Here's the update....Jill's fever seems to be under control but still present. They found gram-positive bacteria growing in her blood samples....bacterial infections are to be expected when kids go neutropenic (no white blood cells), hence the raging fever and nausea/diarrhea....and it is good that the bacteria is gram-positive because that means the antibiotics she's on should treat it. So Matt has been with her since Friday night as on Saturday, I started getting a sore throat. I definitely have one now...and a cough...so I will not be going to the hospital until it clears. Matt is taking off the entire week (sin pay....thank you generous donors for making this possible) and I am staying home to rest/recover and (because I can't help it and it needs to be done) cleaning/organizing. Anna will go to school M/W/F this week and to Dina's T/Th (thank you Dina!). If you would like to see Jill (she should be over the really yucky stuff in the next few days) or possibly give Matt a little break (if he'll take one), give him a call at 310-846-7254.
I sent out 2 videos of Jilly recently on Vimeo. If for some reason, you didn't get them or could not view them, let me know. I'm just learning all of this.
Monday, April 7, 2008
Saturday, April 5, 2008
Fever
Jill came down with a fever this morning. It has been up and down all day and she won't eat anything. I talked to Matt at 9pm and it was over 104. I freaked out because I've heard of kids losing the fight to chemo.....sometimes that wiping out of your immune system over and over is what gets you....not the cancer. This cannot happen now. She has been doing so great. I cried, I called my parents, I felt so desperate and anxious and guilty for not spending time with her today (Anna has a little cough so we're staying away from the hospital, and she and I had a lot of fun today going to the park for bike riding, the beach for treasure-collecting, out to lunch, out for ice cream, the bank, where she deposited my checks for me, step by step, the UPS store, the grocery store, Lakeshore, where I used her "modeling" gift certificates that were about to expire...she got a Magician's Kit, a Bug Vaccuum, a Bug Terrarium and a phonics game....then to dinner, then to IKEA....).........and I've been so lazy with Jill lately. Just trying to get through the days awake without tripping over her or myself. I still feel crappy with this pregnancy. Her fever came down to 101.4 around 9:15. Matt's really upset with the nursing staff we had today regarding her getting medicated properly for this. He feels her fever would have been much better controlled had the nurses been more on top of things. Whether it's miscommunication or forgetfulness brought on by being given too much to remember or them simply not thinking what we think is important is really important, we find ourselves (as maybe we should expect?) doing a lot of nursing our child to health on our own. I am certainly not speaking of all the nurses....there are a handful we completely trust with Jill's life. We just unfortunately don't always have access to them. So, Matt will be checking Jill's temp every half hour or so all night (he said her temp went from 100.4 to 104.2 in a matter of 20 minutes...the nurse wasn't due to check her for another 2 hours...if he hadn't caught it, what could've happened????). I feel like my worry will keep me up here at home right along with him.
Please keep Jill in the forefront of your thoughts from now until I report she's back to her normal self. Ready.....GO.
Please keep Jill in the forefront of your thoughts from now until I report she's back to her normal self. Ready.....GO.
Tuesday, April 1, 2008
Beautiful Day
So Jillian is on top of the world. Her energy is through the roof. Her attitude couldn't be better. She is the brightest, shiniest, most sparkliest ray of light I've ever ever ever seen. Despite not being able to open her eyes this morning (she is extremely sensitive to light right now because the chemo they gave her this last time was 10 times the strength of any before....and it was poisonous enough to begin with), she plowed through her breakfast opening her mouth wide like a baby bird and turning her head to where she thought the fork with the scrambled eggs may be coming in for a landing. She would reach both hands out in front of her, cupped, and try to grab her glass, which wasn't on her tray, then frown at me (with eyes squeezed shut) and say, "Where my tup doh?" And I'd place it in her hands, and she'd gulp it down, slam it on the tray..."Thanks mom!" After an hour or so (and some eyedrops, and some tylenol), she pryed them open and proceeded to have a helluva day in the hallway....trying on dress after dress, making up very elaborate dances, storming up to random strangers, taking their hands and leading them on an adventure to the jungle, the ocean, the palace.....
A most touching thing happened tonight....a mom and dad were in the hallway right outside of our room. The mom was crying and the dad was trying to comfort her. Jill pranced out of her room (right next door) holding her Gabriella and Troy dollies. She looked up at this mom and said (I'm not kidding), "You look like you need something. Here", and she thrust Gabriella into mom's hand. The mom wiped her tears, smiled, and said thank you....Jill was already on her way down the hall. A few minutes later, the dad came up to me and asked if we would come into his son's room so he could meet Jilly. I happily escorted her in there.....he is 17, very frail, with an NG tube, eyes wide open, trying to talk, but can't....trying to smile, but having a really hard time....I said, "Jilly, say hi." She blew him a kiss, then tucked her chubby forearm under her chin and cocked her head to the side (this is how she does it...she blows one then catches one). He tried very hard to lift his arm, but couldn't...he managed to lift a few fingers and one corner of his mouth turned up. I left the room with Jill feeling like I was carrying a guardian angel. I really really believe that she brings light to this place. People (new people) are constantly sticking their heads out of their rooms wondering "who is making all that joyful noise?" They can't believe she is only 2. And that she's "sick". I can't either. I can't either.
