January 31, 2000 to December 10, 2000
Tuesday Feb. 1, 2000 � The day that our lives changed forever, there is no going back.� Lauren has Cancer.� The chest X-ray done last night showed something, and the MRI this morning confirmed it.� A large tumor in Lauren's chest was found and it "oozed" out and was wrapped around Lauren�s spinal column.� Now we know why she couldn�t walk�..poor baby.� Whirl wind of a day.� The cancer is called Neuroblastoma and the doctors are telling us it is Stage 3.� Lauren is in PICU recuperating from the surgery.� So many tests have to be done now.� A bone scan, another CAT scan, N-myc test, MIBG scan, and a bone marrow test.� All of these will tell us if the cancer has spread.� If it did, she goes to a stage 4��please God, make them come back negative.
Wednesday Feb. 2, 2000 - Lauren�s bone scan is scheduled for today.� We called everyone pretty much last night.� Lauren is on so many prayer lists and friends and family are feeling helpless wondering as we are as to what comes next.� Deb is holding up, Bill is too. The surgeon who did Lauren�s first surgery came in today and said that Lauren will be able to walk again!� We were so happy to hear that!� Timmy went to stay with Bill�s parents.� He doesn�t really know what is going on, no one has mentioned to him yet that Lauren has cancer.� He just knows his baby sister is sick and that she can�t walk.� My fingers and toes are crossed that this bone scan comes back normal.� Bill is going to stay at the hospital tonight, Lauren is moved to a �step � down� room, and Debbie is going to try and get some much needed sleep at home tonight.� Mom and I will head back to the hospital in the morning.
Thursday, Feb. 3, 2000 � Good news!!! The bone scan and CAT scan have come back negative.� So, Lauren gets to stay at a Stage 3 right now!! Yippy!� Strange how good news and cancer can be in the same sentence, but this indeed is great news!�� I stopped looking things up on the web last night; I don�t want to see percentages right now of survival rates and prognosis�s, I just want Lauren to be well.� Tomorrow is the second surgery to remove the rest of the tumor in her chest.� A long recovery from this surgery is expected.� She will have a chest tube and all of that.� I am worried sick, but will feel so much better once the entire tumor is gone.� Lauren is having terrible �tantrums� or �meltdowns� as we are calling them now.� The steroids, the Morphine, the pain and situation of course are all contributing to it.� The meds are making her itchy and she is clawing at her face.� Benadryl will be given now with a new med; hopefully it will help her out a bit.� I am going to sleep at the hospital tonight with Deb.� Bill headed down to his parent�s house to surprise Timmy in the morning.� He will love that!
Friday Feb. 4, 2000 � It seemed like forever waiting for 2:00pm for her surgery and the surgery didn�t go as we all hoped.� Deb and I headed back to the hotel to take a shower 2 hours into her surgery, and we got a call from Mom, to get back to the hospital.� Lauren was put into PICU with a chest tube.� Seems that the tumor has attached itself to a muscle running along Lauren�s ribs.� These �fingers� are holding on tight and tying to remove the tumor would do more damage then good.� Dr. Kline and Dr. Britton came to talk to us in the waiting room.� We were so pissed that the tumor has to stay in her.� Such a letdown!� They explained that the Chemo will hopefully shrink the tumor down enough to release those fingers and then the surgeons can go back and take it out.� Please God let that be the case!� Family and friends are still praying for her, she is on even more prayer lists then yesterday, God is sure to get bombarded with Lauren messages!� Hey, a little more good news came, the doctors said that the N-myc prelim came back negative!� Yippy!!!
Saturday Feb. 5, 2000 � If this is a dream, someone needs to wake me up!� Lauren had a good morning.� She actually sat on my lap in PICU watching Rug Rats and eating M&Ms and Gold Fish pretzel crackers!� We sang songs and blew raspberries at the nurses.� Heehee what a little bugger she is!� She is moving her legs around more and more, but she still doesn�t like to be touched.� Wonder if she is in pain or if the sensation feels funny to her, don�t know.�� Afternoon wasn�t so good with her, although she was well enough to be put back on the step down unit, the meds are making her itch again and the meltdown was a long one today.� We rearranged her room so her crib is now in a better position to see the TV.� Now she can lay down and watch her Rug Rats.� She is free from wires and tubes and monitors, now at least she has more freedom to move around.� I am still hoping this is all a dream and that someone is going to wake us all up.� I am taking tomorrow �off� I am just too exhausted and wont be much good to Debbie or Lauren.
Sunday Feb. 6, 2000 � I have spent all morning bookmarking web sites and reading as much as my brain will stand.� I have walked away numerous times from the computer.� I keep seeing survival rates from 10 % to 75 %.� I am trying to just look at the Stage that she has, but find that the sites throw it all into one and I keep getting confused then pissed.� I found one site that has stories of children with Neuroblastoma.� I find myself reading them with tears.� Most of the children have lost their battle with the cancer.� A lot of the stories are of Stage 4 kids.� I have a tad more comfort because Lauren is still considered a Stage 3.� I haven�t called over to the hospital yet.� No news is good news right now for me.� Hope Deb and Bill are hanging in there.� We are all trying so hard to stay strong and focused because we know we haven�t even begun the battle.� Seems like my life is on hold.�� I wish I didn�t have to go back to work.� I would rather spend every single day with them.� I am worried if I don�t see Lauren today she could be gone tomorrow.� Man, is it going to feel like this all the time?�� I can�t even imagine what Deb and Bill feel like.� To think it could be worse then what I am feeling now just sucks!
- more good news this afternoon, Lauren is on her way home from the hospital!� At least now she will be a bit more comfy in her own house.� MIBG Scan will be done as an outpatient this week.
Monday Feb. 7, 2000 - I walked into Deb's house today to find Lauren on the recliner in her living room.� She was laughing and talking, she looked so "normal."� For a brief moment I forgot that she has cancer.� She was crawling around the floor and had the best smile on her face.� It was great!� We got some good news tonight from Dr. Kline, Lauren's bone marrow test came back and it is NEGATIVE!!!� Yippy Skippy for Lauren.� One more test in keeping her a Stage 3.� Reality set in a bit today with me going to work.� It was a totally non productive day, but at least more normal then the daysfor� for� the last week.� Bought some new fish for my classroom's fish tank, Lauren would love them.� Heading over to see Timmy tomorrow, he wasn't home this afternoon because he headed back to his preschool today.� Deb told him Lauren has cancer, but he doesn't really understand it.� That is ok, he will realize soon enough that Lauren is really sick.� He knows his dog Snowby had cancer, and that Dr. Del took the tumor outbut he isn't putting it together with Lauren yet.� Everyone is wondering how to help us, and I don't have an answer to give them.� Take away Lauren's cancer or wake us up is what enters my mind when they ask.� Is that too much to ask?.........yea, I thought so too.
Wednesday Feb. 9, 2000 - A big congratulations to Timmy for being promoted last night in his Karate class.� Way to go Tim....a yellow belt now.� I better watch out or you will be able to kick Aunt Nean's butt soon! ;o)� Remember you promised to take care of me when I get old so be gentle.....but hey...you passed that on to Lauren when she was born didn't you!!� HaHa.�� It was so good to get to play with the two of them this morning before work.� I dropped off the all important box of Fruity Pebbles for Timmy and the Rugrats window stickers and 2 bags of M&Ms that Jane sent.� I think Jane is contacting M&M Mars Lauren....so you should be set for at least the next 10 years.....*smile*� Great news - the N-myc test that we got the prelims back for was also done here, and that one came in NEGATIVE!� God, I love that word....NEGATIVE!!!� MIBG scan was done today and another one will be done tomorrow and I am confident that those will come back NEGATIVE as well!!� Looks like chemo will start on Monday.� Not sure of how long and how many rounds, but we will know that soon enough.� I asked Lauren today if she went to the hospital for more tests yesterday and she said "Yiiissss" (yes) and I asked if she got more boo boos.....she said "Yiiisss"� I would take all of them away from you if I could baby, one day you will know that.� But you are strong and brave and such a fighter soon you will be able to say "No Thank You" to all of this.� Jake Chloe and Kenzie say a big hello to you Lauren.....Chloe wants to know if she can steal your paddyy?� I told her no, but you know Chloe....she doesn't take No for an answer.� Will see you and Timmy tomorrow morning, I promised him a breakfast date.� Hey Tim.....have the Fruity Pebbles out on the table waiting for Aunt Nean!
Thursday Feb. 10, 2000 -�� Another MIBG tomorrow, I thought 2, but protocol says 3 are needed.� Poor Lauren will have to wait for breakfast again tomorrow.� She was licking the M&M counting book that we were reading this morning and even tried to get Grandma to slip her some food!� Deb told me that she is going to bring Lauren in to get her hair cut, this way it wont be so dramatic when she looses her hair from the Chemo.� I thought that was a good idea even though I love those curls.� Tim sorta mentioned that he wasnt planning on going bald and if anyone made fun of his sister when she has no hair he will be very mad.� Guess I cant encourage him to kick some ass, but well, I wont stand in his way either *wink* !�� A memo went around my work today about the "Lauren Hour," mom and I were so touched to see that.� Deb and Bill are getting lots of offers of help, I keep saying yes to the countless emails asking if they can cook for the family.� I figure Deb HATES to cook when things are normal, goodness she will forget where the stove is through this ordeal that's for sure!!! (love ya sis! *giggle*!) A fund has been set up for Lauren by a person who doesnt want her name to be mentioned, I will get that info up on the webpage tomorrow when I get all the details.� And a last and wonderful note to add........Lauren pulled herself up today!!!� A big big YIPPY SKIPPY for LAUREN.� You will be up and walking again soon kiddo!� :o)� Hey.....I know I told you I love ya this morning, but here is another one for your dreams tonight.......LOVE YA !
Friday Feb. 11, 2000 - I just got some really crappy news from Deb on the phone.� That test from LA the one we were waitng for came back different then that same test that was ran here in NJ.� We were holding our breath waiting to hear if the N-myc test was unamplified, which the NJ one was, and the prelim from LA was.......that is still true, however we just got few new words thrown at us.� Histology Unfavorable and Histology Favorable.� Our lucky streak has ended with this one.� Dr. Kline called Deb with news from LA, it came back histology unfavorable.� This changes everything.� It bumps Lauren to a high risk stage 3 and she will have to get the most aggressive Chemo along with the bone marrow transplant.� It is the same protocol as if she was a Stage 4.� I was just reminded by my mother that it could be worse, she could have the cancer in her marrow, in her bones, more tumors and yea know what.......right now I am not seeing it that way.� All I am seeing is that she went from intermediate risk to high risk.� Deb mentioned the low end of high risk, but� the low end of high risk and high risk isn't a great enough distance for me.� Grrrrrrrr I hate surprises......just hate them. At the house today Lauren, I still couldnt "see" cancer when looking at you ......all I could see is my littlest niece playing with her toys and laughing at her goofy Aunt Nean.� Loves and Hugs to you while you sleep.......I can't write anymore tonight.
Saturday Feb. 12, 2000 - Thank you for letting Uncle Dylan and I� come over to play for a bit today.� I loved sharing the Gold Fish Prezels and soda with you.� I want to share a little secret with you Lauren, your Aunt Nean really has a hard time with things she has no control over.� This is the BIGGEST thing so far in my life that I have ever felt completly out of control with and I HATE that, but on the way home with Uncle Dylan I decided I will promise you something.� I promise to let go of this need I have to somehow control your cancer and just love each moment I get to spend with you.� Big hugs to you and Timmy and I will see you tomorrow morning for our trip to the hospital to meet with Dr. Kline.� We get to cause havoc while Mommy and Daddy talk with your Oncologist!� Humm wonder what kind of trouble we can get into! ;o)� Don't forget the M&Ms!!!
Sunday Feb. 13, 2000 - Was't a bad visit to see the doctors today!� We found out that Lauren will receive about 5 rounds of Chemo along with a BMT.� Tomorrow she heads into the hospital and the Chemo should start on Tuesday.� Boy Lauren Dr. Kline and Dr. Britton have great senses of humor and we found out that both of them want Labrador Retrievers.....so what can I say besides... we'll keep em'!� Dr. Britton already came up with names for her Labs and I think we should steal those names for ourselves.� When you get older, you and I will get littermates.� I will name mine Abercrombie and you can name your Fitch!� We can then thank Dr. Britton for the idea! :o)�� Sleep well tonight and remember that we all love you and know you will fight hard during your treatments.� I will see you on Tuesday morning before Uncle Dylan and I head to NYC to see Westminster!�� Love and Hugs to you!
Monday Feb. 14, 2000 - Happy Valentines Day!!� Lauren is in the hospital tonight waiting to start her treatments.� She had a small surgery to insert her "main line" to receive her Chemo.� Aunt Eileen came to visit with yummy rasberries!�� What a lunch I was told you had, grill cheese, rasberries and prezel fishies.� I hope you didnt get a belly ache from all that! :o)
Save a smile for me and Uncle Dylan.� See ya in the morning!
