Monday, April 28, 2008

And then, we woke up.......

Mom to Jillian : "Do you have poop in your diaper?"
Jillian: " 'I don't think so', said Prince Eric."

She is now narrating her own story, speaking in 3rd person...AS herself. Anna says, "Jillian! Put that down! It's not yours!" Jillian replies, very matter-of-factly, " 'You were not playing with it so I can have it if I want to', says Ari-la (Ariel).' "

Did I mention we're home??? I know I haven' many have emailed or called lately, "I thought you might be home, but I haven't heard.....I'm assuming your home....are you home?" I apologize for not putting this, the biggest news of the past 7 months, out there, but in all the excitement (and the miserable heat of our first weekend back...maybe we should've stuck it out in the nice, air-conditioned hospital for 2 more days!), I have not gotten around to this.

Jill's last day at Miller's was Friday. The nurses and Child Life people on staff that day were all so loving and sweet and wonderful to us....they sang Jillian a cute little song "Hi Ho! Hi Ho! It's off to home she goes!" written by Rose Marie, and presented her with many terrific presents. One of Jill's favorite night nurses dropped off a fun care package, complete with funky sparkly camoflauge bathing suit "I tan do simming at the YMCA!!!!" It was a very happy (and kind of sad) day. Matt, especially after being there for 3 weeks straight, was almost hesitant to leave. He said he felt "institutionalized" and has said a number of times since we've been home, how much he misses the nurses.

So, I feel like I should say something profound, but this doesn't seem real yet. She went home on NO medications (after spending 7 months on 3 daily antibiotics). The only thing we have to do for her medically is to flush her central line with heparin once a day, cover it with plastic when giving her a bath, and to change the dressing covering the line and the caps once a week. It's like, she's nearly a normal kid! We have our first clinic appt on Wednesday, where she will get labs drawn (a lot of blood, to check for leukemia cells, red blood cells, and platelets...she could still need an infusion or two over the next few weeks) and the last bone marrow biopsy and lumbar puncture will be scheduled (outpatient) to make sure the leukemia cells are staying away. As soon as that is completed, we can schedule the outpatient surgery to remove the line. And THEN, I think, this will all seem real. The site will take 3-4 weeks to completely heal, so it looks like I have 2 more months to get bathing suit ready (HA!!!! Wait! Did I say, "HA!"???) At least she's as cute as she is....ain't no one gonna notice my big butt. Whatever. Perspective. That's what I've gained. Perspective. So little of what I really thought mattered before, really does. It's GREAT!

So, yeah, she's been walking around talking like this: "Oh no! Where's my water?? said Belle!" Seriously. It's a little scary (scripting? No.......she's way too social for me to worried about THAT). But I'll leave you with one other funny little story. As we were driving home from the hospital, I looked over my shoulder at her and said, "What do you see out your window?" She looked out the corner of her eye at me and smirked, "Don't tell me what to do." I said, aghast, "I wasn't telling you! I was asking!" She said, smug as I've ever seen her, "Well, I'm not listening. You can fweak out if you want to."

I'm so happy our little girl is home with us for good (knock on wood, say a Hail Mary, throw some pixie dust up in the air), I just might fweak out.

Saturday, April 19, 2008

On the Upswing

Jilly has an ANC, doo-dah! doo-dah!
Jilly has an ANC, oh, doo-dah-dey!!!!

Jillian's Absolute Neutrophil Count (the part of the WBC that we really care about) is 300!!!! I'm thankin' the neupogin shot...the one we were pretty sure we'd never try. Every cycle so far has shown that once she hits a 2 digit number, she's up to 500 within 3 days. We would go home at 500, but for the fact that she's still not eating, has a bit of eye irritation that they haven't figured out, complaints of her head hurting, and the need to redo the chest xray for the third time to rule out any fungus or other infection. The doctor has ordered an MRI of her head (about the only part of her body that hasn't been scanned so far) to rule out anything in the skull/brain/neck. That makes me feel relieved as it would be terrible to go home only to come back in 3 weeks with a brain tumor.....may sound extreme, but it happens.

