Wednesday, October 31, 2007

No Blood Relatives

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

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

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


Monday, October 29, 2007

Will & Grace

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

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

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

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

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

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

I have never felt so protected in my entire life.

Thursday, October 25, 2007

St. Louisans...Unite!

From Laura Crowley (thanks, Laura):

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

We want your comments !!!

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

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

Tuesday, October 23, 2007

The Next Step

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

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

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

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

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

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

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

Leukemia is not a White Man's Disease.

Leukemia kills.

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

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

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

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

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

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

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

Monday, October 22, 2007

More Pics

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)'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"'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 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 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 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

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. 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/ 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 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 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....

Sunday, October 21, 2007

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" 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."

Friday, October 19, 2007

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 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 :)

Thursday, October 18, 2007

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 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 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 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 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 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.


Sunday, October 14, 2007

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 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 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 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.....

NG Tube / Premature Burn Out

Jill had an NG Tube put in today. Pretty standard for kids on chemo...eventually, they just stop eating. Not sure how long it will be there....depends on if we can get her to eat food while it's in (they adjust the amount they give her with the amount she's eating on her own). Just one more tube attaching her to a pole (and it's a short one, too), making it VERY difficult for her to toddle around. This is something I can see us asking for help about.....walking her up & down the halls, playing with her on the floor...there is a lot of maneuvering & adjusting that needs to happen so she can be mobile. Probably will need someone to come every night so that Matt or I can get home to Anna.....but this one is a FUN job (ask Carla & Jessica). When Jill has energy & isn't in pain, she's a riot. Today, she was very fiesty. I would say, "You're silly." Jill: "I not silly....Anna silly". Mom: "No, you're silly, Jilly." Jill: "I not Jilly....I Azha (friend from daycare)". Mom: "You're Azha? Who am I?" Jill: "You Mommy. You Michelle." Mom: "Who's that (pointing to Matt)?" Jill: "Wha Daddy name? Oh, Matt!"

I thought I was getting sick yesterday, so Matt pulled a 48 hour shift. That was really hard on both of us. Matt freaked out a little bit there (understandably) about people coming to visit, but I think the doctors/nurses/and my pleas for him to lighten up talked him down. We are very worried (Matt especially) about Jill catching a cold or something but have been assured that we can chill out as long as sick people don't come & everyone washes hands! And even though it will be difficult, people probably should not be hugging/kissing the baby. (Good luck with that...she's irresistible!). We cannot get through this without your visits. I, especially, would go insane. So we will try & keep it to a minimum at one time & play it by ear. However, as of this minute, the strike has been called off. You can visit (and I hope you will). Regarding visits, they are not strict about hours, really. Though it's officially "over" at 9pm...if you are already in the room, they are not going to kick you out (unless we are sharing a room) & if someone gets here after 9pm & we really need a helper or a friend, just have the visitors desk downstairs call the Ped/Onc Nurses' Desk & they will let you up (call us first, though).

Friday, October 12, 2007

Wipes Alert!!!

Okay, our little pooper needs wipes....I'm not kidding....Jack, the 3-pack you brought last week? Gone. The floodgates have opened (it's a good thing). Anna has ballet in the morning so I cannot bring them up....can anyone bring Matt some baby wipes first thing in the morning (Sat, 10/13)? Even if it's before 8am, the front desk will call the nurses' desk & let you up. Matt can meet you in the waiting him 310-846-7254. Or on hospital phone 562-933-8323. (He is now using the hospital dry cloths & wetting them...not very effective).

Visiting, Parking, Other.....

If anyone (who will likely be visiting more than 4-5 times this year) is interested in parking for less $$, we just got some "insider" info. Email me for details.

Jill's WBC count is great! The luekemia is really responding well to the chemo! However, her body is not....she is (as was expected) very tired & very achy & very miserable. She is a little less herself every day this goes on. But tonight is the last night of chemo this round & her immunity should get better & better over the next 3-4 weeks. We are saying "no visitors" until further notice due to our fear she will contract a virus. Thank you for understanding & know that if you want to see one of us (and we are available to leave the room), we can meet you in the waiting room outside her floor. If you visit during blood donor center hours, you can kill 2 birds with one stones (and get free parking).

So many people have volunteered to feed us. We appreciate it immensely, and just ask that you check the calendar, add it (so 5 people don't bring food on the same night), and call us....we'll let you know if you should drop it off at the house or the hospital. We won't turn down meals (until our freezer is full :). We also appreciate the people who have offered to grocery shop for us. I have not started a list yet. I will do so once my mom leaves (Sat, the 20th), trust me!

I have more to add, but need to pee. Be back later :) Nice, Michelle. Real nice.......

