Jill was sent home on Sunday. Sorry for not posting this sooner...many have called wondering what is going on. Everything is going fine, except that Matt & I have been doing too much research on what can go wrong between now & the end of treatment and have decided to keep her indoors as much as possible (mainly due to the fear of fungus as Invasive Aspergillosis can easily be contracted from breathing in a spore & they're everywhere, especially after it rains....and can cause awful awful problems & can quickly lead to death...harsh, but true). We've also decided to keep Anna home from school until Jill goes back to the hospital. We don't want her bringing anything home. And we're not gonna do any playdates or anything fun with other kids with her, unfortunately, due to this awesome fear. So........the girls are having a lot of fun together. They've been acting out fairy tales & scenes from their favorite movies (Anna & I were at Claire's the other night & I told her she could pick out one thing...she chose a Highschool Musical necklace with Gabriella on it...I was wondering why she didn't choose Troy, and she said because wearing a Gabriella necklace makes her Gabriella....anyway, she's been giving the necklace to Jill, who is pretending to be Troy, and walking out of the room, then walking back in & telling Jill, "Now say 'I promise forever'" or something like that, and Jill says what Anna says, then Anna says, "Now put the necklace on me" at which point Jill scrunches up her face & looks at me and says, "It's not fair! I want da necklace!" and Anna spends 10 minutes trying to explain that she's just going to take it for a while because it's how the movie goes....and they do this 20 times a day). Yeah, so like I said, THEY'RE having fun. I'm miserable. I want to get out of here! I want to do normal stuff. I want to get stuff done, like groceries, bank, dry cleaners, etc....WITH the kids. That's fun for us! For me. Social interaction with tons of people throughout the day. ARgh. I hate this. But what am I complaining about? We're home. I spent 3 hours organizing hair bows & clips & barrettes today (I told you I would, Aunt Susie!)....putting them in one of those shoe organizers you hang on the back of your door....Dina gave me that idea. It worked out awesome. I'll send pictures later. Oh, and I haven't been cooking because of my Monday & Tuesday night Chefs, Renee & Kate. How these ladies, with 2 & 3 kids respectively & tons of other stuff to do (Kate even works per diem as a nurse, and I can't even begin to tell you all the amazing things Renee does with her time), have time and energy to make complete meals for MY family nearly EVERY WEEK....I'll never know. But it's inspiring. And one more reason NOT to complain.
I just need to say thank you to my Northern CA & St. Louis Crew. I feel terrible for not acknowledging you more in the blog (some of you I haven't even gotten around to thanking personally). My cousins Ryan & Stacey sent gobs of great presents to the girls via my aunt & uncle the day after Christmas. (Stacey, I love the "Elf Help" Books!! Send me your email address!) My friend from gradeschool, Stephanie, organized a toy/book drive for Jill & sent 2 huge boxes of fun stuff to us for Christmas. So amazing. My cousins, Jessie, Mike, Nicole, and John have been raising funds for our family in various ways....JillyBean Jars at their workplaces and a fundraising night at Chevy's Restaurant. My Aunt Deb, who sent Jill two of the cutest hats I've ever seen....Jill wears the flower garden one almost every day. And one relative in particular, who's name I won't mention, gave us a wonderful gift, from his heart. A gift that had been given to him. And that is the best kind of gift. I considered trying to talk him out of it....but remembered Anna having me send her cousin Maddie a birthday present....a present that she had just received for HER birthday, and one she really loved & played with. I tried to talk her into sending something else...told her we could buy something new, and she said, "No, Mom. I want Maddie to have this. Because it's special to me." She did it for Maddie, but she also did it for herself. It made her feel so happy to share something special to her.
Everything you'll ever need to know, you learned at a ripe young age. Or maybe that's backwards. Maybe as adults we learn from the Littles. The basics of love and kindness, taught to me by a girl who just today realized that her name, spelled backwards, is still Anna.
Thursday, January 24, 2008
Saturday, January 19, 2008
Pictures from December/January
I wanted to post at least 20 more photos on here, but it's taking too long for each one to load. If you are interested in viewing an entire album (most of my "loyal readers" are already on the distribution list....shoot me an email & I'll add you....beware, I sent LOTS of photos). Jill didn't come home today....maybe tomorrow......
Nurses Heidi & Janese with Crazy Anna & Jill.
Anna comes to the hospital every Friday and stays all day. This is the girls' morning ritual after breakfast. They get themselves into this position...I provide the pillow :)
Bone Marrow Drive in San Pedro Jan 5th. Loyal friends (and hard workers), from left: Ally, Dina, Shelly (National Donor Program Rep), me, Shana, Matt, Kristin, Jim & Rebecca.
Jill's #1 Fan....Nurse Janel, doing "ballet".
Christmas Day. Costumes c/o Santa (a.k.a. Neighbor "Birdman" Steve)
One of the favorite presents of the morning. International Dolls from Aunt Kami. 5 minutes after this picture was taken, half of them were naked. As I type this, there are NO shoes ANYWHERE, each girl has half an item of clothing left, one has a mohawk, and one has no hair at all (Jill started pulling the hair out of the head of a blonde doll and I tried to stop her...she looked at me very intently and argued, "But I ha no hair." I gladly helped her make that dolly look just like her.)
Nurses Heidi & Janese with Crazy Anna & Jill.
Anna comes to the hospital every Friday and stays all day. This is the girls' morning ritual after breakfast. They get themselves into this position...I provide the pillow :)
Bone Marrow Drive in San Pedro Jan 5th. Loyal friends (and hard workers), from left: Ally, Dina, Shelly (National Donor Program Rep), me, Shana, Matt, Kristin, Jim & Rebecca.
Jill's #1 Fan....Nurse Janel, doing "ballet".