Thank you Renee and Kate for coming to visit tonight....for the books (Renee....Jill loves them...she wanted to pretend she was all the animals too), the citrus!!!, and mostly, the Kung Pao Chicken :) No, mostly for the company. It meant a lot to me that you came. I know it's rare you get a night free.
Congratulations a million times over to my good friend, Shaana, who passed her Doctorate Program and just submitted her dissertation....revised and completed. We may now call her "Dr. Berman"!!! Yippeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!!!!! If she stays at Launch next year (and all goes as planned), she will be Anna's new preschool teacher.
If anyone knows anyone who could watch Anna in the afternoons (3 days a week 12-4, in the Torrance/Lomita area) starting in September....a college kid, a neighbor who stays home with her kids & could use extra cash, an established home daycare.....please let me know. My wheels are turnin' about what to do for next year......going back to work/etc/etc.......
A most touching thing happened tonight....a mom and dad were in the hallway right outside of our room. The mom was crying and the dad was trying to comfort her. Jill pranced out of her room (right next door) holding her Gabriella and Troy dollies. She looked up at this mom and said (I'm not kidding), "You look like you need something. Here", and she thrust Gabriella into mom's hand. The mom wiped her tears, smiled, and said thank you....Jill was already on her way down the hall. A few minutes later, the dad came up to me and asked if we would come into his son's room so he could meet Jilly. I happily escorted her in there.....he is 17, very frail, with an NG tube, eyes wide open, trying to talk, but can't....trying to smile, but having a really hard time....I said, "Jilly, say hi." She blew him a kiss, then tucked her chubby forearm under her chin and cocked her head to the side (this is how she does it...she blows one then catches one). He tried very hard to lift his arm, but couldn't...he managed to lift a few fingers and one corner of his mouth turned up. I left the room with Jill feeling like I was carrying a guardian angel. I really really believe that she brings light to this place. People (new people) are constantly sticking their heads out of their rooms wondering "who is making all that joyful noise?" They can't believe she is only 2. And that she's "sick". I can't either. I can't either.
Thank you Renee and Kate for coming to visit tonight....for the books (Renee....Jill loves them...she wanted to pretend she was all the animals too), the citrus!!!, and mostly, the Kung Pao Chicken :) No, mostly for the company. It meant a lot to me that you came. I know it's rare you get a night free.
Congratulations a million times over to my good friend, Shaana, who passed her Doctorate Program and just submitted her dissertation....revised and completed. We may now call her "Dr. Berman"!!! Yippeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!!!!! If she stays at Launch next year (and all goes as planned), she will be Anna's new preschool teacher.
If anyone knows anyone who could watch Anna in the afternoons (3 days a week 12-4, in the Torrance/Lomita area) starting in September....a college kid, a neighbor who stays home with her kids & could use extra cash, an established home daycare.....please let me know. My wheels are turnin' about what to do for next year......going back to work/etc/etc.......
Monday, March 31, 2008
The Difference a Day Makes
...and a caring group of doctors and nurses....
So, the day after my hissy fit in the hallway, the medical team came in for rounds and told me they were getting us our own room. It wouldn't be guaranteed for any length of time, but they did some shuffling around and freed a room because they knew how it may well lift the gloom that was hanging over me. (Not Jill, ME.) By the way (a sidenote! Ha! Isn't this entire blog supposed to be about Jill???).....Jill is doing amazing!!! She finished her chemo on Friday. Finished. Done. Over with. No waning appetite this time (quite the contrary)...no nauseousness (yet), no rashes, no fevers. She has exploded through this final phase with guns ablazin'. She is our solid gold dancer. Our hoop and holler and shout "Alleluia! That baby got things under CONTROL." She has been a ball of freaky fun (even during the party like a rockstar night we had when I almost lost my mind). Her last chemo was administered as a shot in her thigh....she let out a little whimper and it was done. The nurse who gave it to her was way more nervous than Jill was. Jill even thanked her when it was over and told her she did a good job. Does this girl have any flaws????
Tonight, my good friend Tanya and her 7 and 9 year-old beauty queen daughters Makaiya & Keona (Kaiya & KiKi, for short) came to dazzle Jill with their presence/presents (Troy and Gabriella dolls and the coolest ever dress up outfit Jill has ever ever tried on...I will post a picture as soon as I get them uploaded....slinky red dress, dangling silver earrings & necklace, ruby slippers--borrowed from her own box--and ruby red glittery-rimmed glasses....HILARIOUS....no, what made it really hilarious was the dancing....I almost forgot the glittery silver microphone she held right up in her grill while she shook that booty like it wasn't fastened on! Ha! Man I wish I could figure out how to easily upload a video so everyone could see this crazy child in action!! She's a sight to behold...costume or not....). She had us all in stitches.