Thursday, October 11, 2007

Blood Confusion

There's been some confusion (likely induced by ME) regarding blood donation designated specifically to Jill. She has a common blood is highly unlikely the hospital will run out of her type (and I'm sure they have a back-up plan if that does happen). There are certain hoops one needs to jump through & paperwork that must be completed for that to happen. As it just confuses people & may get tricky....if you are willing to donate, just know some sick child (or adult ) will receive your blood, and it may be our little Jill. Also, I was just informed NO BLOOD RELATIVES (that includes cousins....sorry Chad & Casey) ARE ALLOWED TO DONATE SPECIFICALLY TO HER (in the off-chance one of us are a possible marrow match, her body may develop antibodies to your blood & reject your marrow). Whew. So many rules. Thanks for understanding (this doesn't mean "don't donate", even blood relatives should donate, just not directly TO JILL....thank you for doing so!!).

Oh, yeah, forgot about us :)

So, my back is nearly out (for those who don't know my back is VERY sensitive & this "bed" is miserable)....does anyone know a good chiropractor (and by good, I mean CHEAP) or massage therapist who could help work these knots out before I am incapacitated?

Some of you have mentioned herbal (or other) drinks/teas/supplements to ward of illness. If you could give me info on where to get those things, I would really appreciate it. We both just got the flu shot, but are so fearful of coming down with even a cold (and with lack of sleep & not really being into food, we're more at risk). We know others would step in to be at the hospital with her...but she's so scared right now...she needs her Daddy & Mommy.

Thanks a lot!

Banking Cord Blood

If you are expecting a baby, please read! If not for Jill, for your own child. We buy insurance to protect our assets.....why not our children? If I had known about this at the time Jill was born, she would have a very good chance of beating her cancer....not that she doesn't without it, but, you know what I'm saying. Please forward this info to anyone you know who is expecting a baby! Please!

Visitors, Precautions, Thanks

A lot of people have asked about visiting Thursday (an incredible # of Thursday a holiday or something? I wouldn't have any clue what's happening in the real world.) Normally (HA! What's that???), it would be fine, but the chemo is hitting her little body really hard right now. She's not eating & hasn't pooped in almost 4 days (too much information!!!!)....this is a big concern with these kids as if they get "backed up", they can contract sepsis, & there's only one way THAT ends. The crazy things we're freaked out about around the clock....a tiny bit of diaper rash, a very low-grade fever, "my ear hurts" (still...she came in with an ear infx & had already been on antibiotics for 5 days), stuff that I would blow off every day before. It's so scary to think, "Oh my God. If we don't control this diaper rash, that could develop into an infection, and she could....she could DIE from diaper rash???" Yep. This is the first time in my life that people (doctors/nurses) are validating my neuroticism. We can't give her a sip of water from a cup that's been sitting out more than 2 hours. (Anna usually wakes up drinking out of the cup she had from 2 days ago.) We have to wash our hands after touching anything that is not "hers" you realize how many times a day you do that? You guys, just pray & wish for us that, in the immediate future, this innocent little child will not so suffer too much. It is so heartwrenching to see your baby uncomfortable/in pain & not be able to alleviate it one bit. She is so fragile right now. We are so scared. I need each & every one of you to lift us you have been, every day. Without love surrounding us, we could not do this.

On a lighter note, we would love to bestow some thanks on some incredible people......

My Mom, for being such a help right now. You are always "standing by" waiting for your next order of instruction...not batting an eye, or hesitating a bit. Anna needs you here, right now. I wish you could stay forever.

Jason & Cecilia Hilkey & Heather Bunn for the shiniest, brightest, most enormous sea life balloons I have ever seen. Jill LOVES them..."Dah-fin!!! Way-oh! Fissie!!"

Karen White for your kick-butt banana bread. I cracked up when I read the label "Castrated"....I actually had to ask Matt. No nuts. Obvious. The gift cert to the cafe will certainly be used....I didn't say wisely. I've heard they have some incredibly fattening brownies. And the pre-made labels for our fridge food! Simple, yet ingenious.

My Speechie friends at Launch for taking my mind off my tragedy for 30 minutes while we had lunch together. Thank you from the bottom of our hearts for donating your Emergency Happy Hour Fund. It will cover 5 months of parking at the hospital (do you believe we have to pay for parking????).

The director of Anna's preschool, for allowing Anna to attend 5 full days a week at 3 days a week tuition. This will allow some stability & consistency in her week. (Anna's BFF, Keili, is gonna pee in her pants in celebration....apparently, she's much harder to get ready on days Anna's not sweet.).

Cingular Wireless for donating 750 rollover minutes into my acct at no charge, to "tide us over".

Countless friends who have directed us to resources (financial & other) that will help get us through this.

And lastly, to my Aunt Mary & Uncle Brent for driving down from Fresno yesterday to surprise us with kisses & hugs (and way too many presents), stay for 6 hours, and drive back that very night. Mary's decorating job really lifted my if we could just get you people to send pictures to hang from the clothespin line she created!! C'mon people! Step it up! One family photo from each of you is all I ask!