Christmas Day. Costumes c/o Santa (a.k.a. Neighbor "Birdman" Steve)
One of the favorite presents of the morning. International Dolls from Aunt Kami. 5 minutes after this picture was taken, half of them were naked. As I type this, there are NO shoes ANYWHERE, each girl has half an item of clothing left, one has a mohawk, and one has no hair at all (Jill started pulling the hair out of the head of a blonde doll and I tried to stop her...she looked at me very intently and argued, "But I ha no hair." I gladly helped her make that dolly look just like her.)
Thursday, January 17, 2008
In the Face of Fear Sit Me and Little Miss Fearless
Woke up to GREAT news. Jill's ANC is 160. The jump to 500 could be as little as 2 days away...we may be going home Saturday! (It could stay there or go the other way too, but the past 2 rounds have shown a 3 day jump from zero to home). Oh man, the anticipation of this round coming to a close is sooooooooo much greater than that of the first two. Probably being stuck in isolation for 8 days contributed to that. I had some horrific dreams the last night of her isolation. In one dream, I was swimming in a big indoor pool (and I caught my reflection in a bathing suit...yikes...) and someone came along and slammed a big heavy metal cover over the top of the entire pool. There was no space between the water and the cover....I was drowning in pitch blackness. I woke up from that to my nurse telling me it was time to give Jill her 4 am meds, for which I have to sit her up, whisper that I'm about to squirt yuk down her throat....she whispers back "otay" with her eyes glued shut, bravely swallows, winces, and goes back to sleep. I couldn't go back to sleep after this. I felt like I couldn't breathe. I simply couldn't take another minute of this. I was sitting on the bathroom floor crying, trying not to picture my life without my little Jill (I've been having those really scary thoughts ever since October....it's like when someone tells you NOT to look at something, you have to look). I almost called Matt, but didn't want to wake him up & worry him more....so I tried to go back to sleep, and kind of wish now that I hadn't....my next dream was horrible. I was being chased by a carload of suicide bombers....it was a heavy-set, dark-skinned man with thick black hair & a gnarly moustache....his eyes were tired and droopy, but he was focused on the road....he never looked at me. The somber expression on his face never changed. Also in the car were his wife and 2 children. They were in a beat-up white Datsun....it seemed as if they had been poured into the car....it was so small. The tires were very worn, like if he went a little too fast, they would just fall off. Each member of his family was wearing the same expression, a mixture of bored, sad, tired. We were driving on the freeway....Matt and Anna & I. They didn't know it, but I knew, that as soon as we stopped, that man was going to detonate a bomb strapped to his chest & his family & mine were going to be blown to bits. I tried as hard as I could to get my car away from his. I zipped in and out of traffic....even whizzing by 2 police cars, assuming they would pursue me and the man would choose a new target, but they didn't seem to notice, or care that I was going 100 miles an hour. Every time I gunned it, he gunned it....his expression never changed. He never looked at me. I knew if I could get him to look at me, he wouldn't be able to do it. He would see that I was a real person, somebody's mom, somebody's wife, and he would take pity on me. But I knew it was over. It was over.
Those dreams were more to me than just feeling trapped by the isolation of the room. They represent feeling trapped by cancer. Whether it's an appeal to God (who controls who lives and dies) or the Spirit behind the Science (????), I want cancer to look at me. Look at us. At our beautiful family. At our friends. Our families. How much we care. How hard we try. How good we are. How could cancer destroy my family? Doesn't potential matter? Doesn't a promise to change the world mean something.....because Jill will do exactly that (hell, she already is, one person at a time). Which leads me to our beautiful story of the day.......
Throughout the course of the day today, Jill and I have gotten to know 2 families whose little children have VERY recently been diagnosed with leukemia. One is a 2 and 1/2 year old girl who is so incredibly scared. Jill has made fast friends with this little one.....even though the girl has not said a word to Jill yet, and barely looks in her direction.....I can tell that being around Jill has given her a little peace. A little bit of "I'm not the only one having to do all this yucky scary stuff". She watched Jill get her blood pressure taken. We talked to her about how Jill takes her medicine even though it's not so yummy. But most of all, Jill showed her how happy you can be despite being sick. "C'mon friend! What are you waiting for? It's so much fun here!" This sweet baby watched more and more intently throughout the day, my little angel girl dancing around in her butterfly fairy costume and casting good magical spells on unsuspecting friends. Later on this evening, we met another girl, 10 years old, who was diagnosed today. Her mom is so strong...I thought she had been here a long time, or was back for another treatment after being out a while. She has been all smiles and confidence in front of her daughter, but talking to her confirmed her absolute terror. She asked question after question and excitedly ushered Jill into her daughter's room so she could see Jill's broviac site (her central line with the tubes hanging out of her chest) as she will be having a similar procedure done tomorrow. Jill bravely sat in my lap while I talked to this gorgeous innocent child.....distracting herself from the family members surrounding the bed and the jargon and the fear of tomorrow with her laptop. She seemed relieved to know that they would be putting her to sleep for the procedure and that she may get to experience a lot of fun things and people at the hospital....that it wasn't so bad. Not at all.
The point of these stories is to illustrate how much of a difference our Butterfly Fairy is making in the lives of scared little kids just like her. One of her nurses today referred to her as the Ambassador of Sick Children. Earlier in the evening, a little boy was wheeled down the hallway and out the door, in his crib....he was going down for a procedure and he was so scared. Jill had previously been playing with him in the playroom and they would whiz past each other in the hallway on their respective tricycles (Jill, by the way, yesterday learned how to pedal and sort of steer on her own!). As he passed us, Jill kept going, "Oh! Oh!" in a very high-pitched, concerned sort of way....she watched intently as the doors closed behind him, then turned to me and said, very somberly, "I sad for him, Mommy." My bleeding heart.
As this day comes to an end, I am constantly reminded of how lucky we are to have so much time to share with our baby. I have grown to absolutely LOVE and RESPECT her, to be awed by her, to be so amused, so impressed, so stunned and amazed that she is the complete person she is. This child is absolutely phenomenal....not a moment goes by that I am not grateful I get to be her Mom. That I am the one who gets showered with kisses and huge, gooey hugs throughout each and every day. That I am the one who hears "I yuv you so muts" and "You my best fwend" a billion times a day. That I am the first-hand up close witness to the awesome wonder of this little personality. The smile that melts strangers' hearts. I could not possibly love more deeply or feel more blessed than I do every day that is mine and hers. May every one of you, my dear friends and family feel a tiny smidgeon of this great love for your own children, and life itself.