Wednesday Feb. 16, 2000 - Lauren got her first round of Chemo today.� Her protocol number is 3891.� We have heard that kids with Stage 3 respond really well to this.� In a big way I am glad that this finally started, but another part of me isn't.� I am worried about how she is going to look and feel during her treatments.� Lauren doesnt look sick now when I look at her, but she is going to look and feel ill once the Chemo kicks in.� But I know Lauren, she will fight the fight and be able to smile through this anyway!
Uncle Dylan and I had a great time seeing you yesterday Lauren!� Those rides down the hallway in the wagon were so much fun.� And playing Lucky Ducks and singing the "One Little Duck" song in the playroom was funny too.� Did you get your Aunt Nean's singing voice??� YIKES!!� Oh, I ran into a bunch of your nurses at the Westminster last night.....you have really stole their hearts little one that's for sure!!�
I will talk to you in the morning.� Grandma is coming to visit with you!� Make her sing the duck song with you while playing Lucky Ducks! :o)
Thursday Feb. 17, 2000 - New pictures are up on Lauren's photo page.� Spoke with Deb this morning and she said that Lauren did fine her first day of treatment.� She was "off" today and will get more tomorrow.� Hopefully she will be home by Tuesday of next week for a bit of relaxing.� She met with her Physical Therapist this morning and Deb said she liked it.
Keep a smile for Aunt Nean.....I will visit with you when I get rid of this cold !!�
Aunt Eileen's Entry!
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Friday Feb. 18, 2000 - Hi Lauren. Just thought I'd let everyone know how well your doing. You weren't real happy when I saw you on Monday cause you had all those yucky tubes all over you,(but those raspberries were good)Tuesday they took all but one of them out, so now your mob le, with the exception of having to drag around the IV cart. You've been pulling yourself up and walking around holding on to things, you've been riding in the stroller, the wagon and the wheelchair, brmm brmmm through the halls. I now know the Barney so g because you sing it so well, and even sang it for the nice lady who sits at the PICU desk. And tonight we had meatballs, I can't believe how many you ate. (sorry Deb, you'll get that diaper tomorrow, but fair is fair, I think Bill got the raspberry diap r) I will see you on Monday, I'm taking the weekend off, but I'm sending Grandma and Grandpa to visit tomorrow with cookies that Uncle Rich baked for you, Mommy and Daddy, and I'm sure you'll have a whole room full of visitors over the weekend. Hopefully I won't have to see you on Monday, if your doctor lets you go home, so you can be with Timmy. I would much prefer that. Hope your sleeping now, you too Bill. Love you guys!
----Spoke to Deb tonight (Sat. Feb 19th) and she said that Lauren is doing well again today.� Not eating too much at all and seems to have the case of the burpies! :o)� All Lauren wants to do is go for walks and Deb needs someone to invent a gadget that will allow her to push a stroller and push an IV pump at the same time! heehee.� I know I told you on the phone tonight Lauren, but here is wishing you sweet dreams again!� Loves and Hugs to you!
Monday Feb. 21, 2000 - A big welcome home to Lauren!!� We are so happy that you got through your first round of Chemo wearing a smile!� I spoke to Deb and could hear how happy Laruen is to be home with Timmy!� She was so busy sounding but managed to have enough time to talk to me on the phone. Then off she went to try and put hand cream on Tucker the cat!� She is still craving tomato sauce, so I guess those good Italian genes came out! *Smile*�
Yesterday Timmy and Elizabeth got Lauren her very own Dr. kit.....this way she can practice taking her own blood pressure and even do it to the Nurses and Doctors herself!!!� (She HATES to have her BP done!!)� Tomorrow is a visit from the Home Health Nurse to teach Deb and Bill how to give Lauren her injections.� (they will help boost her counts)�� And Physical Therapy will be set up to be done at home too.� A visit to the hospital for blood work is Thursday.� The doctors really need to keep an eye on Lauren's blood counts.� They will be going down over the next week or two.
Lauren, we are so proud of you and so glad to see that you are keeping your great attitude through all of this.� Timmy will be thrilled to be able to have you around the house again! He really missed having you at home last week!�
See ya in the morning and big hugs and kisses to you and Timmy! :o) Love ya!
Thursday Feb. 24, 2000 - Lauren is continuing to be a trooper through all of this.� Her visiting nurse came today and drew some blood from her catheter and although she said "HIDE" when the nurse came up the steps....Lauren let her do it.� Deb is getting more comfortable giving Lauren the shot of Neupogen....(it helps to boost up her white count.)� Lauren cries a bit but she has the Emla cream on to numb the area.� The nurse drew blood for a CBC (to check her white & red counts), Calcium & Potassium.
Her cravings for M&Ms have lessened a bit.� We have learned that a lot of people who get Chemo develop a metallic taste in their mouths making their favorite foods seem gross.� Also we heard that spicy foods seem to be craved....prob because they can taste them better.� Here I thought Lauren's good Italian genes were coming out, but nope this seems to be quite common! :o)� So Lauren I will eat the M&Ms still and you can join me when you feel like it again!!
More good news to share, Lauren is walking some!!� She can take some steps to get from Deb to Bill and she can walk if you let her hold onto your hand.� Way to go Lauren, you will be walking again without our help in no time!� Timmy is being such a good brother with her.� He has started talking about Lauren being sick.� He has a matter of fact kinda tone when he says......"my sister is really sick"� He did a great job explaining to his 6 year old cousin Elizabeth that Lauren has a tumor and that she has Cancer.� He even reminded all of us that we need to wash our hands a lot to get rid of the germs so Lauren doesn't get sicker.� It amazes me how kids handle things! :o)
Sleep tight you guys....Aunt Nean will see ya in the morning before heading to work.� Loves and Hugs!
Monday Feb. 28, 2000 -� Today is day 7 after Lauren's first round of Chemo and we were told that she would have the lowest blood counts between 7 & 14 days after treatment and that she would most likely end up in the hospital around this time with a fever.� And......she has.� She was admitted last night with a fever of 101 that went to 103.� Antibiotics were started last night to help her weakened immune system fight off infection.�� She is not on fluids because Lauren is drinking enough liquids on her own.�� The fever broke around Midnight last night on it's own and we were pleased she did not have another one all day today.�� She will continue to get her Neupogen injection as well as another type of antibiotic.� We found out Lauren's blood count numbers today as well. The most important number that we all need to know is the Absolute Neutrophil Count....(aka ANC - this is her white blood cell count)��� Normal levels are anywhere between 2000 and 3000.� Lauren's are a big fat 22 !! (pretty much non existent!)
We were told from the beginning that the Chemo kills off the cancer cells as well as the good cells and that her counts would go way down and then start to rise again.� So, these numbers are not uncommon and this is going to happen after every single round of Chemo.� Her hemoglobin is down to 8 and normal for that is 10 - 13.� If it drops down to 7 or below she will need to receive a blood transfusion.�� Again, this isnt uncommon either after treatments.� Lauren needs to stay fever free and her ANC count needs to rise to 400-500 before she can come home.� She would be able to be home with her counts this low, but because she got a fever, she has to be in the hospital.
Lauren continues to be a trooper through this and everyone that came in to exam in her said the same thing, "Wow she looks Great!"� For a kid with counts this low you would expect to see tiredness, crankiness, no desire to play an all around sick look.� But aside from a little paleness Lauren is not any of these things.� (Ok ok a little cranky sometimes! Haha)��� She was laughing and singing all day, playing in the room with a ride on car, her monkey puppet, watching videos, eating M&Ms and playing!� She is moving around the room on her own and is getting better and better with her walking.� We even played around with the automatic bed (Aunt Nean slept in it last night!)� She ate pretty well all day too.......Cheerios, french fries, pizza and M&Ms,soda, juice.� We are pleased to see her getting used to some of the common procedures too.� Today she not only let the nurses flush her lines, give her the meds, take her temp and blood pressure, she actually told them which arm or leg to do it in and sat for anything that needed to be done with her tubes....."Uuubess" as Lauren calls them!
She had visitors from the Phill Harmonic today and she got to play some of the cool instruments that they brought to her room and on Thursday we are having a "Girls Only Pizza Party"� Dr. Britton, Debbie, Lauren and myself will be eating pizza, gossiping, playing games and having a party! We cant wait!!! :o)� Hey Lauren keep practicing that name that we call Dr. Britton.....she will be so pleased when you can say it with the hand motions!!� Heehee� Ohh and we will bring the digital camera so we can take pictures so everyone can see your party.
Sleep well Lauren and I will stop by to see Timmy in the morning and give him a big hug from you.� Be good, and rest up for our big bash on Thursday night.� Loves and Hugs.
Wednesday March 1, 2000 - Lauren you amaze me more and more each day.� I am just so thrilled beyond words that you are home from the hospital already.� To have your ANC go from 22 on Monday to over 1000 today is just� AWSOME!� That little body of yours is working so hard to fight this cancer.� That radiant smile of yours and that winning attitude you have will help you continue to fight.� All of us will be here for you each and every step of the way throughout� your journey.......that I promise!
We are all� very proud of you Lauren.
Loves and Hugs to you baby! :o)�
Saturday March 4, 2000 - A big Way To Go to Timmy for getting a first place in his group during his Karate Tournament today....then going on to the Championship round and bringing home a� second place.� Those trophies are going to look great in your room Tim!!� Soon you will need more shelves to show them all off!!� Uncle Dylan had a good time with your Game Boy this morning while we watched Lauren so Mom and Dad could cheer you on!� Lauren and I had a good time sampling the chocolate......did you know M&Ms with the Cheerios tastes pretty good together???� (shhhh don't tell Mom Lauren!)
Lauren's hair is just about all gone.....and does she ever look cute in the "pretty hats" she has.� Although she likes the all-la-natural feel and chooses not to wear them! Heehee� She is looking good.....a bit tired, but still playing and laughing and acting like a normal 20 month old.� We went for a walk today to get some fresh and she really enjoyed being outside.� Lauren's appetite is getting better and better too and that is good to see.
Hey Timmy I hope you enjoyed the Tigger movie and Lauren Aunt Nean will see ya Monday morning for breakfast like we planned.� Sleep tight and sweet dreams to you guys.� Loves and Hugs!!
Tuesday March 7, 2000 - La La La La La La La (Inside Pizza Party Joke!)� The weather was so nice today and Lauren was playing outside and was riding her bike.� When I got to the house she was running around the living room with her bike helmet on!!!�� We got the helmet off by bribing her with raspberries!�� She� is doing very well and enjoyed having Dr. Britton over at the house for our little party.� She loved her pizza.... I mean really loved her pizza!� In fact she sucked all the cheese and sauce off the pizza.....leaving most of the crust behind!!!
I will get a pic up this week showing everyone what the little Buggaboo looks like with no hair.� We haven't decided ....well no we have decided that she looks like a little old man, complete with glasses and fishing hat!!! (I want all to know...me, Deb and Dr. Britton came up with this together!)�
We have some tests coming up....hearing test on Thursday, CT & Renal Scan on Monday, and she is heading back in for her second round on Wednesday, March 15th.
Well little Lauren, I just want to say a big THANK YOU for inviting Dr. Britton to your party...she is providing us with hours of entertainment and stories.......(L)� We have lots to hold over her head at this time!! ;o)
Have a good night sleep baby...wake me up in the morning...loves and hugs!!!!
Saturday March 11, 2000 -� I was so happy to hear that Lauren's physical therapy session went so well and to hear that she really does not need to go was even better.� The hearing test went well too.� One more set of test before heading into the hospital for round two will be done on Monday.� This will be a CT scan and another type of scan to make sure her kidneys are doing ok from the Chemo drugs.� Grandma gets to go for those tests, as we all seem to take turns going with Debbie.
Lauren is enjoying the weekend at her Grandma O's house and I bet is loving that she is out and about.� She loves going for walks and runs around the house with her coat and bike helmet on...ya think she is giving us hints or what?? ;o)
We are all enjoying the "calm" right now, and are gearing up for Lauren's next round to start.� Hard to believe that she was diagnosed over a month ago.� February is a total blur, time is flying right by.