So, today, I came to the hospital with Anna. The Team in Training and Hike for Discovery Teams (marathoners/hikers who work incredibly hard raising money to benefit the Leukemia/ Lymphoma Society) came to visit (thanks for organizing that Alyce...the girls loved their balloons and little gifts). Matt then took Anna home to rest for awhile. He'll be back tonight to spend the night....and every night until she goes home (as there is very little chance I'd get any sleep here with all of the beeping and Matt can sleep through a lot more than I me, it's better for everyone involved if I'm rested :). Jill and I played for a good 3 hours. She's still a lot of fun, but very testy and argumentative a lot of the time. "No you can't touch my castle! It's MINE!" "Leave me alone! Go away!" She's doing a lot of throwing things out of her bed just so other people can't touch them, or hold them, or (God forBID!) look at them. She told one of the nurses today, very matter of factly, after the nurse made a comment on how cute Jillian looked in a picture, "Don't you talk about my picture. You can't see it. You can't have it. Go away." I think she's really sick of people just bothering her...asking her to pose for pictures (she hates that) or give them hugs or even say goodbye. I told her to stop picking the skin off her lips today (they are very dry no matter how much chapstick we apply) and she says EXACTLY these words, "Don't tell me what to do. I can do whatever I want." DANG! Don't get me wrong, she's still sweet and happy and fun to be around MOST of the time, but the baby's fed up. Can you blame her?

Please keep in your prayers/thoughts the family of an 18 year-old named T.J. He was diagnosed about 3 months ago with Embryonic Carcinoma. He's had this cancer since he was in the womb, but something triggered it and it flared up fast and horribly. When he came in, it was Stage 4. He is now in a coma..the cancer has spread throughout his body, and into his brain...he is dying. His parents, Jon and Susan, are two of the most kind and gentle people I've ever met. When Susan told me how T.J. was doing yesterday (and only because I asked), I could not hold back the tears. She and her husband both tried to comfort me by talking about how Jillian had perked up and was doing so much better. Susan apologized a number of times for making me feel bad...she said I didn't need to hear this given our circumstances with Jill. They are very strong people with a solid group of friends and family supporting them, but what a nightmare. T.J. is their only child.

Friday, April 18, 2008

Bad News/ Good News

It's 2:30 am and I just had to stop working on the girls' room. My Dad and I have been sanding/painting the doors/frames/trim/walls for the past 3 days. It's almost done but difficult to move the furniture by myself. There are still many little things that will have to be left undone as I was kind of counting on my Dad to help with them and he left today (4 days before the original planned date) with my Mom. I'm very sad about the circumstances around them leaving.....just a lot of tension and stress between my Dad and I. I won't go into it publicly because that wouldn't be fair to him, but I'd be lying if I said that everything is fine right now. I'm miserable because I can't see my baby still and very hurt that my parents left early.

We all went to see her Wednesday night....I wore a mask because I still have a little sore throat. Matt was tense the whole time I was there for obvious reasons. He didn't want me there but knew I had to see her. I was very careful, but also felt guilty for being there. It was so great to see her. She perked up so much when we all came in. She held onto me for so long......tried to kiss me, but I backed away...that was so hard. She really enjoyed hanging out with Grandma and Grampa (even pooped all over Grampa to show how much she cared). My parents gave the girls gifts from people back home....a plastic horse and 2 homemade cuddly blankets (they both loved them). Jill looked sick to me. Like she'd been through a wind tunnel. Puffy eyes, pale skin, lots of little bruises and rashes all over. She was just finishing up a platelet infusion (she's been getting them a lot lately, so if you can, please go to Millers and donate directly to need to be prescreened in person and can donate 4 days after that, so a lot of people are getting prescreened and giving blood on the same day, then coming back to give me with questions about it). She has an NG tube in, but they stopped feedings because she was throwing up too much. She was sort of herself....playing and pretending and smiling, but she just looked so tired and worn. It was so wonderful to see her, but I think it made it harder to leave.