Those dreams were more to me than just feeling trapped by the isolation of the room. They represent feeling trapped by cancer. Whether it's an appeal to God (who controls who lives and dies) or the Spirit behind the Science (????), I want cancer to look at me. Look at us. At our beautiful family. At our friends. Our families. How much we care. How hard we try. How good we are. How could cancer destroy my family? Doesn't potential matter? Doesn't a promise to change the world mean something.....because Jill will do exactly that (hell, she already is, one person at a time). Which leads me to our beautiful story of the day.......
Throughout the course of the day today, Jill and I have gotten to know 2 families whose little children have VERY recently been diagnosed with leukemia. One is a 2 and 1/2 year old girl who is so incredibly scared. Jill has made fast friends with this little one.....even though the girl has not said a word to Jill yet, and barely looks in her direction.....I can tell that being around Jill has given her a little peace. A little bit of "I'm not the only one having to do all this yucky scary stuff". She watched Jill get her blood pressure taken. We talked to her about how Jill takes her medicine even though it's not so yummy. But most of all, Jill showed her how happy you can be despite being sick. "C'mon friend! What are you waiting for? It's so much fun here!" This sweet baby watched more and more intently throughout the day, my little angel girl dancing around in her butterfly fairy costume and casting good magical spells on unsuspecting friends. Later on this evening, we met another girl, 10 years old, who was diagnosed today. Her mom is so strong...I thought she had been here a long time, or was back for another treatment after being out a while. She has been all smiles and confidence in front of her daughter, but talking to her confirmed her absolute terror. She asked question after question and excitedly ushered Jill into her daughter's room so she could see Jill's broviac site (her central line with the tubes hanging out of her chest) as she will be having a similar procedure done tomorrow. Jill bravely sat in my lap while I talked to this gorgeous innocent child.....distracting herself from the family members surrounding the bed and the jargon and the fear of tomorrow with her laptop. She seemed relieved to know that they would be putting her to sleep for the procedure and that she may get to experience a lot of fun things and people at the hospital....that it wasn't so bad. Not at all.
The point of these stories is to illustrate how much of a difference our Butterfly Fairy is making in the lives of scared little kids just like her. One of her nurses today referred to her as the Ambassador of Sick Children. Earlier in the evening, a little boy was wheeled down the hallway and out the door, in his crib....he was going down for a procedure and he was so scared. Jill had previously been playing with him in the playroom and they would whiz past each other in the hallway on their respective tricycles (Jill, by the way, yesterday learned how to pedal and sort of steer on her own!). As he passed us, Jill kept going, "Oh! Oh!" in a very high-pitched, concerned sort of way....she watched intently as the doors closed behind him, then turned to me and said, very somberly, "I sad for him, Mommy." My bleeding heart.
As this day comes to an end, I am constantly reminded of how lucky we are to have so much time to share with our baby. I have grown to absolutely LOVE and RESPECT her, to be awed by her, to be so amused, so impressed, so stunned and amazed that she is the complete person she is. This child is absolutely phenomenal....not a moment goes by that I am not grateful I get to be her Mom. That I am the one who gets showered with kisses and huge, gooey hugs throughout each and every day. That I am the one who hears "I yuv you so muts" and "You my best fwend" a billion times a day. That I am the first-hand up close witness to the awesome wonder of this little personality. The smile that melts strangers' hearts. I could not possibly love more deeply or feel more blessed than I do every day that is mine and hers. May every one of you, my dear friends and family feel a tiny smidgeon of this great love for your own children, and life itself.
Tuesday, January 15, 2008
All is Well and Sweet Sunday Story
Wow, it's getting harder & harder to post these days. I feel this intense obligation though, to let all my worried friends and family know what's going on, so let me start by reassuring you all that she's fine. She tested negative for C-Diff today (after about 8 days of antibiotic), which means she may be able to break out of isolation over the next few days, but we are kind of hoping to just duck down and stay right here in our decorated, toddler toy-filled private room as we may be going home in as little as 8 days (just a prediction). Her attitude is as great as ever. She has the language skills of a 3 and 1/2 year old, easily (the articulation still needs some work, which is frustrating sometimes for her...."No mom, I said, 'Yesterday when RoseMarie came in, she gave me a stepping stone kit'."). She serenades anyone who will listen with "You are my sunshine" or "Moon, moon, moon". She laughs, dances, plays chase around the obstacles we set up in the room, balances on the beam, bounces on the trampoline (brought by the PT a few days a week), climbs the "apparatus" (jungle-gym style contraption made out of PVC pipes/connectors lent to us by her "Grandma Rose"), does somersaults (by HERSELF), and begs to be tickled/wrestled with (I need to watch this....she got an awful couple of bruises from doing this on low platelets the other night). We play flashlight games in the dark, lay in the tent propped up on pillows reading funny stories, unwrap and cut up straws and stick 'em in playdoh, do puzzles, watch movies, and read read read. Lately her favorite game is to give me big loud smacky kisses all over my face....each one gets a "Smack-a-Roni!" or a "Smack-a-Doodle!" or other variation and she giggles like all get out. She's every nurses dream patient, and a parent's dream baby. She had a wonderful 2nd birthday here at the hospital. Cici (the M-Th nurses' aide who makes our lives soooooooo much easier and whom Jillian sees as her total equal), drove up to the hospital from Lynnwood with her family to see Jill, who was sleeping (darnit!)....she made authentic yummy food from her native home, El Salvador (she brought a plate in for me today as I missed the feast, having to take Anna home after we opened presents---she needed a nap), and MAN, did it make me want to move to El Salvador. Anyway, my Aunt Susie & Cousin Linda were in town for the big day. They helped Anna make 4 dozen cupcakes (so cutely decorated), 3 dozen of which we gave to the nurses/other patients...and 5 of which Jillian iced herself Sunday & Monday to give to favorite staff who weren't here on Saturday (she gave the most sprinkles to John, the custodian who comes around every night at 11pm and makes all over Jill.....he's the coolest). The Child Life Team really did it up for her, making a brilliant birthday Wizard of Oz themed sign (from which Jill could not pull herself away to open presents...seriously...."No I don't want pesents, I want to yut at Dorsee.") and showering her with gifts, (she just now, today, finally opened the last one....whew!). It was better than we could've ever expected, and so appreciated.
