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Recent Pics

More Thanks Due

Jannah~For bringing us dinner on our anniversary....from our favorite Thai restaurant. We gazed lovingly into each other's eyes across the sticky tray table by the flourescent light, fondly listening to machines beeping while the sick baby slept :) So romantic!

Stephanie~For the adorable Wizard of Oz dolls. Jill plays with them every day....she alternates which one will administer her oral meds or swab her mouth (she hates the mouthwash stuff they make her use)...it's so much easier to take when the Tin Man is holding the swab :)

Eldris~I miss you!!! Thanks for the Dorothy Snow Globe Music Box!!! Jilli can't wait for me to turn it all the way, she starts yelling, "Snow Globe" in a most hilarious way (sounds a little like, "Sdleh Dloh"..spit flying) & singing along to "Somewhere Over the Rainbow"....it's always "way up high".

Olga & Ralph~For the Dorothy figurine...Jill has to have both the snow globe & figurine at the same time...they talk to each other. Your cards were so sweet. We really appreciate that you thought of us :)

Rosemarie, Belen, & Sheila~For dropping books off on our porch! How thoughtful! We have yet to go through the bag, but are in the process of switching things out. Thanks for labeling them! We'll let you know when she's "done" with them.

Jessie~For your awesome "Jellybeans for JillyBean" campaign & delightful care package! Love the picture collages. Anna loves her TinkerBell lunchbox!! I'll get to the Thank You notes later (maybe), but for now, I'm copping out with impersonal, yet public email thanks. It's the wave of the future (and I'm a little short on time). Oh yeah, and it's only because of your bag of candy that I'm still up at 3:30 am. I was so ready for bed when the Butterfingers screamed my name & I just had to oblige. Now I'm high on chocolate. Thanks a whole lot.

Kevin T. Ridgeway~For your BEEEEUUUUUUTIFUL letter....so eloquent & inspiring. You made me cry. Then I saw you on the ladder picking apples, in the middle of the pumpkin patch, and chumming it up with a drag queen and I couldn't stop laughing. I loved your postcard, too. I need some funny around here. You come on down whenever the spirit leads you. Nuestro casa es su casa. Our food is yours to prepare, our toilets, yours to scrub. I mean it....you got time? Get on da plane.

Jack & Jessica~For staying through the puke (Jack, thanks for cleaning up) & helping me give the Little a bath :) For composing pics with Dorothy (the life-size cardboard cutout, compliments of Miss Jessica) & chatting so late so I didn't have to be alone. Have a good trip, Jack...I have your cooler. Call me when you get back.

Kristi & Ian~For taking Anna for her very first sleepover on Friday and for making it so fun, she didn't even call her momma!! I now have a big reason to love Fridays!! No really, you guys have helped us in so many ways thusfar....we don't know how to thank you :) Except to allow you to take our daughter whenever you need your daughter occupied & out of your hair. Like I said, You're Welcome :)

Ally & Sallie~For visiting on Saturday, bringing yummy food & presents & for your sweet, genuine company. You made me feel better on a not-so-great day. Thank you for being there for us. I will light the lavender candle soon...so excited!!

Danielle~For all the emails & words of support, the Guardian Angel charm & echinacea & adorable pics of your grandson.

Felicia~For the nice card & cardstock! How great of you!!

Carolyn~For your generous gift....I was very moved.

For the anonymous emailer who has offered to pay our cell phone bill (who are you???) It is truly an amazing thing to give and not wish to be recognized. Drives me crazy not to know. If you change your mind & want to tell me who you are, I'll still let you pay the bill. Seriously, though, if there is a way for you to maintain your secret identity & communicate w/me via email, I have some important info to share.....please email me at squashdiddlydoo@msn.com.

Uncle Tom~For the adorable Colorado Moose/Bear books. Anna really digs them!! Jill's a little young, but I really appreciate it!!!!

Uncle Chuck~For your sweet card.

Aunt Ginny & Uncle Denny~For the packages....we devoured the first one, and were a little bummed we couldn't eat the second one :) I think Jill will enjoy the video and am sure Anna will love the Maisy book. And for the monetary gift....thank you so much.

Leah & Sandra~Leah, for giving blood & delivering cardstock & for your loving, kind demeanor that always makes me feel I can talk to you. You know what we are going through and we appreciate your candidness & allowing us (me) to be candid as well. Sandra, I love your comments on the blog. You are so sweet!! I'm so glad Matt is working amongst so many beautiful people.

Michelle & Lisa~For the toys, the dinner, the laptop to borrow!!!! The blood-letting, the visits, the offers of more & more & more help. You guys are truly amazing. Something about Denison just brings out the best in people!!!