It was so great to have friends out...they made the time go by so fast (man, did we have fun!). Jill totally looks up to her "more mature" girlfriends and Tanya was so playful with her too! It delights me that people take so much interest in Jill....she's kind of hard to ignore, I guess :) She's so dang smart too! She said something about "srying" tonight...which I knew was "crying", but I wanted to show her off to Tanya (when I act like I don't know what she's saying, she finds a way to get it through somehow)...so I said, "what do you mean, 'sry'?" Here I thought she'd say, "Like this...(and make a crying sound)"....but she delved into this big explanation..."You know, 'sry'...lite when I dit a bonkey (I say "bonk" whenever she hurts herself) and Dr. Salo says, 'You otay? Lemme put a bandaid on nat.' And I say, 'Owwie! Dat hurts!' Den I sry." And tonight as she was falling asleep, I recited "Goodnight Moon" to her and I got all the way to the end "goodnight noises everywhere" and she said, "And doodnight toyhouse....you didn't say dat." And I said, "Yes I did....didn't I?" (I could've sworn I did) And she said, "No....(and she sits up...looking pensive, like she needs to be sure)....no, you didn't. You need to say 'doodnight house and doodnight mouse'." And then I remembered...I DID leave that part out. Wow. Wow. Where did she come from and why do I get her? Needless to say, I am grateful.
Our friend Lisa came out on Saturday and brought pizza for the girls and then made strawberry shortcake with them (with sprinkles!!) and played POGS (remember pogs??) and with felt cutouts and watched one of the myriad of movies she brought....all while Matt & I went to dinner at Outback (thanks Sonia!!). Neither of our children even looked up when we left (or returned)....just goes to show how much Lisa means to them. Thank you Lisa.
So many people have called or emailed to try and offer a little rescue to us in our (my?) time of need. Thank you. Thank you for your good wishes and plans to visit/stay with Jill (especially overnight...that is really big....and we know just how much). Every little thing means a lot....we would be nowhere without every single one of you. Can't wait to see so many friends this week!!
So, the day after my hissy fit in the hallway, the medical team came in for rounds and told me they were getting us our own room. It wouldn't be guaranteed for any length of time, but they did some shuffling around and freed a room because they knew how it may well lift the gloom that was hanging over me. (Not Jill, ME.) By the way (a sidenote! Ha! Isn't this entire blog supposed to be about Jill???).....Jill is doing amazing!!! She finished her chemo on Friday. Finished. Done. Over with. No waning appetite this time (quite the contrary)...no nauseousness (yet), no rashes, no fevers. She has exploded through this final phase with guns ablazin'. She is our solid gold dancer. Our hoop and holler and shout "Alleluia! That baby got things under CONTROL." She has been a ball of freaky fun (even during the party like a rockstar night we had when I almost lost my mind). Her last chemo was administered as a shot in her thigh....she let out a little whimper and it was done. The nurse who gave it to her was way more nervous than Jill was. Jill even thanked her when it was over and told her she did a good job. Does this girl have any flaws????
Tonight, my good friend Tanya and her 7 and 9 year-old beauty queen daughters Makaiya & Keona (Kaiya & KiKi, for short) came to dazzle Jill with their presence/presents (Troy and Gabriella dolls and the coolest ever dress up outfit Jill has ever ever tried on...I will post a picture as soon as I get them uploaded....slinky red dress, dangling silver earrings & necklace, ruby slippers--borrowed from her own box--and ruby red glittery-rimmed glasses....HILARIOUS....no, what made it really hilarious was the dancing....I almost forgot the glittery silver microphone she held right up in her grill while she shook that booty like it wasn't fastened on! Ha! Man I wish I could figure out how to easily upload a video so everyone could see this crazy child in action!! She's a sight to behold...costume or not....). She had us all in stitches.
It was so great to have friends out...they made the time go by so fast (man, did we have fun!). Jill totally looks up to her "more mature" girlfriends and Tanya was so playful with her too! It delights me that people take so much interest in Jill....she's kind of hard to ignore, I guess :) She's so dang smart too! She said something about "srying" tonight...which I knew was "crying", but I wanted to show her off to Tanya (when I act like I don't know what she's saying, she finds a way to get it through somehow)...so I said, "what do you mean, 'sry'?" Here I thought she'd say, "Like this...(and make a crying sound)"....but she delved into this big explanation..."You know, 'sry'...lite when I dit a bonkey (I say "bonk" whenever she hurts herself) and Dr. Salo says, 'You otay? Lemme put a bandaid on nat.' And I say, 'Owwie! Dat hurts!' Den I sry." And tonight as she was falling asleep, I recited "Goodnight Moon" to her and I got all the way to the end "goodnight noises everywhere" and she said, "And doodnight toyhouse....you didn't say dat." And I said, "Yes I did....didn't I?" (I could've sworn I did) And she said, "No....(and she sits up...looking pensive, like she needs to be sure)....no, you didn't. You need to say 'doodnight house and doodnight mouse'." And then I remembered...I DID leave that part out. Wow. Wow. Where did she come from and why do I get her? Needless to say, I am grateful.
