So, chemo this time, has taken a greater toll on Jill's body than either time before......quite understandably.....it builds up in her system & just gets harder for her body to take. She has been throwing up every morning & has developed a rash from one of the drugs that just doesn't go away (they can't stop the drug, so they just try to control the symptoms of the allergy). Sounds bad, but it's amazing to watch her bounce back from the tough stuff. She shovels handfuls of scrambled eggs into her mouth every morning (don't ask me how it is that she actually LIKES hospital eggs...I swear, they don't come from real chickens), then looks at me like, "wait, this wasn't what I thought it was" and spits them all out, then says, "Dat's DOSE! Dat's Nasee! (That's gross, that's nasty)", repeating what I say to her every time she does that (but maybe she's referring to the eggs). She'll do this like, 3-4 times until she realizes that she doesn't like eggs anymore. At least not when they taste like metal (which is what most chemo patients say food tastes like while they're on it). Anyway, then she starts to whimper, "Mommy, hode my hand. My body hurts." She barfs, we clean up, then she's out running up & down the halls, dancing with the nurses, practicing balancing on one foot (using the "ballet bar" in the hallway...one of her favorite nurses, Janel, has shown her how to lift one leg up onto the bar & stretch....I'm doing most of the work, it seems, as she's too short to reach the bar), dressing up as various princesses, Dorothy, random crazy people (tap shoes, tutu, & bunny ears, strawberry-shaped sunglasses, Mardi Gras beads, and a magic wand), and pretending I'm "Ryan" & she's "Sharpay" (characters from Anna's new favorite movie, "High School Musical"). Last night, we pretended we were various ocean creatures in the hallway (until about 11 pm)....she was a nice fishie & I was a shark taking bites out of her tail, I was an octopus & she was a seahorse going up & down, and up & down..."Oh no! I dot tandled in you leds! (I got tangled in your legs)". The energy on this one is no match for the fatigue chemo (supposedly) brings on. So, she's fine. And time is flying. Sort of.....kind of depends. I fear the next few weeks are going to creep by as I am her sole playbuddy at least 5 full days a week. Once again, we are open to visitors (especially during the week), if you are pretty sure you're in good health. The next week, especially, as her WBC's have not dropped to zero yet. She'll be unhooked for at least a few hours a day...if I know a friend is visiting, we can try to time the freedom with the friend. Give me a call either on my cell or the hospital phone (we still have our own room 562-933-8327).
Anna is doing much better.....she & I had a break through the other night.....she wanted to pretend that I was a 4 year-old friend who had a sister in the hospital with cancer & she & I talked/played for about 40 minutes with me in this role. It was a bit like "play therapy"....I asked her (in my best kidspeak) if she ever thought her mom was too busy to pay attention to her & she said, "Yeah." I asked her what she did when she felt like her mom wasn't listening to her, & she said, "I sometimes say mean things or do stuff she doesn't like." I didn't try to teach a moral lesson when she said this, but just tried (as her little friend) to identify with her....or I would just not talk about it at all & play like a 4 year-old with her. It was hard for her to let me transition back to Mommy (she was so into it, I told her I was cold & she took me down to her "mom's" room & showed me where she (I) keeps her (my) sweaters...."I'm sure she wouldn't mind if you borrowed one....oh look! It fits you perfectly!"). The next day, we spent so much quality time together....I stayed off the phone & followed her lead....didn't rush her.....let her be herself rather than some stressed out, rushed, other child of mine. She revelled in this role. It was nice, for both of us. And when she acted out....one time hitting me on the leg when I didn't respond immediately to a request, I completely ignored the behavior....I asked her what she wanted for dinner right after she did it, in a very nonchalant way, & she barked, "I don't want dinner from YOU! Uh!!!" and stormed off to her room, slamming the door. I went about my business, & when she realized she wasn't getting ANY attention for it, she came out & said, "Um, chicken nuggets would be great." I refrained from talking to her about her behavior & just really pretended like I didn't notice it. It worked. Not to say it will always work, or that I'll always be able to hold back from trying to "teach her a lesson", but maybe the lesson was learned without me getting on my preachy chair & letting her know who was boss. Amazing.
At the hospital last night, Jill & Anna raced up & down the hall on their respective vehicles (the playroom now has 2 tricycles...Jill can't quite figure them out, but Anna is in Speed Heaven). She had a tattoo on her arm from a packet she got a few nights ago, welcoming her into the "Super Sib" Club.....an organization started by a mom of a child with cancer to recognize the siblings of those who are sick & make them feel important. Anna proudly announced to all the nurses, "I'm a Super Sib!" and pointed out her tattoo. It wasn't long before Jill began telling the same nurses, "I'm a Super Sib, too!" Anna started hearing Jill say this and quickly rushed down the hall, pulled her trike right in front of Jill's car & stated, most emphatically, "No, Jillian. You're not a Super Sib. You're a Sick Sister." Although this is true, in theory, we're not convinced.
Happy New Year Everyone!