Well, that is it for now.� Will talk to you on Sunday night when you get home guys!� Bill, I hope you had a great birthday and what a great gift Lauren got you!!�
Thank you Eileen for doing the update! :o)
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Thursday March 16, 2000 - Lauren Update: Lauren is in the hospital today beginning her second round of chemo. When I arrived she was patiently awaiting her grilled cheese sandwich and fries (which didn't look all that appealing when they arrived, but Lauren didn't seem to mind) Lauren was in a great mood tonight, feeling good. We had one small incident occur when Lauren stepped on the tube that is feeding the chemo and kinda pulled it out. Mommy was out of the room so Lauren and I called the nurses, who came right away and hooked her back up. Lauren was cracking me up because she immediately sat down knowing what she had done, put her hands on her cheeks and continually repeated, "Oh No, Oh My Goodness" It was quite funny. Lauren is so good about getting her blood pressure and temperature taken now. She tells them which leg to check her BP on and lifts her arm up for the thermometer. When their finished she says "whoo hooo, all done". When I said good night I'm going home Lauren said "me too!" I wish I could have taken you Lauren! After day one of round two, so far so good. By the way for all of you out there, tomorrow, Thursday 3/16, is Incredible Kid Day. It's the third Thursday of March every year. The purpose of Incredible Kid Day is to remind adults to tell their children, grandchildren, nieces/nephews, etc., how much they mean to them by writing a letter to them. It doesn't matter if their too young to read. You can always read your letters to them or save them and give them to the kids when their older. So Adults, get out your pens and write those letters to your incredible kids. You'll feel good for doing it and your children will thank you for it. If you'd like further info about Incredible Kid Day, which was started by the Campfire Boys and Girls Organization, you can go to www.campfire.org Lauren and Timmy I think you're both INCREDIBLE. O.K. your incredible too Bill & Deb. After all your somebodys kids too! I'll see you guys tomorrow. Oh by the way Aunt Nean's birthday is on Friday (3/17) She's our Italian Leprechaun. After all, everyone's Irish on St. Patrick's Day.
Sunday March 19, 2000 - Thank you Lauren for celebrating my birthday with me on Friday night.� I can not think of a better way to end the evening then to eat cake with you!� Every time I come to see you, I am not sure what I am expecting to see, but I always leave with a huge smile on my face.� You look wonderful, you sound wonderful.....you are wonderful.� Your antics are getting more amusing everyday!� Who taught you "Knock it off!"� And you say it at the appropriate times which just cracks me up! :o)
Mommy told me that your ANC is already down to 1000, dropping fast this time it seems.� I am sorry that first drug you got this round (Cistplatin) made you throw up.....but you seem to be handling the other ones ok, and that is good!
It sounds like you had another good day yesterday with Grandma visiting.� Uncle Dylan and I went to Red Lobster last night and they were having a fundraiser and if you donated money, you got these really cool lobster hats.� I immediately thought of your little bald head and started to laugh.� Uncle Dylan thought you would look really really great wearing a lobster hat.� We picked up 2, so you and Timmy can put them on together and we can take a picture!!�
Well, kiddo....this round will be over soon, and you will be home nice and comfy before you know it.� Save a smile for me, and I will see ya soon.� Loves and Hugs to you and Timmy!� :o)
Saturday March 25, 2000 -� Lauren has been home all week and really loving it!!� She is doing great, playing and running around like crazy!� Spoke with Debbie yesterday to get Lauren's latest ANC counts and they are a little confusing.� While in the hospital getting her second round of Chemo, the ANC was 750 with a Hemoglobin reading of 8.8.� Now this week when she got the blood taken from home and after the round finished her ANC was 5800 with a Hemoglobin of 9.7.� Now, this makes no sense to us....maybe an error with the lab....we arent sure, but Deb will find out when she speaks to the Oncologists on Monday.� Deb says she is feeling great.� Lauren isn't eating too well this week, but other then that....is happy and enjoying her time home.� :o)
I should have new pictures up on Lauren's photo page from our Birthday Celebration on March 17th while in the hospital.� We sure did have a good time and I am sure the pictures will reflect that!!
Timmy got his Kindergarten shots yesterday....he wasnt happy to say the least.� Cant believe he is heading to school already.� Seems like it was just yesterday that Deb's water broke in my car....here we are 5 years later!� Man the time flies!!!
Mom and I are kidnapping Deb today� and heading to the mall to see a movie and to do some much needed relaxing.� Hummm every time Deb and I head out with Mom we always end up laughing hysterically over something......will be nice to have tears in our eyes from laughter this time.� :o)
Tuesday March 27, 2000 - Lauren had blood work done yesterday down at the Valerie Center.� Seems that the results from last week were inaccurate.� Yesterday her ANC was 130 her Hemoglobin was 7.7 and her white blood count was a whopping .5 (normal is 5.5 - 17)� Seeing that the hemoglobin was low, Lauren was going to have a blood transfusion today.� But when she went back today her Hemoglobin had already climbed up to 8.0, she did not need it.� Her ANC went down further ....today's count was 21...so she bottomed out today.� Deb said that during her exam yesterday even with number down low, Lauren was running around the Valerie Center and having a good ole' time !!� When I saw her yesterday morning, she looked good.� She gets a little stiff it seems after the chemo rounds...you can clearly see it by the way she is walking, but that doesn't seem to stop her from playing.� So far so good with no fevers after this round.�
Lauren's Bone Marrow Harvest date is going to be set soon.� This is where they will take Lauren's marrow and store it until they are ready to do her transplant.� A more sensitive test was preformed to look more deeply for NB cells and the results still show that there is no Neuroblastoma in her marrow. I am sure the harvest will be done soon.
Well, we have two rounds done and talk of the harvest, so things are going as smoothly as they can be in this sort of situation.� Our families are so very grateful for all the support and prayers that are said for Lauren each day.� I wanted to thank Edna in Florida for taking the time and printing out these journal pages for my Grandma Gigi.� It is hard for her to be so far away from us, so I know reading the entries means a lot to her and keeps her connected...so a big THANK YOU to Edna!�
Sleep well Lauren.....loves and hugs to you !
Sunday April 2, 2000 - Lauren is doing really well this past week.� So far so good with not having a fever, so no stays at the hospital after round 2 of chemo...YIPPY!� I have not been able to see her for a few days because I am getting over strep throat, but I can hear her running around her house when I am on the phone with Debbie! Her counts from last Thursday were good...they up with help from the Nupegen shot.� Her hemoglobin is still in the 7's, but she is doing ok.� She goes to the Neurologist tomorrow and she goes to the Valerie Center for her blood work tomorrow as well.
I made a mistake in the last entry about the Bone Marrow Harvest.....Lauren is getting a Stem Cell Harvest done.� The stem cells are taken from her blood which will be taken from her tubes, so there will be no need for her to be put under or undergo any sort of discomfort during the procedure.
There is a new link on the index page.� Bill's sister Eileen and his brother in law Rich are the captians of a walking team that will walk during the Relay For Life 2000.� Check out the site for all the information!! :o)
Saturday April 8, 2000 -� Thanks so much Lauren for having Mackenzie and I at your house today for a visit.� It was so much fun with Elizabeth and Aunt Trish and Curtis visiting as well.!� Grandma and Grandpa were happy to see you too. Kenzie really liked helping you bring a clean diaper to Mommy, and she liked wearing all of your hats, best of all she liked that you shared some of your snack with her!!!� And you taught her some new manners like "No lick my juice box" and "Get out of the fridgerator" and "Move over, me sit on the bean bag chair!"� She is sound asleep right now snoring really really loud....I think the day just pooped her out!� She still has her tennis ball next to her!
I am happy to see that you are looking good.� I know you have some more tests on Monday morning, but you will do just fine with them.�
Round 3 is just around the corner, Lauren goes in on Wednesday.� No date has been set yet for the Stem Cell harvest.� And new pics are up on the photo page....thanks to my friend Laura who does that page for us....*VBG* to her for that!!!
Sunday April 16, 2000 � -� Lauren is finishing up round 3 of her Chemo.� The Cistplatin made her really really sick this time around, but she is handling the rest of the treatment like a trooper! :o)� She will be coming home on Tuesday, just in time for the Easter Bunny's visit.� I expect lots of Easter egg coloring going on at her house this week!
Our families are very excited about the walk for the Cancer Society in June.� Eileen and Rich are busy and hard at work with all of the planning for the even.� I have gotten some emails from friends wishing to donate an item for the raffle.� Thank you so much for your donations.
Hey Lauren Aunt Nean has a new Black Lab for you to meet.� Her name is Bridie and she is 4 and 1/2 years old.� She is related to Mackenzie.� In fact, Kenzie came with Uncle Dylan and I all the way out to Michigan this past week to pick Bridie up!� We all had a lot of fun playing around in the hotel room you should have seen them!� Bridie is a really nice girl and you will have fun playing with her.� I think she needs pre-school though...so you will have to help me teach her some manners, just like the ones you were teaching Mackenzie last week.� :o)
Loves and Hugs to you and Timmy and I will see you this week when you get home!
Friday April 21, 2000 -� Lauren is happy and at home resting up after her round of Chemo.� My family will be heading over to Deb's house for Easter because Lauren's counts will start to go down, so she can't really go out.
Next week Lauren has some tests.� Monday Debbie and I will take her down to the Valerie Center for her counts.� Then Friday the 28th Lauren will have another Cat Scan done along with the test for her kidneys.� This Cat Scan will tell us if the tumor is responding at all to the treatment.� If it has, the chest surgery to take the tumor out will be scheduled.� We all have every body part crossed that the tumor has shrunk down enough to be taken all out.� It will be a long week waiting for the result.
The Stem Cell Harvest should be scheduled for before her next round of Chemo which is May 10th.� Lauren has to get another line put in.� This one will go in on the opposite side, so Lauren will be sporting 4 tubes for a few days.�
It will be a fun Easter Sunday with Timmy and Lauren over at Bill and Deb's house, and my parents and Dylan and I are looking forward to spending the time with them.�
Loves and Hugs to you Lauren....even though you wont talk to your Aunt Nean on the phone this week!� :o)� See ya Sunday Timmy!!! :o)
Monday April 24, 2000 -� We had such a good time yesterday with the kids.� The little bit of rain we got didn't stop Timmy and Lauren from going on an Easter Egg hunt!� Boy the Easter Bunny left lots and lots of plastic filled eggs outside! :o)� One of Deb's friends cooked a great dinner for all of us....everything from appetizers to dessert and it was delicious! Thank you!� Timmy, Uncle Dylan is a little sore today...you two must have played hard...heehee.
Today I went with Deb and Lauren to the Valerie Center down at the hospital for her blood counts.� ANC was a big fat 50 and her hemoglobin was 7.3.� Lauren got her first blood transfusion today.� She looked great and was a happy camper, but that hemoglobin was a bit too low and needed some help coming back up.� So, Lauren spent about 4 hours hooked up getting blood.� It wasn't too bad, and I got her to take a nap on my lap....actually I took one too! :o)
Friday Lauren heads back to the hospital for that important CT scan.� We are optimistic that the tumor has shrunk and we are hoping we will make the arrangements for the surgery soon after that scan.� Lauren's stem cells will be collected next week it looks, but I am not sure when the actual transplant will be.� Dr. Kline went through some of what to expect with the actual transplant when we saw him for Lauren's visit.
Ooooo and how could I forget to mention that we got to see Dr. Kristen today!!!� Lauren enjoyed sitting on the floor playing with the Rug Rats coloring stuff with her...too bad the visit was cut short by Kristen's beeper going off.
Loves and Hugs Lauren and Timmy.
Friday April 28, 2000 - -� I am sorry to say that the results of Lauren's CT scan today were not as we hoped.� The tumor did not respond like the doctors� thought it would.� It has not gotten any bigger, so that is good, but really Lauren is no better off then she was when she started the Chemo.� So we start again.
Lauren will be switched to the N7 protocol.� It has some of the same drugs she got these last 3 rounds, but in double and triple doses.� This protocol is much more intense, it is pretty much guaranteed to make her very very sick.
The stem cell harvest is still planned for next week.� Lauren will go into the hospital on Tuesday or Wednesday and get a temporary line put in for the procedure.� The harvest will probably start on Wednesday.� As soon as the harvest is complete Lauren will immediately start her new Chemo.
The surgeons who did Lauren's first attempt at the tumor removal will review her scans this weekend and determine if there is any point in going back in now.� If not then after each round of the new Chemo, CT scans will be done to see when the tumor has shrunk enough to take out.
As soon as I got off the phone with Debbie this afternoon I thought I was going to scream.� It felt worse then I did after Lauren's first chest surgery.� The disappointment is extremely overwhelming never mind all the fear.� I am better after talking with Deb tonight and finding out what the next plan of action is.�
You are a brave and courageous little girl Lauren and you will beat this.� We will all be right here by your side and on your side to help you fight......I promise.� I will see you tomorrow morning at Timmy's soccer game.�
Loves and Hugs to you....sleep well baby. :o)
Wednesday May 3, 2000 -Yesterday Lauren went in for her blood work and to see if she needed to get another tube put in for her Stem Cell Harvest.� Her counts were good ANC was very high - 24,000 because she has been getting 2 shots of Neupogen instead of the one.� They are doing this to make sure that Lauren's counts stay high for the harvest.�� The Dr. decided not to put in the second line, instead the harvest will be done out of the tubes she has now.� Lauren got an Eco done to check her heart out and that went fine.� She needed this done because the new Chemo is more intense.
Deb took Lauren down today to start the harvest.� It took about 4 hours and Lauren took a nap through about half of it.� Seems that Jungle Book has replaced RugRats for a while...it settles her down like a charm!� The blood for the harvest is taken directly from Lauren's tubes and is put through a machine.� They take just about her entire blood volume....take the stem cells out...then give the blood back to her.� From the looks of it, they may have gotten enough stem cells today and Lauren may not have to go back tomorrow for another session.� Her ANC was way up there still at 33, 000.