Oh.......a number of people have been asking where to send packages. You can either send to the hospital (address is somewhere in this blog...don't have it memorized yet), or to our house:
672 W. 24th St. #4, San Pedro CA 90731. And we thank you. We could never have imagined this deluge of goodness coming from people with their own challenges, trials & tribulations, committments & responsibilities.

Call before you visit...every day is unpredictable....don't refrain from calling or writing because you think you are "bothering us"....don't come if you even THINK you might be sick....wash any used toys/books you want to lend to Jill & label them so we can get them back to you...and please wash your hands as soon as you enter the room....if you forget, you will be shot :) Also, when Jill's system is wiped out (during & for the first week after chemo, we're asking that no small children much as she would love the company, those little buggers are just too germy :) Thank you for understanding. Can't wait to see you soon!

Love, Michelle

Tuesday, October 9, 2007

Sunshine & Thanks

Jill had a pretty great day, all things considered. Turns out her "leg pain" was not about her legs (which makes sense, as most of her leukemia cells are gone now) but a HUGE bruise on her hip bone from the bone marrow draw. She can't sit or lean or lie down without pain meds...and that's okay, cuz give that girl some Morphine, and she's lit!!!! Hoo-HA! Perky as all get out. And FUNNY. Repeats everything you say, with a twist. I say, "Okay?" And she says, "Oeey Dotey Awisotey" (Okey-Dokey Artichokey). I say, "Time for medicine...and then?" She says, "I dwops (eye drops), den bus teef (brush teeth), den doh seep (go sleep)! Otay? Otay!" She does all procedures on dolly first. I say, "Did dolly fuss?" She says, "No fuss!" Then she fusses like a poked & prodded little baby should. Tonight, she left the room for the first time (willingly & not on a stretcher) since Thursday....steppin' out in ruby slippers, clutching her Toto dog & squawking "Hay-Yo!" to every live body she could spot. All the while, Mommy fretted about holding her hand, so she wouldn't fall over (she was weak in the knees) & keeping the IV tubes from coming attached from the pole or the baby. She climbed on chairs (THAT was fun....just 20 adjustments to cords each time she decided to try a new chair), scooted herself (or rather flew down the hall) on a push car, "T'mon Mommy! Yet's DOH!!" and sat for a precious 10 minutes reading while my friend Carla and I wolfed down her incredibly yummy cinnamon spaghetti squash dish (I think I shall dream of that meal tonight :). She played pretend with little people donated by Helena & Jack....these little people are having more in-depth conversations than I have with most of my friends....(who am I insulting? myself? my friends?). So, needless to say, all is right with the world (right now, today) after a pretty messed up falling apart kind of morning (thank you, Rebecca, for being there, hanging up pretty lights when I arrived this morning to an empty baby bed, and no husband....Jill's lumbar puncture had been moved back & I would have freaked out, not knowing this, if she had not been there....and thanks for staying, and listening, and crying with me). And while we're on the subject of thanks, many are due so far....I fear I will forget someone, so forgive me if it's you (maybe you just need to try harder). So in no particular order:

Kristi, for being my LAUNCH liason, for organizing & posting & being the dreaded "contact person", for taking care of Anna, for coming up with really creative ways to distract her from the drama, for making copies of keys (more than once?), for showing up at the hospital at just the right time (while Jill was in surgery) buying coffee & taking our mind off of the worst disaster ever to hit our family. And for continuing to hold us up & support us (along with Ian, the Care Package King, and darling Keili, the Opposite Twin....oh yeah, and Keira, that little bundle of cuteness)

Dina & Jim, for caring so much for all of us....taking Anna to swim lessons and taking care of her whenever asked....for offering to rearrange your schedule & quit other responsibilities (many of which, you shouldn't have in the first place...I'm just sayin'....). For lending my mom your car during these next 2 weeks (and thanks to Paul & Sharon for lending theirs to Dina...and for the fridge, which we're not allowed to have), and for all the glorious meals you're going to make us over the next few days (I'm just you didn't sign up & forget).

Shana for being there to listen on my worst night ever when visitors aren't allowed and all I can do is stare at the clock & listen to the beeps & watch my sick baby's chest rise and fall. And for coming as soon as you possibly could the next morning even though Mike was cantoring at church, which he cancelled. For the organizational tools, books & soup! And for the only pics I have up so far...because I just haven't gotten to it...those sweet babies of yours make me smile every time I enter the room.

Rebecca, see above! You really saved me this morning!

Jack, for the 10 cans of Mandarin Oranges, which are the only thing Jill has eaten since starting chemo. For the wipes, the books (she LOVES the Tails book!), and other misc. goodies. And for the Heineken. You're going to get us kicked out of here, dude.

