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Thursday, December 29, 2005 8:53 PM CST

Hey Guys! Everything's fine here at the Robertson's! I ordered my new American Girl doll...yay, another one! That makes 9...I'm getting Josefina(j pronounced like h) The New Mexican one from 1824. Right now we're watching Fanastic 4 that Alec got for X-mas. It's a good movie except I don't like the part where the evil metal dude Electrecutes hole through everyone he meets....I don't like movies with Human Suffering, Like I can watch Lord of the Rings but not Star Wars 3 where Anakin gets burned and cut to bits and is screaming! WEll, I won't be back to update till Sunday night so HAPPY NEW YEARS EVERYONE!! I hope not so many kids and Adults don't die from Stupid Diseases this year and I hope they find MORE CURES! My New years Resolution is to write every Goverment Official there is until they take more action!! =)

Happy New years!

Love, Sammi

Wednesday, December 28, 2005 3:04 PM CST

Hey Guys! We just got back from Clinton Twns. to drop off Nick home...Snap it! I like it when Nik's home. Now, as nik would say, I'm a sad panda... Well Nothin' really going on so I'll update lata!

Love, Sammi

Tuesday, December 27, 2005 10:23 AM CST

Hey guys! New song, yay! I just like Miss Independant so... Anyway Mom ordered Candlelighter Beads a couple weeks ago and I just got them today! It's where they have beads for a lot of different procedures....like I have,

A Gold Ribbon Diagnostic Bead
A Red Shriveled Ball(Eew)Biopsy Complete Bead
A Gold Ribbon CandleLighters kid Bead
A Gold rectangle that says Courage for a Central line put in
A Smily Face square for Central line surgically taken out
A colorful Plane for A wish trip
A orange and white Ball for Nuclear med. Scan
A Green turtle ICU/PICU bead
A purpe star General surgery bead
Two TPN beads, which are Black and White rectangles
Two blue wavy bagel shaped beads for Lumbar puncture
5 bone shaped x-rays beads
5 Sedation Moon beads(thought I had more than that...I'll ask mom)
8 Different colored Cat beads for CT scans
10 Clear tube shunt Insertion beads
10 Different Colored Butterfly beads for Oral Medication
10 In horpital addmission(I've definatly had more than that too!)
15 Clear flower I.V. Infusion beads
15 Sun MRI beads
25 Colorful Bagel beads for Fingerpokes!


Wow I HAVE gone through a lot....sheesh! If you want to get some beads for someone you can go to candlelighters.org and go to store at the top of the page and find Hero Beads. Well Dads picking us up so me and Alec can spend some of our x-mas money...I GOT 125 DOLLORS!! I'm loving all the mail I'm getting from Audreys Umbrella. They are AWESOME!! And thank you to everyone else who has sent me money! I am going to the mall to get my ears peirced, we had to take my double peircings in my ear lobes out because of a cat scan.

Love, Sammi

Sunday, December 25, 2005 4:18 PM CST

MERRY CHRISTMAS PEOPLE!!! I can't beleive after all these 12(or for some 30 days)days, now it's over....BUT I STILL GOT SOME AWESOME PRESENTS! And A Christmas Story is still on=) that's a plus! What I got at dads

1. A Princess Jasine doll(what?...I like dolls!)
2. A Princess Belle doll
3. A metal detector(time to find a coin worth 50,000$!)
4. An Elizabeth American Girl doll(probably my favorite at dad's!
5. Elisabeth's Christmas Ball Gown.(A green silk with flowers all over and a Gold Kirtle with the Green/silk/flower trim and lace!)
6. Elisabeth's Green, Velvet Cloak
7. A Princess Belle Polly with little plastic clothes(don't mock me...I like dressing my dolls!)

At mom's

1. "Raising Helen" the movie
2. "Gold Member", Austin Powers 3! (yeah baby!)
3. A cool Audreys Umbrella shirt(I will wear it all the time)
4. A pair of comfy grey stretcy pants.
5. Yahtzee
6. Some American Girl Body Lotion, Shampoo Conditioner,and Styling Gel
7. A big Make-up kit
8. A Heart-Shaped Tin with *22* pairs of really pretty earings!
9. And Nik gave me A 20$bill all balled up and wrapped with tape all around the package(that's lazy old Nik for you...)
10. Mom's big present for me didn't come yet because they didn't have anymore...but I'm waiting!