Our friend Lisa came out on Saturday and brought pizza for the girls and then made strawberry shortcake with them (with sprinkles!!) and played POGS (remember pogs??) and with felt cutouts and watched one of the myriad of movies she brought....all while Matt & I went to dinner at Outback (thanks Sonia!!). Neither of our children even looked up when we left (or returned)....just goes to show how much Lisa means to them. Thank you Lisa.
So many people have called or emailed to try and offer a little rescue to us in our (my?) time of need. Thank you. Thank you for your good wishes and plans to visit/stay with Jill (especially overnight...that is really big....and we know just how much). Every little thing means a lot....we would be nowhere without every single one of you. Can't wait to see so many friends this week!!
Thursday, March 27, 2008
Adjusting, but keep reading...need help....
So, I'm sitting in the hallway at 4pm right next to boxes of our things and Jill (sleeping!) in her crib under the bright flourescent lights and people tramp tramp tramping up and down the hallway. (That girl could sleep through a football game in the middle of the field!). We are here because they are moving us to a bed by the window that is currently vacant (which means I'll get some sleep tonight!), but it hasn't yet been cleaned and the room we are moving out of is packed with people (a doctor and teaching nurse and interpreter who are explaining cancer to the new family of a one year-0ld. I feel for them, but don't want to listen to the "this is what your life will be like for the next _____ months" schpiel again). Matt moved us in last night with Jill (by himself--thank you thank you thank you) into a shared room on an A side (yuk!) and though our neighbors are as nice as they can be, I couldn't pass up the chance to get a little more privacy. We will likely stay in that room until either a) Jill gets a fever, which is expected with every treatment, but which I'm certainly hoping doesn't happen--she would then be in an isolated room, which would mean nobody in and nobody out or b) April 9th rolls around and this whole unit moves to a different wing of the hospital (due to the construction) and then we're still sharing, but the rooms are bigger & more private (with DVD players!), so really....we're set. Depending on who moves in, of course.....but at least Jill is a sound sleeper and I'll just practice wearing earplugs (or an iPod) more often. There are always ways to adapt. We'll work it out. It's almost over. It's almost over.
Thanks to all those who emailed me to say that I have every right to feel crappy and that I shouldn't apologize for complaining. Your words made me feel better. So it DID count for something and I wasn't irritated because you were trying. Okay, so now I have to pee again for the 16th time today (seriously...16...and it's only 4). Just wanted to let everyone know that I haven't done anything too crazy (yet) and that I'm still so happy for all of the support. Here's a few specifics:
Thank you Renee for hosting our Girls Night at your house (the Breakfast at Tiffany's Theme was priceless) and to all the girls who came to share their love and laughter...I needed that. Thank you Jen M. for the sweet care package you left at our door (Jill loves the mini-Cinderella set the mostest!). Thanks Karen for the Easter surprise you left on our porch (it feels like Christmas every day! I'm saving your goodies for a boring day at the hospital when I have them both). Thanks to Jen F. for the table/chairs (they've come in super handy already), the EXCELLENT dinner/lunch/dinner (that was a LOT of food!) and the bag of fun goodies for the girls.....they are still exploring. It was great to see you and Katie! Renee, thanks for making us such a wonderful 3 course meal (again!). The homemade (need I even SAY that....do you buy ANYTHING???) strawberry shortcake (ok, well, I guess you didn't officially "make" the strawberries) was freaking AWESOME. I'm dreaming about it right now......must call Matt and tell him that I noted a component in such shortcake that he is allergic to so he will not eat the rest while I'm here (heh-heh....sly smile....). Dina, thank you for taking Anna today....for meeting us at the curb and for not being at all offended by my quick dump and run (my alarm didn't go off). Thank you to Kristi & Ian for the munchies care package...you didn't have to mail it! Geez! I could've easily picked it up from you....but thank you so much....I'm on my 2nd package of nutter butters right now (and the baby is already thanking me for his/her early onset diabetes).
8 hours later..........
