Sylvie's doctors said she'd feel crappy for about a month. It's been 18 days but we are anxious to see the silly, happy, crazy Sylvie that we know and love. Don't get me wrong, we still love the bossy, sleepy Sylvie but it's really hard to watch and experience day in/ day out.
After being at the hospital for about 2 days straight, I went to yoga this morning, dedicated my practice to Sylvie getting well, cruised home to see my furry friends and then back to Hackensack. Within 5 minutes of arriving at the hospital, I fell asleep on my couch bed for an hour and half. Note to self: Must eat at regular intervals.
I'm playing Fountains of Wayne "Hackensack" right now just because a). I like the band and b). There aren't too many songs called or about Hackensack. Not my favorite FOW song but nice melody. I love the sweet "Valley Winter Song" because it reminds me of Vermont and we won't be back for a long time I imagine.
The good news about Saturdays is no visits from infectious disease doctors. No more reminders about bacteria, fevers and infections. They're pretty nice despite the altercation over Sylvie not having received a chicken pox vaccine. I've had at least 5 conversations with the hospital staff, Sylvie's pediatrician Dr. Rosen and the compounding pharmacy over her new and improved sugar free raspberry goo but somehow the hospital pharmacy and new resident waited until after 6 pm to double check the dosage. Therefore, they'll have to torture Sylvie into taking the caramel version which she has decided to hate. One of the nurses, Katie, said the only things the little kids can control is what goes in their mouths. That makes perfect sense.
All of the residents are changing over so we have a new group of eager young doctors (I feel so old!) checking in on Sylvie and facing her wrath. They are all super nice. Sylvie's hemoglobin is still around 8 (should be over 11) but her magnesium is still stable and platelets are 135,000. Get used to hearing about platelets because that's the name of the game. Two days ago, they were only 45,000 which the nurse, Jessica, is still pretty good for Floor 5E officially called Pediatric Oncology and Hematology.
There's a little boy who just turned two who zooms around the floor all day long. He's as bald as Elmer Fudd and full of energy. I can't wait for Sylvie to be as energetic although the Sylvie looking like Elmer Fudd part is hard to digest. Michael got really sad about that today.
Not much to report except that Michael's mom, Ann, is staying at the hospital tonight so we can have a night at home. Was going to have a Scrabble rematch with Kitzchy but I need to go to bed soon.
Saturday, February 28, 2009
Friday, February 27, 2009
There's No Place Like Home
The news I was waiting for all day long: Sylvie's ultrasound didn't show anything [more] abnormal than we already know. Whew. Pancreas, Gall Bladder, Kidneys all good. Arteries all good. We're going to another ultrasound of Sylvie's heart on Monday but it's not a big deal. When her hemoglobin is low, it creates a murmur and since she has this funky strep infection (officially called 'granulocatella'), one can never be too cautious. While Sylvie was screaming GET OUT to the infectious disease doctor he was able to shine a flashlight in her mouth and see the cause of her non-eating and pain-- mouth sores. Typical with chemo. Dr. Rosen had me get something called Traumeel but I can't even get Sylvie to drink water let alone drink 5 drops of this stuff. Will try again tomorrow.
So for now Sylvie has the mystery fever, wierd infection, low platelets, no white blood cells and of course, cancer.
I asked her Team the million dollar question: when can we go home and they said, "YOU can go home anytime" and laughed. So basically until Sylvie runs a normal temperature for several days in a row, no going home. She can't even leave the hospital room I'll be bringing my blanket back tomorrow.
Sylvie's platelets were at around 45,000 today. In order to start round two of chemotherapy next week, they need to be between 75,000 and 100,000 on their own (i.e. without a transfusion). And her white count needs to be a little existent too.
I started practicing yoga in the family locker room/laundry room because except for me and the mom, Donna, two doors down, no one even knows it's there. I'm sure at some point I'll scare the heck out of someone and vice versa.
Sylvie, my parents and I tried to play some princess fishing game meant for kids 3 and up. None of us were able to fish out even one 'crystal' although Sylvie thought it was pretty neat. Then she moved onto the Princess dominos ("bominos" according to Sylvie). If you had to guess what we're doing now, you're probably right (Disney 'Princess Stories').
So for now Sylvie has the mystery fever, wierd infection, low platelets, no white blood cells and of course, cancer.
I asked her Team the million dollar question: when can we go home and they said, "YOU can go home anytime" and laughed. So basically until Sylvie runs a normal temperature for several days in a row, no going home. She can't even leave the hospital room I'll be bringing my blanket back tomorrow.
Sylvie's platelets were at around 45,000 today. In order to start round two of chemotherapy next week, they need to be between 75,000 and 100,000 on their own (i.e. without a transfusion). And her white count needs to be a little existent too.
I started practicing yoga in the family locker room/laundry room because except for me and the mom, Donna, two doors down, no one even knows it's there. I'm sure at some point I'll scare the heck out of someone and vice versa.
Sylvie, my parents and I tried to play some princess fishing game meant for kids 3 and up. None of us were able to fish out even one 'crystal' although Sylvie thought it was pretty neat. Then she moved onto the Princess dominos ("bominos" according to Sylvie). If you had to guess what we're doing now, you're probably right (Disney 'Princess Stories').
24 Hour Party People
24 Hour Party People. That's what Sylvie and I are.
Surprise visit from Kitzchy last night since Michael is home sick. She brought travel Scrabble and we got down to business on the floor by the door while Sylvie slept. The first word I laid out was conveniently LIVER. Kitzchy killed me in the end and I should never have let her use the word RICE twice! What I should have done is probably gone to sleep a little earlier.
Sylvie's is finally sleeping after an all-nighter and busy morning. Sylvie's lower port began bleeding last night after a power struggle over taking her last does of 'carmelized' magnesium. Alba, the resident, finally said to skip the magnesium but as we went to go back to bed, Nicole the nurse noticed blood on the front of Sylvie's green hosptital nightie. Instantly the room became as sterile as it possibly could, we all donned masks (including a VERY pissed off Sylvie) and we all went to work. As a rule, I try to not appear scared or upset in front of Sylvie. It took every ounce of strength for me to not throw up and I kept having to look away. As a consolation prize, Nicole gave Sylvie a brand new Disney "Belle" doll of which they must have closets full of them and I let her watch The Little Mermaid/ Ariel's Daughter. Then, after they cleaned the ports and applied new bandages, Alba ordered up some platelets. And with platelets comes Tynelol and Benedryl half an hour to an hour in front. And the usual vital sign checks, antibiotics and so forth. Fortunately Sylvie was not getting food through her nose (it's called an NG tube so I'm going to start using the official word) which saved me an ADDITIONAL 18 "alarms" from going off between 7pm and 7 am. I was very distracted and couldn't fall back asleep.
Sylvie woke up around 6 am demanding the usual-- Dora or a princess movie. Karen who is the day nurse today suggested Sylvie wear a t-shirt to protect the port so Sylvie is wearing her brand new green St.Patrick's Day from her friend's bday party that she missed 2 weeks ago beneath her green hospital nightie. As further protection, Sylvie is also donning a princess dress (surprise, surprise) in the hopes that it will be more difficult for doctors and nurses to poke and prod her abdomen.
The ultrasound was scheduled for 8 am which quickly became 9 am and then 10am. By that point Sylvie was asking for food (yeay) but couldn't have any (boo). Sylvie and I both lay on the stretcher together as we got wheeled down to radiology. We tried to read a princess story and look at photos of Sylvie with Kate at her house and Sammy (and the Easter Bear from last year) while Padma the technician lubed up Sylvie's belly. My dad was with us too and Sylvie seemed to like knowing he was there too. Not to be graphic but I think my ass fell asleep while on the stretcher. I have to tell Sibel that because she just learned in English class what it means to have a limb "fall asleep." I do not know the Turkish translation.
We got back to the hospital room unscathed and I was happy to see they spruced up the room and changed the sheets. Sylvie's officially shedding all over the place. I keep staring at her so I can remember what she looks like with her full head of hair. Sylvie was born with more hair than many three year olds so we have never ever seen her without hair. Ironic, huh?
I missed Sara B. who dropped by with her world-famous Hamentashen cookies in advance of Purim which is March 10th (also my friend Ann's birthday). There must be half a stick of butter in each. They're awesome. Hopefully we will NOT be here through March 10.