Earlier in the day on that Saturday, I went to the Blood Drive that was organized by our 17 year old babysitter, Kristin. It was once again, absolutely thrilling to be around so many fabulously caring people. Among the attendees that I was able to talk to in the hour and a half I was there were, a 19 year old guy Anna & I met at Vons the night before (he blew up Jill's balloons) who had a good friend in H.S. pass away from cancer. He walked up to the drive and called me on Monday to tell me he had researched how he could donate platelets to other hospitals he could easily get to (in lieu of being able to donate directly to her).......a breast cancer survivor who showed up early to decorate San Pedro with flyers (after seeing our story on the news on Friday) and excitedly informed me that her husband, who works down on the docks, is interested in hosting a Bone Marrow Drive.....many friends and friends of friends, and complete strangers......so many stories, so much love. Kristin called me later in the day to report that they had over 150 blood donors that day (which is HUGE) and 30 bone marrow donors! The staff who ran the drive were all so dynamic and enthusiastic and compassionate. I didn't realize that if we set up blood drives directly through Miller Children's Hospital, they coordinate with the National Bone Marrow Registry to bring in bone marrow donors and the registration fees are completely waived......I am, in a big way, glad that we didn't know this though, because of all of the good that has come of the many fundraisers that have been held to raise $$ for those fees (and the awareness that has been risen because of them).....but looking forward, we are getting smarter about how to meet this need. And we'll do it again! And again. And again. We are all in this together now. What a life-saving journey we've begun.......my friends, my friends.......wow.
It was so wonderful to have my family out this past week. I got to catch up with my cousin, whom I haven't really ever known (we are far apart in age, and she moved away when I was in highschool), and got to know my aunt on a level I never would've known her otherwise. And boy, did she work her magic at my house! I am the clutter queen no longer! Every room in my house has been transformed....it's amazing how I was under-utilizing space! I haven't been home to see the final results of her labor (I've been here at the hospital since Sunday night), but have heard from Matt that I should get prepared. She even hung up PICTURES! A task I've been putting off since we moved in 2 and 1/2 years ago!
So, I'm skipping a bunch of stuff, but I do have to tell one story. Remember my blog entry about Anna wanting to go to church (I ended it with "Maybe Anna can help us all to Go Tell it On the Mountain")? Well, since then, I've gotten her involved in the Sunday school at Holy Trinity Parish (which I am in total love with!!). She loves the teacher & other students & seems to fit right in. She let me leave her by herself this last Sunday (her 2nd time, and my first to attend Mass, in oh, some 8 years....give or take a Christmas service with my parents). Susie came with me. The homily was all about Baptism, which I found to be really sweet, as I have been giving serious thought to having the girls baptized soon. Msgr. Joe was so charasmatic and funny. He joyfully and boisterously sang right along to every song throughout the service, clapping and dancing in his chair (the choir was so beautiful). He called the hospital the week before to speak with me about a visit to my house, but said he'd be out of town for 3 weeks, so I was so happy to be at the last Mass he was to give before leaving town (I didn't know this...he told me after Mass that he was leaving that evening). Anyway, so I was moved....so moved.....just hearing all of the prayers, remembering them, smelling the smells, feeling at one with my people, my family of Catholics who I have been hiding from....there were so many of them!....I was so surprised at the diversity, I don't know why....yes, I do....because I'm from the MidWest and our parish was 90% Caucasian, so I guess I saw it as the White Man's Church....what an idiot....the "peace be with you's", the smiles, the being there with my aunt, the sheer comfort....it was just so relieving. I held back tears the entire time. I listened really closely to every word.....unlike how I remember Mass.....trying to stay awake, tuning out, not feeling connected to this prayer I spent hours memorizing in the 3rd grade.....and it made me feel happy to be Catholic. It made sense. I started feeling excited at the idea that Matt may be willing to do RCIA (classes for people who would like to become Catholic) with me as his "sponsor" so that I can learn more about this religion I was raised in......maybe that can be our date night and we can grow closer to each other through God and our faith-community....oooh, the possibilities! Back to reality.....at the end of the service, the cantor announced, "Please open your Song Book to Page 232" and the music started............................................................................
"Go, Tell it on the Mountain.....over the hills and everywhere......"
Shut. Up.
Susie and I just looked at each other and started cracking up. No way. This is too big of a sign. Ya know? Boy did we move and grove to that hymn. People probably thought we were crazy Baptists in the wrong damn church. We were shakin' our booties and clappin' our hands, belting out that tune like it had never been sung. That's it. I'm Catholic.
When we picked Anna up from Sunday school, I told her about that song. She asked me how it went. I sang the starting line....she stopped me. "I know Mommy. Stop. 'Go tell it on the mountain, all the livelong day.....go tell it on the mountain, just to pass the time away" Which are lyrics from "I've Been Working on the Railroad". My Grandpa Hunn (Susie's Daddy) was a train fanatic. We decided without a second guess that Anna's lyrics were Grandpa giving us kisses from Heaven. You might think it's a stretch, but Grandma knows.
Don't you Grandma?