Today started out crappy....she woke up with a high fever (she's still on Tylenol and Trilisate every 4-5 hours to keep the fever down) and threw up. In so doing, she dislodged her NG tube and they had to take it out. The good news is that she ate a good lunch (maybe Daddy telling her they'd be putting the tube back in if she didn't eat, helped) and at 8pm tonight, Matt reported that she had been sleeping (fever free!!) for 8 hours. This is the longest she's gone without Tylenol since nearly 2 weeks ago. The doctors were starting to worry about her liver as her liver function tests were showing slightly elevated (something?) from all the Tylenol, so I am so happy that it looks like it may be going away. I'll write more when I know more.

(For those that knew about it, we cancelled the girls' was supposed to be today at the hospital, but Jill likely would've slept right through it, and we didn't want to put her through anything more....I would not have been able to be there either due to my sore throat. We'll reschedule it for when she's home).

Saturday, April 12, 2008

Nobody Knows

One week later and our baby still has a fever. They don't know why. Another chest xray was done this morning to rule out something growing in her lungs. She's getting continuous oxygen to keep her saturation up (when she'll tolerate it). They started giving her little doses of morphine, which actually makes her feel well enough to play for short periods of time. But most of the time, she sleeps. The Infectious Disease doc (I have to get his/her name, Matt really likes this doctor) recommended we start Jillian on an intensive anti-fungal treatment protocol. Our HemOnc doc is hesitant because it is very hard on the kidneys and could make Jill feel a lot worse (is that possible???). They ran some more tests today, but won't get the results for another 5 days on whether she has this particularly scary fungus, Asperilligus (sp?). If we wait 5 days and she DOES have it, we may have waited too long, but if we start her on the regimen, it could down her immunity even more. They decided as a team (Matt included) to start her on ONE of the anti-fungal drugs as a prophylactic measure....this one requires pre-medication with Benadryl and Tylenol as many people are allergic to it, and continuous monitoring of her blood pressure, temp, and O2 saturation as all of these systems may be affected. How much more could her little 2 year-old body be put through??? Really??? For the record, the docs told Matt today that 60% of the time, kids will have a fever for a very long time and before they figure out what it really causing it, it goes away. Though everyone is on top of things there in HemOnc (Matt is thoroughly impressed at the moment with the quality of nursing and physician care Jill is receiving), no one seems ultra-concerned that things are haywire right now. This is apparently par for the course this late in the chemo game. One of the nurses told me the other day when I was dropping off clothes/food for Matt (and I was sobbing because I miss my Jilly so much), that she now looks like a kid with AML. "She's been such a firecracker!" the nurse said...."You guys just weren't expecting this crash....but this is what it really looks like. Some kids have these kind of results every time they come in for treatment. You've been lucky so far...."

I feel like I'm reporting from outside the prison walls without having a glimpse of my only contact is via phone. I still have a bit of a sore throat and my cough is nearly gone, but not quite. Anna may be getting sick...she asked to leave a party early tonight because her tummy hurt (she ate nearly nothing all day...very unlike her). Matt appears to be holding up pretty well....there is nowhere else he'd rather be, I know that. He is doing the only job that means anything to him right now, and that is being ever-present to his beautiful girl....whatever she needs, however much, however long. Matt is Jillian's Prince. Anna & I miss him dearly. I have so much love and admiration for him...more than ever now. We both know it is best this way. He is where he should be, and so am I.