Dr. Diamond, Marianne Mariniello (Advance Practice Nurse, Nurse Pracitioner) and Lynda the head nutritionist came by and Sylvie faked sleeping. Her bilirubin level dropped from yesterday which is great news, albumin dropped a little which isn't great but can be helped; otherwise they said Sylvie looked much better today than yesterday. When they get the radiology report, they'll return again.
Sylvie ate 2 cheesy duck crackers and a spoonful of cottage cheese. Breakfast of champions. She's now fast asleep.
Michael can't come to the hospital because he's pretty sick. I'm getting used to the no sleep; Somehow have managed to this without drinking any caffeine.
When his mom Ann sleeps over on Saturday evening, I might literally crawl under the covers at 8 pm despite having a lot of "24" and "Criminal Minds" to catch up on. I read that Michael Vick might get out of prison any day now because there's no room for him at a halfway house. There are so many jokes I could say but the new peaceful self instead will make an online donation to the Best Friends Animal Sanctuary (www.bestfriends.org) in Kanab, Utah (population 4,200 and home of my friend Kelly) where his dogs will spend their rest of their lives being pampered and taken care of.
OK time to order some "Room Service" for Sylvie in the hopes that she'll be hungry when she wakes up.
Surprise visit from Kitzchy last night since Michael is home sick. She brought travel Scrabble and we got down to business on the floor by the door while Sylvie slept. The first word I laid out was conveniently LIVER. Kitzchy killed me in the end and I should never have let her use the word RICE twice! What I should have done is probably gone to sleep a little earlier.
Sylvie's is finally sleeping after an all-nighter and busy morning. Sylvie's lower port began bleeding last night after a power struggle over taking her last does of 'carmelized' magnesium. Alba, the resident, finally said to skip the magnesium but as we went to go back to bed, Nicole the nurse noticed blood on the front of Sylvie's green hosptital nightie. Instantly the room became as sterile as it possibly could, we all donned masks (including a VERY pissed off Sylvie) and we all went to work. As a rule, I try to not appear scared or upset in front of Sylvie. It took every ounce of strength for me to not throw up and I kept having to look away. As a consolation prize, Nicole gave Sylvie a brand new Disney "Belle" doll of which they must have closets full of them and I let her watch The Little Mermaid/ Ariel's Daughter. Then, after they cleaned the ports and applied new bandages, Alba ordered up some platelets. And with platelets comes Tynelol and Benedryl half an hour to an hour in front. And the usual vital sign checks, antibiotics and so forth. Fortunately Sylvie was not getting food through her nose (it's called an NG tube so I'm going to start using the official word) which saved me an ADDITIONAL 18 "alarms" from going off between 7pm and 7 am. I was very distracted and couldn't fall back asleep.
Sylvie woke up around 6 am demanding the usual-- Dora or a princess movie. Karen who is the day nurse today suggested Sylvie wear a t-shirt to protect the port so Sylvie is wearing her brand new green St.Patrick's Day from her friend's bday party that she missed 2 weeks ago beneath her green hospital nightie. As further protection, Sylvie is also donning a princess dress (surprise, surprise) in the hopes that it will be more difficult for doctors and nurses to poke and prod her abdomen.
The ultrasound was scheduled for 8 am which quickly became 9 am and then 10am. By that point Sylvie was asking for food (yeay) but couldn't have any (boo). Sylvie and I both lay on the stretcher together as we got wheeled down to radiology. We tried to read a princess story and look at photos of Sylvie with Kate at her house and Sammy (and the Easter Bear from last year) while Padma the technician lubed up Sylvie's belly. My dad was with us too and Sylvie seemed to like knowing he was there too. Not to be graphic but I think my ass fell asleep while on the stretcher. I have to tell Sibel that because she just learned in English class what it means to have a limb "fall asleep." I do not know the Turkish translation.
We got back to the hospital room unscathed and I was happy to see they spruced up the room and changed the sheets. Sylvie's officially shedding all over the place. I keep staring at her so I can remember what she looks like with her full head of hair. Sylvie was born with more hair than many three year olds so we have never ever seen her without hair. Ironic, huh?
I missed Sara B. who dropped by with her world-famous Hamentashen cookies in advance of Purim which is March 10th (also my friend Ann's birthday). There must be half a stick of butter in each. They're awesome. Hopefully we will NOT be here through March 10.
Dr. Diamond, Marianne Mariniello (Advance Practice Nurse, Nurse Pracitioner) and Lynda the head nutritionist came by and Sylvie faked sleeping. Her bilirubin level dropped from yesterday which is great news, albumin dropped a little which isn't great but can be helped; otherwise they said Sylvie looked much better today than yesterday. When they get the radiology report, they'll return again.
Sylvie ate 2 cheesy duck crackers and a spoonful of cottage cheese. Breakfast of champions. She's now fast asleep.
Michael can't come to the hospital because he's pretty sick. I'm getting used to the no sleep; Somehow have managed to this without drinking any caffeine.
When his mom Ann sleeps over on Saturday evening, I might literally crawl under the covers at 8 pm despite having a lot of "24" and "Criminal Minds" to catch up on. I read that Michael Vick might get out of prison any day now because there's no room for him at a halfway house. There are so many jokes I could say but the new peaceful self instead will make an online donation to the Best Friends Animal Sanctuary (www.bestfriends.org) in Kanab, Utah (population 4,200 and home of my friend Kelly) where his dogs will spend their rest of their lives being pampered and taken care of.
OK time to order some "Room Service" for Sylvie in the hopes that she'll be hungry when she wakes up.
Thursday, February 26, 2009
Gasplosion
"Life is difficult" is how "The Road Less Traveled" by M. Scott Peck begins. And so it goes.
It is hard to be bummed with my little cheerleader telling me "I feel good" and "I don't have a fever" but the reality is, Sylvie doesn't feel well because I can look at her monitors and know she's uncomfortable or in pain and yes, she still has a fever. But not impossible either, I thought, as I cradled Sylvie on my chest for the last 20 minutes or so.
This was the second night or morning (it all blends together) this week where I woke up, looked at the hands of the clock and couldn't figure out the big and little hands. Think about it. Then there was a 3:30 am something-- I can't even remember. Antibiotics? Sleep apnea? Changing all Sylvie's IV lines? I have no idea.
Our niece Jackie cut school today to donate platelets for Sylvie but for some reason or another they couldn't do it. So Jackie hung out with us until noon and drew some princess pictures with Sylvie. I ran home around 1 pm to a). run b). see Lucky & OJ c). take a real shower and d). get some clean clothes. Michael's mom, Ann, had been bringing me stuff over the past two weeks and while I appreciate that she matches ALL of my clothing MUCH better than I do, I felt like dressing myself today :-).
Sylvie spent the entire day in bed watching Dora and Sleeping Beauty because she's hooked up to monitors, quarantined in the room until her fever subsides, and just plain exhausted. We had visits from the infectious disease doctor (no news) and then rounds with the rest of the medical team. This is comprised of the pediatrician (Dr. Diamond this week), nurse practitioner for Dr. Harris (Marianne), head nutritionist (Lynda), the residents, someone from physical therapy and usually a social worker. Sylvie hears all the footsteps as they creep into the room and either pretends to be sleeping like today, or begins hurling insults at them. We all knew she was wiped out because she didn't tell Dr. Diamond to get away nor did she hit him. Sylvie's bilirubin was a little off the charts which can be any number of things some more serious than others. In addition, her tummy grew 2 inches overnight! We scheduled an ultrasound for 8 am tomorrow morning. It goes without saying that Sylvie did not eat a morsel even after I assembled a smorgasbord of her breakfast favorites. No I did not eat it myself :-).
I'll spare being very graphic and disgusting but later this afternoon, Sylvie had a couple of gasplosions and wouldn't you know it, her stomach shrinked back those 2 inches. She was laying on my chest and I was too scared to move. Paralyzed, I waited for Sibel to return to the room so we could do a tag team diaper change. Ick.
Humor aside-- tonight I'm using it to make myself feel better-- I am beyond concerned about the tomorrow's ultrasound.
It's continues to be mind-boggling to me to watch Sylvie lay in bed in exhaustion & pain and think how the hell this happened in the first place. I told Sylvie today that this is hopefully the most challenging and difficult thing we're ever going to endure together and that I'm counting on her to be braver and stronger than me and to persevere. Later we can figure out what the lesson learned is. Then she farted.