Earlier in the day on that Saturday, I went to the Blood Drive that was organized by our 17 year old babysitter, Kristin. It was once again, absolutely thrilling to be around so many fabulously caring people. Among the attendees that I was able to talk to in the hour and a half I was there were, a 19 year old guy Anna & I met at Vons the night before (he blew up Jill's balloons) who had a good friend in H.S. pass away from cancer. He walked up to the drive and called me on Monday to tell me he had researched how he could donate platelets to other hospitals he could easily get to (in lieu of being able to donate directly to her).......a breast cancer survivor who showed up early to decorate San Pedro with flyers (after seeing our story on the news on Friday) and excitedly informed me that her husband, who works down on the docks, is interested in hosting a Bone Marrow Drive.....many friends and friends of friends, and complete strangers......so many stories, so much love. Kristin called me later in the day to report that they had over 150 blood donors that day (which is HUGE) and 30 bone marrow donors! The staff who ran the drive were all so dynamic and enthusiastic and compassionate. I didn't realize that if we set up blood drives directly through Miller Children's Hospital, they coordinate with the National Bone Marrow Registry to bring in bone marrow donors and the registration fees are completely waived......I am, in a big way, glad that we didn't know this though, because of all of the good that has come of the many fundraisers that have been held to raise $$ for those fees (and the awareness that has been risen because of them).....but looking forward, we are getting smarter about how to meet this need. And we'll do it again! And again. And again. We are all in this together now. What a life-saving journey we've begun.......my friends, my friends.......wow.
It was so wonderful to have my family out this past week. I got to catch up with my cousin, whom I haven't really ever known (we are far apart in age, and she moved away when I was in highschool), and got to know my aunt on a level I never would've known her otherwise. And boy, did she work her magic at my house! I am the clutter queen no longer! Every room in my house has been transformed....it's amazing how I was under-utilizing space! I haven't been home to see the final results of her labor (I've been here at the hospital since Sunday night), but have heard from Matt that I should get prepared. She even hung up PICTURES! A task I've been putting off since we moved in 2 and 1/2 years ago!
So, I'm skipping a bunch of stuff, but I do have to tell one story. Remember my blog entry about Anna wanting to go to church (I ended it with "Maybe Anna can help us all to Go Tell it On the Mountain")? Well, since then, I've gotten her involved in the Sunday school at Holy Trinity Parish (which I am in total love with!!). She loves the teacher & other students & seems to fit right in. She let me leave her by herself this last Sunday (her 2nd time, and my first to attend Mass, in oh, some 8 years....give or take a Christmas service with my parents). Susie came with me. The homily was all about Baptism, which I found to be really sweet, as I have been giving serious thought to having the girls baptized soon. Msgr. Joe was so charasmatic and funny. He joyfully and boisterously sang right along to every song throughout the service, clapping and dancing in his chair (the choir was so beautiful). He called the hospital the week before to speak with me about a visit to my house, but said he'd be out of town for 3 weeks, so I was so happy to be at the last Mass he was to give before leaving town (I didn't know this...he told me after Mass that he was leaving that evening). Anyway, so I was moved....so moved.....just hearing all of the prayers, remembering them, smelling the smells, feeling at one with my people, my family of Catholics who I have been hiding from....there were so many of them!....I was so surprised at the diversity, I don't know why....yes, I do....because I'm from the MidWest and our parish was 90% Caucasian, so I guess I saw it as the White Man's Church....what an idiot....the "peace be with you's", the smiles, the being there with my aunt, the sheer comfort....it was just so relieving. I held back tears the entire time. I listened really closely to every word.....unlike how I remember Mass.....trying to stay awake, tuning out, not feeling connected to this prayer I spent hours memorizing in the 3rd grade.....and it made me feel happy to be Catholic. It made sense. I started feeling excited at the idea that Matt may be willing to do RCIA (classes for people who would like to become Catholic) with me as his "sponsor" so that I can learn more about this religion I was raised in......maybe that can be our date night and we can grow closer to each other through God and our faith-community....oooh, the possibilities! Back to reality.....at the end of the service, the cantor announced, "Please open your Song Book to Page 232" and the music started............................................................................
"Go, Tell it on the Mountain.....over the hills and everywhere......"
Shut. Up.
Susie and I just looked at each other and started cracking up. No way. This is too big of a sign. Ya know? Boy did we move and grove to that hymn. People probably thought we were crazy Baptists in the wrong damn church. We were shakin' our booties and clappin' our hands, belting out that tune like it had never been sung. That's it. I'm Catholic.
When we picked Anna up from Sunday school, I told her about that song. She asked me how it went. I sang the starting line....she stopped me. "I know Mommy. Stop. 'Go tell it on the mountain, all the livelong day.....go tell it on the mountain, just to pass the time away" Which are lyrics from "I've Been Working on the Railroad". My Grandpa Hunn (Susie's Daddy) was a train fanatic. We decided without a second guess that Anna's lyrics were Grandpa giving us kisses from Heaven. You might think it's a stretch, but Grandma knows.
Don't you Grandma?
Tuesday, January 8, 2008
The Heavy
As I type this, I am wracked with emotion...how many are there?
Exhausted....a deep, underground, boiling up to the surface kind of bone-a** tired. I attribute it at the moment to the "workers" pouring cement right outside our window (this started at 5:15 am). A bellowing people-slaying dragon-like noise. Hurts my brain. Many things hurt my brain these days. Fluorescent lights. IV beeps. The sweet sound of the babbling brook on Jill's "sleepy machine", which I have, of late, had to turn up so loud it sounds like a raging river (and freaks nurses new to us out every time they enter the room "Oh my god...I thought your oxygen was turned up extra high!"). Perfumes. Cologne. I would love to know why people bathe in scent on top of scent on top of scent. We all have our own natural wonderful distinctive smell....why mask it with flowers or musk or whatever-the-hell-other manufactured chemical is popular these days? I apologize for the rant but I try not to tread on others' space while out in the world and I feel like my space is slammed against a wall when I'm working out at the gym and some lady gets on the machine next to me smelling like the toxic rip away leaflet from Cosmo magazine....cough, cough....guess I'll be moving now.....
