! The girls have been loving their presents! We would like to request, though, that people not send the following items (simply because we have so many & we don't want your gifts to go to waste):

*Coloring Books/Crayons
*Playdoh
*Stickers
*Stuffed Animals
*Electronic Toys
*Candy (PLEASE no more CANDY!

What she seems to be doing most these days is riding her car (with Wizard of Oz characters riding on back) & playing with little people/props in her dollhouse. She also loves putting on different shoes (although those dress-up shoes with the high heels are dangerous!), painting, playing with playdoh, cutting/gluing, and other crafts (which are set up every day in the arts/crafts room at the hospital). Oh, and playing hide 'n seek (another free activity).

Items that we could use (but are not desperately in need of....just if you really want to get her "something"):

*Knit caps or other cute hats (preferrably pink/purple/blue or other soft colors)...her head is 19" (thanks Heather!! The hat you made is super cute on her!)
*Slippers or other easy on/off shoe (she's a 7)
*I came across some Wizard of Oz Colorforms online before she was diagnosed that I almost bought...I'm sure she would love them
*Colorforms! She has a few sets, but never tires of sticking them on different places in their companion books or on mirrors/windows (this is a great airplane activity, for your own kids, by the way).

Please include gift receipts if you are able to, as if she already has what you send, we can easily exchange it for something else. Again, we are not hurting for toys! These are simply suggestions for those of you who choose to give "fun" stuff. And we thank you.

Now regarding dinners made for us....wow! Have we been eating like KINGS!! We have not had to make a meal, I don't think, since October 2nd!! Amazing. (Now if someone would just pack Anna's lunch for school every day....I'm KIDDING Kristi/Jannah! Don't even think about it!). We love your scrumptious dishes, sweet cards, & impressive presentation! However, we would like to return your dishes (even the re-usable plastic)! If you have delivered a dinner in the past few weeks, would you mind emailing me a description of your containers? Shana, Dina, Renee, I think I know what is yours, but I have lost track of who sent want dish after that....in the future, write your name with a Sharpie on your containers & we will get them back to you.
I would also like to return some toys/books/puzzles that Jill is "finished" with....if you are coming to visit & know you gave me something, send me an email as a "heads up" that I should have your stuff ready. I will find some way to get stuff back to you if I won't be seeing you soon, but can't promise when.

Thanks everyone!

Anna is NOT a match

We found out yesterday. I'm not as disappointed as I thought I would be. Maybe because now we won't have to put Anna through any discomfort, or because if Jill doesn't relapse, she won't even need a transplant! I'm happy that the drives are getting off the ground in MO & CA, anyway...if for no other reason, but that more people will be added to the registry! Thanks to everyone who is working hard to make that happen!

She's Home!!!!!

After the FABULOUS Halloween Parade at the hospital yesterday, we received notice that Jill was cleared to go. Mark & Beth scrambled around cleaning up our condo (THANKS you guys), then Mark drove up to the hospital to help us move out (filling our empty gas tank on the way...sorry about that), Beth took Anna & daughter Maddie trick-or-treating---navigating her way through the suspicious streets of San Pedro, and Jill got in her carseat for the first time in almost one month....she had big wide eyes the whole way home...."Tars! Yites! PeePoh (Cars, lights people)!"

When she got home, she marveled at her old surroundings...."My toys! My bed! My books!" And then, the obvious disappointment, "Where Anna?"

When Anna got home from trick-or-treating, the two picked up where they left off...rolling around on the floor, hugging, being hugged, and pushing hugs away, arguing about nonsense, sitting 'n spinning, coloring, dressing up (Anna had trouble putting on her slippers, and Jill said, "It's otay Anna, I hep you!") and just enjoying the comfortable company of each other.............

We have an appointment at the hospital tomorrow for blood checks, and a bone marrow draw on Monday....she could be admitted anytime after Monday (but definitely by Wednesday)...sooner if she comes down with a fever.

We are so happy to be a family at home again.

St. Louis Bone Marrow Drive

We have organized a bone marrow donor drive in St. Louis. It will be Nov. 11th at John Burroughs School, 755 S. Price Rd., 63124, from 1pm - 5pm. Anyone who would like to join the bone marrow donor registry can simply pop by during that time, fill out a medical form, and take a simple cheek swab, which will be tissue typed. There is a $25 fee (actually, it's much higher, but St. Louis has a "community matching funds" program that brings down the cost for individuals.) And that's it. If you are determined to be a tissue match for a waiting patient, and are asked to actually donate bone marrow, this procedure is more involved. The procedure is done under anesthesia, so is not painful, but donors are usually sore for a few days afterward. You can use this link to learn more about the commitment you are making when you join the donor registry:

http://www.marrow.org/HELP/Join_the_Donor_Registry/Understanding_Your_Commitment/index.html

Please come out and join the registry in support of Jillian and all the patients waiting for a match. Feel free to spread the word to whomever you'd like, and contact Laura (lauramarie717@yahoo.com) for more information.