It is hard to be bummed with my little cheerleader telling me "I feel good" and "I don't have a fever" but the reality is, Sylvie doesn't feel well because I can look at her monitors and know she's uncomfortable or in pain and yes, she still has a fever. But not impossible either, I thought, as I cradled Sylvie on my chest for the last 20 minutes or so.
This was the second night or morning (it all blends together) this week where I woke up, looked at the hands of the clock and couldn't figure out the big and little hands. Think about it. Then there was a 3:30 am something-- I can't even remember. Antibiotics? Sleep apnea? Changing all Sylvie's IV lines? I have no idea.
Our niece Jackie cut school today to donate platelets for Sylvie but for some reason or another they couldn't do it. So Jackie hung out with us until noon and drew some princess pictures with Sylvie. I ran home around 1 pm to a). run b). see Lucky & OJ c). take a real shower and d). get some clean clothes. Michael's mom, Ann, had been bringing me stuff over the past two weeks and while I appreciate that she matches ALL of my clothing MUCH better than I do, I felt like dressing myself today :-).
Sylvie spent the entire day in bed watching Dora and Sleeping Beauty because she's hooked up to monitors, quarantined in the room until her fever subsides, and just plain exhausted. We had visits from the infectious disease doctor (no news) and then rounds with the rest of the medical team. This is comprised of the pediatrician (Dr. Diamond this week), nurse practitioner for Dr. Harris (Marianne), head nutritionist (Lynda), the residents, someone from physical therapy and usually a social worker. Sylvie hears all the footsteps as they creep into the room and either pretends to be sleeping like today, or begins hurling insults at them. We all knew she was wiped out because she didn't tell Dr. Diamond to get away nor did she hit him. Sylvie's bilirubin was a little off the charts which can be any number of things some more serious than others. In addition, her tummy grew 2 inches overnight! We scheduled an ultrasound for 8 am tomorrow morning. It goes without saying that Sylvie did not eat a morsel even after I assembled a smorgasbord of her breakfast favorites. No I did not eat it myself :-).
I'll spare being very graphic and disgusting but later this afternoon, Sylvie had a couple of gasplosions and wouldn't you know it, her stomach shrinked back those 2 inches. She was laying on my chest and I was too scared to move. Paralyzed, I waited for Sibel to return to the room so we could do a tag team diaper change. Ick.
Humor aside-- tonight I'm using it to make myself feel better-- I am beyond concerned about the tomorrow's ultrasound.
It's continues to be mind-boggling to me to watch Sylvie lay in bed in exhaustion & pain and think how the hell this happened in the first place. I told Sylvie today that this is hopefully the most challenging and difficult thing we're ever going to endure together and that I'm counting on her to be braver and stronger than me and to persevere. Later we can figure out what the lesson learned is. Then she farted.
Wednesday, February 25, 2009
You Give Me Fever
Uggh... two steps forward one step back. Or the other way around.
Ricky and Brie came from Sharky's (I think I said Cozy's yesterday but that's the place in the City) and gave Sylvie a little bob haircut. Now she really looks like Suri Cruise. Gabrielle said that Alexandra spied a photo of Suri in a magazine last week and thought it was Sylvie.
I slept at home last night while Michael "slept" at the hospital with Sylvie. She had a fever ranging from 101 to 103 all night and through the morning. Sometime when it was still dark they did a chest x-ray. While I appreciate that the portable x-ray machine is painted like a giraffe, I hardly think it makes a difference to Sylvie. X-Ray totally clear.
After reading the interview with Leonard Cohen in the New York Times this morning, I was thinking of how much I love his song "Hallelujah" and then had a little hallelujah myself when Sylvie asked me for a bagel!!! This is a big victory. Dr. Nita even heard it :-). But when she took a bit of bagel w/ cream cheese, then oatmeal, then Kashi O's, then Greek Gods honey yogurt, each time she made a horrific face and spit it out. She might have mouth sores or just a bad taste in her mouth. We're trying to remedy it. At least she said she was hungry!
The infectious disease doctor came in this morning and said that the port which they closed up last Sunday has now tested positive for a strep bacteria. So the good news is the staph us under control. Now they need to determine what type of strep this is and administer the best antibiotic. For now, they're switching from Oxycillin and another one I can't remember to Vancomycin until they determine if it's resistant to penicillin. BUT she is going to see if they can work it out so that we can go home on schedule although I may need to get a crash course in administering antibiotics through a port. This is a far cry from when I volunteered with the paramedics at Wayne General during high school.
A little victory in that Sylvie's magnesium level is 2.2! It was about .9 two days ago. This is GREAT news. Yeay for Magnesium and Santa Cruz organic caramel dessert syrup!!!! Actually Dr. Rosen talked to the chief compounding pharmacist at Town & Country and they can make something 'better' for her.
Today Sylvie has more Physical Therapy and is getting some more blood because her hemoglobin is low. On that note, I wanted to thank everyone who has donated A+ blood or any kind of platelets for Sylvie. Paula has been keeping track of it and I have a little notebook at the Hackensack University Medical Center blood bank for everyone to sign in. Sylvie has been getting around 2 transfusions a week and has received platelets once. Because she's only around 26 pounds, she does not get a full pint each time. In case anyone needs the 411 its:
Hackensack University Medical Center Blood Bank
30 Prospect Avenue
Hackensack, NJ
Contact: Nadia
201-996-4818
Kitzchy came over around 6:45 am this morning when I was returning from my morning walk with Lucky. She drove over and I thought that for someone who ran 5 miles 2 weeks after giving birth that driving less then the length of a football field seemed a little silly (she was en route to the Duck Pond to go for a long run). Sammy made a movie for Sylvie; my eyes just welled up with tears. The Karas's and the Chase's are working on a Sylvie-run over Memorial Day which means everyone needs to start training now :-). I'm hoping Sylvie will be at the finish line.
As you can imagine, the Dining section of The New York Times is a highlight for Michael & me. He usually reads it online before it's published. I was looking at the giant photograph of the food pioneers in Brooklyn and thought it wasn't so far off from the old photographs that Polina & Dina have shown me of their family in Russia. First trucker hats and now beards... Go Brooklyn! I was going to insert a reference to Taliban beards but thought it might be taken the wrong way, especially by our Brookyn friends, who we love so much. Anyway, the article is actually wonderful and inspirational so everyone should read it. It makes our attempts at having a community garden plot in Ridgewood seem silly. On that note, however, I continued reading about Mast Brothers Chocolate since we're chocolate afficionados and couldn't help but look at the interior photo of the furry faced bros leaning over their precious cacao beans thinking that it has to be a health code violation and they need hair nets for their faces (great business idea). Obviously my sense of humor is drastically altered 15 days after being at the hospital.
Just want to put it out there-- we love our friends or family and want to see you but if you are sick, your loved ones are sick, the best thing to do and only option is send your love from afar and keep the sniffles or upset tummies at home. Sylvie's chemo makes her NEUTROPONIC (word of the day, there will be a test later) which in essence means low white blood cell count and no resistance to bacteria or viruses.
Ricky and Brie came from Sharky's (I think I said Cozy's yesterday but that's the place in the City) and gave Sylvie a little bob haircut. Now she really looks like Suri Cruise. Gabrielle said that Alexandra spied a photo of Suri in a magazine last week and thought it was Sylvie.
I slept at home last night while Michael "slept" at the hospital with Sylvie. She had a fever ranging from 101 to 103 all night and through the morning. Sometime when it was still dark they did a chest x-ray. While I appreciate that the portable x-ray machine is painted like a giraffe, I hardly think it makes a difference to Sylvie. X-Ray totally clear.
After reading the interview with Leonard Cohen in the New York Times this morning, I was thinking of how much I love his song "Hallelujah" and then had a little hallelujah myself when Sylvie asked me for a bagel!!! This is a big victory. Dr. Nita even heard it :-). But when she took a bit of bagel w/ cream cheese, then oatmeal, then Kashi O's, then Greek Gods honey yogurt, each time she made a horrific face and spit it out. She might have mouth sores or just a bad taste in her mouth. We're trying to remedy it. At least she said she was hungry!
