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.