Monday, December 31, 2007
Thursday, December 27, 2007
Round Three
Being at home for Christmas was fantastic. We decorated the house a bit, made cookies (Anna is quite the baker, and Jill is very good at unwrapping, and eating, Hershey's Kisses), drove around looking at lights, and were among a handful of guests at a Gingerbread Making Luncheon at the Hyatt in Long Beach. The joyful moments that led up to Christmas were just as beautiful as Christmas itself. We went to a Presbyterian Church Service at St. Peter's By the Sea on Christmas Eve & the girls marvelled at the presentation of the Christmas Story by a bunch of kids just like them. Jill danced in the aisle much to the delight of fellow church-goers and Anna sat up front bravely among the other little people, none of whom she knew, and participated as best she could in the singing. After church, we went out to dinner. It was really nice to eat at a restaurant with our family intact, among VERY few people, and not have to clean up our mess :) Christmas morning was so relaxing....the girls were excited to find the plate of Santa's crumbs (among which were half-eaten carrots for the reindeer, an orange peel for Santa's elf "Shinglyschmoop", and an apple core that Santa himself left, all because Anna thought Santa should be eating "healthy snacks, not just sugar"...that's my brainwashed girl). The first presents they opened were socks (as I explained to Anna, sometimes Santa brings you what you want, sometimes he brings you what you NEED)....Anna halfheartedly tossed hers aside, "Oh, socks." while Jill danced around the room with a huge grin & her socks bunched under her chin, "Oh, sots! Sots! I yuv sots!!!" (Difference in age? Personality? Both?) Anna perked up a little later when she opened a package of underwear......High School Musical Underwear. The morning went so smoothly....each girl would play with her toy or read her book right after opening...there was no rush. We didn't need to ransack the place or hurry up to reach the end. It seemed there WAS no end. After a few presents, we stopped for breakfast, omelets & scrumptious homemade cinnamon rolls made with love by our friend, Renee (whose family celebrates Christmas with that tradition each year). Then back to gifts....there were so many from friends & family....Nutcrackers of the Lion/TinMan/Scarecrow, a dress up trunk filled with fancy schmancy dresses & accessories, books, trains, the Nutcracker Theater Book/Paper Dolls, Colorform Dresses for Princesses, art supplies, dolls.....Santa was extremely good to our girls this year, thanks to all of you. After lunch, Jill took a nap, and Anna & I walked to a few friends' houses to deliver cookies. We joined our San Pedro family, Dina, Jim, James & Mikayla, for dinner at their house. The girls had a blast, as usual. Jill really sees them as her surrogate family (as does Anna). They are just such wonderful people. It was a magnificent holiday. And the first that we've spent as a family of 4 in our own home! We were where we should have been this day.
Day after Christmas brought the dread of going back to the hospital. I was having a rough day, feeling tired & run down from all the excitement & lack of sleep (my own fault), and as I've told many of you, for me, the anticipation of a dreaded event is usually way worse than the actual event. Jill was her typical jolly self, but Anna had various "problems" throughout the day that earned her time out after time out, which led to her stating she was going to get out a gun and shoot me, which led to me spanking her, which led to me feeling guilty for spanking her (even after she laughed in my face & said that it didn't even hurt), which led to an out-of-control spiral downward for the both of us until we landed in the hospital (that sounds pretty bad, huh) face to face in Jill's new (old) room hugging, crying (me) and saying goodbye for the night. I told her I was sorry I spanked her but I just didn't understand why she said what she did. She nodded, patted me on the shoulder & went on a little rant about wearing a hat versus wearing a hood. As she was leaving with Matt & I was sobbing because I just had the worst day & just didn't want to do this anymore & Matt was hugging me saying I was the best mom & the best wife he could ask for (what does that say about HIS standards?), I said, "Why am I the only one crying here?" Anna looked up at me with a smirk, shrugged her shoulders and said, "Yeah, why are you crying? This is a 'little thing'," parroting back what we always say when she goes on about perceivably insignificant traumas. Good lesson.
Rewind: when we were sitting in the car waiting for Jim & Matt to lug 3 loads of stuff up to our room, Anna in her carseat asleep, exhausted from fighting with her 32 year-old mother, and Jilli bundled in her jammies & winter coat in my lap in the front seat, excited to be "at the wheel" for the very first time!!, we were listening to Jack Johnson's Lullaby CD, and I was crying, not even trying not to...I mean, I'd been doing that all day, why stop then?....Jilli took my face in her hands & looked SO imploringly into my eyes (like a SAGE...she was freaking me out), and said, "Mommy, don't be sad. Why you sad?" I offered the real reason to her (like she was going to get it or something), "Well, Jill, I'm sad because, today, we go back to the hospital, and you won't get to be home with your sister anymore for awhile, and I'm going to miss you being at home." And she said (like she totally DID get it), "Don't be sad about my hapitoh (hospital). I be here with you. Close you eyes." I closed my eyes. She brushed her baby hands down each of my cheeks. "Open you eyes." I opened them. "You feel bettuh?" I said I did. "You be happy Mommy. I yuv you."
Which brings us to today. Jill sailed through her bone marrow biopsy & spinal tap like a trooper. (Won't know the results until next week, but I'm assuming the best, and that's rare for me.) She woke up all loopy & scattered as usual, it's fun to watch....she's just like herself, only more mellowed out. She hugs everybody even more, and holds on longer. It's sweet. One of the nurses in recovery today (Janel) said that she wonders if how kids are coming out of sedation is any indication of how they'd be intoxicated as adults. Jill would be the one at the bar buying shots for everybody & kissing the bums in the alley. Janel was called to be a bone marrow donor yesterday, by the way. She'll know in 3 weeks if she's chosen, and will keep me posted on her experience. I'm excited to see how it turns out. What an honor. I got goosebumps when she told me.....
The San Pedro Bone Marrow Drive is a week from Saturday. A reporter from "More", our local Pedro paper, is coming to the hospital tomorrow at 10am for an interview. Hopefully the article will be in Saturday's paper so that the drive can be hyped. So many people have put so much work into getting the word out, fundraising, and supporting this effort. We are so impressed with the lot of you.
I've been getting a lot of positive feedback from people about how Matt & I are handling this. More about me, because I'm the one who puts it all out there in public (Matt is the strong, silent type). I appreciate the kind words & encouragement, but I certainly do NOT feel I am handling this well at times. There are a select (lucky) few who get to see me broken & out of my head about all of this. It's hard to reveal that side to people. I actually only do on occasion because I can't avoid it....I'm getting better at not feeling bad about feeling bad, but I'd still really like to keep up the facade that I am sailing through this storm with a smile on my face. Maybe it will comfort some of you to know that it is, in fact, a facade. Kind of like people (me included....in a big way) who send out photos of themselves and their families...in every photo, there are smiles, & laughter & hugs & kisses, & sunshine & daisies. Are some families just happier than others? Heck no. You think I'm going to send pictures of me losing it on my 4 year old? Or completely unproductive for a 3 hour stint on the couch in front of the dumb tv while my kids pull each other's hair out & wreck the house for lack of attention? Or snorting cocaine while downing a 5th of vodka (oh crap, I wasn't supposed to let that cat out of the bag)????? Yep. So, human to human, thank you for caring enough to read my journal. If I haven't thanked you personally for your card, gift, or service to help my family through this yet, don't hold your breath. There's too many of you!!!!! It never ends!! But seriously, we appreciate each & every act of kindness, and will send them back out into the universe when this weight has been lifted from our shoulders. We promise.
Hope everyone had a wonderful Holiday. Now go outside and breathe in some fresh air for me!