So that room switch really wasn't such a great idea. Our roommate tonight, though very friendly and social....is very friendly and social. And she had her entire senior class (it seemed) in our room tonight for a few hours. As soon as we got to move in (and Jill, unfortunately, woke up from her nap, giving me not a wink), they moved this chick in and it was a party! all! night! Hard Rock blaring from the computer (check out this cool riff!), 16 Candles blaring from the tv (Long Duck Dong! So Funny!!!!), so many bodies I had to (try and) politely ask them to move every single time I needed to get to something on her side (the sink, the cabinets with the washcloths, to door to escape). I lost it in the hallway...just broke down to my night nurse....I can't do this. I'll sleep on the floor in the hallway.....they tried to come up with solutions....we could move you here/there, but you're trading one crappy situation for another. I'm just spent. I'm done. How many times have I said that? I'm done? I can't be done. Who am I kidding? Every single day (and I mean this), I fantasize jumping in my car and just driving......driving.....up to the Redwoods....up the rocky Oregon coast.....ahhhhhhhhh.....fresh air, sunlight, quiet......no one needing a damn thing from me. Oh, yeah, except that baby in my tummy. What could I do about that? Welp, back to square one. Nothing to do but stay here and suffer. Enough with the "think positive" mantra. It ain't flyin'. I KNOW it's almost over. Don't SAY it again! I need help though, I really do. Just as I thought things were dying down over there on the A side (I even asked her to turn off her lights, which she did with slight protest), a relative of hers comes in at midnight (I had gotten, I think, a half hour total of decent sleep at that point)....lights on! speaking voices on! movement on! door open! Granted, she did shush this person, which I appreciated, and when I shuffled back in the room from the hallway port-o-potty (eeeeewwwww) and asked (without crying! look at me!) how long the lights would be on, they graciously said they were sorry and would be going to sleep in a minute, too....I said I was sorry for being bitchy...they kindly informed me it was no problem....am I really this person????? Matt has offered (kind, dutiful soldier) to take over every night. But what would THAT be like? Work/hospital/work/hospital....times 5? And no Anna all week (or rather, from Anna's point of view, no Daddy all week)?????
So here we go....I ask again (and like I say to God about Jill's cancer not coming back, if you do this for me I promise I won't ever ask for anything ever again!!!!!): would you please, if you can, help us? One more time???? We need volunteers to come up here (I've learned that very few of you have any daytime hours available) around or shortly after dinnertime (5/6) and stay the eve/overnight....to be relieved (on weekday mornings) by 8am (earlier if you need). If you can do this, please let me know as soon as possible. Jill is very adaptable....she is doing fine.....may be a little tired/sick from the chemo over the next few days, but after that (knock on wood), I think we'll be free and clear (but stuck in this place with no way out). I'm going crazy people. I seriously am losing my mind. Whatever you can do would be so appreciated.
Thanks to all those who emailed me to say that I have every right to feel crappy and that I shouldn't apologize for complaining. Your words made me feel better. So it DID count for something and I wasn't irritated because you were trying. Okay, so now I have to pee again for the 16th time today (seriously...16...and it's only 4). Just wanted to let everyone know that I haven't done anything too crazy (yet) and that I'm still so happy for all of the support. Here's a few specifics:
Thank you Renee for hosting our Girls Night at your house (the Breakfast at Tiffany's Theme was priceless) and to all the girls who came to share their love and laughter...I needed that. Thank you Jen M. for the sweet care package you left at our door (Jill loves the mini-Cinderella set the mostest!). Thanks Karen for the Easter surprise you left on our porch (it feels like Christmas every day! I'm saving your goodies for a boring day at the hospital when I have them both). Thanks to Jen F. for the table/chairs (they've come in super handy already), the EXCELLENT dinner/lunch/dinner (that was a LOT of food!) and the bag of fun goodies for the girls.....they are still exploring. It was great to see you and Katie! Renee, thanks for making us such a wonderful 3 course meal (again!). The homemade (need I even SAY that....do you buy ANYTHING???) strawberry shortcake (ok, well, I guess you didn't officially "make" the strawberries) was freaking AWESOME. I'm dreaming about it right now......must call Matt and tell him that I noted a component in such shortcake that he is allergic to so he will not eat the rest while I'm here (heh-heh....sly smile....). Dina, thank you for taking Anna today....for meeting us at the curb and for not being at all offended by my quick dump and run (my alarm didn't go off). Thank you to Kristi & Ian for the munchies care package...you didn't have to mail it! Geez! I could've easily picked it up from you....but thank you so much....I'm on my 2nd package of nutter butters right now (and the baby is already thanking me for his/her early onset diabetes).
8 hours later..........