No Blood Relatives

Hello Familia,
If you are blood-related, please do not donate blood or platelets at the Blood Donor Center at the hospital, and especially do not donate either directly to her. If she continuously receives blood products that are genetically linked to someone that may be a bone marrow match, her body may develop antibodies to those products, thus rejecting the marrow. Sorry I didn't mention this before....so many things are becoming clear to me just in the past few days. Another of those things being that .....

You CAN donate blood directly to Jill, and platelets (this is especially needed and preferred). Did I already blog that? We spent a full day at Disneyland/CA Adventure today (me, Anna, my sister, her boyfriend, and my niece) & my brain is fried....my legs still feel like they are pounding pavement...MUST SLEEP....we have trick-or-treating at the hospital bright & early tomorrow morning.....I'll send pictures! Can't wait.

Oh, and Jill will maybe be going home by Friday (for a measly 3-6 days, but still really cool), so if you planned on visiting this weekend, please make sure & call first!

Michelle

Will & Grace

So, Jill is doing amazing! She is only hooked up to tubes (for antibiotics) a few times a day (for an hour or less). She gets infusions of platelets & blood every few days (2 hours), but other than that, is "free". And that's all that baby really needs to be over the moon, happy. For those of you who have not witnessed the Bean FFFFFFLYYYYYYing down the hallway on her push car, & screeching to a dead-on accurate stop right before someone's toes, it is quite the sight. Daily, she wakes up (after sleeping through the night, just like she always has), with a beaming grin, "I wate up!", delves into her breakfast (a couple of weeks ago, she had bacon for the first time since we arrived here...she has bacon every Friday at Rose, her daycare lady's, house...and she exclaimed, "Mommy! Rose make befest foh ME!!!"), and after a quick wipe-down, leaves this room, for a 2 hour stint of running, riding, playing hide-n-seek (you'd be surprised how many hiding places there are in a hallway), ringing around the rosie, galloping, dancing, shaking her head back & forth until she's dizzy, flirting with every human being who even sort-of notices her, going in circles & circles on her "Pee Pin" (Sit'n'Spin), and experiencing the love from the Child Life Gals in the Playroom, doing crafts, "Pay Pee-doh" (play playdough), playing the piano, and otherwise, just enjoying her happy-go-lucky life in a place that is not quite "home", but not that far removed. SHE IS A JOY. She is an INSPIRATION! She makes me so entirely happy. Beyond words, happy. Smiling wildly for hours, happy. Nothing can stop me, happy.

And this little description of my girl, above, is why I am not down about her cancer. She has taken this packet of bad news, dumped it out, mixed it up with flowers, smiles, kisses, and glitter & thrown it up in the air, so now, when it falls down around us, yes, it's annoying....it gets in our hair, it makes a big mess...but it's also pretty and unique, and Jill's own.

I was talking with my friend, Shana last night about how every day brings an epiphany for me....the "aha" moments Oprah speaks of....I get it. The pain of this is nothing compared to the BEAUTY of this. Maybe it has much to do with the person I saw myself as before cancer came to us. Among other "pleasant" things (otherwise, I guess I wouldn't have so many great friends), I was cynical, somewhat judgemental, I belabored silly points...I wasted so much energy on being frustrated or tired or irritated. Irritable. That about summed me up. I remember telling a number of close friends the first few weeks of this that the mantra that kept me up at night was, "What doesn't make you stronger, kills you." I also told Shana, that if I got a disease like this, the person giving the eulogy at my funeral would not say, "She was a fighter," but that "She gave up the minute she found out". Well, this, after the initial shock and despair passed, has turned me into someone BETTER. I have no interest in being pissed off or agitated that we have loud roomates, or that my nurse that day didn't fully understand my questions, or that the mom I met in the playroom who was distraught over her kid's diagnosis, had nothing to complain about compared to the diagnosis we received. For some reason, Jill has enabled me to see the Big Picture. To realize that every moment counts, and that EVERYONE is fighting something. That noone or thing is inherently bad......people get through their everyday the best they know how, and things happen, good and bad to keep the flow going. It's not that NOTHING matters, rather that EVERYTHING does.

I happened upon a website yesterday entitled, "Caylee's Hope". It was dedicated to a 4 year-old girl who's parents found out she had AML (Jill's cancer) 3 HOURS before she died.....a very high fever brought her to the hospital. 3 Hours. If for no other reason, we are blessed to have at the very least, 6 months to spend the highest quality time with our beautiful little girl and get to know her better. How much actual hard-core REAL time did I spend with my girls before this? I mean, yeah, I was lucky to have 2 days a week off of work with them....but how much of that time was daily chores/errands/email/phone calls/go play with your sister, I need a break time? Not at all to suggest that those things aren't important as well, but THIS being here EVERY DAY ALL DAY has forced us to experience who Jillian is. And I am just thrilled to have that chance.

So much good has come our family's way since the last time I entered a blog....I will write more about that later, but for now, I want to leave you with a quote my friend, Renee, shared with me recently.....

"The will of God will not take you to where the grace of God will not protect you."

I have never felt so protected in my entire life.

St. Louisans...Unite!