Day after Christmas brought the dread of going back to the hospital. I was having a rough day, feeling tired & run down from all the excitement & lack of sleep (my own fault), and as I've told many of you, for me, the anticipation of a dreaded event is usually way worse than the actual event. Jill was her typical jolly self, but Anna had various "problems" throughout the day that earned her time out after time out, which led to her stating she was going to get out a gun and shoot me, which led to me spanking her, which led to me feeling guilty for spanking her (even after she laughed in my face & said that it didn't even hurt), which led to an out-of-control spiral downward for the both of us until we landed in the hospital (that sounds pretty bad, huh) face to face in Jill's new (old) room hugging, crying (me) and saying goodbye for the night. I told her I was sorry I spanked her but I just didn't understand why she said what she did. She nodded, patted me on the shoulder & went on a little rant about wearing a hat versus wearing a hood. As she was leaving with Matt & I was sobbing because I just had the worst day & just didn't want to do this anymore & Matt was hugging me saying I was the best mom & the best wife he could ask for (what does that say about HIS standards?), I said, "Why am I the only one crying here?" Anna looked up at me with a smirk, shrugged her shoulders and said, "Yeah, why are you crying? This is a 'little thing'," parroting back what we always say when she goes on about perceivably insignificant traumas. Good lesson.
Rewind: when we were sitting in the car waiting for Jim & Matt to lug 3 loads of stuff up to our room, Anna in her carseat asleep, exhausted from fighting with her 32 year-old mother, and Jilli bundled in her jammies & winter coat in my lap in the front seat, excited to be "at the wheel" for the very first time!!, we were listening to Jack Johnson's Lullaby CD, and I was crying, not even trying not to...I mean, I'd been doing that all day, why stop then?....Jilli took my face in her hands & looked SO imploringly into my eyes (like a SAGE...she was freaking me out), and said, "Mommy, don't be sad. Why you sad?" I offered the real reason to her (like she was going to get it or something), "Well, Jill, I'm sad because, today, we go back to the hospital, and you won't get to be home with your sister anymore for awhile, and I'm going to miss you being at home." And she said (like she totally DID get it), "Don't be sad about my hapitoh (hospital). I be here with you. Close you eyes." I closed my eyes. She brushed her baby hands down each of my cheeks. "Open you eyes." I opened them. "You feel bettuh?" I said I did. "You be happy Mommy. I yuv you."
Which brings us to today. Jill sailed through her bone marrow biopsy & spinal tap like a trooper. (Won't know the results until next week, but I'm assuming the best, and that's rare for me.) She woke up all loopy & scattered as usual, it's fun to watch....she's just like herself, only more mellowed out. She hugs everybody even more, and holds on longer. It's sweet. One of the nurses in recovery today (Janel) said that she wonders if how kids are coming out of sedation is any indication of how they'd be intoxicated as adults. Jill would be the one at the bar buying shots for everybody & kissing the bums in the alley. Janel was called to be a bone marrow donor yesterday, by the way. She'll know in 3 weeks if she's chosen, and will keep me posted on her experience. I'm excited to see how it turns out. What an honor. I got goosebumps when she told me.....
The San Pedro Bone Marrow Drive is a week from Saturday. A reporter from "More", our local Pedro paper, is coming to the hospital tomorrow at 10am for an interview. Hopefully the article will be in Saturday's paper so that the drive can be hyped. So many people have put so much work into getting the word out, fundraising, and supporting this effort. We are so impressed with the lot of you.
I've been getting a lot of positive feedback from people about how Matt & I are handling this. More about me, because I'm the one who puts it all out there in public (Matt is the strong, silent type). I appreciate the kind words & encouragement, but I certainly do NOT feel I am handling this well at times. There are a select (lucky) few who get to see me broken & out of my head about all of this. It's hard to reveal that side to people. I actually only do on occasion because I can't avoid it....I'm getting better at not feeling bad about feeling bad, but I'd still really like to keep up the facade that I am sailing through this storm with a smile on my face. Maybe it will comfort some of you to know that it is, in fact, a facade. Kind of like people (me included....in a big way) who send out photos of themselves and their families...in every photo, there are smiles, & laughter & hugs & kisses, & sunshine & daisies. Are some families just happier than others? Heck no. You think I'm going to send pictures of me losing it on my 4 year old? Or completely unproductive for a 3 hour stint on the couch in front of the dumb tv while my kids pull each other's hair out & wreck the house for lack of attention? Or snorting cocaine while downing a 5th of vodka (oh crap, I wasn't supposed to let that cat out of the bag)????? Yep. So, human to human, thank you for caring enough to read my journal. If I haven't thanked you personally for your card, gift, or service to help my family through this yet, don't hold your breath. There's too many of you!!!!! It never ends!! But seriously, we appreciate each & every act of kindness, and will send them back out into the universe when this weight has been lifted from our shoulders. We promise.
Hope everyone had a wonderful Holiday. Now go outside and breathe in some fresh air for me!
Wednesday, December 19, 2007
We'll be Home for Christmas!
The doctor saw Jill today...she is concerned that if she is congested tomorrow morning, they will not be able to sedate her. Her ANC is back down in the "normal" range (3000), so the doctor feels confident that we can wait another week to start chemo. So......as the title states, we'll be home for Christmas! I'm so excited!! There's so much we get to do now! We're going to the Hyatt Regency in Long Beach tomorrow for a Gingerbread House Making & Luncheon (for parents, kids with cancer & their siblings)...it's supposedly a really big deal...they only had 14 invitations, and Lori, our social worker, seemed really happy when she found out we could go! What an honor. Then to Candy Cane Lane for Christmas Lights (anyone want to join us? maybe Sunday?), we'll make cookies (I wasn't planning on it, but we have so much more time now!!!), Santa will have time to wrap presents...heck, we might even be able to make a few gifts! So, Merry Christmas everyone! It's going to be much brighter for us with our family all together AT HOME.
To Miller's or Not to Miller's?