So that room switch really wasn't such a great idea. Our roommate tonight, though very friendly and social....is very friendly and social. And she had her entire senior class (it seemed) in our room tonight for a few hours. As soon as we got to move in (and Jill, unfortunately, woke up from her nap, giving me not a wink), they moved this chick in and it was a party! all! night! Hard Rock blaring from the computer (check out this cool riff!), 16 Candles blaring from the tv (Long Duck Dong! So Funny!!!!), so many bodies I had to (try and) politely ask them to move every single time I needed to get to something on her side (the sink, the cabinets with the washcloths, to door to escape). I lost it in the hallway...just broke down to my night nurse....I can't do this. I'll sleep on the floor in the hallway.....they tried to come up with solutions....we could move you here/there, but you're trading one crappy situation for another. I'm just spent. I'm done. How many times have I said that? I'm done? I can't be done. Who am I kidding? Every single day (and I mean this), I fantasize jumping in my car and just driving......driving.....up to the Redwoods....up the rocky Oregon coast.....ahhhhhhhhh.....fresh air, sunlight, quiet......no one needing a damn thing from me. Oh, yeah, except that baby in my tummy. What could I do about that? Welp, back to square one. Nothing to do but stay here and suffer. Enough with the "think positive" mantra. It ain't flyin'. I KNOW it's almost over. Don't SAY it again! I need help though, I really do. Just as I thought things were dying down over there on the A side (I even asked her to turn off her lights, which she did with slight protest), a relative of hers comes in at midnight (I had gotten, I think, a half hour total of decent sleep at that point)....lights on! speaking voices on! movement on! door open! Granted, she did shush this person, which I appreciated, and when I shuffled back in the room from the hallway port-o-potty (eeeeewwwww) and asked (without crying! look at me!) how long the lights would be on, they graciously said they were sorry and would be going to sleep in a minute, too....I said I was sorry for being bitchy...they kindly informed me it was no problem....am I really this person????? Matt has offered (kind, dutiful soldier) to take over every night. But what would THAT be like? Work/hospital/work/hospital....times 5? And no Anna all week (or rather, from Anna's point of view, no Daddy all week)?????
So here we go....I ask again (and like I say to God about Jill's cancer not coming back, if you do this for me I promise I won't ever ask for anything ever again!!!!!): would you please, if you can, help us? One more time???? We need volunteers to come up here (I've learned that very few of you have any daytime hours available) around or shortly after dinnertime (5/6) and stay the eve/overnight....to be relieved (on weekday mornings) by 8am (earlier if you need). If you can do this, please let me know as soon as possible. Jill is very adaptable....she is doing fine.....may be a little tired/sick from the chemo over the next few days, but after that (knock on wood), I think we'll be free and clear (but stuck in this place with no way out). I'm going crazy people. I seriously am losing my mind. Whatever you can do would be so appreciated.
Tuesday, March 25, 2008
Nothing Nice to Say
My Mom always told me (maybe she heard it from your mom) that if you don't have anything nice to say, don't say anything at all. Well, maybe that is why I haven't written anything in awhile. I haven't been feeling well due to the pregnancy. Physically and emotionally, I'm just extremely tired. I know the end is in sight, but I'm dreading this last month, feeling nauseous all the time and like someone slipped something in my drink (I could fall asleep just about anywhere, anytime). The girls fight...and I mean, knock down-drag out fights....about 80% of the time, and I'm just drained. I've gotten pretty good at completely ignoring their squabbles, but sometimes someone really gets hurt or one of them is REALLY doing something she should NOT be doing and I have to step in...so I feel like I'm correcting/ordering/scolding constantly. I'm not exercising and I'm eating junk because I'm too tired to prepare healthy, so body image is a big ugly thing...and it's only getting worse. I wish I could be excited about having another baby. Right now, I'm just trying to imagine how in God's name I will do this. So anyway, if I haven't returned your calls or called you to chat because you're my friend and that's what friends do....this is why. I'm down. I feel like I've been down this whole second half....I want to be the person from the first half....the person who had hope and who found lessons in every little thing. Ha. That didn't last long did it? Not that I don't have great joyful moments, they're just fewer and further between now. If I don't seem like myself when I see you in person, well, I'm not, and I'm sorry for that. We go back to the hospital on Wednesday night for one more month. It's only a month. But it's a month. 30 days with no privacy, having to dart out to the dirty disgusting hallway bathroom every 5 minutes, cuz that's how much I have to pee and I can't use the bathroom in our room when we're sharing one. 30 days of monotony....Jill flitting from one mundane, repetitive activity to another because SHE'S bored too. Chasing a cooped up little wild woman up and down the halls, fretting that she's gonna pull her line out because lately, she's just erratic in her movements and thinks its funny to push the limits as far as they'll go (don't blame her, but how can I keep up now?). Smelling the familiar and now nauseating smells of that awful food. Dealing with the varied personalities of so many doctors, nurses, parents, kids, and not being able to escape and hide (like I feel I'm doing now from even people I like). Having to keep that smile pasted on my face while I'm in the hallway with Jill and everyone is constantly walking by smiling at her and me and commenting on how "cute/funny/smart" she is....because if I don't, I get that look of concern and "what's wrong? how are you feeling?" 20 times a day. And what do I say to that? "I'm fine"????? "Oh nothing"????? "I'm miserable and want this nightmare to be over"????? Okay. And what does the nice volunteer/staff/parent who's going through the same hell say to that? "Oh honey, I'm sorry. It'll be okay. It's almost over?" No, I really don't want to hear that. Because that I know. It doesn't help. Not that I don't appreciate the concern, but you have no idea what I personally am going through. Easy for you to say. You swap places with me and do it for a week and watch how fast you sink. Ugh.....I'm sorry. I mean well, I just don't know how to be that way right now. Maybe just telling everyone I'm fine and saying positive things will force me to really feel that way. I'll keep trying.