The infectious disease doctor came in this morning and said that the port which they closed up last Sunday has now tested positive for a strep bacteria. So the good news is the staph us under control. Now they need to determine what type of strep this is and administer the best antibiotic. For now, they're switching from Oxycillin and another one I can't remember to Vancomycin until they determine if it's resistant to penicillin. BUT she is going to see if they can work it out so that we can go home on schedule although I may need to get a crash course in administering antibiotics through a port. This is a far cry from when I volunteered with the paramedics at Wayne General during high school.
A little victory in that Sylvie's magnesium level is 2.2! It was about .9 two days ago. This is GREAT news. Yeay for Magnesium and Santa Cruz organic caramel dessert syrup!!!! Actually Dr. Rosen talked to the chief compounding pharmacist at Town & Country and they can make something 'better' for her.
Today Sylvie has more Physical Therapy and is getting some more blood because her hemoglobin is low. On that note, I wanted to thank everyone who has donated A+ blood or any kind of platelets for Sylvie. Paula has been keeping track of it and I have a little notebook at the Hackensack University Medical Center blood bank for everyone to sign in. Sylvie has been getting around 2 transfusions a week and has received platelets once. Because she's only around 26 pounds, she does not get a full pint each time. In case anyone needs the 411 its:
Hackensack University Medical Center Blood Bank
30 Prospect Avenue
Hackensack, NJ
Contact: Nadia
201-996-4818
Kitzchy came over around 6:45 am this morning when I was returning from my morning walk with Lucky. She drove over and I thought that for someone who ran 5 miles 2 weeks after giving birth that driving less then the length of a football field seemed a little silly (she was en route to the Duck Pond to go for a long run). Sammy made a movie for Sylvie; my eyes just welled up with tears. The Karas's and the Chase's are working on a Sylvie-run over Memorial Day which means everyone needs to start training now :-). I'm hoping Sylvie will be at the finish line.
As you can imagine, the Dining section of The New York Times is a highlight for Michael & me. He usually reads it online before it's published. I was looking at the giant photograph of the food pioneers in Brooklyn and thought it wasn't so far off from the old photographs that Polina & Dina have shown me of their family in Russia. First trucker hats and now beards... Go Brooklyn! I was going to insert a reference to Taliban beards but thought it might be taken the wrong way, especially by our Brookyn friends, who we love so much. Anyway, the article is actually wonderful and inspirational so everyone should read it. It makes our attempts at having a community garden plot in Ridgewood seem silly. On that note, however, I continued reading about Mast Brothers Chocolate since we're chocolate afficionados and couldn't help but look at the interior photo of the furry faced bros leaning over their precious cacao beans thinking that it has to be a health code violation and they need hair nets for their faces (great business idea). Obviously my sense of humor is drastically altered 15 days after being at the hospital.
Just want to put it out there-- we love our friends or family and want to see you but if you are sick, your loved ones are sick, the best thing to do and only option is send your love from afar and keep the sniffles or upset tummies at home. Sylvie's chemo makes her NEUTROPONIC (word of the day, there will be a test later) which in essence means low white blood cell count and no resistance to bacteria or viruses.
Tuesday, February 24, 2009
Small Victories
I was a little elated. A little jump for joy. Looking forward to sharing my new adventure in making balanced organic food for Sylvie's feeding tube which I hope is only for a few more days anyway.
But as I was waiting for the not-so-fast Wi-Fi connection, Nurse Jessica took Sylvie's temperature and it's 102. I may be trying to find my spiritual center with a firm base of kindness and understanding but nowhere have I read that cursing is forbidden. So here's to a giant FUCK. When are we going to be able to leave the hospital? I may not have mentioned that when Sylvie has a temperature, she cannot leave the hospital room.
Dr. Rosen came by this morning for a visit. I was so thrilled to see him and review the past week. He laughed at the Coca-Cola/Hershey's Syrup/Food debacles of the past few days and promised to look into a solution.
So I'm staring at a plate of french fries and grilled cheese with a peach yogurt smoothie on my LEFT and to my RIGHT is a giant syringe of feeding tube slop. I do not think Sylvie will take so much as a bite out of her lunch and must acquiesce to the latter. I was pretty excited when the nutritionist came to talk to me today and explain that they knew I'd hem and haw at the 'dog food' food supplement but that it's really the best packaged stuff available. In addition, she said that I wanted to make my own concoction, that I could do so. I'm not sure I could get the calories high enough but cooked/pureed/strained turkey, squash, lentils, rice, kale, blueberries, avocado, olive oil, and something in the dairy family (sorry, not Kosher!) is going on the menu.
Sylvie looks like a little drama queen in a big big bed. On hand backwards across her forehead as if to say, "I feel faint!" She was actually pretty nice to the nurses today even when they fixed up the port that had been inactive since Saturday's bleeding incident. We stood up, walked a little, did PT. Made princess sticker pictures from the princess book that Patrick picked out :-).
At 7 tonight, Ricky from Cozy's Cuts for Kids in Ridgewood is coming to cut Sylvie's hair. Yeay! Very excited. Thank you Mrs. Rickert for hooking it up. I'm sure Ricky doesn't remember us from last month but as soon as he sees Sylvie, he might have a flashback of Sylvie having a tantrum while her BFF Sammy looked on like a little beauty queen.
As for this fever, they really can't identify the cause but since Sylvie's blood counts are so low, they have to treat this very seriously. The nurse does not think this will result in another week's stay but perhaps an additional day or two. However, because Sylvie had a staph infection, there is always a risk of it returning.
Right now Siobahn from Tomorrow's Child/ Child Life is playing with Sylvie. She brought pink, purple & blue Play-Doh and a 'fun factory' set of toys. Sylvie is in heaven and I'm glad she's allowing someone new to befriend her. Small victories. One day at a time.
But as I was waiting for the not-so-fast Wi-Fi connection, Nurse Jessica took Sylvie's temperature and it's 102. I may be trying to find my spiritual center with a firm base of kindness and understanding but nowhere have I read that cursing is forbidden. So here's to a giant FUCK. When are we going to be able to leave the hospital? I may not have mentioned that when Sylvie has a temperature, she cannot leave the hospital room.
Dr. Rosen came by this morning for a visit. I was so thrilled to see him and review the past week. He laughed at the Coca-Cola/Hershey's Syrup/Food debacles of the past few days and promised to look into a solution.
So I'm staring at a plate of french fries and grilled cheese with a peach yogurt smoothie on my LEFT and to my RIGHT is a giant syringe of feeding tube slop. I do not think Sylvie will take so much as a bite out of her lunch and must acquiesce to the latter. I was pretty excited when the nutritionist came to talk to me today and explain that they knew I'd hem and haw at the 'dog food' food supplement but that it's really the best packaged stuff available. In addition, she said that I wanted to make my own concoction, that I could do so. I'm not sure I could get the calories high enough but cooked/pureed/strained turkey, squash, lentils, rice, kale, blueberries, avocado, olive oil, and something in the dairy family (sorry, not Kosher!) is going on the menu.
Sylvie looks like a little drama queen in a big big bed. On hand backwards across her forehead as if to say, "I feel faint!" She was actually pretty nice to the nurses today even when they fixed up the port that had been inactive since Saturday's bleeding incident. We stood up, walked a little, did PT. Made princess sticker pictures from the princess book that Patrick picked out :-).
At 7 tonight, Ricky from Cozy's Cuts for Kids in Ridgewood is coming to cut Sylvie's hair. Yeay! Very excited. Thank you Mrs. Rickert for hooking it up. I'm sure Ricky doesn't remember us from last month but as soon as he sees Sylvie, he might have a flashback of Sylvie having a tantrum while her BFF Sammy looked on like a little beauty queen.
As for this fever, they really can't identify the cause but since Sylvie's blood counts are so low, they have to treat this very seriously. The nurse does not think this will result in another week's stay but perhaps an additional day or two. However, because Sylvie had a staph infection, there is always a risk of it returning.
Right now Siobahn from Tomorrow's Child/ Child Life is playing with Sylvie. She brought pink, purple & blue Play-Doh and a 'fun factory' set of toys. Sylvie is in heaven and I'm glad she's allowing someone new to befriend her. Small victories. One day at a time.
Monday, February 23, 2009
Monday, Monday
The nutritionist who I met this morning dropped off literature on the new food that they are going be administering to Sylvie through her feeding tube. Exciting, I know, but I had to lobby hard for this small victory. Supposedly Compleat Pediatric is a real-food alternative to the non-food (???) Nutren which she's been getting for the past week. Both are Nestle products. I almost choked when I read the print-outs.
