Thursday, November 29, 2007

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, 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 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 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!

Sunday, November 25, 2007

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, 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 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 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 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!!!!!

Thursday, November 22, 2007


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, 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.

Monday, November 19, 2007

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 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.

Sunday, November 18, 2007

Pat & Oscar's Fundraiser

Last Thursday night, I had one of the craziest out-of-body experiences ever. I walk into this'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 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.

Saturday, November 17, 2007

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.


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, 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, 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 much to SAY!!!!!

Wednesday, November 14, 2007

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 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.

Friday, November 9, 2007

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
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 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 and click on the link in the lower right hand corner of the page. Feel free to contact me with any questions at

For more information about joining the NMDP registry go to

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 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!!!

Ann Gerlach

Wednesday, November 7, 2007

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 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, 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 & 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!

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

Monday, November 5, 2007

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!

Thursday, November 1, 2007

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
*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! 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 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:

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 ( for more information.