Rose & Maria~For the visit!! Jill loved seeing you, Rose....thank you for bringing our attention to the bruising. If you hadn't mentioned it, we probably would not have caught this cancer as soon as we did. We love you.

Susan & Ann~For visiting, bringing cardstock & books & pictures, toys for Jill, and for cheering me up with your adorable babies!!!!

Shana & Dina~For visiting today and for getting our minds off the bad news (next blog..I'm too tired to talk about it right now).....Shana, I love you for just showing up & doing what needs to be done like it's no big deal....for playing with Jill so I can talk on the phone & getting excited about taking action to change this bad news to good. Dina....my coffee saviour! Thanks for all the yummy goodies (still waiting for the BILL!!) & helping me organize. I feel so much better. Thanks to Jim for watching Anna today, too!!

Shaana~For your awesome chicken dish---it was GREAT!!! Anna hasn't seen her purse yet, but she's gonna love it! Thanks for the Cheer Bear/CD...so cute. And for assisting in the organization/carting 'o stuff down to the car. And for the research....I'll look into it soon.

Colleen~For making Anna laugh & for humoring her just about every day when we get home from school. For befriending my Mom....she freaking LOVES you....I'm like, "Okay, MOM! Enough about Colleen already!! Geez, she's not THAT great!" and for the hilarious picture of Anna as Dorothy. And for giving Dorothy an impromptu tour of your house, allowing her to open every single door without asking first and acting like it was no big deal. She digs you in a BIG way. AND for the surprise kitchen!! Jill is going to pee in her pants...which is no big deal, really...she does it at least 8 times every day.

Steve~For the enlightening chat. We are on the same wavelength....shutup Karen.

Mom~For staying with us for 2 whole weeks, playing countless hours with Anna, driving her to/from school, cleaning our house, cooking, hanging out with me at the hospital, and just being there to talk....it was great sharing a Corona with you on your last night. You are such a great person, and I'm glad we're friends.

And to everyone I didn't mention, who called or visited (I don't think I left out any visitors) or made food or brought us a needed item....I am too tired to think anymore tonight, but know that I appreciate every single act of kindness bestowed upon us. We are eternally grateful.

Jill is a ball of energy & doing awesome. She's flying up & down the hallways on her little car...I think they took the NG Tube out tonight. And I guess I'll share...but I don't have much detail....they found out today that she has a chromosomal abnormality (11q23), so she will absolutely need a bone marrow or stem cell transplant. Let the driving (bone marrow driving, that is) BEGIN. My Pedro friends have come up with some pretty great ideas on how to get some media attention or at least raise some funds ....my Torrance friend (Ann) is already fast at work on getting a drive going through TUSD, and my MO family, I hear, is getting it going, too. We need lots of prayer, love, & support (as per usual)....if Anna is a match, that is the best chance Jill's got. They will be testing her this week, I think. Whew. This is way more than I thought I could ever handle. Ask me tomorrow (today) how I'm doing.....I need to get to BED!! It's almost sun up! Thanks for listening....

Semi-Permanent New Phone #

Okay, so we're in the same "new" room (321) but are now by the window (yay! even the construction view makes me happy to not be right by the door with NO privacy). So the # is 562-933-8341. At least, that's what they tell me....if that doesn't work, call the cell. We don't have a roomate tonight (this will NOT last), so I'm fortunate that it's my night to sleep here. I slept from 10:30-3am...Jill woke up for the 2nd time just screaming uncontrollably...wouldn't let me touch her...kept calling for "Daddy".....sigh.....poor baby. She needs something to TWIRL!!! She keeps opening & closing her fist right above her head, searching for her CURLS. I know that's what is bothering her! She would always console herself that way on waking up too soon.....does anyone have any ideas for comfy knit caps with tassels or something attached to the top (something soft) for her to twirl? I need all of my artsy-craftsy sewing friends/family to brainstorm :) We need some toppings for this bald little head!! Where is Debbie????? Ally...can we track her down? Off to try & sleep a little more.....visitors are VERY welcome over the next few weeks (baring other "issues"...call first) as she is feeling, overall, very well. Okay, g'night.