Relieved. Jill's appetite is back! She ate like a teenage boy on steroids today. She has gobs and gobs of energy (much thanks to the unnamed donor whose blood infused Jill with a renewed sense of purpose on Monday....maybe that's what I need....a bag of blood should wake me right up....can you overdose on that sort of thing?). She spent the day zooming up & down the hallway, learned how to (almost) pedal a tricycle, did some chalk art with Monica (the artist volunteer who comes on Mondays), dressed-up, made some pineapple-meatball-pizza concoction in her toy kitchen, got her nails done by CiCi (nurses' aide and best friend), played soccer, basketball, and climbed 4 flights of stairs twice with the P.T. (she qualified for 2x/wk with the goal of maintaining gross-motor skills).
Angry (morfs into Frustrated, morfs into Accepting....begrudgingly accepting). Jill's doctor came to break the news this evening that Jill's stool sample came back positive for C-Dif, a nasty infection of the colon caused by too many antibiotics (the antibiotics kill bad & good bacteria....the good bacteria that normally fights off this infection when you have a normal WBC count and are NOT on gobs of AB's has been compromised, opening her up to this...many kids in her situation get it....not life-threatening, just extremely annoying). She will be forced to swallow yet another antibiotic (this one will directly target the C-Dif) every 6 hours (it's no fun being wrenched out of a peaceful sleep to have your mom squirt that nasty junk down your throat..."It's okay baby, you can go back to sleep..." Oh, okay, mom....I'll be doing that with no problem...and no hard feelings...hmmmph). After 10 days on this drug, her stool will again be tested. She needs 3 negative tests in a row to be "cleared" to come out of isolation. Isolation means she is confined to her own room. She is no longer allowed to leave to play in the playroom or in the hallway. We are no longer allowed to leave to go to the kitchen, the soda machine, the cafeteria, as we are at risk of spreading Jill's infection to other immuno-compromised individuals throughout the hospital (it is apparently extremely contagious to those who are not able to fight it). Nurses and anyone intending to enter our room and do anything but march straight back out the double doors (after some vigorous hand-washing), must "gown and glove" on entering. Really, it's a poop thing, and as Matt & I--and nurses on night shift--are the only ones changing her diaper, and we are very careful not to get it on our hands anyway--wouldn't YOU be?--and are vigorous hand-washers, and you have plenty of WBC's, there is very little risk to you, our friendly visitor, of catching the bug, so don't read this as a "stay away" notice---much to the contrary---help me entertain this toddler please!!!! is more what I'm trying to say. Leave the kids at home---I hate that, but it's just safer for everyone, all around. Man, she's gonna need a lot of group hugs from her toddler peers when this is all said and done.
And Sad. So Very Sad. We just found out today that one of our own (child with AML) passed away. She was being discharged from the hospital, at the end of her 6 months of chemo, the day we were being admitted. I met her mom through a friend. She was so excited to be going home that day, but sad for us....and very obviously supportive and willing to be of any assistance she could...where to get good food, how to sleep more comfortably in our new "home". We were devastated to be sharing a room with her daughter 2 weeks later, when she came back with a tumor. The cancer had returned and manifested itself as this ugly unforgiving monster, taking over this sweet girl's entire body....one thing after another went wrong....she passed away on Thursday after the longest fight of her family's life. She was 17. I want so much to attend her funeral. It's on Saturday. I can't do it. Saturday is Jill's Birthday. To be attending the funeral of someone that shared the same awful disease as my baby on what could be (don't say that!) her last birthday (how terrible is it to THINK that???), would just absolutely kill me. I can't imagine what her family is going through right now, and hope against hope I never have to. The reality of this disease is horrific. Keeping myself distracted with bone marrow drives, close contact with friends, keeping Anna involved in school/friends/activities, cleaning my house, scribbling thank-yous and booking interviews with local media (a reporter from CBS is coming to the hospital on Friday to interview us for a news story to promote the blood drive our babysitter put together)....all of these things are simply ways for me to push the reality of what could happen to my baby into the background. But today, I gazed at her so much, with pangs of deep sorrow in my heart for the friend whom cancer took. I saw Jilli disappear....fade into her songs and her dances....evaporate into a memory of a girl with ceaseless energy and unbreakable spirit. I don't want her to be a lovely memory. I don't want to be thinking like this. I will start my moment-to-moment mantra again. Because what other choice is there? Jill needs us to believe.
So I do. Not as firmly as I did yesterday. But I do.
The strength of that collective belief in all of us, in her, will give the status of "memory" to this tiny schnibble of time that made believers of us all.
Exhausted....a deep, underground, boiling up to the surface kind of bone-a** tired. I attribute it at the moment to the "workers" pouring cement right outside our window (this started at 5:15 am). A bellowing people-slaying dragon-like noise. Hurts my brain. Many things hurt my brain these days. Fluorescent lights. IV beeps. The sweet sound of the babbling brook on Jill's "sleepy machine", which I have, of late, had to turn up so loud it sounds like a raging river (and freaks nurses new to us out every time they enter the room "Oh my god...I thought your oxygen was turned up extra high!"). Perfumes. Cologne. I would love to know why people bathe in scent on top of scent on top of scent. We all have our own natural wonderful distinctive smell....why mask it with flowers or musk or whatever-the-hell-other manufactured chemical is popular these days? I apologize for the rant but I try not to tread on others' space while out in the world and I feel like my space is slammed against a wall when I'm working out at the gym and some lady gets on the machine next to me smelling like the toxic rip away leaflet from Cosmo magazine....cough, cough....guess I'll be moving now.....
Relieved. Jill's appetite is back! She ate like a teenage boy on steroids today. She has gobs and gobs of energy (much thanks to the unnamed donor whose blood infused Jill with a renewed sense of purpose on Monday....maybe that's what I need....a bag of blood should wake me right up....can you overdose on that sort of thing?). She spent the day zooming up & down the hallway, learned how to (almost) pedal a tricycle, did some chalk art with Monica (the artist volunteer who comes on Mondays), dressed-up, made some pineapple-meatball-pizza concoction in her toy kitchen, got her nails done by CiCi (nurses' aide and best friend), played soccer, basketball, and climbed 4 flights of stairs twice with the P.T. (she qualified for 2x/wk with the goal of maintaining gross-motor skills).