If anyone is wondering why Lauren needs to have the Stem Cell Transplant it is because it will help her recover from all the chemo she is getting.� The chemo kills off all of her cells to help her fight the cancer, and that means it destroys the marrow as well.� Doing the transplant lets the doctors give Lauren more intensive chemo to hit the cancer harder.� Giving Lauren back her harvested stem cells will recover her marrow at the end of treatment which will give her back her immune system.
The new protocol will start on Monday.� Deb said it is a 4 day cycle.� One of the drugs will be given continuously over 72 hours through IV with the others given at different times.� Like I said in the last update, some of the drugs are the same but at double and triple the dosage.� She will take longer to recuperate from this new treatment and she will be sicker during it.� But if that is what it takes to shrink the tumor, then that is what Little Lauren needs to go through.
Lauren, Aunt Nean will see you and Timmy tomorrow night after my dinner at work.� Tell mommy to make up my bed cause I am sleeping over!!!� And I will spend the day with you guys on Friday...Aunt Nean has the day off!!!� Sleep well....loves and hugs to you guys!� :o)
Tuesday May 9, 2000 -� Lauren went into the hospital yesterday to start her new chemo protocol.� When we spoke to Deb this morning she said that Lauren was really sick last night.� She was vomiting and dry heaving a lot.� The doctors gave her a full dose of Anzmet (Anti Nausea Med)� a half hour before the chemo started....but it didnt seem to stop her from getting sick anyway.� They gave her another 1/2 a dose and she hasnt gotten sick since.� Deb told me that the doctors decided to put her on a 24 hour slow drip of the med and we hope that will help her out more.
Lauren's not eating well, but that is to be expected. She ate a handful of Cheese Its this morning with Deb, but that's about it.� She is talking up a storm to all the nurses and doctors as usual. :o)
Lauren's Cat scans were sent down to a surgeon out of MSK Hospital in NY to take a look at, as well as to a surgeon in Boston to look at.� Deb and Bill and Dr. Kline are making sure they cover all the options available to Lauren.� I will let you know what the thoughts are from the 2 doctors when I have the info.
Hey Lauren have you heard....someone special is babysitting you with me on Saturday....hummm who do you think it could be?� :o)
Loves and Hugs
Friday May 12, 2000 -� Lauren came home yesterday afternoon from the hospital.� We all breath a bit easier when she is home with Debbie Bill and Timmy.� I know she is more comfortable there.� This round was harder on her for sure.� She got very sick the first night, and got sick again when Bill had her the second night.� She didn't eat while in the hospital really....some cheese-its but no real meals.� Deb said when she got home she did eat the tomato sauce on her macaroni, but not the macaroni.....guess the tradition of her only wanting tomato based foods continues.
Lauren heads back in on Monday for her blood counts.� And a scan will be scheduled sometime before she goes back in for the next round.� They will do a scan after each round.� They want to make sure this protocol is shrinking the tumor.�
One of the doctors did get back to Deb and Bill.� He is out of Sloan Kettering in NY.� He and Lauren's Thoracic surgeon talked about whether to go in sooner then later and try to get out as much of the tumor as possible, or waiting until the chemo shrinks the tumor and pulls itself away from the muscle.�� Seems that the tumor isn't just attached to the outside of a� muscle...it is actually going through the muscle.� It's the muscle on her upper back...Deb described it as if you suffer from a back ache, it's the part of your back that you touch when you have the pain.� The doctors compared taking out the tumor is like picking through the meat on a sparerib.
Deb and Bill along with the Oncologist and the surgeons will continue to discuss what the best plan will be for Lauren.
Well....that's the news for today.� Lauren, I will see you tomorrow night for some fun.� Don't put me through too much torture while I am babysitting you! :o)� Timmy good luck tomorrow morning at your soccer game and have fun!� I will see you too....all dressed up when I get to your house tomorrow. (Timmy has a very special awards dinner to go to with his Mom and Dad for Karate!)
Tuesday May 16, 2000 --Lauren went into the Valerie Center yesterday for her counts.� ANC is 350 so that means that she hasn't "crashed" yet.� Her platelets (white blood cell count) is 168...normal is 150.� Her hemoglobin was real low quicker this time around...at 7.7 so she had a blood transfusion.� Hopefully that will make her feel a bit better as she has a bad case of the crankies!� She will go back to the center on Thursday.
Looks like the next several weeks will be busy ones.� The 2nd surgeon came back with his opinion on whether or not to do the surgery now, and he agreed with the one from Sloan Kettering.� The schedule will look something like this:
* Consultation with Dr. Dr LaQuaglia at Memorial Sloan���� Kettering in NYC
* CT scan on or around Friday May 26th
* Surgery
* Radiation
* "Mop Up" Chemotherapy
* Bone Marrow Transplant
We are still hoping that this last round of chemo shrunk the tumor some...any shrinkage will help.
The Relay For Life is coming up quickly.� I would like to thank all of our friends and family for their pledges and donations of items for the event.� Locally the Wantage Citco in Lauren's home town will be holding their customer appreciation day on the same day at the relay.� (June 3rd)� 5 cents on every gallon of gas and 10 cents on every deli purchase will go directly to the family.� And today one of the local preschools held a hop-a-thon with some of the proceeds going to the family as well.� The outpouring of devotion from the community is awesome and we are very grateful for it! :o)
Well Lauren I hope you are feeling a bit better with your "new blood" and make sure you help Timmy warm up his legs for that hop-a-thon today!� And a big CONGRATS to Timmy for receiving an award at his big Karated Banquet on Saturday night!� We are very proud of you Tim!!
Loves and Hugs! :o)
Saturday May 20, 2000 - Update: Lauren was readmitted into the hospital on Tuesday with signs of a fever. She wasn't eating or drinking well. Since then, she has been experiencing the full effect of the high dose chemotherapy that she received last week. She is currently receiving IV fluids, antibiotics, and morphine for pain. She hasn't been running a high fever, but she has had little or no appetite. Deb and I have been alternating back and forth for overnite stays. Lauren has not been sleeping well, so the nights have been pretty long. We are hopeful that she will be well enough to come home early next week. I am posting this information here because a number of people have called and were unaware that Lauren was in the hospital.�� (Thanks Bill for the update!)
I spoke to Deb last night and she said that Lauren is really miserable and just looks awful.� She is extremely tired, just content for the most part laying in her crib.� She hasn't asked to go to the playroom, or for walks and isn't talking much.� She may have mucositus from the chemo.� (Sores in the mouth and throat)� She will probably have to be put on an IV food supplement because she is not eating.� As of last night Lauren is on Morphine every four hours for the pain.
A consultation with the surgeon should be set up on Monday and Deb is assuming that the surgery should be in a couple of weeks.� Lauren has to recoup first from this last round.
Timmy have fun at your soccer game today!!! :o)
Sunday May 21, 2000 -I just got home from spending the day at the hospital with Lauren and Debbie.� This last round of chemo hit her really hard and she is experiencing all of the effects of it.� She is on a continuous morphine drip now to help make her more comfortable.� It seems to be working.� She is sleeping mostly in her crib and the little bit of time that she is awake, she is just hanging out laying down.� She did talk to me a little bit today....told me that butterflies lived outside, while looking at a decoration the volunteers made all the children, but other then that, yes or no nods are about all she is doing.
The mucositis in her mouth, throat and intestines are causing her a lot of pain, and also making it so she wont eat.� The sores or placques as they call them are visible on the roof of her mouth and on the sides of her mouth.� Because she is not eating, they put Lauren on TPN (Total Parenteral Nutrition) which she gets through her tubes.
Actually she has a lot of stuff going through her tubes at once. She gets Neupogen once a day to help boost her counts, the TPN, the Morphine, Benadryl every 6 hours so she wont have an itching reaction to the Morphine, and 2 antibiotics (Cefepime and Vancomycine)� She still has a fever of 101 and if it continues a 3rd antibiotic to prevent a fungal infection will be added.
Lauren's ANC needs to go above 500 (it was 44 I think today) and she needs to be fever free for 3 days before she can come home.� We are hoping for this upcoming weekend, but we aren't too sure at this point.
I will do an update a bit more frequently while she is in the hospital to keep everyone up to date.
Thursday May 24, 2000 - We got some good news today!Lauren got a CT scan done and the tumor has shrunk! We do not have the exact numbers yet, they will be in tomorrow morning, but Dr. Kline is encouraged! The scan shows necrotic areas (dead areas) and we are thrilled with this! Debbie and Bill have a consult apt with the surgeon from Sloan on Friday June 2nd. He is going to have to decide if he wants to go in now or if he wants Lauren to have another round of chemo to shrink the tumor even more. Lauren had a better day today. She is off the continuous Morphine drip and is now only getting it every 3 hours. She is interested in her surroundings, asking to go for walks and played in the playroom today. She has no fever and they are backing her off the TPN to try and get her to eat and drink on her own. Looks like she will be able to come home on Friday! I will post more when I know more. Lauren I am so happy for your good news today, my eyes have been filled with happy tears from the moment Grandma called to tell me. You were sleeping when I talked to Mommy before, but here is lots of loves and hugs to hold you over till I see you! :o)
Thursday May 25, 2000 - Good News .......Lauren came home this afternoon!!!� We are all just thrilled that she is home and look forward to a great holiday weekend with the family!� My brother Gary and Elizabeth are coming up on Saturday so Grandma will host a sleep over for them on Saturday night!� Hey guys....Shhhhh... grandma may not know that Aunt Nean is bringing over all 4 of the Labs for some serious swimming in her pond! :o)....lets just let them all surprise her! Heehee!� Sunday Deb and Bill are having a BBQ at their house.� It will be great to see Lauren out and about in her backyard playing.
The upcoming week should be a quiet one....and we need one of those.� Apt with� Dr LaQuaglia is on Friday June 2nd and I think Lauren will head into the center on Wednesday for her blood counts.
Have a great long weekend all....thank you to everyone for the prayers and well wishes!!! :o)
Loves and Hugs to you Lauren....Aunt Nean will see you tomorrow afternoon!� And Timmy....how are the fish doing that Jane and I dropped off today?� Take care of them for me until my school starts back up in the Fall!!! :o)
Tuesday May 30, 2000 - Well our weekend was not as good as we hoped for with Lauren.� She ended up back in the hospital on Sunday evening.� She was extremely cranky on Saturday, and again on Sunday.� She wasn't eating or drinking well, and she wasn't sleeping well either.� Lauren was to the point of Sunday of not being able to be comforted, and it was evident to all of us that something was up.� Off to the hospital Bill and Lauren went after a phone call to Dr. Kline.� Found out later that night that she was dehydrated a bit and within an hour of getting "tanked-up" she was able to sleep for a good long stretch at the hospital.� She was home by Monday afternoon.���
Nothing is planned for this week until Friday.� Lauren, Deb, Bill and my mom head down to NYC to meet with the surgeon from Sloan.� We are anxious to learn when Lauren's surgery is going to be done and what schedule afterwards will be.�
This coming Saturday and Sunday is the Relay for Life.� Rich and Eileen have been hard at work making all of the plans.� I would like to say thank you again to all of you who have contibuted with pledges and donations and support! :o)
Friday June 2, 2000 - The meeting with Dr LaQuaglia today went well.� Debbie and Bill are very comfortable with him performing Lauren's surgery.� The surgery is going to be the week of June 12th.� Lauren is not going to have a round of chemo before the surgery.� The actual date is not nailed down yet, but I will let you all know as soon as I do.The doctor is going in to get the entire tumor out, that is his agenda. But just like every other surgery of this kind there are no guarantees, but he has seen tumors in the chest before with Neuroblastoma, and is very confident that he will get it out. The recuperation for this surgery is going to be more involved then Lauren's last. She is going to have a chest tube and be in the PICU until that tube is taken out which can be anywhere from 24 hours to 3 days. (Sloan does not have a PICU, she will be across the street at I believe NY Presbyterian in their unit) From there she will go back to Sloan to their step-down unit and then eventually onto their main floor. There is a Ronald McDonald house across the street from the hospital for the family to stay at while Lauren is in. We are very relieved that this next step is in motion. Lauren is doing very well for the last few days, eating and drinking well, back to playing and talking and laughing which is wonderful to see. All the hard work that Eileen and Rich and Melissa have been doing for the Relay of Life is going to come to fruition tomorrow night. Debbie will be there for the opening night ceremony and Timmy, Lauren and Bill will head there on Sunday. My parents and I will be going down on Sunday as well. That's it for now, as always thank you all so much for the continued prayers for Lauren and our families. :o)
Tuesday June 6, 2000 -� -� We all had a wonderful weekend with the Relay of Life event.� Lauren attended on Sunday with Timmy and Bill, Debbie stayed all night on Saturday with the Hogan's Heroes Team and had a great time as well.� Lauren even did a few laps with me, grandma, grandpa, Deb and Bill ...well we walked and she strolled in her stroller!! :o)� Aunt Eileen received a Survivors Medal to give to Lauren and the luminary ceremony was touching and emotional.��� Eileen and Rich, you guys did a wonderful job on the tent and the raffles and the roulette wheel.� And our team raised over 5000.00 for the American Cancer Society!!!� This location had a goal of 135,000.00 and we crossed it!!! Way to go guys!� Thank you again to everyone for their donations!