COMPLEAT PEDIATRIC: NUTRITIONALLY COMPLETE, BLENDERIZED TUBE FEEDING FORMULA FOR CHILDREN
Blenderized? I could really vomit. The base is chicken, cranberry juice, peas but essentially it's full of fillers, preservatives and crap that literally, my dog doesn't eat. Corn syrup solids, chicken puree with natural flavors, preservatives galore like BHA/BHT. I'm really not kidding when I say that Lucky's food is better. I made Michael read it and he gave me a "Please don't say anything to the doctors" kind of look. It's not like there's a better alternative. This IS the best alternative. It's not like I can boil organic chicken, kale, squash, lentils, brown rice and pulverize it with some flax and ask them to give to Sylvie. They would have me arrested or Michael would have me committed. This whole experience continues to present new challenges every single day!
Needless to say, I am ecstatic that we are moving to getting Sylvie back onto real food although being a chemo day, I had my doubts that she'd eat anything today. I even had my secret weapon here: Sibel. Since Sylvie will eat much more with Sibel than me. Around lunchtime, I fixed her a plate of avocado, cottage cheese, challah (thanks Sara!!) and ordered up some chicken fingers, fries, chicken noodle soup, chocolate peanut butter protein shake and vanilla pudding.
TOTAL FOOD CONSUMED: two teeny Sleeping Beauty spoonfuls of avocado. I feel horrible about the food going to waste; consider having Michael bring it home for Lucky. On the other hand, I've become addicted to Kozy Shack vanilla pudding. It's a far cry from Jen's creme brulee or mini-cheesecakes from Whole Foods (again thank you Jen), but works in a pinch.
They still don't know what's causing Sylvie's fever. I hope we get it under control tomorrow and that it doesn't delay our Sunday departure. I might need to cut Sylvie's hair myself tomorrow-- something ordinarily I would never try at home! Siobhan from Child Life told me to go Pixie and not Buzz in the event that Sylvie doesn't lose all her hair. That would kind of suck. My mom asked Michael if he was going to get a buzz cut too :-). Picture that if you will.
Cindy told me this story last week while we ate the rest of Laura's famous chili in styrofoam cups in the kitchen. She learned it in Sunday school:
**************************
PROVERB:
One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints, other times there was one only.
This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints, so I said to the Lord,
“You promised me Lord,
that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there has only been one set of footprints in the sand. Why, when I needed you most, have you not been there for me?”
The Lord replied, “The years when you have seen only one set of footprints, my child, is when I carried you.”
COMPLEAT PEDIATRIC: NUTRITIONALLY COMPLETE, BLENDERIZED TUBE FEEDING FORMULA FOR CHILDREN
Blenderized? I could really vomit. The base is chicken, cranberry juice, peas but essentially it's full of fillers, preservatives and crap that literally, my dog doesn't eat. Corn syrup solids, chicken puree with natural flavors, preservatives galore like BHA/BHT. I'm really not kidding when I say that Lucky's food is better. I made Michael read it and he gave me a "Please don't say anything to the doctors" kind of look. It's not like there's a better alternative. This IS the best alternative. It's not like I can boil organic chicken, kale, squash, lentils, brown rice and pulverize it with some flax and ask them to give to Sylvie. They would have me arrested or Michael would have me committed. This whole experience continues to present new challenges every single day!
Needless to say, I am ecstatic that we are moving to getting Sylvie back onto real food although being a chemo day, I had my doubts that she'd eat anything today. I even had my secret weapon here: Sibel. Since Sylvie will eat much more with Sibel than me. Around lunchtime, I fixed her a plate of avocado, cottage cheese, challah (thanks Sara!!) and ordered up some chicken fingers, fries, chicken noodle soup, chocolate peanut butter protein shake and vanilla pudding.
TOTAL FOOD CONSUMED: two teeny Sleeping Beauty spoonfuls of avocado. I feel horrible about the food going to waste; consider having Michael bring it home for Lucky. On the other hand, I've become addicted to Kozy Shack vanilla pudding. It's a far cry from Jen's creme brulee or mini-cheesecakes from Whole Foods (again thank you Jen), but works in a pinch.
They still don't know what's causing Sylvie's fever. I hope we get it under control tomorrow and that it doesn't delay our Sunday departure. I might need to cut Sylvie's hair myself tomorrow-- something ordinarily I would never try at home! Siobhan from Child Life told me to go Pixie and not Buzz in the event that Sylvie doesn't lose all her hair. That would kind of suck. My mom asked Michael if he was going to get a buzz cut too :-). Picture that if you will.
Cindy told me this story last week while we ate the rest of Laura's famous chili in styrofoam cups in the kitchen. She learned it in Sunday school:
**************************
PROVERB:
One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints, other times there was one only.
This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints, so I said to the Lord,
“You promised me Lord,
that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there has only been one set of footprints in the sand. Why, when I needed you most, have you not been there for me?”
The Lord replied, “The years when you have seen only one set of footprints, my child, is when I carried you.”
The Cancer Diet
Sample conversation, "Audra, you're so skinny! How'd you do it?" Answer: The Cancer Diet.
Sylvie was in great spirits last night and was even nice to Dr. Nita and the nurses. She was making My Pretty Pony sticker pages in the middle of the night and was quite excited about it. I was a little comatose. Unfortunately during her vitals check around 4 am, she had a little fever. There is no such thing as a little fever on Floor 5 East.
Big day for Sylvie. Physical Therapy to get her tush out of bed, a hair cut (hopefully) and chemo. It's Vincristine day (Red Devil). Her Music for Aardvarks teacher Sean was supposed to come but I postponed it until Wednesday.
PT went well if you consider making your already sick child more upset. We tortured Sylvie by making her stand up, walk then climb back into bed all by herself. That being said, it's essential that she move a lot. Rounds went ok. New pediatrician this week, Dr. Diamond. It's hard for anyone to compare to Sylvie's 'regular' pediatricians, so I realize that I already start off a little hostile. I have to remind myself that I'm now a zen warrior who does not get mad at people :-).
I got to meet the head nutritionist for ped onc today and we're cutting back on Sylvie's nose food and getting her back onto regular stuff. I asked her if there's a food-based magnesium alternative and they are looking into it. They thought since we have a natural food store that we were going to sneak in supplements and such so I think one of her tasks today was to warn me. I can understand that. That being said, she agreed that Hershey's syrup and Coke is not the best mixer. On the positive side, she said that there's a food-based nutrutional supplement that they can give Sylvie instead of her current off white stuff. So we're taking baby steps.
And the infectious disease doctor is very nice. I did overhear him ratting me out once about Sylvie not being up to date on immunizations but it's his job as an infectious disease specialist to drink the Kool-Aid and be pro-CDC and Vaccinations in general. Otherwise, he has a toddler the same age as Sylvie and he goes out of his way to not scare the heck out of me. Sylvie didn't even hit him when he examined her :-).
Michael is going to bring home some organic syrupy stuff which will make me feel much better than dosing Sylvie with Hershey's Caramel Syrup. i.e. flavored corn syrup. And Paula said there's actually a natural Pepsi, too.
I told Michael that I think we're redirecting our pre-cancer insecurities as the cause of Sylvie's cancer and that we should be mindful of that. We had been feeling like we wanted to spend more time with Sylvie and Sylvie had certainly been giving me hell about working BUT that doesn't mean that if we had been around a little more that we could have detected her cancer sooner. Also Michael thinks that if there exists Stage 1, 2 and 3 cancers then we missed her initial symptoms and were late in having her diagnosed. I don't agree whatsoever, nor do Sylvie's doctors. Her basic blood test still doesn't show liver enzymes as being that off despite one of the tumors being 9 cm by 8 cm and covering the entire right lobe. I have no medical answer for that but think perhaps it's easier to diagnose the earlier stages in younger kids who are a) smaller b) going to the doctor much more frequently and getting poked and prodded.
On the other hand, I realize that I project all of my issues and questions regarding faith, dharma and mortality so when I look at at little Sylvie, I can't help but think her illness is some kind of message or lesson. Which then gets me to, if you believe in a higher power, well what kind of higher power makes innocent children ill? My parents cantor seemed pretty absolved of this having anything to do with God. I told him I didn't believe in random acts of kindness or harm for that matter. He didn't budge. The rabbi, on the other hand, is praying for Sylvie at the Wailing Wall this week while attending a rabbinical convention in Israel. Which brings me to... if praying to a source makes her better then is that source responsible for her illness? Here lies my big unanswered question.