Thanks for another great Christmas mom and dad!! You're the AWESOMEST!!(that's a word in this case!)

Merry Christmas everyone!!

Love, Sammi

Saturday, December 24, 2005 5:06 PM CST

Hey Guys!! OMG!! MERRY CHRISTMAS EVE!! I can't beleive it's finally here....but at the same time I can't beleive so many families have to celebrate without their precious angels. So many Brave Heroes have died this year.....Please take a moment to pray for a Very Merry X-Mas for their families!


caringbridge.org/mi/emeraldisle
caringbridge.org/ky/ryanbrown
caringbridge.org/va/cody
caringbridge.org/ga/sugarbear
caringbridge.org/ga/victorianewsome


And a lot more. Just pray for them and their families!

Anyway I'm going to my dads tonight and then coming back to moms to open her presents around 11 or something! Oy....Well again MERRY X-MAS AND A HAPPY NEW YEAR!! I'll probably write tommorrow! Thanks for all the mail guys too!

Love, sammi

Friday, December 23, 2005 2:26 PM CST

Heeeyyyyyy guys!! IT'S CHRISTMAS BREAK!! Fin-uh-lee!! This year has gone by soooo fast, I guess it's just middle school. Anyway...It's been such a PERFECT day! First we had the Wrestling match, and We(the 7th grade dance team)Danced in front of the WHOLE school! And we were AWESOME!! Well I'll update later, I waqnt to soak in my Perfect day!!

Love, Sammi

Wednesday, December 21, 2005 8:17 PM CST

Hey Guys!! The dance was really fun except this one boy named Mark was being a goof and Club-Dancin(if you know what I mean) with all the girls! After I saw him do it to some of my friends I was watching out but he came up to me during the Macarena and as soon as he got close enough I pushed him over! Ha Ha Anyway that was the Drama for this dance! I've been getting a lot of mail from Audreys Umbrella... Yesterday I got 4 letters! Today I only got one but THANKS JANET!! She gave me 5 packs of gum....which is like Alcohol trading in the 30's in my school!!

Lata! Sammi

Tuesday, December 20, 2005 4:12 PM CST

I have a x-mas dance and have to be there by 5:45 so I have to Go!! Gotta eat! You know me...

Love, Sammi

***Sammi had a lot of fun at the dance. She's riding to school with a new friend tomorrow, Sarah. Altho tomorrow she usually gets to sleep in because school doesn't start until 9am, she has to be there at 7:45 for dance practice. But she sounds excited about getting a ride from Sarah. Her dance thing is on Friday and they said parents can watch....so I'll be there for sure. She's put a lot of work into this and it will be cool to see how well it turns out. She's tired as usual but seems pretty happy. Her progress report has 2 B's on it, but she told me her math grade is already higher and her gym grade for some reason is a B . She will check with her gym teacher tomorrow to see why....Ok we're going to bed. Love, Ellen and her beautiful daughter, Samantha Jean Elisabeth.....

Monday, December 19, 2005 3:11 PM CST

Hey People! I'm a still really tired but I have dance(both school and Jazz) so oh well.....But I GET TO DO AMERICAN IDOL AGAIN!! For jazz, for those of you who don't know we do a thing each week where one person dances in front of the whole class and this week it's parenys week so I'll dance for them too including mom! Well I gotta go, The wrestling match where we dance is Fri. and we need to practice!! will update lata!

Love, Sammi


****Tues Morning...Sam did really well in her dance class last night, they let the parents watch. There was the brother of one of the girls that participated and he was really funny. The girls had a great time and their teacher, Miss Cindy, is really good with them. Sam said they always have a lot of fun. Sam is probably 2-3 years older than the other girls, but she fits in physically. I'm hoping next year they can fit her in another class, with kids her age. She did really well on her solo...she's really good. She's still tired a lot but she's doing ok. I saw Bryans mom at school yesterday, he's the boy who has medulloblastoma and goes to her school. He was on the honor roll too....He's doing well...