Saturday was also the Wantage Citco's Customer Appreciation Day.�� Art, Brenda and Rick we do not know how to thank you enough for what you guys did for us.� The event was wonderful.� And a big thank you to Viking Limo in Sussex, NJ for giving Debbie, Bill, Grandma and Lauren a complimentary ride to and from Sloan Kettering Hospital on Friday.� And another big thank you for St. Monica's Church in Sussex for the bake sale they did in Lauren's honor.� The outpouring of support from the community is just awesome, and we are very very thankful for it.
Lauren's surgery is going to be either Thursday June 15th or Friday June 16th.� We are all anxious to get the surgery over and we are glad that Lauren did not have to go in for another round of Chemo before hand.� She is back to her old self this week.� Cracking us up with her humor, eating very well, and feeling well.� "I need to eat" is a common phrase of hers now! :o)
Well that's it for now....Lauren I will see you on Thursday for our lunch date, and Timmy have fun tomorrow playing soccer with all the moms!� I will see you too on Thursday I am sure!!� Loves and Hugs to you guys!� :o)
Monday June 12, 2000 --�� Wow Lauren what a wonderful past week you have had...and so busy!!� I really enjoyed the day we went out to lunch with Mommy and Dr. Kristen.� What a girls day out we had!� On Friday you went with Grandma and Daddy, Mommy and Timmy to the soccer game.� I heard that your mom was pretty competitive against those kids out on the field!!� Heehee but the kids beat the parents anyway didn't they?� And your cheer..."We gonna kick your butts!" is just too funny!!
Saturday you had a birthday celebration after Timmy's last soccer game and cupcakes for everyone....yummy to that!� And yesterday we had another birthday party for you!� Full of presents and cake and lots and lots of fun!� We loved watching you dive into all those presents....and what great presents you got....everything from new baby dolls to books and puzzles...to great new clothes!� I can not believe that you are two already....the time sure does fly.� Kenzie says thank you for the Blues Clues party hat you gave her.� I got a picture of her last night wearing it, and I will give it to you.
Lauren's surgery day is Thursday June 15th.� We are happy it is finally here, but so nervous at the same time.� Debbie, Bill and Lauren will� be heading to Sloan early Wed morning for pre-op stuff then stay at the RMH.� Timmy will be staying with Bill's parents while Lauren is having surgery.�� They're assumimg surgery will be pretty early Thurs. morning but can't tell us for sure til Wed afternoon when the OR schedule comes out. Debbie sure hopes it's early cause trying to keep Lauren from eating or drinking anything will be a nightmare. She's been eating non
stop since she got out of the hospital Memorial day!
I will update the journal as soon as I can after the surgery...Dylan and I will be down at Sloan with my mom and dad all day Thursday and home some time that night....so I will get an update in on Friday morning.�
Thursday June 15, 2000 - The surgery was a complete success...total time in was 6 1/2 hours not counting the pre-op and post-op stuff.� Lauren is still in recovery as I write this waiting to go over to the PICU unit across the street by ambulance.� The surgeon came out to speak to Deb and Bill and told them that he got everything out that he could feel as well as see.� She had minimal blood loss...needed a little bit though...all of her organs look good, there is no involvement with the adrenal gland.� (there was a question about that from the looks of her diaphragm on the scans)� She is moving her legs which is just wonderful...there was some concern with the surgery causing paralysis because part of the tumor was around her aorta and removing it meant cutting around the nerves that lead to Lauren's spinal column. ( A Neurosurgeon was on stand by if needed)
We are thrilled to say the least that the tumor is all out and Lauren did well during surgery.�� Thank you thank you for all the positive thoughts and prayers....God was bombarded with Lauren messages all day long today.� :o)
Saturday June 17, 2000 - Just a short little update.� Lauren is recuperating very well from the surgery on Thursday.� Her breathing tube came out yesterday and the first words she spoke was "I WANT MY MOMMY!"� Deb says she is not really sedated anymore but in a twilight sorta zone.� She opens her eyes a bit and asked for some juice and an ice cube.� She is still a bit swollen from all the fluids just sorta "sitting" there but that should start to diminish when she is more awake and starts to move around.� Her drainage tube may be coming out today! :o)
The Nurses are just in aw at how much Lauren has progressed, one even asking if she had the surgery days ago and Debbie saying Nope...just had it on Thursday! :o)� What a little fighter she is!!!� The way things are looking....Lauren will get out of the PICU and head back across the street to Sloan tomorrow.
Lots of Loves and Hugs to you Lauren....Keep up the wondeful work you are doing!!!�
Monday June 19, 2000 -� Lauren is continuing to improve from her surgery.� My parents and I visited with her yesterday in the PICU and she looks good.� She is hooked up to all sorts of bells and whistles, but she is talking and smiling and even eating some and drinking her juice.� She got the chest drainage tube pulled out yesterday and was receiving a small blood transfusion because her hemoglobin was a little low.� There has been an issue with her lungs...she did have some fluid in there, but now that the chest tube is out Lauren will be able to sit up more comfortably and cough out and move around those extra fluids.
When I spoke to Debbie this morning she said Lauren had a long night.� She spiked a fever again, but the Tylenol brought it down.� She is no longer needing the heavy duty pain medication...which is just wonderful.� She is on Tordol (sp), Oxyctin prob spelt wrong too...heehee and the Tylenol.� So now that she wasn't totally drugged she was wide awake for a couple hours at a time all through the night.� Deb finally put Rugrats on at 4:30 this morning.
Lauren helped the doctors during their rounds this morning by moving their stethoscope around her chest for them to listen, and her chest is sounding better...another set of X-rays were done as well.� She ate some breakfast this morning and is demanding to "GO HOME!"�
Debbie thinks she will be back over at Sloan some time today.� We are not sure what is next as far as the Chemo...we should be finding that out in the next few days.
The Ronald McDonald House that they are staying at is absolutely wonderful.� We took Dad back there to see it last night before heading out to dinner.� They really have the place set up wonderfully for the families.� Timmy may be heading in on Saturday if Lauren is still in the hospital for a trip to the Museum of Natural History.� He is staying with Bill' parents and I am not sure what he schedule is, but he is having fun while he is there...he misses Debbie, Bill and Lauren, but like I said he is having a good time visiting.
That's it for now....Loves and Hugs to you Lauren...keep getting stronger kiddo, and you will get to "GO HOME" in no time!� Tell Mommy to put your butterfly tattoos on you! :o)
Thursday June 22, 2000 -� -� Hi from Michigan...I talked to Debbie today and looks like Lauren has a virus of some sort.� She has been running a fever for a few day this week at night.� Blood cultures were done and there is no bacterial infection so they are thinking viral.� Another strange thing is her ANC is going way down....just like it does when she bottoms out after the Chemo treatments....the doctors are not sure why her counts are going down.� The doctors may take a look at Lauren's bone marrow...just to look and see if they can find out what is going on.� Deb said Lauren has been sluggish and tired, not asking to play or go out of the room...she wants to go home...but is lethargic.� She is on antibiotics and she is getting the Neupogen to boost up her counts.
The surgeon did say today that from a surgical stand point Lauren is doing really well.� If it weren't for the fever and low counts she would be able to come home already.� But she needs to be fever free and counts over 500 to be able to do that now.� Today her counts are only at 200.
Timmy is coming into the city tomorrow and will get to enjoy a trip to the Museum of Natural History...he is just going to love seeing the great big Dinosaurs!!!
I will update the journal again tomorrow night or as soon as I find out what is going on with Lauren and if they come up with a reason for her low counts and fevers.
Monday June 26, 2000 - - I was going to wait until tonight to update the journal, but I have gotten a lot of emails last night and today asking for news.� Lauren is home.� She was released yesterday afternoon from Sloan.� Deb said she a bit cranky and not eating much.� She is definitely glad to be home with Timmy!! :o)
The doctors put Lauren on a 3rd antibiotic to help prevent a certain type of pneumonia.� She was heading down to the Valerie Center today to see Dr. Kline and to go over what comes next.�
As soon as I know, I will be sure to pass it on to you all. :o)
Tuesday June 27, 2000 -Here is the latest scoop on Lauren.� Debbie took her down to Morristown Hospital yesterday for a look see by Dr. Kline at the Valerie Center.� Her counts are good, ANC is up to 3000...she has been off the Neupogen shot since Saturday.� They will come down a bit over the next couple of days as the effects of the shot go away.� She had another chest x-ray done yesterday as well....no evidence of pneumonia was found so that is good news.� Lauren wasn't happy about her visit to the center....but did finally decide that painting would be fun! :o)
Deb spoke to the surgeon from Sloan ( Dr LaQuaglia) about the tests done during Lauren's surgery.� 2 lymph nodes were taken out and 1 came back positive and 1 came back negative.� These nodes were taken close to the tumor site, so it is common to see Neuroblastoma in them.� And all of her tumor extended to the margin....meaning she has cells left with Neuroblastoma...again not uncommon...and the reason she needs more Chemo.
Her Short term Schedule consists of:
Friday June 30th.....Lauren is having eye surgery for the Strabismus she was dx with before her cancer.
Monday July 3rd.....CT scan
Wednesday July 5th...back in for the first of 2 rounds of mop up Chemo.
Her Long term schedule consists of:
2 rounds of the N7 protocol.
Radiation...not total body radiation, but focal radiation to the tumor site.
BMT...her protocol is LA6
Accutane
Hot/Cold Antibody treatment (maybe..these are still in clinical trial, and they are not sure about Lauren receiving them yet)
So as you can see Lauren still has a long way to go with her treatment, but we are thrilled to say the least with the success of her surgery!
Saturday July 1, 2000� - Lauren had her eye surgery yesterday for the Strabismus in both of her eyes.� Deb said she did very well and the Doctors were pleased on how it went.�� Lauren has to get drops in her eyes four times a day for 5 days.� We will not know if the surgery totally fixed the inward turn of both eyes until she is completely healed from it.� But we are optimistic it did!
I went over the other night for pizza with the kids, and let me tell you Lauren is recuperating from her major surgery much better then I thought.� She is up walking around, laughing and playing.� She is a little wobbly on her feet and a bit stiff, but is doing just fine!!!� She does get a pain medicine every 4-6 hours.�� Her silly attitude is back along with that lovely 2 year old one as well! (Ha Ha!!)� I asked her if anything hurt, and she said..."No I no hurt!"� Lauren you are just incredible and amaze me more and more each day!!
The family would like to thank again everyone in the community for all their generosity.� A big thank you to the Limo company� (Viking Limo) again for taking the family to and from Sloan Kettering Hospital in NYC for Lauren's surgery.� And to the local Sussex Wantage Pre-School for the Hop-A-Thon and to the Oakhurst Fire Co. for their Pass-The-Hat donation.�
We have a quiet weekend planned before Lauren's next round of Chemo which starts on Wednesday July 5th.� She heads in on Monday for another CT scan, and I will let you know what that reveals...which should be a big fat NOTHING seeing that the tumor is out!! :o)
Have a Safe and Happy Holiday weekend everyone!� And Lauren my doggies are totally excited about you coming up to Grandmas to play with them at the pond!� Rest up so you feel well enough to come on up here!!� Loves and Hugs to you and Timmy!!!
Tuesday July 4, 2000 � -� Lauren came up to my parents house today to watch my 4 Labradors play in the pond.� She had a great time along with Timmy and Elizabeth.� She threw the bumpers and tennis balls in for the dogs to swim after and she really enjoyed herself.�
The entire family was together at my parents for the first time in a while...Gary and Elizabeth, Debbie and Bill and the kids, me and Dylan and our "kids" and my Mom and Dad.... we had a nice relaxed lunch together!
Lauren is heading in tomorrow for the first of the 2 rounds of Mop Up Chemo.� I hate seeing her the day before looking all happy and somewhat healthy only to have her going� into the hospital 24 hours later....but this round� will be over soon, and I hope Lauren can get through it without being too sick.
Lauren the nurses are going to love your painted finger and toe nails....that pink is just beautiful.� Keep strong little one....I will see you soon.
Loves and Hugs to you. :o)
Saturday July 8, 2000 � -� Good news, Lauren finishes this round of Chemo later today and will be home by tonight!� She seemed to handle this round a bit better then last time.� They put her on a 24 hour drip of anti nausea medication and she did still get sick, but Deb said not as forceful as last time and not as often.�
Lauren even played in the playroom yesterday and enjoyed the visit from the therapy dogs in her room.� She ate a bit and is drinking some this time around too.
She will probably still have the hard crash that she experienced last month, but we will deal with that when it comes.� The Dr.s are pleased with how the scar on her back and side looks after her major surgery, all is healing just fine.� And her eyes are looking good as well.� :o)
Have a good weekend all!!