OK ordering Sylvie a pizza, chocolate peanut butter protein shake and some milk for her Kashi O's. And organic avocado that we brought from home. Let's hope she eats 3 bites. Then I'll head home and go for a run and try to forget about this for about 9 songs on my iPod or 40 minutes.
Sylvie was in great spirits last night and was even nice to Dr. Nita and the nurses. She was making My Pretty Pony sticker pages in the middle of the night and was quite excited about it. I was a little comatose. Unfortunately during her vitals check around 4 am, she had a little fever. There is no such thing as a little fever on Floor 5 East.
Big day for Sylvie. Physical Therapy to get her tush out of bed, a hair cut (hopefully) and chemo. It's Vincristine day (Red Devil). Her Music for Aardvarks teacher Sean was supposed to come but I postponed it until Wednesday.
PT went well if you consider making your already sick child more upset. We tortured Sylvie by making her stand up, walk then climb back into bed all by herself. That being said, it's essential that she move a lot. Rounds went ok. New pediatrician this week, Dr. Diamond. It's hard for anyone to compare to Sylvie's 'regular' pediatricians, so I realize that I already start off a little hostile. I have to remind myself that I'm now a zen warrior who does not get mad at people :-).
I got to meet the head nutritionist for ped onc today and we're cutting back on Sylvie's nose food and getting her back onto regular stuff. I asked her if there's a food-based magnesium alternative and they are looking into it. They thought since we have a natural food store that we were going to sneak in supplements and such so I think one of her tasks today was to warn me. I can understand that. That being said, she agreed that Hershey's syrup and Coke is not the best mixer. On the positive side, she said that there's a food-based nutrutional supplement that they can give Sylvie instead of her current off white stuff. So we're taking baby steps.
And the infectious disease doctor is very nice. I did overhear him ratting me out once about Sylvie not being up to date on immunizations but it's his job as an infectious disease specialist to drink the Kool-Aid and be pro-CDC and Vaccinations in general. Otherwise, he has a toddler the same age as Sylvie and he goes out of his way to not scare the heck out of me. Sylvie didn't even hit him when he examined her :-).
Michael is going to bring home some organic syrupy stuff which will make me feel much better than dosing Sylvie with Hershey's Caramel Syrup. i.e. flavored corn syrup. And Paula said there's actually a natural Pepsi, too.
I told Michael that I think we're redirecting our pre-cancer insecurities as the cause of Sylvie's cancer and that we should be mindful of that. We had been feeling like we wanted to spend more time with Sylvie and Sylvie had certainly been giving me hell about working BUT that doesn't mean that if we had been around a little more that we could have detected her cancer sooner. Also Michael thinks that if there exists Stage 1, 2 and 3 cancers then we missed her initial symptoms and were late in having her diagnosed. I don't agree whatsoever, nor do Sylvie's doctors. Her basic blood test still doesn't show liver enzymes as being that off despite one of the tumors being 9 cm by 8 cm and covering the entire right lobe. I have no medical answer for that but think perhaps it's easier to diagnose the earlier stages in younger kids who are a) smaller b) going to the doctor much more frequently and getting poked and prodded.
On the other hand, I realize that I project all of my issues and questions regarding faith, dharma and mortality so when I look at at little Sylvie, I can't help but think her illness is some kind of message or lesson. Which then gets me to, if you believe in a higher power, well what kind of higher power makes innocent children ill? My parents cantor seemed pretty absolved of this having anything to do with God. I told him I didn't believe in random acts of kindness or harm for that matter. He didn't budge. The rabbi, on the other hand, is praying for Sylvie at the Wailing Wall this week while attending a rabbinical convention in Israel. Which brings me to... if praying to a source makes her better then is that source responsible for her illness? Here lies my big unanswered question.
OK ordering Sylvie a pizza, chocolate peanut butter protein shake and some milk for her Kashi O's. And organic avocado that we brought from home. Let's hope she eats 3 bites. Then I'll head home and go for a run and try to forget about this for about 9 songs on my iPod or 40 minutes.
Sunday, February 22, 2009
Sleeping Beauty
Watching Sleeping Beauty for about the thousandth time. Sylvie's sleeping. Or I'd be concurrently reading it, too. Michael and I each have our own favorite parts. Mine is when Maleficent says, "you will prick your finger on the needle of the spinning wheel and DIE!" except when I read it aloud, I never say that word.
Sylvie had a pretty good day except for the nose picking incident. Her blood counts are a little low which means the average nose picking can be a mess to the tenth power. Sylvie got her first platelet transfusion today to get her numbers higher. Tomorrow's a chemo day.
Instead of mixing her magnesium with Coca Cola, they are using Hershey's caramel syrup. I'm not sure which is "worse" but I'm just going with it until Michael or his brother Ed can come home with something that does not contain high fructose corn syrup (you know, "THE DEVIL") and honestly, I've read that sugars and cancer do not mix well.
Lots of friends and family today. (Thanks everyone for coming!). Sylvie continued to kick out Dr. Nipa this morning. Karen from The Whole Child came dropped by to bring me recipes for nutritious and high caloric shakes for Sylvie. I can't wait!!!! I need to get a bisphenol-free cup for Sylvie to disguise the healthy things that I'll be adding in. Adding in when there is no longer a tube up her nose.
Michael's mom stayed over last night so that Michael and I could have a night together. We haven't had even a moment of privacy in the past 10 days. We got much needed sleep but were both wide awake by 6 am. We shared all of our fears with each other probably in more detail than before. Michael's are more rational than mine but they're equally consuming.
Lucky and OJ were excited for the company. I think OJ has gained weight with all of his sympathy feedings. He's definitely closer to 20 pounds than 18. Lucky on the other hand, isn't getting Sylvie's scraps (who knew a dog would like avocado and bell peppers?) so I made her a scrambled egg and dropped some other food on the floor for old times sake.
I'm staying over tonight. Michael, tomorrow. If Sylvie gets sick from her chemo though, I'll probably stay.
Damn would like to see the Oscars but will settle on a wrap-up tomorrow. I hope and am pretty confident that Slumdog Millionaire will at least one Oscar. Go Mumbai! Sad state of affairs but the only films I saw last year include Slumdog, Tropic Thunder, Dark Night, Man on Wire and Twilight. That's really pathetic.
On that note-- time to wake Sylvie for more magnesium. You know what they say... never wake a sleeping bear.
Sylvie had a pretty good day except for the nose picking incident. Her blood counts are a little low which means the average nose picking can be a mess to the tenth power. Sylvie got her first platelet transfusion today to get her numbers higher. Tomorrow's a chemo day.
Instead of mixing her magnesium with Coca Cola, they are using Hershey's caramel syrup. I'm not sure which is "worse" but I'm just going with it until Michael or his brother Ed can come home with something that does not contain high fructose corn syrup (you know, "THE DEVIL") and honestly, I've read that sugars and cancer do not mix well.
Lots of friends and family today. (Thanks everyone for coming!). Sylvie continued to kick out Dr. Nipa this morning. Karen from The Whole Child came dropped by to bring me recipes for nutritious and high caloric shakes for Sylvie. I can't wait!!!! I need to get a bisphenol-free cup for Sylvie to disguise the healthy things that I'll be adding in. Adding in when there is no longer a tube up her nose.
Michael's mom stayed over last night so that Michael and I could have a night together. We haven't had even a moment of privacy in the past 10 days. We got much needed sleep but were both wide awake by 6 am. We shared all of our fears with each other probably in more detail than before. Michael's are more rational than mine but they're equally consuming.
Lucky and OJ were excited for the company. I think OJ has gained weight with all of his sympathy feedings. He's definitely closer to 20 pounds than 18. Lucky on the other hand, isn't getting Sylvie's scraps (who knew a dog would like avocado and bell peppers?) so I made her a scrambled egg and dropped some other food on the floor for old times sake.
I'm staying over tonight. Michael, tomorrow. If Sylvie gets sick from her chemo though, I'll probably stay.