From Laura Crowley (thanks, Laura):

Just so everyone knows, we are in the process of organizing a drive in St. Louis, and St Louis has a "community matching funds" program that brings down the fee for donors to $25 (from $52). Also, the information I've read says that should you be a match for someone, the bone marrow donation process is done under anesthesia, so it's not that painful in and of itself, although most people are sore for a few days. I'll be sure to get information to everyone once we have a time and a place.

We want your comments !!!

I've heard from many people that they want to comment on a posting, but have not been able to as they do not have a gmail account. Never fear, I have changed the settings, and now (I think) this will not be a problem. And we really would like to hear what you have to say...those that have figured out how to comment already, we salute your intelligence & appreciate hearing your opinions. This is not to say that the rest of you are morons. I probably wouldn't've been able to figure it out either.

I've emailed a handful of people who have made themselves greatly available & are involved in such things as setting up the bone marrow drives, inviting them to put new posts on the blog. If you have not been invited & would like to post (at any time), I will gladly add you to the list!

The Next Step

Matt & I met with the doctor & nurse educator today & here's the lowdown:

Although Jill has a chromosomal abnormality (11q23), she may not be in the "high risk" category if, at the end of this cycle of chemo (in about 2-3 weeks), they find less than 15% blasts (leukemia cells) in her marrow. The doctor seems to think she will land in "intermediate risk" category as she responded really well to chemo right away.

Anna had blood drawn yesterday (needle in her arm for about 2 minutes while he filled up 3 vials of blood...she sang, you guessed it, "Ding Dong, the Witch is Dead" until it was over, smiling the whole time....what a TROOPER!! Our nurse was hella-impressed!). They also drew our blood, NOT because we are likely to match, but rather to get an idea of the genetics behind her bone marrow type, which will help them track down a donor (if Anna is not a match) through the National Donor Marrow Registry (http://www.marrow.org/). There is a 25% chance Anna will be a match, and IF SHE IS, we will go to transplant as soon as our doctors & the transplant team at either UCLA or CHLA (we've not decided on a hospital yet) are ready to move forward....she MAY finish up all 5 cycles of chemo, but will likely go to transplant after the 2nd or 3rd, once they are certain she is in remission. More on that later...too much info to go into a "maybe".

IF Anna is not a match, Jill will finish up the 5 cycles of chemo (taking us to at least April), going home for 3-6 days each month in between cycles (10 days of chemo, 2-3 weeks of "recovery" during which her White Blood Cells rise back up), and we will wait to see if she relapses.

IF she relapses, we go to transplant from a Matched Unrelated Donor (MUD). We have a "pretty good" chance of finding at least one unrelated match as 80% of the people in the registry, at this time, are Caucasian, and (didya know???) bone marrow follows ethnic lines!!

Bottom Line: Let the bone marrow drives BEGIN! Even if Anna is a match (most ideal), Jill's body COULD reject it & we would need to go to a MUD match. They will be looking at the Bone Marrow and Cord Blood Registry (so bank your new baby's cord blood for yourself, and pay a yearly fee....good insurance for you & your family....or donate it!! Don't let it go to waste!!).

If you are now questioning whether or not to participate in the drive because you are not Caucasian & there is no chance you would be a match for Jill, please read carefully....this is probably the most important bit of information I have or ever will share in my life (and unlike most of the nonsense I spew, this is NOT an opinion):

Leukemia is not a White Man's Disease.

Leukemia kills.

Oodles of people (much like us) have NO chance of survival if they do not get a donor.

We have met these people. They are real.
They need you (Hispanics, Asians, African Americans, those of "mixed" descent).
They have babies, toddlers, children, teenagers, hanging onto life.
HOPING. PRAYING for a match.

We would be elated if one of you, our friends, our family, people we don't even know from our community, are a match for our baby. But please do this, not just for Jillian, but for the person in Texas whose LIFE.....YOU.....may SAVE.

Here's what it entails.....a cheek swab & processing fee ($50, but we are working on getting it reduced or waived). IF you are found to be a match for someone, you will need to take a few days off of work & endure (depending on your pain tolerance) a "painful" procedure of having a needle inserted into your hip bones, repeatedly, to draw out as much marrow as is needed by the recipient (in Jill's case, not much). You will be sore afterwards for up to a week, maybe more. All of your medical costs will be covered, but not your time off work...unfortunately, the donor recipient is given no information on who you are....if there is a way for you to contact them, I'm sure they would gladly cash out their 401K & deposit it into your bank account.

I'm not about guilting anyone into this. If you don't do it, we won't know! I just want everyone to consider what these little kids go through having cancer and weigh THAT against the inconvenience & discomfort of passing a little bit of your life on.......

I love each & every one of you....I'm loving more and more every day, and seeing so much good around every corner, and being faced with challenges (as simple as sleeping through blaring soap operas on the Telemundo channel) that I never imagined I could conquer!! It's not fun, but it's rewarding. I am so much stronger already. You, as a community of friends & family, have greatly contributed to that strength.

More to follow.......................................................................................................................