We may go back to the hospital tonight....depends on Jill's cold....her ANC is 10,000, which freaked me out (they told us that they want to start chemo when she gets up to 1000 or 1500). All this means is that her body is fighting an infection...her healthy WBC's are doing their job. Healthy people typically have between 4000 & 13000 WBC's (the number is higher if you are fighting an infection). Anyway....Jill's doctor is not too fond of letting kids "hang out" at a really high ANC for too long (risk of leukemia cells coming back), but she deems herself more conservative than the other doctors in the practice...she said they would probably be fine with her staying out until after Christmas, as there is no scientific data to show that the longer your #s are high, the more risk involved. So confusing! So here we are...she was scheduled to go back tonight, BUT, she's REALLY congested right now, and they don't want to sedate her (for her lumbar puncture & bone marrow biopsy--both of which are mandatory before starting chemo) if she may have trouble breathing. We may be home for Christmas yet! (Don't know how I feel about this...kind of just want to get it over with, and it's so much harder to go back after being home for so long).
This morning, she woke up bright & sunny, as usual...excitedly pointing to her dresser "There's Dorsee! There's Dorsee!" I laid her down for a diaper change & she said, "Anna upstairs in the playroom watching TV. I wan see my sister. I yuv her." At breakfast, she said, "My medicine ha yittuh bit uh yodurt in it (that's about right...yuck!)." She & Anna are playing together with the Little People Hospital Shana bought Anna for her birthday (I let Anna stay home from school today). They are such great friends (with the every-5-minute squabble). I'm so glad they have each other. And regarding going back to the hospital, the girls both seem much more prepared this time...like they understand so much more. And neither girl seems sad about Jill going back in....Anna will get to spend more time with Johnny & Addie, Keili & Keira, Mikayla & James, & Jill will get to be the hospital celebrity again! And I'll get to not to do chores around the house all day! (Being here 24/7, it's amazing the mess you create). More when I know what's happening (waiting for her dr. to call back).....
This morning, she woke up bright & sunny, as usual...excitedly pointing to her dresser "There's Dorsee! There's Dorsee!" I laid her down for a diaper change & she said, "Anna upstairs in the playroom watching TV. I wan see my sister. I yuv her." At breakfast, she said, "My medicine ha yittuh bit uh yodurt in it (that's about right...yuck!)." She & Anna are playing together with the Little People Hospital Shana bought Anna for her birthday (I let Anna stay home from school today). They are such great friends (with the every-5-minute squabble). I'm so glad they have each other. And regarding going back to the hospital, the girls both seem much more prepared this time...like they understand so much more. And neither girl seems sad about Jill going back in....Anna will get to spend more time with Johnny & Addie, Keili & Keira, Mikayla & James, & Jill will get to be the hospital celebrity again! And I'll get to not to do chores around the house all day! (Being here 24/7, it's amazing the mess you create). More when I know what's happening (waiting for her dr. to call back).....
Sunday, December 16, 2007
Weekend Update
So, we've been home since last Saturday and what a wonderful stay at home it has been! Jill & Anna have gotten to spend so much quality sister time together (hugs & pushing down included). We have gone on a few walks, visited a few parks (Anna suggested Peck Park one day and Jilli said, "No Anna! Dat's a sandy part (park)!"), played in the snow (ice) on Mesa St. in San Pedro, danced around to Christmas music in front of the stage, acted out fairy tales (the same 3) over and over and over (props or no props), read lots of books (Jill's really into Nursery Rhymes right now...she can recite a ton of them all on her own..she read to all 3 of us this morning..it was soooooooooo cute!), put up our fake Christmas tree, attempted to decorate a gingerbread house, and did a mess of chores (that would be the grown-ups). Life is normal again. It's amazing how quickly we all can assimilate. Jill still talks about the hospital every day....especially CiCi (the nurse's aide). Yesterday she said, "The nurses are my fwends." I know she won't be sad when we have to go back, but it sure is getting harder for me to face....maybe it's the Holidays or all that I know we'll be missing while we're there. It's just the most enormous inconvenience I can imagine, and though the end is in sight....we still have so long to travel. We're just so thankful that Jill is HAPPY and (seemingly) amazingly healthy!!!! Anna has had a rough cold since Jill got home, but Jill isn't showing ANY sign of having caught it! She is such a hearty gal. Spunky. Totally spunky. I'd like to share with you some of her little ramblings from the past week:
"You ha pitty hair. I wan tutsit (touch it). Wee-hoo!" (she says this at least 5-6 times a day, maybe because we crack up every time she does)
"When Daddy all done tsainz my bopper, I tum pay wif you."
"You don't weed to me, Mommy. I do it all by mysef."
"Doh away Anna. I don't yike dat."
"I be Dorsee. You be Wicki Wisssss....."
"Don't see me! I will hi (hide) fum you. I doh wun away!"
"Wha you fawit (favorite) tuyuh? I yike bwu. Maybe you tan twy a marter (marker)?"
And my favorite....if you make a comment & don't have your facts straight....
"A---su-yee (actually)....."
We are going to Manhattan Beach tonight for Christmas Carols & Fireworks. It's a tradition. And I'm so glad Jill will get to be there....it will be so much more special to us this year.
We will find out on Monday if we return to the hospital sometime this week (that's my expectation). Will keep you posted.
The Torrance Bone Marrow Drive was a HUGE success.....195 new donors & at least 60 gave blood. I will post more on this later.....but must give TONS of credit to Ann Gerlach who planned & organized the entire event. Many others helped! It was amazing!!!
Have a great week, everyone!
"You ha pitty hair. I wan tutsit (touch it). Wee-hoo!" (she says this at least 5-6 times a day, maybe because we crack up every time she does)
"When Daddy all done tsainz my bopper, I tum pay wif you."
"You don't weed to me, Mommy. I do it all by mysef."
"Doh away Anna. I don't yike dat."
"I be Dorsee. You be Wicki Wisssss....."
"Don't see me! I will hi (hide) fum you. I doh wun away!"
"Wha you fawit (favorite) tuyuh? I yike bwu. Maybe you tan twy a marter (marker)?"
And my favorite....if you make a comment & don't have your facts straight....
"A---su-yee (actually)....."
We are going to Manhattan Beach tonight for Christmas Carols & Fireworks. It's a tradition. And I'm so glad Jill will get to be there....it will be so much more special to us this year.
We will find out on Monday if we return to the hospital sometime this week (that's my expectation). Will keep you posted.