Sneaking in a "FW"

My friends Sallie sent this to me after her visit today....couldn't be more poignant (for all of us):

A professor stood before his philosophy class and had some items in front of him. When the class began , he wordlessly picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was. The professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was. The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with an unanimous "yes." The professor then produced two cups of coffee from under the table and poured the entire contents into the jar effectively filling the empty space between the sand. The students laughed. "Now," said the professor as the laughter subsided, "I want you to recognize that this jar represents your life. The golf balls are the important things--your family, your children, yo ur health, your friends and your favorite passions--and if everything else was lost and only they remained, your life would still be full. The pebbles are the other things that matter like your job, your house and your car. The sand is everything else--the small stuff. "If you put the sand into the jar first," he continued, "there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff you will never have room for the things that are important to you. "Pay attention to the things that are critical to your happiness. Play with your children. Take time to get medical checkups. Take your spouse out to dinner. Play another 18. There will always be time to clean the house and fix the disposal. Take care of the golf balls first--the things that really matter. Set your priorities. The rest is just sand." One of the students raised her hand and inquired what the coffee represented. The professor smiled. "I'm glad you asked. It just goes to show you that no matter how full your life may seem, there's always room for a couple of cups of coffee with a friend."

New Room

Hi everyone,
Our new room # for now is 562-933-8321. BUT....there's a good chance will be moving again within the next few days....they are trying to get us into a "B" bed (furthest from the door) as those of us who have to stay long-term shouldn't have to put up with all that foot traffic!!

I asked the doctor today why we absolutely HAD to stay at the hospital over the next few weeks...she's doing so well, and doesn't need any meds (except Zofran for nausea, as needed, and nourishment via NG Tube--now just at night while she's sleeping, she's eating pretty good on her own during the day, and IV fluids, both of which we could administer if trained)....she said that these kids (with AML) tend to spike fevers quickly (and she likely will within the next 3 weeks...not necessarily from a virus she catches from someone else, but from something within her own body) & it is very important to start them on antibiotics within the hour. Do antibiotics stop viruses? It's complicated.....in a way....but too hard for me to understand well enough to explain just yet. I'm sure I'll be able to write a medical journal when this is all over.

Okay, so visitors are welcomed, just call first. Oh, and be prepared....she's bald! I'll send pics soon. My little Buddhist Monk....I asked her to go up the mountain & bring me back some Zen....she said, "Here you doh, Mommy....tum den (some Zen)!" She's wiser than we realize :)

Room Change

Hi Everyone,
Michelle asked me to let you know that Jillian was moved to a shared room today. Unfortunately someone came in who had a fever so she needed a private room. We will give you the new room information shortly. For now, please call either Matt or Michelle's cell phones until we can get you the new phone number for Jillian's room. Also, since Jillian is in a shared room, space is going to be tighter...so please call before you go to the hospital...visitors are still welcomed & appreciated but will have to be scheduled a little more (at least for now). Matt & Michelle wanted to say thanks again for everyone's love and support. If you have any questions, you can email me at klikki@ca.rr.com. Thanks! Kristi

Why Us?

I've been asked by some if I am mad at God. If I wonder why this happened to us....what did we do to deserve this? The answer to the first, is definitely, "no". I grew up with a strong belief in God....my family & youth group helped strengthen & maintain that....sometimes I look back & wonder, was I really close to God or just close to my friends, who were close to God? Was it an identity issue? Was that relationship ever real? Over the years, I have explored other faiths (I was raised Catholic) & dogmas.....all make sense! None seem wrong or backwards or ridiculous to me. Therein lies the problem.....so many of my friends are of different faiths (or none at all), and I can't imagine that any of them are misguided. After studying (on a very basic level) a myriad of belief systems in college, I realized that there is no one path for us to follow to get to God (for those who do not believe that, I do not wish to offend....this is merely my belief). God is within us. Every day....in the air, the trees, the water, the laughter, the traffic....God is a part of this situation we are in....God who created ALL and made it so that NOT everyone is perfect. There are necessary flaws in the system. Science is God's Creation, as well. Jill's cancer is a freak gene.....a gliche in the system.....a bump in the road, one that may lead her into a ditch, but maybe not. I can't be mad at God for this. But I also cannot pray for God to take this away. I just cannot believe that God PUT this cancer here, or ALLOWED it to happen and that if I pray hard enough, he will take it away. Whether it takes her away from us or not, it is all in the plan (God's plan? Nature's plan?) and I do not believe that those who have no faith at all or who do not pray or who curse God, get less points. If we pray for this to resolve, "God had a plan". If we pray & cancer kills her, "God had a plan." Praying to God makes no more sense to me now than reading Tarot cards or meditating or employing one's inner power (as in "The Secret") to think it positively through. I believe positive thinking (or praying) makes people feel like they can actually DO something. I believe it is very important for us all to band together & support Jill & each other as best we can with our thoughts, deeds, & words. Call it prayer if you wish. Do not feel you have to ask our permission to put Jill on prayer chains or have masses said for her or to smoke Payote (sp?) & sweat it out.....we accept any and all good wishes, thoughts, prayers.