I can't help but imagine what it would be like if Jill's Daddy was anyone else....if he was skiddish, or tentative, or scared enough to not be able to pull this off without making me worry about his mental state or capabilities. Matt is so unwaveringly strong and solid and certain that his presence and deep and firmly planted love for his little baby doll are all that she needs to get her through this dark time. His knowing she'll be okay (and telling me over and over that we only have a little over 2 weeks left--"in a perfect world," I have to add), gives me hope she really will be. When I am cynical, he is sure. When I doubt, he believes. When I fall apart, he builds me back up. I wish everyone could know the love I have for this man. I've always told him, since Anna was born, that I am so glad he's the daddy to my children. There couldn't be anyone better.

Thank you Phil and Lisa for your recent visits. If anyone else is interested in stopping by (even with Jill sick, Matt appreciates one visit a day....keeps him connected to the outside world), let me know and I'll get you in touch with him. I hope to back to the hospital soon. But I need to be 100% before I go. My Mom & Dad arrive tomorrow but won't go to the hospital until Wednesday (barring illness). I will keep updating the blog as I get new info.

Thursday, April 10, 2008

Tests and Procedures and Shots, Oh My!

Jill did okay last night...had some energy, even, and was playing a little. Our friend Sandra was over for a visit and Jill said she wanted to eat pizza. So Sandra ran out to Pizza Hut and got her one (now, that's service!) and she had a piece and a half. Yay! At 5 in the morning, after being off her Tylenol schedule for a total of only one hour, her fever shot up to 103. The nurse rushed in with Trilisite and as Matt was giving it to her (half asleep and worried), she started gagging....this dropped her oxygen saturation to 92 (it's supposed to be 98-100), but it stayed there for a little bit, so they gave her oxygen and then did a chest xray (no one gives ME a chest xray when I choke on my's not FAIR...sadistic humor...I'm tired...'splain later). Her fever remains under control with lots of medication and she's doing great, energy wise, all things considered today (it's 12:30 and Matt says she's been playing most of the day, and eating a little).

On the agenda today are:
1) Platelets (3 hour infusion)
2) NG Tube placement to prep her for GI Scan
3) GI Scan
4) CT Scan of her head/sinuses to rule of fungal mass

They also started her on Neupogin (sp?) shots last night. This shot to her thigh (it's a small needle...little stick) should encourage her WBCs to come back quicker. We haven't done this in the past because it gets your ANC (Absolute Neutrophil Count) to 500 only, on average, 3 days sooner, and it has NOT been proven NOT to encourage leukemia cell growth....although it hasn't been proven TO do that, either, so many doctors are on the fence about it. It's also something we will have to give her every day from now on until she gets back up to a normal WBC count (we may have to continue these for up to 4 weeks after we leave the hospital...Matt's making ME do them....why do I always have to be the bad guy???) We felt that with her being so sick and having such a long way to go being immuno-suppressed, it is worth the risk. But we really have no idea what we're doing. Maybe we should've stopped at Round 4 and signed her out AMA. Hedged our bets? I'd hate to see her survive leukemia only to be thrown into a whole other world of organ system failure and transplant. Chemo kills. Everything. Hmmmm....that's a good idea for a shirt......

So, your job is to pray (hope/wish) they don't find anything. I'll keep you posted.

I'm tired because I couldn't sleep last night...don't know I peeled wallpaper off of the girls' bedroom walls from 11:30-6:00 am (it was some very stubborn glue...rrrrrrgh). Slept a bit this morning while my poor neglected 4 year-old was watching Dumbo and various other shows on Noggin (hey, "it's like preschool on tv"...that's their I felt much better....I'm sure she learned a lot).

Wednesday, April 9, 2008

Recent Pics

Discovery Arts day 3 weeks ago in her flapper dress.

On her short visit home between chemos 5 & 6 playing in the grassy area above Trump Golf Course.

Donning her Gabriella garb from the vonStentzsch gals. She was the most hilarious I've ever seen her this day (about 2 weeks ago).

With good friends, Makaiya, Keona, and mommy Tanya.

The Fight Continues....