Ann for the gobs & gobs of decorations which I have yet to put up....and the means with which to do so (you think of EVERYTHING)....the darling books....lift the flaps & pull the thingies are a big hit!....for thinking of Anna, for lunch....for this year's Halloween costume (looks like there'll be 2 Dorothy's in our family this year) & your presence.

Rhonda, for picking my Mom up from the airport & being the first of gobs of friends to make such a lasting impression on her. I'm pretty proud of all of's fun to show you off!! And for setting up the blog. I never would've thought of this...does anyone actually read this malarky?

Michelle, for appearing at the door out of the clear blue with the first signs of blood donation written all over the crook of your arm and for deciding to drag a bunch of your fellow civilian soldiers out to the hospital on Friday to donate. For chillin' with me, for identifying with me, for making me laugh, & for your promise of future visits (turns out you can do an overnight as long as you're over 18!).....and I've only met you 3 times before. You so rock.

Aunt Mary Wonderful, for the sweet lilt in your voice that makes me feel like I'm home, for your unwavering certainty that our Little Luna will squash all the bad bugs, for the songs, for the zerbertz, for the art projects already swimming in your head, for the assurance that you'll be here soon cleaning my toilet.

Aunt Annie for reminding me that if you can beat the odds at the slot machine, you can certainly beat cancer. For your no doubt attitude that she'll do it with both hands tied behind her back & one foot in the air. And for making fun of how computer illiterate you are even though I set you up to fail. Don't listen to Kristi....she knows EVERYTHING.

Aunt Sue for the words of encouragement, the art projects to come, the hope for Thanksgiving.

Aunt Deb for always being positive & for keeping me informed.

Aunt Grace for the gentle words of encouragement.

My sisters Beth & Renee, for feverishly planning fundraisers and we're only 5 days in.

Jannah & Cristina for coming on the first night I was on my own here....for holding Jill while Matt & I got "educated" about what a terrible illness this is, for helping me schlep to another room in under 5 minutes, for listening, for holding me up.

Claire, for popping up so many times so far to encourage, and make sure about things. It's so great to know so many nurses!

Dad & Mom, OF COURSE, (I almost didn't mention're a given!) for coming to the rescue on a dime. Mom, it sucks you can't come to the hospital with your've got 2 weeks to kick it!! But it's so nice for Anna & us to have you around...thanks for all your help so far....Dad, you're a real PriceChopper. I commend your bravery bidding low. Now you can come visit 5 more times!

For all the other friends & family who've called, written, prayed, made meals, and especially to those friends of friends who don't even really know us (thank you Renee. what a sweet surprise), you are all so incredible. I am so tired I cannot see straight....I'm sure tomorrow I will realize how many people I failed to mention. I do not trust that I can keep up with all of this're just all going to have to believe that Matt & I are amazed & so grateful for what you have done & what you plan to do for us in this, the most trying time of our lives. We could not do this without you!

Sunday, October 7, 2007

Please Give Blood If You Can

Please spread the word that the blood supply is really low right now...and platelets even more so (Jill's already rec'd many transfusions of both). While visiting us, people can donate at the Blood Donor Center (not sure if it's in Long Beach Memorial or Miller Children's, but the bldngs are attached)....562-933-0808...Donor Center Hours are M/W/F 8:30-4, T/Th 10-5:30...1st Tues of month 11:30-7pm. You should eat a meal before donating. Call about platelets....I think you're supposed to take Prednizone right before (mild side effects) and it is a 90 minute procedure. Parking will be validated. Again, thank you!

Happy Jilly

Little Luna's Big Deal

Today was rough for Jill. She's having a lot of leg pain due to the leukemia cells loving the marrow in her "long bones". It's so hard to see her writhing in pain & there's nothing we can do. Thank God for Morphine. I'm in a bad head space right now, it being 12:15 am & so tired I can't sleep. I'm mad. I'm hurt. I'm in a fog. I'm lonely. But wait....this is not about ME. Ugh. This just f-ing sucks. Jill's watching Dora right now, sucking her thumb & twirling her hair....oh, those curls....I'm going to sooooooooo miss those curls! Ann brought her a Dorothy dress & ruby slippers today. She's asked for them a bunch of times, but I think her feet hurt too much to keep them on. We sing a lot. And her language skills still cease to amaze me. "Tate dis off me, Mommy" "Dora and Boots do to beach" "Montey pit up Tin Man and frow on foor". The other night, when Matt was with Jill, she said "I miss Mommy....Mommy yuv me....I yuv Mommy....Anna at home....Jilly no home". Sigh. She wants to hold my hand right now, so I guess I'm done typing. So disjointed is this entry. Sorry. Didn't realize you were going to get to see inside my soul, huh? (Geez, I just came for the update....).