Wednesday July 12, 2000� -� -� Lauren headed in for her counts today and she hasn't totally crashed yet.� Her ANC was 100 and her hemoglobin was 8.9 .� So she did not need a blood transfusion either.� Her platelets are below normal range so she may by next week need platelets as well.
She is still eating pretty well, but is starting to get the "crankies" so we know she is close to reaching bottom with her counts.
Our little darling has definitely hit the "terrible twos!"� Thank goodness she is a funny kid, makes it more tolerable and funny most of the time.�� But the ongoing joke of all this is that next year when I get Lauren into my classroom I get to deal with her DEMANDS! Haha!! ;o)�
She wants her room painted pink and Debbie got a great new butterfly border, so Deb, Sharon and I� get to transform her "baby" room into the pink butterfly room soon.� She has a toddler bed waiting for her and she received a gift of a new table and chair set beautifully decorated with butterflies.�� She's become our little butterfly!! :o)� One of her demands is to go shopping....now see that demand I have NO PROBLEM with.� Funny thing is Lauren now understands that when her blood counts go up, she can go out....so today on the phone when I said "We will go shopping soon."� Lauren finished the sentence with "When my blood goes up!"
Blood counts will be done on Friday and fingers and toes crossed she stays fever free during this crash so she can at least stay home.
Timmy is enjoying his summer with both mom and dad home...trips to the library, swimming lessons, karate, and soccer camp fill his days.��
That's all for now...will let you know how she's doing after Friday's numbers are in.� :o)
Sunday July 16, 2000 - Sorry to report that Lauren is back in the hospital.� She headed in yesterday afternoon with a fever of 102.� Deb said she was not eating well and was pretty cranky.
She has quite a few sores in her mouth so they hooked her up to a 24 hour continues drip of Morphine.� Deb said they may put her back on the TPN (Total Parental Nutrition) because her weight is down a bit.
I am not sure of her exact counts yet, but by this time I am going to assume she has bottomed out.
Lauren, Aunt Nean and Grandma will come see ya today at the hospital.� Hope we can see a little smile from you!� :o)
Wednesday July 19, 2000 - Lauren is still in the hospital and still feeling horrible.� The mucositus this time around is really bad.� The sores in her mouth are large and visible plus she has it down her throat and her intestinal tract.� She had a blood transfusion yesterday because her Hemoglobin was so low....7.6 and she will most likely receive platelets tomorrow.� Her fever continues to go to 104 and she is now on two antibiotics.
Lauren may need to have her morphine dose increased, she is still on the 24 hour drip but she seems uncomfortable.� She is also receiving the TPN (Total Parental Nutrition) because she lost some weight before going in, and she isn't eating at all and she pretty much isn't drinking.
Looks like her next round of Chemo which is supposed to start on Wednesday July 26th will be moved to the following week so she has more time to recoup.
So basically Lauren is just hanging out in her hospital crib listening and watching her Rug-Rats tape.� Plans are being ironed out for the Bone Marrow transplant which should start the first or second week of September.
Rest well Lauren and I hope to see you home soon.� :o)
Sunday July 23, 2000 - Lauren was looking much better yesterday when I visited her and Debbie in the hospital with my mom.� Her ANC is up in the 900's and her hemoglobin was 10.7.� As the numbers climb she will continue to feel and look better.� As I was there, her TPN as well as her Morphine were being decreased.
She is back to talking and when my mom mentioned Chloe getting sprayed by a skunk in the morning, Lauren sat herself up and told us that she wanted to go to Grandma's to catch frogs and to throw the tennis balls with the dogs.� And Lauren wants to blow out birthday candles with Grandma when she comes home.� (It was Grandma's birthday yesterday!) Now last weekend she didn't talk at all really, so she is defiantly feeling better.
I am assuming she will be home either tomorrow afternoon or early Tuesday.� Debbie wants to make sure she is drinking on her own before taking her home. :o)
See you this week at home Lauren and Timmy good luck tomorrow with your first day of swimming practice...you will be GREAT!!! :o)� Loves and Hugs guys.
Wednesday July 26, 2000 - Lauren is still in the hospital.� We thought she would be home by now, but she is not eating or drinking on her own yet. :o(�� She is also complaining about a stomach ache.� One of the antibiotics may be the cause and they were going to try and figure that out yesterday.� Her counts also went down a little bit, but that is because they stopped the Nupogen in her IV Sunday night.
So, not much to write today and I will update everyone of when she gets out.� :o)� Feel better soon Lauren!!!!� Loves and Hugs to you!
Thursday July 27, 2000 - Yippy Skippy Lauren is home!� She has a bad case of the crankies and isn't eating too well.� She asks for the food but then gets it to her mouth and says it is "yucky"� I am assuming the healing sores in her mouth have left her with a bad taste.� But at least she is home to finish recouping before her next round which is some time next week.
Bill went back to work yesterday.� It is at one of the local banks so he is able to get home quickly if he needed to.� Timmy has had swimming lessons this week, so everyone is busy busy busy.
Final preps for Timmy's Kindergarten schedule have been ironed out.� His teacher is aware of his situation at home with Lauren, as well as the school nurse and Principal. Debbie has met with staff there over the last week and they are all very understanding and want what we want:� A smooth transition for Timmy into Kindergarten.� Still hard to believe he is heading off to school already!
A quiet weekend is planned.� My Grandma is coming up and we will head over to see Lauren on Saturday and Bill's parents are planning a visit maybe for Sunday.� Loves and Hugs to you guys...see ya this weekend!� :o)
Sunday July 30, 2000 -� Lauren and Timmy came up to Grandma's yesterday and we all went to Dylan's mom's farm to see the horses and all the other farm animals there.� We had a good time feeding the horses carrots and watching Uncle Dylan try and "herd" the pigs...heehee!� Then Lauren decided that she wanted to see the dogs, so Uncle Dylan and I went home, packed them all up and met them back at my mom's house for some swimming.
Lauren is still a bit cranky and distant, but talked with me and quietly sat with me down at the pond watching the dogs swim.� She didn't feel like throwing the bumpers in, but commented every time Chloe got one and Mackenzie didn't.� Her belly wasn't feeling so hot and she did get sick yesterday.� :o(
She still is not eating too well, but she is drinking a bit more.� Tomorrow she goes into the� Center for her blood counts and some time this week she should be starting her last round of mopup Chemo.
After this, she should be "off" until her BMT which should be around the week after Labor Day weekend.� I do not think the date has been nailed down yet.�
Loves and Hugs to you Lauren.� Aunt Nean will see you tomorrow afternoon to do your nails like you asked and we will do Kenzie's too.� I am sure she will like it! :o)
Thursday August 3, 2000 -� Just got off the phone with Debbie and Lauren is improving little by little over the last few days.� She was back at the center for her blood counts as well as getting a urine bag put in to do a 12 hour urine catch.� The results are not back in yet.� They did 2 tests....1 was for the catacholamines levels (which are Neuroblastoma markers...elevated HVA/VMA levels are indicators of the cancer) and the other was to check her kidney function.� They did the urine test this time instead of knocking her out and doing the GFS scan to check her kidneys.� She is still experiencing diarrhea, a stool sample was taken and we are waiting for those results as well.
Lauren is drinking more and more and she is eating on and off which is still a concern.� Deb says she will ask for the foods but then not eat them sometimes.� But other times like today insist on going to the store to go and get Honey Combs and eat a small bowl of it and follow it up with bologna!� It gets tough to figure out what is normal 2 year old stubborn behaviors and what is Lauren not feeling well behaviors.� We think it is constantly a little bit of both.
She is not as withdrawn as she was in the beginning of the week.� She is asking now to go out shopping and to Timmy's swim classes and asking for her friends.� Deb took her down to the Vet office to see the dogs and cats and she really enjoyed that.� But she gets tired very very quickly and will ask to go home.�
Lauren starts the last round of "mop up" chemo on Monday.� The drugs in this round are not the same as the last 2 rounds and we are real hopeful that she will not get as "sick" as this time with mouth sores and that sort of stuff.� It does have more of the one drug that makes her vomit more, but the first few rounds she had with that drug did not make her as sick for as long as the last 2 rounds did.� (Hummm did that make any sense???Heehee)
Well that is all for now, I am stopping by the house tomorrow morning to hang with the kids and to find out when Lauren wants to paint Mackenzie's toe nails!!! :o)� Will update over the weekend.
Sunday August 6, 2000 -� The test results that were done last week came back.� Lauren's kidneys are functioning properly, no issues with them and the catacholamines� (HVA/VMA levels) came back normal as well.� Those are the markers used to help diagnose NB...they were slightly elevated at diagnosis. so Lauren's being down to normal levels is great news.
We ended up shopping on Friday and had a nice time, but Lauren is definitely not herself still.� She goes through extreme mood swings where she is very very quiet (which isn't Lauren's personality at all) one minute and really upset and crying the next. When she is quiet she does talk with you and smile and laugh which is better then it was, but it is not with the enthusiasm Lauren usually has. She has lost a significant amount of weight and Debbie and I found ourselves buying her some clothes in a 2T instead of the 3T that she was wearing just a month or so ago.�
She is still not eating well at all.� When she does finally eat something, sometimes she ends up throwing up a few hours later.� She still has diarrhea and the testing done on the stool sample did not test positive for what ever it was that they were looking for which is good.� But it is still an issue and Deb will go over all this with the doctors tomorrow when Lauren heads in for this next round.
We are finally seeing the toxic effects on Lauren's little body from all the Chemo she has received.� NB wise she is much better from diagnosis, so disease wise she is doing wonderfully.� But her little body is totally wiped out from treatments and it has gotten harder and harder for her to recover between rounds.� While this is not uncommon it sucks to see because there is nothing we can do for her except keep her as comfortable as possible.� I hate to say it but she looks terrible!
Lauren is heading in tomorrow for this last round of mop up before transplant.� She goes in at 9 for her counts then at 9:30 she is scheduled for an Eco and EKG and then she will be admitted on the Peds floor for her Chemo.� She will be in for 4-5 days with this round.� Will update probably on Tuesday to let you all know how she is doing.
Wednesday August 9, 2000 � - -� Lauren seems to be doing Ok with this round.� She did get sick on Monday with the chemo drugs but she didn't yesterday.� They added a Steroid to her line of meds and it seemed to help with the vomiting.
She is eating some still and drinking as well which is good to hear.� Deb says she is a tad ummm moody and wants to come home.�� Tomorrow she gets one dose of the Cisplatin drug then fluids for the rest of the day and then on Friday.....hopefully Lauren will come home Friday afternoon.� :o)
The culture came back on the stool sample and the culprit of the diarrhea seems to be a yeast infection called Candida.� The med that they usually put someone on when they have it can not be used because Lauren developed a resistance to it when she was treated for the mouth sores last time around, so they are using a different one.� Lets hope it works and works fast because yeast infections can be a bugger to treat, and she needs to get rid of it before transplant.
No definite date has been set yet for the transplant.� We are still assuming it will be the second week or so of September.
Loves and Hugs to you guys!!! :o)
Sunday August 13, 2000 -� -� Lauren has been home since Friday late afternoon.� She still isn't eating too well and is vomiting and has diarrhea.� She is now taking Zofran to help control the vomiting and she is on an anti fungal medication to hopefully get rid of the yeast infection in her stomach.
Deb is going to take her down to the clinic tomorrow for fluids and speak to the doctor about Lauren's condition.� Thoughts of a zinc deficiency will be discussed as well as exploring other possible treatments for all of the symptoms Lauren is having. More tests on stool samples were done in the last couple of days...one being for Giardia and they have all come back negative.
She did go out with the family today to watch a local soaap box derby and had fun, but she gets tired pretty fast and wanted to go home.
Well....., that is it for now and I will update when we find out more after tomorrow's visit to the clinic.
Loves and Hugs! :o)
Tuesday August 15, 2000 --� Crappy news to report today....Lauren went in yesterday to the clinic to get fluids and for Debbie to speak to the doctors about her condition and they decided to admit her into the hospital.� :o(� Lauren's weight is down to 23 pounds...she was 28 at the start of this nightmare in February.� She is still vomiting and still has the diarrhea.
They have her hooked up to the TPN (Total Parental Nutrition) and she will come home with it when she is discharged some time later this week.� She will get hooked up to it each night at about 8pm and will receive the "feeding" until 8am the following morning.� This will give Lauren half of the nutrition she needs, hoping that she will get the other half by eating on her own during the day.
A zinc deficiency is what the doctors are now leaning towards...blood work was ordered and sent out yesterday and they will be back in 3 days.� She has most of the symptoms of it which include the dermatitis she has, diarrhea, hyper pigmentation of the skin, muscle weakness, candidia (the yeast infection in her stomach), loss of appetite and some more that have slipped my mind this morning.� The problem is so many of the symptoms Lauren currently has are also side effects of the massive amounts of Chemo she has gotten over the last 6 months...especially the last 3 rounds, making diagnosis of anything tricky.� Finding answers seems to be a collective endeavor between Debbie and Bill, the Residents and the Oncology team.