Okay, so Jill's fever has not completely gone away has gone up and down, but never gotten below 99 (and that was only a few times...always on Tylenol and another fever-reducing drug, Trilisite). The Infectious Disease docs have been consulting with Matt...they want to run tests tomorrow (a CT Scan & MRI among some other bloodwork) to determine if she has a fungal infection somewhere as she does not seem to be responding to the Vancomycin. Just to fill you in, she has been taking 3 antibiotics, orally, every day (or just about) since Oct 4th (Penicillin, Diflucan, and Bactrim). She also has antibiotic eye drops while on chemo and a stool softener when she needs it. When she gets a fever, they immediately start her on 3 new (and hard on the kidneys/liver) antibiotics by IV (Cefapime, Tobramycin, and Vancomycin). She sucked some of the top layer of skin off her thumb over the last few days (yep, she's still a thumb sucker...and we do NOTHING to discourage it as it's one of her few comforts). The docs said that it probably is worse than it looks as with no WBCs, the skin won't get swollen and red like it should. So, they've started her on a 6th antibiotic (they stop the Penicillin when she goes on the IV antibiotics) called Flagyl to fight fungus as a preventative measure. They will start her on a 7th IV antibiotic if her tests come back showing a fungal infection somewhere in her body (this one is VERY hard on the kidneys, which is why they will wait for the tests to come back positive). She has had pretty bad tummy issues since starting all of these drugs (#1 side effect of antibiotics). She is on fluids, including some dextrose (sugar) and will be starting to get boluses of nutrition through her IV as she refuses to eat. Despite a burst of energy or two in the past few days, she has been down most of today. She perked up a little around 6pm for a bit right after receiving Trilisite (Matt has talked the doctor into writing a more liberal order for this drug as its administration has preceded her "good moments" and the doctor seems to think that its side effects are not too bad). Please please please keep her in your thoughts and prayers. We are very worried about her right now.

The move went smoothly. I don't think Matt had to do too much (but pack everything into 2 big suitcases...and care for a very sick baby for 6 full days on his OWN....God, I love you). He reports that our new (private) room (thanks, Jill) is spacious and "beautiful" (how backwards is our perspective these days if we're referring to a hospital room as "beautiful"????). It has lots of windows and overlooks a pretty garden. I hope Jillian appreciates being able to see the sky.

I miss her like you would not believe. I will go to the doctor on Friday, even though I'm sure she will tell me, "Yep, you have a sore with it"....but I want to make sure it's not strep just in case. I want to go back there so badly.....I actually miss being there. I'm starting to forget her face!

Anna is doing wonderful. She misses Daddy (constantly reminding me that, though she loves me too, she loves Daddy more because "he's just so CUTE"...honestly, she has the biggest crush on him!!), but we've been having a really good time. I'm so much more relaxed not having anything to do!!!! Trust me, I've gotten a lot done with the time I've had here, but I'm not stressed about it. These are projects that have been sitting for 6 rush to finish them. Yet I am. I need to stop watching tv, though....that's holding me back. (I'm addicted to reality tv....have you seen the "Bad Girls Club" on Oxygen? What a complete waste of time!! I LOVE it!!). If anyone has "The Good Earth" or whatever that Oprah book is and wouldn't mind lending it to me, I'd love to borrow it. I will try & borrow it from the library, but am pretty sure there's a waiting list a mile long. Thank you Dina for taking Anna all day Thursday...she had so much fun with her best boyfriend James, as usual. Renee, thanks again for the lasagna....I shared it with Dina & my neighbor Karen last night and everyone raved! And Jannah/John/Barb, thanks for taking Anna to Legoland today (the hours of absolute freedom were--still are--so precious). Barb, thanks for buying the girls pink swords. Give 'em weapons and go home....that's what Grandmas do best (hee hee). I'm taking Anna to the Discovery Science Center tomorrow. I'm sure we'll have a blast.....I'm getting over the guilty feeling.....but I still miss my baby.

Monday, April 7, 2008

Sickies All Around

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 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.

Saturday, April 5, 2008


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.

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.......