Damn would like to see the Oscars but will settle on a wrap-up tomorrow. I hope and am pretty confident that Slumdog Millionaire will at least one Oscar. Go Mumbai! Sad state of affairs but the only films I saw last year include Slumdog, Tropic Thunder, Dark Night, Man on Wire and Twilight. That's really pathetic.
On that note-- time to wake Sylvie for more magnesium. You know what they say... never wake a sleeping bear.
Saturday, February 21, 2009
Magnesium was discovered by Sir Humphry Davy in 1808
I couldn't wait for 6 am so that I could officially get up. Uneventful night. More puking from magnesium (more on this later), some antibiotics, a couple of vital sign checks and two messy diaper changes that upset Sylvie more than me. Nice and drafty on my little couch bed, even beneath two blankets folded 4x each. Sylvie alternated between her favorite pink comforter from the Company Store and her cupcake blanket made by Luna Lou. Besides being feisty and fiery, Sylvie's VERY dramatic. There's no such thing as a simple request with Sylvie. There's usually some whining, maybe some fake gasping. Hence at 3 am hearing, "MY CUPCAKE BLANKET!!!!! MY CUPCAKE BLANKET" I interpret as "May I please switch to my cupcake blanket?" in the hopes that this is just a phase.
So magnesium. The Cisplatin chemo drug depletes her body of magnesium (and a host of other lovely side effects) so Sylvie needs to get an oral supplement 4x a day. It's very important. It also makes her puke. The chemo has not made her vomit once, but magnesium-- twice. Lovely. Dr. H, the pediatrician in charge for the week came in to deliver some great news-- Sylvie needs to double her magnesium intake effective immediately! Lovely. He suggested mixing it in Coke! He asked if Sylvie drinks Coke. I wanted to say, "Are you really a pediatrician? She's two and a half!" So here we are the hippie family and our 100% breastfed daughter is getting baby formula fed to her via a tube through her nose and she now gets to drink high fructose corn syrup (which I literally call the DEVIL) laden Coke mixed with her magnesium. We might need to ask the hospital to switch to Pepsi or Paula might get mad at us.
Sidebar 1: I know that my mom has secretly given Sylvie soda and we had a little talk about it a few months ago. When we were in Captiva Island in December, Sylvie wanted Michael's Diet Coke ("Daddy Drink") so badly that we had to hide it and then leave the restaurant. Thanks mom! (she's reading this and knows I love her very much). So we know that Sylvie likes Coke.
Sidebar 2: Michael just told me that the 49ers might sign Michael Vick while he's in prison. I'm trying to be really non-violent and non-vindictive so I'm not sure how to deal with my hatred of Michael Vick or anyone else who abuses or harms animals. I told Michael that he has to officially abandon supporting the team if that becomes a reality.
OK going to pick up my friend Suzi from the train. Sylvie's obsessed with her music. I hope Sylvie recognizes her and is nice. Right now Sylvie is sleeping.
So magnesium. The Cisplatin chemo drug depletes her body of magnesium (and a host of other lovely side effects) so Sylvie needs to get an oral supplement 4x a day. It's very important. It also makes her puke. The chemo has not made her vomit once, but magnesium-- twice. Lovely. Dr. H, the pediatrician in charge for the week came in to deliver some great news-- Sylvie needs to double her magnesium intake effective immediately! Lovely. He suggested mixing it in Coke! He asked if Sylvie drinks Coke. I wanted to say, "Are you really a pediatrician? She's two and a half!" So here we are the hippie family and our 100% breastfed daughter is getting baby formula fed to her via a tube through her nose and she now gets to drink high fructose corn syrup (which I literally call the DEVIL) laden Coke mixed with her magnesium. We might need to ask the hospital to switch to Pepsi or Paula might get mad at us.
Sidebar 1: I know that my mom has secretly given Sylvie soda and we had a little talk about it a few months ago. When we were in Captiva Island in December, Sylvie wanted Michael's Diet Coke ("Daddy Drink") so badly that we had to hide it and then leave the restaurant. Thanks mom! (she's reading this and knows I love her very much). So we know that Sylvie likes Coke.
Sidebar 2: Michael just told me that the 49ers might sign Michael Vick while he's in prison. I'm trying to be really non-violent and non-vindictive so I'm not sure how to deal with my hatred of Michael Vick or anyone else who abuses or harms animals. I told Michael that he has to officially abandon supporting the team if that becomes a reality.
OK going to pick up my friend Suzi from the train. Sylvie's obsessed with her music. I hope Sylvie recognizes her and is nice. Right now Sylvie is sleeping.
Friday, February 20, 2009
Red Devil
I learned today from a blog hosted by a fellow music industry veteran has for his ill son that the nickname for the chemotherapy drug Vincristine is "Red Devil." I think there are websites where people trade chemo recipes but since
a). I'm new at this and
b). spend 15-24 hours a day in the hospital with it's S L O W wi-fi and
c). Sylvie's cancer is so rare that I'm not sure there are enough kids/families out there to warrant such a message board. More importantly,
d). I'm not a doctor (but I play one on TV- joke)
So I thought you might be interested to know Sylvie's cocktail which was determined by Sylvie's team and apparently pediatric oncologists across the country. I think there's a study at Emory that determined the benefits of using 4 chemo drugs instead of 3.
Day 1: CISPLATIN (Cis-platinum)
DOXO (Doxorubicin or adriamycin)
Day 2: DOXO
Day 3: VINCRISTINE, 5-FLU
Day 10: VINCRISTINE
Day 17: VINCRISTINE
Vincristine is red. It would cause a chemical burn if it touched your skin. Or Sylvie's. The nurses wear protective gear. For 48 hours after chemo, especially the Vincristine, we wear special purple rubber gloves when changing Sylvie's diaper. Note to self: Never ever buy or wear purple gloves.
This is called 1 round of chemo over a 21 day cycle. Sylvie is doing 4 cycles which wrapes up around late April. If her blood counts get low, they will move to a 28 day cycle.
Zofran is administered before chemo to prevent nausea. My sister-in-law, like many pregnant women, had to take this during her first pregnancy to combat extreme nausea. Sylvie also gets a shot of GCSF daily (I am learning how to do this and hopefully Michael will soon or Sylvie will not like me very much) to build her blood count as well as magnesium since the chemo depletes it and Allopurinol. The latter is a drug used primarily to treat hyperuricemia (excess uric acid in blood plasma).
a). I'm new at this and
b). spend 15-24 hours a day in the hospital with it's S L O W wi-fi and
c). Sylvie's cancer is so rare that I'm not sure there are enough kids/families out there to warrant such a message board. More importantly,
d). I'm not a doctor (but I play one on TV- joke)
So I thought you might be interested to know Sylvie's cocktail which was determined by Sylvie's team and apparently pediatric oncologists across the country. I think there's a study at Emory that determined the benefits of using 4 chemo drugs instead of 3.
Day 1: CISPLATIN (Cis-platinum)
DOXO (Doxorubicin or adriamycin)
Day 2: DOXO
Day 3: VINCRISTINE, 5-FLU
Day 10: VINCRISTINE
Day 17: VINCRISTINE
Vincristine is red. It would cause a chemical burn if it touched your skin. Or Sylvie's. The nurses wear protective gear. For 48 hours after chemo, especially the Vincristine, we wear special purple rubber gloves when changing Sylvie's diaper. Note to self: Never ever buy or wear purple gloves.
This is called 1 round of chemo over a 21 day cycle. Sylvie is doing 4 cycles which wrapes up around late April. If her blood counts get low, they will move to a 28 day cycle.
Zofran is administered before chemo to prevent nausea. My sister-in-law, like many pregnant women, had to take this during her first pregnancy to combat extreme nausea. Sylvie also gets a shot of GCSF daily (I am learning how to do this and hopefully Michael will soon or Sylvie will not like me very much) to build her blood count as well as magnesium since the chemo depletes it and Allopurinol. The latter is a drug used primarily to treat hyperuricemia (excess uric acid in blood plasma).
Dial C for Cancer
We brought Sylvie to the pediatrician Tuesday February 11 when she complained about a tummy ache and seemed very lethargic. I had talked to her pediatrician Dr. Larry Rosen on the phone by 7 am that morning and we were eager to see Dr. Maya Castillo. Dr. Castillo felt Sylvie's abdomen and immediately sent us to the
pediatric ER at Hackensack University Medical Center for a CTscan and bloodwork because Sylvie's liver felt swollen and she looked anemic.