Lauren is still getting the anti fungal for now to help treat the yeast infection but if indeed the zinc in her body is depleted, treating that will in turn make the infection go away seeing that it is a side effect of low zinc in the body.� A meeting with a Nutritionist has been set up as well to help with ideas on how to get Lauren back to where she needs to be.
Her ANC yesterday was in the 600's so she has not crashed yet from this last round.� I spoke to Lauren yesterday on the phone and she sounds very weak and very tired.� I am going to head there today for a visit.
That's all for now....will update once all the bloodwork is in.� Loves and Hugs!� :o)
Saturday August 19, 2000 - I was hoping by the time I updated the journal Lauren would have been home....but no luck.� She is still in.� I saw her yesterday and stayed for a couple of hours and she was in a so so mood.� Did get her to smile and laugh a bit, but she still looks weak.� We read some books in the play room...the hospital closes it for a half hour so Lauren can play when her counts are down.� She showed me all of the fish in the huge fish tank that they have and we brought art materials back to her room to make a big butterfly.� Amazing what a little container of glitter can do! :o) I also brought along some pictures of my Labs for Lauren to keep with her while she is in, they always seem to make her smile.�
Her TPN was increased to 16 hours a day and once she get to the maximum caloric amount the doctors have set, she will get to come home.� Lauren will carry around a little backpack with a pump and the TPN and continue the feedings from home. This will provide her with 75% of her daily nutrition and she will still be encouraged to eat solid foods (she is eating a little more and more each day) and she has to drink on her own as well.
The diarrhea is being treated with Flagyll although all of the tests have come back again and again negative. Even the zinc that was thought to be deficient came back smack dab in the middle of normal ranges.� She still is testing positive for the yeast but the doctors have said that it is not what is causing the diarrhea.� (Lauren now has a GI doctor assigned to her as well as a Nutritionist along with her Resident doctors and the Oncology team)� The meds will cover her just in case there is some sort of bacterial infection in her gut that is not being picked up by the mega tests done on 3 different occasions.
Hopefully she will be able to come home tomorrow.� She is neutropenic now from the last round of chemo so it is only a matter of time before she will probably get a fever...so maybe one or two days home before she will have to head right back in for a week.� The BMT is still tentatively scheduled for about 3 weeks from now...as long as Lauren continues to improve.
That's all for now.� Loves and Hugs! :o)� Oh and Timmy Uncle Dylan said thanks for playing baseball with him and soccer with him outside in the backyard today.� I will see ya on Tuesday morning for breakfast...Aunt Nean heads back to work on Monday.
Monday August 21, 2000 � - Happy to report Lauren came home yesterday late afternoon.� She has herself an IV pole as well as a back pack to hold her TPN pump and bag thingers.� I always feel much better when she is home and was thrilled to hear she got out yesterday.
Spoke to Debbie tonight and Lauren is in a better mood, and is eating even more then she was earlier in the week which is great.� She heads back into the Valerie Center on Wednesday for her counts and blood work to check her levels to see if the TPN needs to be adjusted.
Not too much to report on this entry which is fine by me....need these short "good news" posts every so often.
Oh Timmy...I picked up the box of Fruity Pebbles for our first breakfast date since heading back to work!� So far I haven't opened them to eat before I get to you in the AM !!! Heehee
Loves and Hugs! :o))
Saturday August 26, 2000 -� I am happy to report that Lauren is getting better and better as each day goes by.� She is more alert, has a bit more energy and has been smiling and talking more as well...she's almost back to her "old self"�
Two trips this week to the Valerie Center for blood counts and those are climbing up after the last round of Chemo.� The yeast infection in her gut is gone, but she is still having diarrhea and occasionally throwing up from the Flagyll medication.� She is a happy camper because she can eat her raspberries again with her counts being good.� Yesterday she went in for bloodwork and I saw her afterwards....she stopped by my school to visit before the children start, and Lauren was thrilled that she didn't have to be hooked up! :o)
The bone marrow transplant is still tentatively scheduled for September 13, 2000.� The diarrhea has to be gone by then so lets just hope she keeps progressing health wise like she has been over the last week.� A meeting has been set up to include Debbie and Bill, the Oncology team and, the residents and nurses to go over all concerns and to have all questions answered before Lauren checks in for the transplant.
The community is actively planning the Family Fun Day for September 10, 2000.� Since returning to work it seems that every store I go to in Lauren's home town has a flyer up on the window or bulletin board!� The even will benefit Lauren and will I am sure be loads of fun for all who attends.� You can email Sharon for any information regarding the event.
Loves and Hugs....will see ya tomorrow Lauren when you come up to grandma's for a visit.� I won't forget the purple nail polish for ya!� :o)
Tuesday August 30, 2000 -- Happy to report Lauren is doing really well this last week.� She has gained weight since starting her TPN at home and is even eating on her own.� She is back up to 27 pounds!!!� She came up for a visit to Grandma's on Sunday and ate meatballs and pretzels and corn chips.� She came over to my house because she wanted to play with the Labs and just had herself a ball.� I am thrilled to see her happy again.� She still gets tired easily and still has diarrhea, but other then that she is doing really really well.
Loads of tests are scheduled for the next couple weeks leading up to the bone marrow transplant.� Lets see cat Scan, bone scan, MRI,� scan for her kidneys, dental exam, eye exam (I think) and I am sure there is more on this list that I am missing. She also has to continue going into the Valerie Center for blood counts. Basically they have to make sure there is no infection, abscesses, or new tumor growths in any part of her body before they head in for the BMT.
Well that is all for now.� Saturday Lauren is coming with Dylan and I to a huge dog show with Labradors galore!� She is so excited to see all the dogs and many of my online Lab friends will be there and will meet Lauren for the first time.� It will be very special for all of us I am sure! :o)
Wednesday September 6, 2000 - Lauren is pretty much back to her old self attitude wise. She is laughing, playing, smiling and eating!!!� Over the last weekend Debbie, Dylan and I took her to a huge dog show and Lauren loved it.� She had so much fun feeding the dogs treats and playing with them.� She cheered them on in the show ring and climbed into the expens with them when they were relaxing!� Of course we had to do a little shopping at the show too!� On Labor Day she went to the Mall with Debbie and Grandma and again had a good time being out of the house.� And today we all watched Timmy get on the school bus for his very� first day of Kindergarten and Lauren was right there with us waving goodbye to him.�
The TPN only has to run for 5 hours tonight then that will be it.� She is eating well and has gained all the weight back that she lost.� She is 27.5 pounds and has the "booda belly" to prove it. :o) She looks great! The diarrhea is under control but they are running stool samples again to test for the Adno Virus and the Candidia because on the last one last week the yeast was back.
She still has more screenings to go through:
Friday - Hearing Test
Tuesday - Bone Scan
Wednesday - Eye Doctor
Thursday or Friday if she stays on schedule she will be admitted for transplant and the chest x-ray and sinus x-ray will be done...they need that one to be done as close to transplant as possible.
On Monday the 11th Debbie and Bill will be meeting with all of the doctors and nurses involved with the BMT.� Everything will be gone over at this time, questions asked and answered as well as the actual day Lauren will be admitted for transplant.
Busy days ahead.� Lauren is heading to Sesame Street Live on Saturday and the Family Fun Day is on Sunday.� We are all really eager for this BMT to get started but realize this is a serious procedure filled with really scary risks for Lauren.� It is almost like we are finally on top of the treatment hill and once Lauren gets through transplant and back home and well again we all can start going down hill to finish the protocol for good.
Wednesday September 13, 2000 -� The Family Fun Day on Sunday was just wonderful...I should have some pictures to post from it soon.� Lauren was there for the whole event and she had a real good time meeting the community.� Timmy had a blast with the dunk tank, I am not sure I saw him anywhere else but in front of it trying to dunk who ever was in it at the time.� I would just like to publicly thank everyone who worked so hard on it,...from organizing it, to setting it all up, to cooking for it, to volunteering at it and to cleaning it all up at the end,... as well as thank all the local establishments that donated goods for the day. The house band was awesome as well!!!� A special thanks to The Bluesmoke Entertainment and Friends!� The out pouring of affection for our family is overwhelming sometimes, and we do really appreciate it from the bottoms of our hearts.� :o)
Debbie and Bill had a meeting on Monday with all of the staff that will be involved with Lauren's upcoming BMT.� Everyone from the Nurses that will be caring for Lauren up to the Oncologists on her case were there and all questions were answered and final plans were ironed out.�� All but when Lauren will go in was decided.� Lauren has back that yeast in her gut along with a virus called "Adno Virus" (sp) which is very very common to all of us, most common colds and intestinal viruses is this Adno one.....just that if they were to start Lauren with the BMT procedure with this virus it can literally kill her.� So, she needs to have 2 adno free stool samples before she can go in.� Each test takes between 4-6 days to run, so that has pushed the BMT to at least the end of September.� :o(
So we sit and wait for that and Lauren continues with her pre BMT testing stuff....yesterday she went in for a bone scan.� She is down 1 pound since being off of the TPN but she is eating on her own and is looking well.� The diarrhea being back is a disappointment, but we hope it will clear up with the medications that she was put on.
Timmy is having a wonderful time in Kindergarten, he is really enjoying himself.� When I get there in the morning before work to have breakfast he is the first one to greet me with a smile and he always starts the conversation with "Hi Aunt Nean" then something following that about school.� His Fall soccer season just got started and he is still attending karate, so he is one busy kid.
Well that's all for now....Loves and Hugs!� :o)� Lauren and Timmy, I will see you guys on Friday morning to get some of the classroom fish out of your tank!!!
Wednesday September 20, 2000 - Not too much news to report.� We are still waiting for a definite date for Lauren's transplant.� She had I think the last of her tests on Tuesday which was her Eco and Ultrasound, so we are just waiting for the stool samples to come back negative.
She is in wonderful spirits.� What was supposed to be a 10 or 15 minute visit to my classroom (I have no children in class on Monday's) to check on the fish turned into 3 hour visit with Lauren playing and staying for lunch and Jane and I working around her!�� She decided that finger painting would be the activity of choice and we now have 2 wonderful paintings decorating the walls of the school just in time for Open House next week! :o)
She is still eating pretty well, although she is a bit thinner from where she was when she got off of the TPN.� The diarrhea went away for a bit, but it came back, not sure how it is today.� And she throws her food up sometimes hours after she has eaten.� Other then that she is doing wonderfully.� Her personality is back where is should be for a happy 2 year old.� Full of the laughter and silliness with an occasional 2 year old tempertantrum! :o)
Will update as soon as I know when the date of transplant is.
Tuesday October 3, 2000 -� OK OK it's been a while since the last update, I know.� But I tend not to write when Lauren is feeling well.� I will try and do it at least once a week regardless.
We are still waiting to schedule the date for Lauren's BMT.� The test results for the last Adenovirus came back positive.� The Oncology team decided they would try a medication that is used sometimes after a transplant to boost the person's immune system.� The drug is usually given IV and that is how it is marketed, but they have found that sometimes when it is given orally, it has a better result helping treat this virus.� We are keeping our fingers crossed it works with Lauren.
She is feeling very well these days and acting like a typical two year old. Her days are filled with shopping trips, eating fortune cookies, and talking up a storm!� She goes in for blood counts at the Valerie Center as well.� All of her pre transplant test are completed, so basically we sit here and wait.
Timmy is doing very well in Kindergarten and is enjoying his soccer season.� Lauren joins him for games on the weekends and cheers him on like a pro.� A few fundraisers have taken place over the last week, a BBQ, a local car wash and the Gold Outing and they were all a huge success and like we say everyday to people in our lives THANK YOU! :o)
That's all for now.
Loves and Hugs! :o)
October 14, 2000 � -� Things continue to go well with Lauren.� We still do not have a transplant date, but Lauren started the oral medication yesterday, and lets hope it boosts her immune system so that virus finally leaves.��� We are all keeping our fingers crossed that� by the end of October she will be able to go in for the BMT.
Her hair has started to grow back and she has gained some weight in the last couple of weeks.� Her favorite food this week is cheese.� Fortune cookies are still popular but her raspberry obsession has seemed to diminish!� And M&M's...well she looks at them like she has never seen or eaten them before!
Lauren and I are heading to a dog show tomorrow so she can see her favorite Labrador Retriever named Bravo.� We decided to leave mom home to "give her a rest" so it will be fun just the two of us.
Timmy is doing really well with his soccer playing.� I went to one of his games on Wednesday and he and his team mates have come a long way since the beginning!!
Debbie and Bill wanted to post this public thank you:
A big, big thank you to Patti, Jen and Lenny for putting together the golf outing on Oct 3rd. Just like the BBQ, It was another a perfect day! Thanks and *big hugs* to all that attended, we had a great time! Oh, and the pictures from the BBQ will be up soon, I promise.
We would also like to thank Theresa Mobilio, Kimberly Wilborn, Megan Verba, Jessica Lain, Johanna Cerutti, and Emily Corollo. These girls are all students at the Wantage School who took it upon themselves to organize a car wash fundraiser this past Saturday for Lauren. They did an amazing job and with the help of siblings, friends and parents, it was a huge success. Way to go girls!