Angry (morfs into Frustrated, morfs into Accepting....begrudgingly accepting). Jill's doctor came to break the news this evening that Jill's stool sample came back positive for C-Dif, a nasty infection of the colon caused by too many antibiotics (the antibiotics kill bad & good bacteria....the good bacteria that normally fights off this infection when you have a normal WBC count and are NOT on gobs of AB's has been compromised, opening her up to this...many kids in her situation get it....not life-threatening, just extremely annoying). She will be forced to swallow yet another antibiotic (this one will directly target the C-Dif) every 6 hours (it's no fun being wrenched out of a peaceful sleep to have your mom squirt that nasty junk down your throat..."It's okay baby, you can go back to sleep..." Oh, okay, mom....I'll be doing that with no problem...and no hard feelings...hmmmph). After 10 days on this drug, her stool will again be tested. She needs 3 negative tests in a row to be "cleared" to come out of isolation. Isolation means she is confined to her own room. She is no longer allowed to leave to play in the playroom or in the hallway. We are no longer allowed to leave to go to the kitchen, the soda machine, the cafeteria, as we are at risk of spreading Jill's infection to other immuno-compromised individuals throughout the hospital (it is apparently extremely contagious to those who are not able to fight it). Nurses and anyone intending to enter our room and do anything but march straight back out the double doors (after some vigorous hand-washing), must "gown and glove" on entering. Really, it's a poop thing, and as Matt & I--and nurses on night shift--are the only ones changing her diaper, and we are very careful not to get it on our hands anyway--wouldn't YOU be?--and are vigorous hand-washers, and you have plenty of WBC's, there is very little risk to you, our friendly visitor, of catching the bug, so don't read this as a "stay away" notice---much to the contrary---help me entertain this toddler please!!!! is more what I'm trying to say. Leave the kids at home---I hate that, but it's just safer for everyone, all around. Man, she's gonna need a lot of group hugs from her toddler peers when this is all said and done.
And Sad. So Very Sad. We just found out today that one of our own (child with AML) passed away. She was being discharged from the hospital, at the end of her 6 months of chemo, the day we were being admitted. I met her mom through a friend. She was so excited to be going home that day, but sad for us....and very obviously supportive and willing to be of any assistance she could...where to get good food, how to sleep more comfortably in our new "home". We were devastated to be sharing a room with her daughter 2 weeks later, when she came back with a tumor. The cancer had returned and manifested itself as this ugly unforgiving monster, taking over this sweet girl's entire body....one thing after another went wrong....she passed away on Thursday after the longest fight of her family's life. She was 17. I want so much to attend her funeral. It's on Saturday. I can't do it. Saturday is Jill's Birthday. To be attending the funeral of someone that shared the same awful disease as my baby on what could be (don't say that!) her last birthday (how terrible is it to THINK that???), would just absolutely kill me. I can't imagine what her family is going through right now, and hope against hope I never have to. The reality of this disease is horrific. Keeping myself distracted with bone marrow drives, close contact with friends, keeping Anna involved in school/friends/activities, cleaning my house, scribbling thank-yous and booking interviews with local media (a reporter from CBS is coming to the hospital on Friday to interview us for a news story to promote the blood drive our babysitter put together)....all of these things are simply ways for me to push the reality of what could happen to my baby into the background. But today, I gazed at her so much, with pangs of deep sorrow in my heart for the friend whom cancer took. I saw Jilli disappear....fade into her songs and her dances....evaporate into a memory of a girl with ceaseless energy and unbreakable spirit. I don't want her to be a lovely memory. I don't want to be thinking like this. I will start my moment-to-moment mantra again. Because what other choice is there? Jill needs us to believe.
So I do. Not as firmly as I did yesterday. But I do.
The strength of that collective belief in all of us, in her, will give the status of "memory" to this tiny schnibble of time that made believers of us all.
Friday, January 4, 2008
Slight Change of Plans
So, after much discussion, and some disagreement, Matt & I have come to the conclusion that having people stay with us (as much help as they have provided & are willing to provide) is more stressful than it is worth. This is certainly not to say that anyone who HAS stayed with us has been a burden or that we have not benefited from the help provided. The main issue is sickness. We are very concerned that, as Jill progresses through chemo, she is weaker & more susceptible to illness.....if people stay with us (in our little bitty condo), especially more than one person at a time, it increases the chances that someone in our house will get sick & pass it around. As Matt & I have no choice but to be at the hospital with Jill, we will then pass it on to her. The other issue is consistency for Anna. Although it is exciting for Anna to always have new people coming into town to play with, it throws her off. She has so many of our friends caring for her when we are not able to, but the routine remains fairly consistent. When visitors come in, we feel like we should let her take a day off school to go to Disneyland or the park, or the visitor will pick her up from school. When we have to go back to the "regular schedule", she is upset.
We are very much looking forward to the visitors we have lined up already (Susie, Linda, Annie, Missy, Renee & Rhiannon), and don't want any of you to feel like you shouldn't come or that you have to walk on eggshells for fear of upsetting the balance while you're here. A few "rules" that many of you know about already are that 1)if you come in on an airplane, you can't come to the hospital for the first 3 days, 2)if you catch a cold or other virus (especially if you're coughing/ sneezing) you'll have to stay with one of our friends or, if you are not comfortable with that, in a hotel, and you certainly won't be able to go the hospital, 3)we probably won't be seeing much of you if you are sick, which really stinks, because you came to help & visit with us, 4)while at our house, we're sticklers on not wearing shoes in the house & on frequent hand-washing.....parents must keep a close eye on their kids for gross kid-like behaviors that may spread germs. Still wanna come? Ha ha.....