So, was it worth it for me even to write this? Did I teach anyone anything? Did I learn anything myself? Am I better for it? Are you? Nope. But I thought I should explain my absence. And this is reality for me. Don't feel obligated to send me your good wishes.....I know you care and that you would take this from me in a second if you could. Truthfully, I'm embarassed that I'm not handling this (any of this) with a more positive attitude. I wish I could get there in my head. I'm hoping I will soon. If you want to know what you can do (as if you haven't already done enough).....come play with Jill at the hospital. She's on chemo and won't be feeling good Wed-Fri, so anytime after Saturday morning should be great (call first, just in case she's not doing well). If you're well, she would love someone to play princesses with her or read to her or just be interested in whatever she thinks is fun. And if you make a little dinner for your kids that night and have a little extra, she'd love some real food and sometimes I don't get around to making it the night before. Thank you for your continued support....it IS almost over. Sorry for my crappy attitude.
So, was it worth it for me even to write this? Did I teach anyone anything? Did I learn anything myself? Am I better for it? Are you? Nope. But I thought I should explain my absence. And this is reality for me. Don't feel obligated to send me your good wishes.....I know you care and that you would take this from me in a second if you could. Truthfully, I'm embarassed that I'm not handling this (any of this) with a more positive attitude. I wish I could get there in my head. I'm hoping I will soon. If you want to know what you can do (as if you haven't already done enough).....come play with Jill at the hospital. She's on chemo and won't be feeling good Wed-Fri, so anytime after Saturday morning should be great (call first, just in case she's not doing well). If you're well, she would love someone to play princesses with her or read to her or just be interested in whatever she thinks is fun. And if you make a little dinner for your kids that night and have a little extra, she'd love some real food and sometimes I don't get around to making it the night before. Thank you for your continued support....it IS almost over. Sorry for my crappy attitude.
Sunday, March 23, 2008
How Could I NOT Share This?????
This is the latest entry from Mary Rutz' Blog....her son Aaron received a bone marrow transplant from his older brother, Adam, just over 2 weeks ago. An incredible miracle has occurred :)
Saturday, March 22nd
We have moved from darkness into the light…
The attending doctor came in today and told Aaron that he could go home before the end of next week. That’s probably LESS THAN FIVE DAYS FROM NOW! Aaron was SOOO excited he was practically jumping off of his bed. The only thing we have to do is change all of his medicines from IV to oral form. As soon as Aaron can show them that he can take all of his meds and his levels stay stable, he can go home.
What a perfect day to hear this news.
We (Aaron and I) celebrated our own little Easter Vigil. We felt at one with the Church as we asked…
Lord have mercy.
Christ have mercy.
Lord have mercy.
All you holy men and women, pray for us…
Lord be merciful…save your people
From all evil…save your people
From every sin…save your people
From everlasting death…save your people
By your incarnation…save your people
By your death and resurrection…save your people
By your gift of the Spirit…save your people
Have mercy on us sinners…save your people
Christ, hear us. Lord Jesus, hear our prayer.
Lord, give new life to your chosen, Aaron, by the grace of his baptism. Lord Jesus and ever living God, send your Spirit in its fullness on Aaron, who believes and professes you.
Christ, hear us. Lord Jesus, hear our prayer.
We watched the video of Aaron’s baptism. It seems so long ago now. Never, ever did I think that I would be sitting where I am tonight, hearing my son renew his own baptismal promises, the ones that we (Michael and I and Sr. Kathy and Barry) made for him when he was a baby.
And then we sang together (oh, you should have heard him):
“Let the poor man say, ‘I am rich in Him.’
Let the lost man say, ‘I am found in Him.’
Oh, let the river flow.
Let the blind man say, ‘I can see again.’
Let the dead man say, ‘I am born again.’
Oh, let the river flow. Oh, let the river flow.
Let the river flow. Let the river flow.
Holy Spirit come. Move in Power.
Let the river flow. Let the river flow.
Let the river flow. Let the river flow.”
Just before he went to bed he asked me, “Mom, do you think the Easter Bunny will remember me here?” In the morbid humor that he and I share I said, “I don’t think the Easter Bunny would forget a kid who has leukemia.” I caught myself just as I finished.
And he said to me, “But Mom, I don’t have leukemia anymore.”
He is sleeping now, but his Easter basket is out. The eggs are hidden all around the room.
We are ready for the new life found on Easter morning.
Happy Easter, everyone.
Saturday, March 22nd
We have moved from darkness into the light…
The attending doctor came in today and told Aaron that he could go home before the end of next week. That’s probably LESS THAN FIVE DAYS FROM NOW! Aaron was SOOO excited he was practically jumping off of his bed. The only thing we have to do is change all of his medicines from IV to oral form. As soon as Aaron can show them that he can take all of his meds and his levels stay stable, he can go home.