I came to quite the revelation the other day. This may sound off, but bear with me. When I ask, "Why Us?", what I really mean, is "What did we do to deserve such a tremendously heavy and enlightening experience? What did we do to get put in the very center of a HUGE circle of love and support? To receive such grand acts of kindness? To be held so tightly and breathed so deeply by so many of the world's most spectacular people????" This experience was by no means a choice I would freely make, but I do not wish it had never happened, either. If not for this terrible horrible no good, very bad thing (thank you, "Alexander"), Matt, Anna, Jillian, and I could not have caught a glimpse of the power of the love that you, our family and friends possess. Happy Hours, Baby Showers, Family Dinners, Late Night Phone Calls, Runs on the Beach, Impromptu Playdates....we love, but are detached by the multitude of daily, and very much at the time, necessary distractions that encompass our overscheduled lives! We care about our friends...and let them know that while we're working out side-by-side on the Eliptical Machines at Bally's, or during a quick "run into you" at the grocery store, or when our kids play wildly & loudly in our teeny tiny houses while we try to catch each other up on the week's happenings, or even in snappy, chatty emails shot into the dark & caught blindly at 4 am when we have a report to write for a "hot" IEP the next morning.....every one of us have these experiences. But very few of us have been CHOSEN to be whirled into the life Matt & I, at this moment, lead. It is frightening, overwhelming, exciting. I look forward to Jilli's happy moments (most all the time) & the best of YOU every day, now. It is not an experience I CAN trade....nor one I would, as wrong as that may sound. We are in this now for a REASON......God's reason....YOUR God/My God....doesn't matter. The reason has already been revealed to me, in tiny glimpses of spectacularness (is that a word?). Please believe that you are all a part of Jill's story. I'm saving every word, card, gift, photograph to be placed into a treasure box of our little Chosen One....she will always know how important her life is to the world, through all of you. What a gift! I could go on for days......but changing a diaper must bring my philosophizing to a halt (for now). Thanks for listening.

Michelle

Recent Pics

Items to Make Life Easier

The following are items we are seeking (but do not want people putting out big expense...if you have lying around in your garage, let us know):

A plastic 3 drawer shelving unit (one to go in the narrow hospital closet to help organize better & eliminate the need for 10 trips when it comes time to move rooms)....something cheap would work great.

Shana...where did you get the pink book basket you brought? I would like to get at least 1 (maybe 2) more so they match. Don't buy them for me, just tell me where you got them :)

Bulletin Boards that would not require hardware to go on the walls (rather, 3M sticky stuff??) for pictures, notes, etc....easier to transfer to other rooms....

Cardstock or posterboard in all colors (especially fall colors & pastels) for picture mounting. My aunt devised this adorable method of showing off pics...thick string hanging at points around room...small clothespins attached at various points on line holding photos mounted on cardstock (again, easy transfer).

A push car or bike that Jill can ride up & down the halls...that is big enough for her (she is kind of between a push car & a pedaling tricycle) & is not super fast on linoleum??????

Photos of YOU and your FAMILY!!! I would really love to hang pics of everyone who loves Jilly all around the room....pick a pic you love, glue stick it onto cardstock, trim a small border around the pic & put it in the mail (672 W. 24th St. #4, San Pedro CA 90731), send it with a visiting friend, or drop it off personally!! Seeing all of your smiling faces all around us would really lift our spirits. Even if you're a friend of a friend or a very distant relative, we want your picture!!

Thanks to Kristi for the table & memory foam!!! Can't tell you what a difference each has made....and the pics you printed out for us....how thoughtful! Sad you missed ballet yesterday...only 4 kids!!!

Thanks to Rebecca for the Teryaki Chicken at the Gas Station. Felt so illegal. But it was VERY good....my Mom couldn't stop raving about it!

Thanks to Jannah for lugging 3 loads of stuff up to our room by yourself on Friday, for your Halloween decos & for including Anna, & for chasing her up & down halls & riding on elevators while we went crazy for a few minutes.

Thanks to Renee Warner for your FABULOUS dish last week (and promise of more Monday! We don't even really KNOW you!!!). You are incredible. Anna baked cookies with Grandma yesterday thanks to that sweet idea of sending home-made cookie dough ready to bake. You are so thoughtful.

Thanks to all the friends who called wishing to visit this weekend. We are sorry to postpone seeing you.....next weekend will be better :) And the friends who gave blood....a few who stopped by after (thank you Todd, and Heather, sorry I missed you! Still haven't had a chance to look in your goody bag!), and many who just came & went, quietly & anonymously. We love you all so much. It's 5:30 am....I got 2 broken hours of sleep this night....maybe I'll try again now. I'll adjust, but my goodness is this a challenge. (Jilly says that ALL THE TIME now, "Oh my DOODNESS!"). Bye for now.....