We are fully aware that people have only come to help & are only coming because we (I) expressed a need. I feel the need is there to help run the house (menial chores) so that we can spend quality time with Anna & maybe even relax a bit. We have loved seeing those that have visited so much....we've stayed up late talking with them (when we should really be catching up on sleep)....again, not the visitors' fault by any means! But it is so hard to turn off that "let's have a good time" button, and right now, we need to. We apologize for not knowing sooner how this was all going to work. You don't know how you'll feel until you are thrust into this.
For those who have expressed interest in coming out to help, please save your trip to when this is all over (maybe summer?) when we can enjoy each other more & you can feel like you really got your money's worth. We are slowly figuring out how to do this on our own. Thanks for understanding!
We are very much looking forward to the visitors we have lined up already (Susie, Linda, Annie, Missy, Renee & Rhiannon), and don't want any of you to feel like you shouldn't come or that you have to walk on eggshells for fear of upsetting the balance while you're here. A few "rules" that many of you know about already are that 1)if you come in on an airplane, you can't come to the hospital for the first 3 days, 2)if you catch a cold or other virus (especially if you're coughing/ sneezing) you'll have to stay with one of our friends or, if you are not comfortable with that, in a hotel, and you certainly won't be able to go the hospital, 3)we probably won't be seeing much of you if you are sick, which really stinks, because you came to help & visit with us, 4)while at our house, we're sticklers on not wearing shoes in the house & on frequent hand-washing.....parents must keep a close eye on their kids for gross kid-like behaviors that may spread germs. Still wanna come? Ha ha.....
We are fully aware that people have only come to help & are only coming because we (I) expressed a need. I feel the need is there to help run the house (menial chores) so that we can spend quality time with Anna & maybe even relax a bit. We have loved seeing those that have visited so much....we've stayed up late talking with them (when we should really be catching up on sleep)....again, not the visitors' fault by any means! But it is so hard to turn off that "let's have a good time" button, and right now, we need to. We apologize for not knowing sooner how this was all going to work. You don't know how you'll feel until you are thrust into this.
For those who have expressed interest in coming out to help, please save your trip to when this is all over (maybe summer?) when we can enjoy each other more & you can feel like you really got your money's worth. We are slowly figuring out how to do this on our own. Thanks for understanding!
God Bless the Child.....
God is Great.
God is Good.
God will help you if you have a broken heart.
God is fun.
God is quick.
God will fix you if you're sick.
(If the doctors don't know how to fix you).
--Annaliese Litton, 4 yrs old....in the backseat on the way to the hospital
Anna has been talking a lot lately about God & how he cares about her & her "sick sister". She makes up songs about God & asks Matt & I to make them up, too. Last night, Matt said, "You sure do know a lot about God," to which Anna replied, "That's cuz I have the Bible."
I'll be taking Anna to a local Catholic Church on Sunday to see if she likes it. We're not searching for anything, but we think she is. Matt says all the time that Anna's chosen to be a Christian already (nothing wrong with that). I feel the need to give Catholicism another try. To give Anna an opportunity to be raised with a faith-base. It's almost not fair to raise her without one. How can she make a decision to turn away from or deny something she has never been exposed to? And it certainly can't hurt. The community of church-goers is the big draw for me. Getting involved, helping people....fellowship. And the Catholic faith is part of who I am, like it or not. It's my culture, my people. I've tried other churches, and I just feel out-of-place. Like I'm saying their prayers & reading their books. I walk into a Catholic Church, and though I don't necessarily feel drawn to God, I do feel at peace. There are things about being there that make me uneasy & uncomfortable too......kind of like when you go back to visit the home you grow up in....there's all of these familiar comforts, yet a whole bunch of crappy memories too. At least the people change (when I go to my "home church" in St. Charles, it's really weird....when people knew you as an awkward pre-teen who was constantly causing trouble, it's hard to look them in the eye & try & convince them you were never that person....I'd rather not have a past plastered on my forehead). So, we'll give it a go. I'm sure my Grandma will be ecstatic to hear this. Don't hold your breath, Grandma. I can't make any promises.
Maybe Anna can help us all to Go Tell it On the Mountain.
God is Good.
God will help you if you have a broken heart.
God is fun.
God is quick.
God will fix you if you're sick.
(If the doctors don't know how to fix you).
--Annaliese Litton, 4 yrs old....in the backseat on the way to the hospital
Anna has been talking a lot lately about God & how he cares about her & her "sick sister". She makes up songs about God & asks Matt & I to make them up, too. Last night, Matt said, "You sure do know a lot about God," to which Anna replied, "That's cuz I have the Bible."
I'll be taking Anna to a local Catholic Church on Sunday to see if she likes it. We're not searching for anything, but we think she is. Matt says all the time that Anna's chosen to be a Christian already (nothing wrong with that). I feel the need to give Catholicism another try. To give Anna an opportunity to be raised with a faith-base. It's almost not fair to raise her without one. How can she make a decision to turn away from or deny something she has never been exposed to? And it certainly can't hurt. The community of church-goers is the big draw for me. Getting involved, helping people....fellowship. And the Catholic faith is part of who I am, like it or not. It's my culture, my people. I've tried other churches, and I just feel out-of-place. Like I'm saying their prayers & reading their books. I walk into a Catholic Church, and though I don't necessarily feel drawn to God, I do feel at peace. There are things about being there that make me uneasy & uncomfortable too......kind of like when you go back to visit the home you grow up in....there's all of these familiar comforts, yet a whole bunch of crappy memories too. At least the people change (when I go to my "home church" in St. Charles, it's really weird....when people knew you as an awkward pre-teen who was constantly causing trouble, it's hard to look them in the eye & try & convince them you were never that person....I'd rather not have a past plastered on my forehead). So, we'll give it a go. I'm sure my Grandma will be ecstatic to hear this. Don't hold your breath, Grandma. I can't make any promises.
Maybe Anna can help us all to Go Tell it On the Mountain.
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