The Torrance Bone Marrow Drive was a HUGE success.....195 new donors & at least 60 gave blood. I will post more on this later.....but must give TONS of credit to Ann Gerlach who planned & organized the entire event. Many others helped! It was amazing!!!
Have a great week, everyone!
Tuesday, December 11, 2007
Bone Marrow Drive This Friday!!!
Blood & Bone Marrow Drive
Friday, December 14th
3:00pm-9:00pm
Torrance High School Annex Cafeteria
If you are planning on coming and have not let us know please RSVP to ann@getswabbed.org. Caucasian donors can help our fundraising money stretch farther by also signing up for a blood appointment with the Red Cross at www.givelife.org (sponsor code = Jillian). There will be a $10 fee for Caucasian donors who do not give blood. People of all other ethnic backgrounds are free!! Please bring your drivers license and the name/address/phone #/e-mail of two people who do not live with you. The NMDP will not contact them unless they are looking for you! Thank you for your suport!
Ann Gerlach :)
Friday, December 14th
3:00pm-9:00pm
Torrance High School Annex Cafeteria
If you are planning on coming and have not let us know please RSVP to ann@getswabbed.org. Caucasian donors can help our fundraising money stretch farther by also signing up for a blood appointment with the Red Cross at www.givelife.org (sponsor code = Jillian). There will be a $10 fee for Caucasian donors who do not give blood. People of all other ethnic backgrounds are free!! Please bring your drivers license and the name/address/phone #/e-mail of two people who do not live with you. The NMDP will not contact them unless they are looking for you! Thank you for your suport!
Ann Gerlach :)
Monday, December 10, 2007
Home Again, Home Again, Jiggity Jog
Well, so, surprise! Jill was sent home Saturday night. No more cough (that was fast) & her ANC is around 300 something (it had hit 600 something, so they knew it was on the upswing, & felt confident it would be back up soon). The Dr. predicts she'll be home at least a week. We're so excited to have her back home!! She is such a little ball of sunshine. Always happy, always excited about everything. Cousin Kevin is staying with us right now (he got off the plane & said, "Operation Holy Crap is UNDERWAY") & she just loves him to PIECES. They've been playing all kinds of games & acting out fairytales & he's been teaching her phrases like, "Get with the program, Oprah" & "tastes like chicken". Her language continues to blow me out of the water!!! Tonight she said, "When Daddy done sainzing my bopper (diaper), I pay wih dis (Kevin)". And I'm so impressed with how she handles discomfort/slight pain & changes in her routine! For instance, when she got stabbed in the hand for an IV placement (for a kidney test) on Friday, she looked at me like, "what just happened????" & said, "See (she) hurt my hand!!!"...her chin quivered a little, but no tears. Tonight, I took the tape off her chest that held the plastic bag over her "dressing" that absolutely cannot get wet (for her bath)...it hurts, I know it does....it's TAPE...worse than a bandaid....way more surface area....sensitive parts of the skin (like her armpit, for instance)....I talked to her about Frosty the Snowman ("and what happens when he loses his hat?" "He tan't talk!" "And how about when he gets hot?" "He met (melt) away! And tids det sad (kids get sad)!") and before she knows it, it's over, & she is being praised up & down the block for being such a strong, big girl. Which she totally IS.
So, to backtrack....while Jill was confined to her room, the Child Life people never forgot her....they always sent special visitors to HER....we had volunteers make hand-painted aprons with her one day, a woman from the Long Beach Symphony come in to play her flute for 30 minutes while Jill danced around the room, our friend, Amy from Sunshine Kids, came to help Jill make Christmas cards, and Pandie/Huxley, Jill's 2 favorite "little" dogs let her pet them & give them treats. Friday was an excellent day for Jill & I. Santa Claus came to visit her in her room (and gave her a really nice gift) and we spent the next 2 hours on the first floor (they finally let her leave her room...with a mask) taking part in a HUGE event called "Santa's Workshop" sponsored by Tucker, the construction company that is building the new wing on the hospital. They had games & crafts, tables loaded up with toys & gifts that Jill could "buy" for every member of her family, then gift wrap with some volunteer help, yummy food, face painting, and caricature sketch artists (hers turned out so adorable!). Staff from Tucker slipped some gift cards for "mommy" in her bag, as well. It was so much fun!! The adoring comments made by so many people there about my baby made me feel so happy & proud to be her Mommy. The IV & kidney test (standard protocol at this stage of the game...and all is well) made me even more proud of her. Lise came that evening & stayed with her while Matt & I had a nice romantic dinner at a cafe right down the street from the hospital...we ran into a co-worker of Matt's at the Long Beach Historical Society building & had a very nice chat with he & his wife before Matt headed back to the hospital to spend the night, & I went off to pick up Anna from Kristi & Ian's. Saturday was a whirlwind day of "is she coming home or not?" while Matt waited to hear what the doctor had to say. Kevie went up to the hospital to move us out while I frantically cleaned for 4 hours straight while Anna played on her own (she's getting so much better at that) & fell asleep on the couch watching Mary Poppins. We went to Mikayla's 8th Birthday Party at Olivia's Tea Room shortly after Jill got home, which brings us to today....Anna's bday party at Ryan Park. Which was awesome. The weather was amazing, but even MORE amazing is the work my friends did to execute my plan of a fun & exciting day for our big girl. Rebecca brought balloons, Ann got food & drinks, Heather made games, Jannah brought more food & carted loads of stuff (including the games to the party), Renee made cupcakes, Sharon played guitar (complete with fun Wizard of Oz lyrics sung to the tune of "Down by the Bay"), Cristina brought a pinata, Sam brought plates, soooooo many people helped set-up & clean-up, Dina videotaped....the list goes on!!!! We could NOT have pulled off such a feat alone. It was so wonderful for Anna. She had a BLAST!!!! We had a blast! Jill stayed home with Kevin (on HIS actual birthday) because so many kids are sick right now (6 of Anna's friends could not come due to illness) & we didn't want to risk Jill catching anything. Anna went to bed tonight with a fever. Let's hope it doesn't spread....but I'm assuming it will. It would be miraculous if GiGi didn't catch it! If she gets a fever, she immediately goes back in. Ugh. Anyway, tomorrow's plan is for Kevin to entertain Jill upstairs (or rather, Jill entertain Kevin) while I contain little sicky downstairs, and Matt comes home as soon as humanly possible from work). I wish Kevin could stay forever. It is so nice to have him here.