Sunday, December 18, 2005 8:12 PM CST

Hi! I'm not crabby anymore..... am I CAITLIN!? Well we had one H-E-double hocky sticks of a time at dad's! Alec has still been hackin up some lungs and ribs...Ok actually they're dry heaves...but after alec barfed for the umpteenth time dad said this Zoloft is rediculus and Alec said it helps with my anxiety and dad said you don't have anxiety and I said Alec thinks he does so he probably does and dad said Alec's been convinced of it!(how rude is that, I ask you!) So Alec said so you think kids are stupid? (aha, Alec's sensitivity is paying off, thought I!) Dad said no thats not what I meant. Ans that concludes our evening! oh crap my shoulder pains are back....i'll have to write later

sammi

Friday, December 16, 2005 7:10 PM CST

All of Sam's bloodwork came back normal, but she did wake up with a horrible cold today. Last time she had a cold she ended up in the hospital. So at 3am I went out to the store to get her some Vicks Vapo-rub. She hated it but she said it worked. Our goal is to keep her nose clear so she can take her desmo. Otherwise she gets dehydrated, then we go to the hospital. And that's no fun. I just talked to her and she sounds ok, tired but she's not snapping at me or screaming at me or moving away from me like I'm the plague. OY she's a crabby girl when she doesn't feel good. Caitlin got a little taste of "Crabby Sammi" and said, "Wow she really does get crabby doesn't she?"....Yeah!!!

Thursday, December 15, 2005 10:35 AM CST

I had to pick up Sam from school today, she's tired, crabby as hell and not feeling good. She sounds like she's getting a cold. Alec has been dry heaving for 2 days...So needless to say, we haven't been having much fun around here. I'm taking them both to the doctor at 1:45. Sam did go to her concert last night, she had fun but I could tell she didn't really feel good. I work the weekend then I'm off for a week...Yoo Hoo...I need it... Love, Ellen

Wednesday, December 14, 2005 4:30 PM CST

Off to a Chorus Concert...will update later!!

Love, Sammi

Monday, December 12, 2005 2:35 PM CST

OH MY GOD!! Kueool day! Okay, I got home and popped some cookie dough in my mouth(yeah yeah it's unhealthy, but I love the stuff!) and opened a package I got in the mail....there were 2 things in it. The first was a gingerbread house.....and a check! mom says I can't tell how much but THANK YOU SOOOOOO MUCH JEFFERY C. OTT!!! I can't beleive how much i've been given these past two years! There are so many nice people in this world I can't even thank all of you guys!

So another thing....OH MY LORD! You HAVE TO check out zoe's web site! I burst out laughing for some odd reason at how seriously cute she looked! I can't get over how good and CUTE she looks! www.caringbridge.org/mi/4theloveofzoe

That's really all for now.

THANKS AGAIN JEFFERY!!

Love, Sammi

Monday, December 12, 2005 8:20 AM CST

Sam is fine, she was pretty upset with DJ, I told her that his perspective as a 10 year old boy who has never seen anything like this is much different than hers. I think intellectually she knows what I'm talking about, but the caring side of her has just taken over. We had a fun weekend, went to get our tree, which is so "Charlie Brownish", it's funny. But it fits in our living room and the kids like it. They both wanted different trees of course....so we had the people at the stnad pick it for us. They picked Sam's so Alec gets to pick next year, no questions asked. I'm going to start my shopping today, finally. Should be fun. It's really cold here this week, down to 4 degrees tonight....YUCK...

Thank you to Audreys Umbrella for all the packages and cards she's received so far....It's going to be a fun month. Ellen

Sunday, December 11, 2005 11:46 AM CST

Of all the Ignorant things to say, what Alec's friend DJ said last night was the worst! We were doing a Talent show and lets just say The compentition between women and men were on! The 2nd talent round was a Scary Story Show and Alecs story was funny! He was telling about how One guy killed every one in his city and after they died they turned into....MIKE MEYERS!!
Well me and RaRa cracked up after that because we thought he meant Shrek and Austin Powers! So the whole time we were laughing ourselves silly. After I told my story(a clown named Henry murdering a girl) They were like That wasn't scary! And I said it sure didn't crack you up! Then DJ said the Ignaramous Quote,"I thought it was funny.....I think death is Hilarious!" Well I blew up after that, you can imagine! I yelled,"Oh yeah...You'd think death is a side splitting matter if you would see it happening to kids all bacause of a stupid disease like I have, It's awesome watching loved ones and friends die before you!!" I was sooooo Freakin' mad at him! I could NOT help harping on him about it all night! I hate when boys try to act all MACHO like that! Well now thay won't play with me in the snow Because they are playing with ttheir beloved Play Station! BOYS! Allrighty I need to cool down! I'm gonna listen to Breathing for awhile...That's what I need to do BREATH!