Please know that our whole family really appreciates everything that everyone has been doing for us.� So again...from the bottom of our hearts...Thanks!!!
That's all for now....Loves and Hugs!
Monday October 23, 2000 -� Lauren is doing really well.� She looks healthy, acts healthy and even has hair growing back on her head!� Dylan and I spent the day with her on Saturday.� She came with us to the mall, Petco and Toys R Us and had a blast!� She is a natural born shopper who is always ready for one more store!� :o)
Ok ok here is the medical stuff I know you guys want to hear about.� We're still in a holding pattern for transplant. Lauren finished the oral IVIG on Thurs. Sent out another test for Adenovirus and Candida. Will hopefully have results early in the week. Since Lauren is looking and feeling so good, we may be able to go with just one negative test instead of two...maybe. If� she stays positive for Adenovirus there is another drug, an antiviral med, that they can use but they hope not to have to because it is pretty toxic to the kidneys.
After conferring with multiple nb specialists two things were decided:
1. Even though it's been over 2 months since Lauren's last chemo they do not want to give her any more chemo agents before transplant. Since all of them would suppress her immune system it would make it harder for her to get rid of the GI bugs. There is always the concern though that this long without anything that if there are any nb cells lurking around they could start growing again at any time.
2. They decided to start her on cis-retinoic acid (Accutane = acne medicine) to buy us some time til we can get to transplant.
This is something that she is scheduled to take after transplant and there is no data for using it before but in theory it should help. It has been proven that retinoic acid can often help prevent relapse by turning off genes in the tumor that are responsible for tumor growth. ** In those neuroblastomas in which retinoic acid can turn off the right genes, the tumor cells stop growing and they do what the cells that formed the tumor in the first place were *supposed* to do, they start to look like neurons (nerve cells)**�� It doesn't work well when there is a lot of tumor present so that's why it is usually used after transplant. But since Lauren is currently NED (No Evidence of Disease) it should also help now. We hope so anyway.
Dr. Kristen is coming for a visit this weekend, it will be great to see her and I am sure Lauren will be thrilled!� Timmy is anxiously awaiting Halloween...this year he is going to be the Grim Reaper...long gone are the days when he wanted nothing more then to be Tigger and bounce his way to the neighbor's doors for candy.� Lauren is going to be a butterfly of course.
That's all for now...loves and hugs! :o)
Tuesday October 31, 2000 -� Happy Halloween all!!� Lauren showed me her costume yesterday morning and I must say...she is the cutest butterfly I have ever seen!� Well finally after all this waiting, Lauren is going to head in for her BMT tomorrow or Thursday.
The oral IVIG worked. The day after she finished it she finally had a negative Adenovirus & Candida test.� Second negative test came in this morning. Deb wishes they� would have tried this stuff sooner considering she's been positive for almost 4 months. Lauren also had some scans redone and she is still NED YEAH!! :o)
After waiting for this for 2 months Debbie is relieved to finally be able to move forward. But now that we are actually here... we are all scared. Deb and Bill� been over all the risks and complications many times since the beginning of Sept (her original transplant date) but when they� sat down to read the consent forms this week she got this huge knot in her stomach. I think we've been spoiled since it's been almost 3 months since her last chemo. She's looking and feeling so good.... we just hate the thought of having to make her so sick again.
I will do my best to keep you as updated as I can, and will get Lauren's BMT schedule posted as soon as I know what it is.� She is going to start with a strong Chemo when she gets into the hospital.� She will be isolated in a room with either Debbie or Bill and will have limited visitors who will have to suit up in order to go in to see her.� Debbie will have a laptop with her so she can stay in touch with family and friends and will switch on and off with Bill during the weeks.� We are hoping for a short stay, but realize that it can be as long as 12 weeks.�
That's all for now...loves and hugs.� :o)
Thursday November 9, 2000 -� Here we are at day +1, Lauren received her stem cells back yesterday afternoon...didn't take long..the whole *transplant lasted 15-20 minutes and Lauren did fine.� She was dosing for most of it because of the meds she was given before hand.� She received Tylenol, cortisone and benadryl before the cells were given back to her and she was hooked up to a heart monitor for a bit as well.�
ANC is 85...basically zero. Platelets are down to 60. She'll get a transfusion once they hit 20.
Her *sunburn* rash that she got a few days ago is doing better though she's still getting Benadryl for the itching. The meds that Lauren is currently on are: benadryl, neupogen, Ambisome (anti fungal), Acyclovir (anti viral), TPN (total parenteral nutrition)= food, Potassium - her potassium level has been really low so they've given her two 4 hr infusions to help bring it up. She'll probably start on morphine in the next day or two, once the mouth/throat sores start.� Antibiotics will be started once she spikes a fever.
So basically now we sit and wait for Lauren to start climbing up with her counts.� This week is just like the week she is home after a round of Chemo waiting for the famous fever that she would usually get as she crashed.
Timmy celebrated his 6th Birthday yesterday and today is Debbie's Birthday!� Saturday we get to have some fun down at the roller rink at Timmy's party!� :o)� Well, that is all the news for now...will keep everyone updated on how Lauren is doing in a few days.
Loves and Hugs! :o)
Monday November 13, 2000 -� Lauren is at day +5 and she is doing pretty crappy.� :o(� She spiked a fever 9 hours after receiving her stem cells on Wed and it's just gone downhill from there. No infection in her line (a worry last weekend because of vomiting with flushing) thank goodness. And new cultures haven't grown anything as of yet. She's on Cefapime, Vancomycin & Ambisome (amphoterracin) to help fight whatever it is. The mucositis is pretty severe in her mouth/throat and on the other end too.� She has pretty nasty diarrhea, and some sores too.
She's on the PCA pump for morphine now so that is managing the pain better.� It has been increased twice already. Lauren's hemoglobin was 7 on Saturday so she got blood for that and� her platelets were at 18 yesterday so she got a transfusion. They'd like to keep her platelets above 30 because her PT/PTT (clotting time) is a little high. Hopefully we'll get past the worst of this soon.� I really hate hearing how bad she is doing, when just 2 weeks ago she was happy and playing and being a normal little 2 year old! :o(
Timmy's birthday party was a huge success on Saturday.� We all went roller-skating and even Grandma and my brother Gary got on skates.� I am not sure who had more fun, the 20 kids or us!
Sunday November 19, 2000 - Lauren is at day +10 and is doing a bit better then the last time I wrote.� Sorry for the delay in the journal but I have been home with pneumonia :o(
Well lets see, Lauren's ANC was only 80 on Friday...better then when I last reported, yesterday it was 280 and today it is 1280!� We were thrilled to hear that has started to climb up!� The sores in her mouth are a bit better.� Deb says she has a runny nose, and is still pretty cranky.� Her blood pressure is slightly elevated and the doctors may give her a calcium channel blocker to lower it down.
Lauren has been getting blood every 4 days and platelets every other day.� Her fever is gone!� YIPPY!� Some of the chemo drugs have discolored her body a bit, worse then the splotches of darker pigment during her other rounds, and her hair has fallen out again.� But at least she is out of the critical stage of the transplant and on her way to being well again!! :o)
Deb is going to be in the hospital with Lauren for Thanksgiving and Bill and Timmy will be heading down to Bill's parents for 3 days.� And this ought to make family and friends laugh a bit, the rest of the family (Mom, Dad, Gary, Elizabeth) will be here at my house for Thanksgiving dinner!� This should be one to remember with 6 people and 5 Labrador Retrievers!� Hey Lauren, I will let you know if Chloe steals the turkey or if Molson gets any mash potatoes! ;o)
Loves and Hugs
PS.� Lauren Molson says keep getting stronger....he can't wait to come and see you, sit in your lap and give you puppy kisses!!!
Friday November 24, 2000 - Lauren is now at day +16 and her counts are doing great. Well her ANC is anyway.� She got to stop the GCSF
(Neupogen) on day 12 because her ANC jumped to 8000! It was down to 3200 yesterday. She is still needing platelets every other day but hasn't needed RBC's since day +8. Hgb seems to be holding right now at 9.2. They've removed the antibiotics and antifungal and are weaning down the morphine. They're weaning her down really slowly so she'll hopefully be off by Tuesday. They are cutting back the TPN in the hopes that she'll try to eat/drink something on her own soon. Her mouth sores are all healed and the puffiness is starting to go down. She's finally sitting up to watch videos and playing a little. She's still tires very quickly but oh what a
change from last week. They think Lauren has about another 7-10 days til she can go home.
On Thusday Bill and Debbie have a meeting with the Radiation Oncologist to schedule Lauren's radiation.� They think once or twice a day for 2 weeks.
Hope everyone had a nice Thanksgiving!� We had a really nice dinner even though one of my dogs licked the yams when they were cooling...but hey what's a little dog spit in the meal!!
That's all for now...loves and hugs! :o)
Saturday December 2, 2000 -� I have great news to pass along, LAUREN IS HOME!� She was released yesterday afternoon!� She was so excited to see Timmy and just loved her new butterfly room.� :o)� Although she wouldn't talk to me on the phone, I could hear her in the background and that was good enough for me.
Lauren's counts dropped slightly...down in the 900's but she was still well enough to be released.� Her hemoglobin is holding and she prob won't need blood until later in the week.� She came home on the TPN, she is getting 60% of her calories and while on the phone with Debbie last night she was eating elbow macaroni with tomato sauce on it.�� She is still on the anti viral medication and she tested positive for C-diff in her stomach.� The medication they like to use for that Lauren can not tolerate (Flagyl), so Deb has to give her something different....of course I can't remember the name of the powder but it's the stuff found in yogurt that helps return the proper bacteria in your stomach.
Tomorrow they are all heading to the hospital for a Christmas party.� Lauren got the OK to go see Santa.� She has to be masked any time she goes out in public but she doesn't seem to mind that.� If anyone knows of where to purchase child sized face masks, please email me.� The hospital is going to try to locate a company but that is proving not to be an easy task.� There are some restrictions for Lauren while she is home� recouping, such as no live plants in the house....but they can have real Christmas tree, no fresh fruits or vegetables, her contact with other children is limited and of course if anyone is even slightly ill or exposed to an illness they can not come in contact with her and I am sure there are a few more that I am forgetting.� Deb, Bill and Timmy all received the flu shot to minimize the chance of any of them bringing it home.�
Well, that is all for now.� I will update in a few days to let you all know how she is doing and to inform you of Lauren's radiation schedule.� It has not been ironed out yet, but it should start and be completed by Christmas.
Friday December 8, 2000 - I finally got to see Lauren on Wednesday and she looks pretty good!� She was talkative, playful and was eating popcorn at 7:30 in the morning.� She was so excited to show me her new butterfly room, but told me she was mad that I didn't see her "forever."� Dr Kline says she's doing great. She's a little achy in the joints (probably because she was basically immobile for a month) and still having some pretty big mood swings (Deb calls them her "Linda Blair" moments) but all in all she's looking good.
Radiation schedule was determined earlier this week.� Lauren went in for CT scan & radiation prep (measuring, marking, positioning, molds)� then up to the Valerie Center for a 1 hour infusion of Pentamadine, which is a medication to cover her for pneumonia (especially Pneumocystis). Normally she takes Bactrim orally at home for this but she can't for a wile because it would drop her counts.
She goes back down to Radiation today for a simulation run. This way they can make sure the radiation is going exactly where it is supposed to be and make any final adjustments. With that all done and set we'll start the actual treatments on Monday. She'll have two treatments a day for 7 days (not on Saturday or Sunday though). Since Lauren needs anesthesia for all of these treatments, it's a good thing she's still on TPN because she'll need be fasted (no food or water) for most of those 7 days.� There are apartments across the street from the hospital that Deb and Lauren will stay in at night and they can go back in between treatments instead of coming all the way home and back again.
Deb wanted to say Thanks to some special people:
- All the nurses & residents that took care of Lauren (& us) while she was in for transplant.
-Dr Amy for taking such good care of Lauren
-Gretchen, Chris, Barb, Noelle & Margaret for helping us through some really rough days.
-Chris for those adorable Tweetie slippers
-Dr John for the giant Rugrats movie poster
-Patty for my Thanksgiving dinner
-Michelle & Kelly for bringing cool toys to keep Lauren happy, for playing with her and keeping her company so we could get out for a bit.
-Cathy for "everything"
��� Thanks Guys!!� We appreciate all that you did!
And Thanks to everyone for all the good thoughts and prayers!
Sunday December 10, 2000 - Just want to let you all know that I am going to take a break from maintaining the webpage.� Thank you so much for walking this journey with us for the last 10 months.� The amount of prayers and love for Lauren has been overwhelming and very much appreciated.
As you know from my last entry, Lauren starts her radiation treatments tomorrow and the next step in the protocol is the Accutane.� I plan on resuming the journal after the holidays.
So everyone have a great holiday and a happy and safe New Year....see you in 2001!
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