Okay, I have to go to bed, but I MUST mention (MENTION? rather SCREAM & SHOUT!!!!!) that the Bone Marrow Drive held at Sts. Joachim & Ann today in St Charles, MO (plan conceived & brilliantly executed by my DAD, with many willing volunteers) inducted a total of:
232 NEW BONE MARROW DONORS
Wow. And that, with an ice storm. Impressive. God Bless All of You!!!! We heard a handful of inspirational stories from today & would love to share more of them on the blog. As you think of them, jot them down & shoot me an email. I am moved by the love sent out to us from so far away & only wish we could've all been there to witness it.
Happy Birthday Great-Grandma Hunn. "May the Dear Lord Bless You!" From Jillian's lips to God's ears. That doesn't taste AT ALL like chicken.
So, to backtrack....while Jill was confined to her room, the Child Life people never forgot her....they always sent special visitors to HER....we had volunteers make hand-painted aprons with her one day, a woman from the Long Beach Symphony come in to play her flute for 30 minutes while Jill danced around the room, our friend, Amy from Sunshine Kids, came to help Jill make Christmas cards, and Pandie/Huxley, Jill's 2 favorite "little" dogs let her pet them & give them treats. Friday was an excellent day for Jill & I. Santa Claus came to visit her in her room (and gave her a really nice gift) and we spent the next 2 hours on the first floor (they finally let her leave her room...with a mask) taking part in a HUGE event called "Santa's Workshop" sponsored by Tucker, the construction company that is building the new wing on the hospital. They had games & crafts, tables loaded up with toys & gifts that Jill could "buy" for every member of her family, then gift wrap with some volunteer help, yummy food, face painting, and caricature sketch artists (hers turned out so adorable!). Staff from Tucker slipped some gift cards for "mommy" in her bag, as well. It was so much fun!! The adoring comments made by so many people there about my baby made me feel so happy & proud to be her Mommy. The IV & kidney test (standard protocol at this stage of the game...and all is well) made me even more proud of her. Lise came that evening & stayed with her while Matt & I had a nice romantic dinner at a cafe right down the street from the hospital...we ran into a co-worker of Matt's at the Long Beach Historical Society building & had a very nice chat with he & his wife before Matt headed back to the hospital to spend the night, & I went off to pick up Anna from Kristi & Ian's. Saturday was a whirlwind day of "is she coming home or not?" while Matt waited to hear what the doctor had to say. Kevie went up to the hospital to move us out while I frantically cleaned for 4 hours straight while Anna played on her own (she's getting so much better at that) & fell asleep on the couch watching Mary Poppins. We went to Mikayla's 8th Birthday Party at Olivia's Tea Room shortly after Jill got home, which brings us to today....Anna's bday party at Ryan Park. Which was awesome. The weather was amazing, but even MORE amazing is the work my friends did to execute my plan of a fun & exciting day for our big girl. Rebecca brought balloons, Ann got food & drinks, Heather made games, Jannah brought more food & carted loads of stuff (including the games to the party), Renee made cupcakes, Sharon played guitar (complete with fun Wizard of Oz lyrics sung to the tune of "Down by the Bay"), Cristina brought a pinata, Sam brought plates, soooooo many people helped set-up & clean-up, Dina videotaped....the list goes on!!!! We could NOT have pulled off such a feat alone. It was so wonderful for Anna. She had a BLAST!!!! We had a blast! Jill stayed home with Kevin (on HIS actual birthday) because so many kids are sick right now (6 of Anna's friends could not come due to illness) & we didn't want to risk Jill catching anything. Anna went to bed tonight with a fever. Let's hope it doesn't spread....but I'm assuming it will. It would be miraculous if GiGi didn't catch it! If she gets a fever, she immediately goes back in. Ugh. Anyway, tomorrow's plan is for Kevin to entertain Jill upstairs (or rather, Jill entertain Kevin) while I contain little sicky downstairs, and Matt comes home as soon as humanly possible from work). I wish Kevin could stay forever. It is so nice to have him here.
Okay, I have to go to bed, but I MUST mention (MENTION? rather SCREAM & SHOUT!!!!!) that the Bone Marrow Drive held at Sts. Joachim & Ann today in St Charles, MO (plan conceived & brilliantly executed by my DAD, with many willing volunteers) inducted a total of:
232 NEW BONE MARROW DONORS
Wow. And that, with an ice storm. Impressive. God Bless All of You!!!! We heard a handful of inspirational stories from today & would love to share more of them on the blog. As you think of them, jot them down & shoot me an email. I am moved by the love sent out to us from so far away & only wish we could've all been there to witness it.
Happy Birthday Great-Grandma Hunn. "May the Dear Lord Bless You!" From Jillian's lips to God's ears. That doesn't taste AT ALL like chicken.
Thursday, December 6, 2007
Much Improved
Jill is doing much better..still coughing & wheezing, especially when she sleeps, but the dr's have kept it under control with steroids (which make her hungry--GOOD--and moody--LAUGHABLE ... a 2 year old with a mood-control problem ... isn't that a given?). She is now yelling at Matt about something ridiculous while I take a very short computer break. He is going home tonight (I am now going on 48 hours here, but it's more hassle to go home & fight with a very tired 4 year old who has been at Disneyland all day...thanks Dina!) to get her to bed in time to get up at 6:30 so she can get to her RaceCar Driver's house at 7:15, so I can be back here at 8am. And making a lunch, and getting caught up in what a mess my house is (no thanks to Cousin Kevin, who arrived yesterday and hasn't done a darned thing....have fun at Disneyland, did ya, Kev? Hmm? Hmm? I'm KIDDING! I just hope you're prepared for how dirty our bathrooms are Buster Brown.)
Okay, so Lise is coming tomorrow (barring surprise illness) to stay a while with the "J" Bird so Matt & I can go out to dinner (with a gift card from Rebecca & Johnny). Matt will spend the night with Jill due to her coughing fits, and I will take Anna to ballet in the morning & do last minute touches for her bday party on Sunday. It's gonna be so great (thanks to 20 or so very wonderful friends that are pulling it off FOR me....I'm so excited!).
Thanks for all of your phone calls & notes, & emails, & gifts & donations & prayers. We are doing okay. Can't believe Christmas is just a few weeks away.