I thought maybe it was her appendix (no fever though), or maybe salmonella from touching a lizard at a birthday party the prior weekend (I have a vivid imagination) or lastly, Hepatitis B since she hasn't been vaccinated for it and it would be just our luck for her to become afflicted with it. My husband, having stared at Dr. Castillo for the entire visit, thought otherwise. We drove in silence to the hospital. Fast forward a lot of waiting and an IV because Sylvie was so dehydrated that when she cried, she couldn't even produce any tears.
To say we were shocked, horrified, devastated when Dr. Michael Harris walked into our little ER suite and introduced himself as the head of Pediatric Oncology is an understatement. When he ordered a second scan of her lungs we went through the whole range of emotions all over again. Now it’s Dr. Harris who we are entrusting with the care and cure of feisty little Sylvie.
Here the journey begins.
***
Sylvie’s being cared for by an incredible team at Hackensack University Medical Center led by the aforementioned Dr. Michael Harris who is the head of Pediatric Oncology.
Sylvie’s condition has been diagnosed as stage 4 hepatoblastoma tumors on her left and right lobes of her liver. There is also 1 lesion on each lung. Treatment includes an aggressive chemotherapy program comprised of a combination of 4 drugs. She will undergo 4 cycles of chemo ending late April with the surgery in May. Dr. Harris’s goal is Sylvie to be up and running (and potty trained) this summer. The great news is that Sylvie’s cancer is curable.
Almost all pediatric cancer hospitals in the US are part of the the Children’s Oncology Group (COG) cooperative group created with the mission of studying childhood and adolescent cancer, sharing data, treatments, trials and so forth. Including Sylvie’s cancer. In essence, Sylvie’s diagnosis and treatment has been evaluated by pediatric oncologists all over the country.
We had our first "big meeting" with Sylvie's team last Friday, Feburary 13th (and my friends make fun of me for being superstitious???). Sylvie will most likely need a liver transplant when all this is done because one of the tumors is in a 'difficult' location for lack of better words. Hearing that was only slightly less terrifying than our first introduction to Sylvie’s medical team and you can bet it reduced us to puddles of tears, however we have been reassured how different pediatric cancers are in that:
1. kids are more resilient than adults and
2. many pediatric cancers are curable and
3. children have an easier time with organ transplants, especially the liver.
Dr. Harris has spoken to numerous pediatric oncologists and surgeons (their are 5 surgeons in the US who perform the procedure on children) and has been overwhelmingly directed to Dr. Steven Dunn, chief of the division of solid organ transplantation for the Nemours Children’s Hospital at the Alfred I. du Pont Hospital for Children in Wilmington (www.nemours.org). They sent Sylvie’s CTscans to Dr. Dunn we hope to meet with him soon. We’ve received a lot of questions
regarding pediatric liver transplants which we don’t know the answers to yet. Our immediate task is Sylvie’s chemo. One day at a time.
We’ve been advised numerous times to not Google Sylvie’s condition because the information available online is very outdated and inaccurate. There are more recent studies that have yet to be published. That being said, of course we’ve scared ourselves silly by Googling, please save yourself the effort.
We are so fortunate to have such incredibly supportive friends and family not to mention Sylvie’s little friends and classmates. We could not have made it through the past ten days if it wasn’t for their constant presence, shoulders to cry on often, physician referrals, A+ blood donations, prayers from at least 6 religions 9 (and counting!) that we can think of, goodie bags and incredible home cooked meals, princess presents galore and let’s not forget help around our house and with Lucky.
Michael and I are bracing ourselves for the next step—caring for Sylvie at home and her recovery. On that note Sylvie has a staph infection so her return home has been delayed to Sunday 3/1 so she can receive a full course of antibiotics.
Sylvie is full of fire and proceeds to tell 90% of the hospital staff and 90% of her visitors to “GO AWAY,” “LEAVE ME ALONE,” “I FEEL GOOD,” “DON’T TOUCH ME!” and is quite a hit on the 5th floor. She has gone so far as to clock one of the night nurses on the head with her Disney princess camera.
As my friend Gail told me, we aren't given more than we can handle. I reflect on that often.
pediatric ER at Hackensack University Medical Center for a CTscan and bloodwork because Sylvie's liver felt swollen and she looked anemic.
I thought maybe it was her appendix (no fever though), or maybe salmonella from touching a lizard at a birthday party the prior weekend (I have a vivid imagination) or lastly, Hepatitis B since she hasn't been vaccinated for it and it would be just our luck for her to become afflicted with it. My husband, having stared at Dr. Castillo for the entire visit, thought otherwise. We drove in silence to the hospital. Fast forward a lot of waiting and an IV because Sylvie was so dehydrated that when she cried, she couldn't even produce any tears.
To say we were shocked, horrified, devastated when Dr. Michael Harris walked into our little ER suite and introduced himself as the head of Pediatric Oncology is an understatement. When he ordered a second scan of her lungs we went through the whole range of emotions all over again. Now it’s Dr. Harris who we are entrusting with the care and cure of feisty little Sylvie.
Here the journey begins.
***
Sylvie’s being cared for by an incredible team at Hackensack University Medical Center led by the aforementioned Dr. Michael Harris who is the head of Pediatric Oncology.
Sylvie’s condition has been diagnosed as stage 4 hepatoblastoma tumors on her left and right lobes of her liver. There is also 1 lesion on each lung. Treatment includes an aggressive chemotherapy program comprised of a combination of 4 drugs. She will undergo 4 cycles of chemo ending late April with the surgery in May. Dr. Harris’s goal is Sylvie to be up and running (and potty trained) this summer. The great news is that Sylvie’s cancer is curable.
Almost all pediatric cancer hospitals in the US are part of the the Children’s Oncology Group (COG) cooperative group created with the mission of studying childhood and adolescent cancer, sharing data, treatments, trials and so forth. Including Sylvie’s cancer. In essence, Sylvie’s diagnosis and treatment has been evaluated by pediatric oncologists all over the country.
We had our first "big meeting" with Sylvie's team last Friday, Feburary 13th (and my friends make fun of me for being superstitious???). Sylvie will most likely need a liver transplant when all this is done because one of the tumors is in a 'difficult' location for lack of better words. Hearing that was only slightly less terrifying than our first introduction to Sylvie’s medical team and you can bet it reduced us to puddles of tears, however we have been reassured how different pediatric cancers are in that:
1. kids are more resilient than adults and
2. many pediatric cancers are curable and
3. children have an easier time with organ transplants, especially the liver.
Dr. Harris has spoken to numerous pediatric oncologists and surgeons (their are 5 surgeons in the US who perform the procedure on children) and has been overwhelmingly directed to Dr. Steven Dunn, chief of the division of solid organ transplantation for the Nemours Children’s Hospital at the Alfred I. du Pont Hospital for Children in Wilmington (www.nemours.org). They sent Sylvie’s CTscans to Dr. Dunn we hope to meet with him soon. We’ve received a lot of questions
regarding pediatric liver transplants which we don’t know the answers to yet. Our immediate task is Sylvie’s chemo. One day at a time.
We’ve been advised numerous times to not Google Sylvie’s condition because the information available online is very outdated and inaccurate. There are more recent studies that have yet to be published. That being said, of course we’ve scared ourselves silly by Googling, please save yourself the effort.
We are so fortunate to have such incredibly supportive friends and family not to mention Sylvie’s little friends and classmates. We could not have made it through the past ten days if it wasn’t for their constant presence, shoulders to cry on often, physician referrals, A+ blood donations, prayers from at least 6 religions 9 (and counting!) that we can think of, goodie bags and incredible home cooked meals, princess presents galore and let’s not forget help around our house and with Lucky.
Michael and I are bracing ourselves for the next step—caring for Sylvie at home and her recovery. On that note Sylvie has a staph infection so her return home has been delayed to Sunday 3/1 so she can receive a full course of antibiotics.
Sylvie is full of fire and proceeds to tell 90% of the hospital staff and 90% of her visitors to “GO AWAY,” “LEAVE ME ALONE,” “I FEEL GOOD,” “DON’T TOUCH ME!” and is quite a hit on the 5th floor. She has gone so far as to clock one of the night nurses on the head with her Disney princess camera.
As my friend Gail told me, we aren't given more than we can handle. I reflect on that often.
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