What a perfect day to hear this news.
We (Aaron and I) celebrated our own little Easter Vigil. We felt at one with the Church as we asked…
Lord have mercy.
Christ have mercy.
Lord have mercy.
All you holy men and women, pray for us…
Lord be merciful…save your people
From all evil…save your people
From every sin…save your people
From everlasting death…save your people
By your incarnation…save your people
By your death and resurrection…save your people
By your gift of the Spirit…save your people
Have mercy on us sinners…save your people
Christ, hear us. Lord Jesus, hear our prayer.
Lord, give new life to your chosen, Aaron, by the grace of his baptism. Lord Jesus and ever living God, send your Spirit in its fullness on Aaron, who believes and professes you.
Christ, hear us. Lord Jesus, hear our prayer.
We watched the video of Aaron’s baptism. It seems so long ago now. Never, ever did I think that I would be sitting where I am tonight, hearing my son renew his own baptismal promises, the ones that we (Michael and I and Sr. Kathy and Barry) made for him when he was a baby.
And then we sang together (oh, you should have heard him):
“Let the poor man say, ‘I am rich in Him.’
Let the lost man say, ‘I am found in Him.’
Oh, let the river flow.
Let the blind man say, ‘I can see again.’
Let the dead man say, ‘I am born again.’
Oh, let the river flow. Oh, let the river flow.
Let the river flow. Let the river flow.
Holy Spirit come. Move in Power.
Let the river flow. Let the river flow.
Let the river flow. Let the river flow.”
Just before he went to bed he asked me, “Mom, do you think the Easter Bunny will remember me here?” In the morbid humor that he and I share I said, “I don’t think the Easter Bunny would forget a kid who has leukemia.” I caught myself just as I finished.
And he said to me, “But Mom, I don’t have leukemia anymore.”
He is sleeping now, but his Easter basket is out. The eggs are hidden all around the room.
We are ready for the new life found on Easter morning.
Happy Easter, everyone.
Wednesday, March 19, 2008
Big News
Jill's going to be a BIG SISTER. I went to the doctor today and she confirmed that I am 8 weeks pregnant (due late October). How this happened, I have no idea. Seriously....I've never been one to have trouble conceiving (not complaining about that, by the way, I realize what a blessing that is), but it seems impossible that it happened when it did. And trust me, this was not in OUR plans (guess someone else has bigger ones for us). We can do this. We can do this. (I'm freaking out). Anna is very excited to be getting a minivan just like her best friend, Keili. I am very sad to have to give up my Montero. Hey, "Honest John"......need you to get me a good deal on a Town and Country. Let's talk...oh yeah, do you finance???? Hee hee......
Tuesday, March 18, 2008
Now Entering Our Final Lap
So, I spent a good hour typing up a very detailed (and heartfelt) entry on the 13th.....I don't know what happened, but I lost it, hence why you haven't read something from me in awhile. I was pretty frustrated. To REALLY sum up that entry....Matt & I took the girls to Disneyland last Friday. She had a fabulous time, especially meeting the princesses (Snow White was her favorite...they even have a wishing well & a fountain with statues of her & the dwarfs...you can hear her voice from the waterfall, and echoing in the well, like in the movie...that was a big highlight!). She got a "special invitation" along with her sister to visit with Snow White and Jasmine one on one for about 10 minutes...it was so darling. We got great video. She loved the Teacups and Dumbo (we were able to secure a disability pass as she shouldn't be in the middle of big crowds of people, so we never had to wait more than a few minutes for each ride!) and the parade!! It was such a great day. We've been to a lot of parks.....I've really chilled out with this visit home. I guess last time home it was so hard because it had been and was raining so much...we were worried about mold/fungus in the air, and just kind of stayed holed up at home (which drives me nuts). Anyway, so today she actually dug in the sand and buried her feet and hands over and over, and I wasn't worried. Mainly because her WBC count is over 2000. She usually starts chemo again right around 1100, so she's past due. The doctor wants to admit her to the hospital tomorrow night (Wed). She will have 4 doses of chemo, 12 hours apart, then shots in both thighs with another drug, then she can go home (Friday night through the following Wednesday), assuming she is fever-free and we can control the nausea with liquid meds at home. She will be in hospital for her last big stay from April 2nd through the end of the month. My parents are coming out for a week or so right in the middle, following my sister's wedding, which I'm very bummed about not being able to attend :( But it will be great to have their help, and my Dad hasn't seen Jill since she was diagnosed. So, this entry wasn't nearly as "gripping" as perhaps my deleted one was, but thems the facts. I'm off to enjoy a nap at home with my best little buddies. It has been delightful spending all of this fun, focused time at home with my family.....I just so wish Matt could be here more often. Someone has to afford us this million dollar treatment (literally and figuratively speaking).
Thursday, March 13, 2008
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