Okay, so Lise is coming tomorrow (barring surprise illness) to stay a while with the "J" Bird so Matt & I can go out to dinner (with a gift card from Rebecca & Johnny). Matt will spend the night with Jill due to her coughing fits, and I will take Anna to ballet in the morning & do last minute touches for her bday party on Sunday. It's gonna be so great (thanks to 20 or so very wonderful friends that are pulling it off FOR me....I'm so excited!).
Thanks for all of your phone calls & notes, & emails, & gifts & donations & prayers. We are doing okay. Can't believe Christmas is just a few weeks away.
Monday, December 3, 2007
Pneumonia
Unfortunately, Jill's cough has gotten worse......she had a chest & neck xray last night following this terrible croupy cough & trouble getting air in. They put her on a narrow board, strapped her arms down by her side, tilted the top half of the board up so her head bent back (she was looking upside down), put massive headphone looking things on either temple & snugged them up, then taped her forehead & chin to the table (if you can picture this)....she fussed for me, I talked to her (they wouldn't let me stand next to her), and she calmed...."Mommy's right here, Gigi. Let's sing a song...." "Otay, Mommy, otay...." I started to sing & the tech said, "Shhhhh...I want her to cry (the inspiration would help make a better picture for the xray)." Ummmmmm....so, I'm supposed to pretend I'm not here while my poor little baby is strapped to a table, scared out of her wits? Okay, if it gives you a better picture. Gulp. "Mommy? Mommy? MOMMY?" Deeper, quicker breaths....quicker, quicker, sucking air for a huge explosion....SNAP,Click...."Okay, Mom, go get her." I dash...."It's okay, it's okay, it's okay....you did so GOOD!" I help get her unstrapped, untaped (OUCH), she's shaking, I'm shaking, she grabs onto my neck & wraps her legs around my waist, I start to sob. "I'm so proud of you, baby. I'm just so proud of you. You're such a big girl." She pulls back & looks at me, beaming. "Tan I have a Pwincess Stickuh?" I beam back through the tears. You can have THREE! She picks her three....Snow White, Sleeping Beauty, Cinderella. It's a trio. You can't just have one....or two....the tech walks by, "Oh, which one are you going to pick? Only one....." Screw her. Are you kidding me? I say, "Cinderella it IS." as I hand Jilli Cinderella & put Snow White & Sleeping Beauty in my pocket.
She didn't sleep much at all last night. They started treating her for pneumonia today with breathing treatments & a different antibiotic. The nursing situation is a mess as far as we're concerned. Our nurse yesterday & today missed so much, some of which was no fault of her own, but it's no fault of mine either. I expect that when my child is sick & needs a certain medicine, she'll get it....not another one that she really shouldn't be getting or that one will be skipped because of an "oversight". Thank god Matt brought a lot of the mistakes to my attention...I was too sleep-deprived to notice. The dietician is phenomenal....she is giving us a lot of good ideas about different foods to try (Jill is having a tough time eating, mainly because it hurts to swallow) & she researches new "whims" Matt has along the anitoxidant or herbal supplement trail rather than blowing him off.....she spent a good deal of time talking to him via phone today about a supplement he inquired about. So, with the difficult times, there are smooth ones. It's a balance. I am disappointed at times, but extremely pleased at others. What more could we ask for? This is Life. If it were easy, what would any of us have to do?
Matt & I feel that no one should come visit until the pneumonia has cleared up....we can't go introducing other random viruses (that you may not know you have) until this one is completely gone (and please send your prayers/positive energy for full recovery from this.....a friend of ours is in the I.C.U. with pnuemonia right now...same cancer diagnosis....it could turn for the worse fast). Please also pray that she doesn't have strep throat. This is one of the 3 top killers for kids in this situation. As well as she has been doing so far, this ugly disease is certainly not going quietly......it reminds us how precious every second of play really is. Another reason why I may not answer the phone when it rings (I haven't given out the new room # mainly for that reason...one phone ringing when I can't answer it anyway is plenty...and the room phones don't have off switches). Jill needs every bit of love and attention I've got....Matt too. He is doing a lot of this work too....don't want people to forget about him just because I'm the "voice" of this blog. He is inspiring to me in his love for our baby & our family. We got to go out on a date the other night (thank you Lise!!! I just realized your name is not spelled traditionally......sorry about that!). We had a very romantic dinner at Think Bistro in San Pedro & I was reminded of just how much I love him. I am so proud of his strength & will to make this better. He is truly the backbone of this family. And SUCH an atypical husband! He cooks/cleans/shops/cares for the kids....all gladly. As if it should never be a question. We have a very EQUAL relationship. We respect each other greatly (at least, I hope he knows I respect him.....I can get a little out of line at times) and love each other tremendously. He'll post one of these days, maybe. If either of us should be a writer, it's HIM. Okay, enough.....I have been told firmly by a few close friends that I should be in bed by now.
Thanks for all the hard work you're putting into the drive, Mom & Dad. I'm sure it will be awesome...the quantity doesn't really matter.....it's the love behind it, and the awareness you're raising. We are not comparing efforts from one drive to another, so I hope no one who is helping with one feels that way. I want you all to know how much we love you & appreciate every little thing you do & say to help support our baby through all of this.
Cousin Kev comes in on Wednesday.....hope he's bringing his apron, toilet-scrubbing gloves, & butler outfit. Boy do we have a job for him.
She didn't sleep much at all last night. They started treating her for pneumonia today with breathing treatments & a different antibiotic. The nursing situation is a mess as far as we're concerned. Our nurse yesterday & today missed so much, some of which was no fault of her own, but it's no fault of mine either. I expect that when my child is sick & needs a certain medicine, she'll get it....not another one that she really shouldn't be getting or that one will be skipped because of an "oversight". Thank god Matt brought a lot of the mistakes to my attention...I was too sleep-deprived to notice. The dietician is phenomenal....she is giving us a lot of good ideas about different foods to try (Jill is having a tough time eating, mainly because it hurts to swallow) & she researches new "whims" Matt has along the anitoxidant or herbal supplement trail rather than blowing him off.....she spent a good deal of time talking to him via phone today about a supplement he inquired about. So, with the difficult times, there are smooth ones. It's a balance. I am disappointed at times, but extremely pleased at others. What more could we ask for? This is Life. If it were easy, what would any of us have to do?
Matt & I feel that no one should come visit until the pneumonia has cleared up....we can't go introducing other random viruses (that you may not know you have) until this one is completely gone (and please send your prayers/positive energy for full recovery from this.....a friend of ours is in the I.C.U. with pnuemonia right now...same cancer diagnosis....it could turn for the worse fast). Please also pray that she doesn't have strep throat. This is one of the 3 top killers for kids in this situation. As well as she has been doing so far, this ugly disease is certainly not going quietly......it reminds us how precious every second of play really is. Another reason why I may not answer the phone when it rings (I haven't given out the new room # mainly for that reason...one phone ringing when I can't answer it anyway is plenty...and the room phones don't have off switches). Jill needs every bit of love and attention I've got....Matt too. He is doing a lot of this work too....don't want people to forget about him just because I'm the "voice" of this blog. He is inspiring to me in his love for our baby & our family. We got to go out on a date the other night (thank you Lise!!! I just realized your name is not spelled traditionally......sorry about that!). We had a very romantic dinner at Think Bistro in San Pedro & I was reminded of just how much I love him. I am so proud of his strength & will to make this better. He is truly the backbone of this family. And SUCH an atypical husband! He cooks/cleans/shops/cares for the kids....all gladly. As if it should never be a question. We have a very EQUAL relationship. We respect each other greatly (at least, I hope he knows I respect him.....I can get a little out of line at times) and love each other tremendously. He'll post one of these days, maybe. If either of us should be a writer, it's HIM. Okay, enough.....I have been told firmly by a few close friends that I should be in bed by now.
Thanks for all the hard work you're putting into the drive, Mom & Dad. I'm sure it will be awesome...the quantity doesn't really matter.....it's the love behind it, and the awareness you're raising. We are not comparing efforts from one drive to another, so I hope no one who is helping with one feels that way. I want you all to know how much we love you & appreciate every little thing you do & say to help support our baby through all of this.
Cousin Kev comes in on Wednesday.....hope he's bringing his apron, toilet-scrubbing gloves, & butler outfit. Boy do we have a job for him.
Garage Sale Success!!!!
Thanks to all who worked so hard putting on the Garage/Bake Sale to raise funds for the upcoming bone marrow drives. We grossed over $5000!!!!! Thanks especially, to Ally & Dave for giving up at least a week of their lives & opening their home for this massive event. Thanks to everyone who donated items, helped organize & sort them, hung up signs (Danielle & Sallie), moved furniture at 5:00am, baked (and bought) goodies, hung up/passed out fliers, manned the cash register & front table (especially the 2 Shaaana's, Brenda, Dina, Jim, Mikayla & Don---random shopper who offered security for a good 2 hours), passed out more flyers for the bone marrow drive all up & down Pacific Ave (another "shopper" named Lucy, and her beautiful daughter), helped watch the kids of the helpers (THAT was a big job....the 2 Ally's manned the fort most of the morning--that was probably the most exhausting of all jobs), helped sell, helped move, helped load, helped clean, helped count cash.....etc. etc. etc.!!! There were so many beautiful stories from that day.....I am waiting for people to get me their favorites so I can post them all here (I think everyone is still recovering at the moment). I will share a few:
A woman named Alyce attached pretty little rainbow notes to green bracelets which read "Tell Cancer to Take a Hike" for us to pass out/sell.....we did not know her....she happened upon the blog & was moved to action :)
A man came by & made a donation in the name of his 5 day-old baby, who passed away recently after being born prematurely.
Another man saw Jill's poster at the bank & made a donation....with tears in his eyes. Gave me the best hug ever. Didn't even know him.
Numerous friends & friends once, twice, and three times removed came to help (Beach School Family! You are Wonderful....thanks especially to Teacher Sandy & Tim!) & to buy, and to love all of us.
Our local Councilwoman, Janice Hahn, came by to show her support as well! It was wonderful to see her happy smile & to know she cared. Thank you, Janice, for believing in San Pedro. My husband & I did not grow up here, but feel now as if we have....I've never felt such a sense of belonging & community as I do here.
Thank you once again to the Pedro Planning Team for their vigilance with the GetSwabbed campaign! Ourania, for creating, and Shana, for ordering the shirts....and selling them with gusto! It is so empowering to make change happen, isn't it? Who knew just a few people could make such a huge difference.
I have so much else to share, but do not have the time or energy to do so right now....I need your help to share this story. Please email me at squashdiddlydoo@msn.com before you forget what an amazing day this was! (I don't think I ever could!!). Pictures to be posted soon.
I have not forgotten the gobs of people who do not know our family personally, who made sizeable, and (collectively sizeable) donations to the cause. Every little thing you do is MAGIC.
A woman named Alyce attached pretty little rainbow notes to green bracelets which read "Tell Cancer to Take a Hike" for us to pass out/sell.....we did not know her....she happened upon the blog & was moved to action :)
A man came by & made a donation in the name of his 5 day-old baby, who passed away recently after being born prematurely.
Another man saw Jill's poster at the bank & made a donation....with tears in his eyes. Gave me the best hug ever. Didn't even know him.
Numerous friends & friends once, twice, and three times removed came to help (Beach School Family! You are Wonderful....thanks especially to Teacher Sandy & Tim!) & to buy, and to love all of us.
Our local Councilwoman, Janice Hahn, came by to show her support as well! It was wonderful to see her happy smile & to know she cared. Thank you, Janice, for believing in San Pedro. My husband & I did not grow up here, but feel now as if we have....I've never felt such a sense of belonging & community as I do here.
Thank you once again to the Pedro Planning Team for their vigilance with the GetSwabbed campaign! Ourania, for creating, and Shana, for ordering the shirts....and selling them with gusto! It is so empowering to make change happen, isn't it? Who knew just a few people could make such a huge difference.
I have so much else to share, but do not have the time or energy to do so right now....I need your help to share this story. Please email me at squashdiddlydoo@msn.com before you forget what an amazing day this was! (I don't think I ever could!!). Pictures to be posted soon.
I have not forgotten the gobs of people who do not know our family personally, who made sizeable, and (collectively sizeable) donations to the cause. Every little thing you do is MAGIC.
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