Love, Sammi

Saturday, December 10, 2005 8:25 AM CST

THANKS SUZIE FOR THE AWESOME GRAPHICS ON MY SITE!!! I loooove it! I don't know what to say.....EXCEPT THANKS!!!

So, hi guys! Well I woke up with a sore throat and a little bit of nasuea....(the nasuea went away as soon as I ate, wow...That figures!!) But I still have a sore throat but we are gonna pick RaRa up, get a new coat for alec, some gloves and scarf and all that jazz for me and theeennnnnn.....


WE'RE GOIN' SLEDDIN'!!
YES!!

I've been waiting for this day! We are going to a Park in Trenton calles Elizabeth Park! They have Humongo Hills!Though the hills run down to a fence that makes sure you don't go in the river....Uh oh! Mom almost ran into the fence last year when she tried to sled.(Scoff) Oh Yeah! I met a girl in 8th grade who had a brain tumor too, though she didn't know what kind it was. But sheesh, that makes 4 kids with life threatining illnesses, Daniel with the Pre-Lukemia, Brian with Meddullablastoma, Me with Rathke's cyst and only have one hormone and all that, and this other girl who had a brain tumor! Lordy...

Love, Sammi

Thursday, December 8, 2005 7:11 PM CST

Hey people!! I am doing good....But a few people are not...
www.caringbridge.org(slash)southamerica(slash)alexia. Sorry, for some reason this stupid computer will not let me use apostrephes and slashes!

And Kristina had her scans a couple days ago but she has not updated since....please pray that no news REALLY IS good news! www.caringbridge.org(slash)mi(slash)rosey.

So... nothin really goin on, EXCEPT I AM ON AUDREYS UMBRELLA! It's so Kueool! I'm on December friends at www.braintust.org(slash)umbrella.htm Then you go to December 2005 friends! Since I'm on the website I get a lot of mail and little gist people send by mail. It has a list of stuff I like and collect!!
****The New Snow Globe on my page was brought to you by.....Suzie Ott!!! THANK YOU SUZIE!!! I LOOOOOVE IT!!
THANKS! And I added a new song called "Breathing" I like to listen to it whenever a kid I know dies, I don't know...something about comforts me. It's kind of about loving someone so much you don't care what they do and who they are.....I love it!

Love(and good night really, it's
already 9:45!!) Sammi

UPDATE**9:52 AM!!! WE GOT A SNOW DAY!!! ME AND ALEC WERE PRAYING FOR ONE YESTERDAY AND WE GOT IT, WE GOT IT, OH YEAH YEAH YEAH!! NO SCHOOLING HERE TODAY WHOOO!!! Just snowmen and snowball fights!! YES! FINALLY!

LOVE, SAMMI!!!

Monday, December 5, 2005 3:16 PM CST

Hey guys! I am feeling better....but I still get a lot of headaches here and there. Frankly I DO NOT think it is constipation...I am not the only thing full of crap here! (excuse my rather strong feelings about this!) Really this is what they say is the problem EVERY SINGLE TIME!!! I know what my headaches are and what they mean thank you! (Sad, huh?)

Anyway, I got my Certificate (for getting straight A's and being on Principals List) and a hotdog coupon for 7-11! Kueool, those hotdogs better be big enough for my Seriously Ravenous Appetite!!

Love, Sammi

Friday, December 2, 2005 11:33 AM CST

Sam is at school, I took her at 11:30. I forced her to go. I'm not totally convinced this problem is just the constipation but what do I know. I'm just a mom with a kid who doesn't feel good.

****Sam made it thru the afternoon at school, came home said she's tired, nauseated and headachy. But she made it. They're at Chris' for the weekend. I get them back on Sunday to go to a birthday party for my step mom, Diane who is going to be 60..... And we're picking Nik up on Sunday so he can spend a couple of days with us. I have to work tomorrow, called in sick today because Chris had to work days and I knew Sam wasn't going to feel good. They are going to a Christmas party tomorrow given by Rainbow Wish Connection. That will be fun....

Wednesday, November 30, 2005 4:44 PM CST

Sam is feeling ok, they did a shunt survey which showed a small collection of blood by her valve or whatever it is in her back. So Dr Sood is supposed to look at it tomorrow and I'll call them tomorrow after 10 am and they will tell me what we need to do. Yeah and pigs will start flying tomorrow too!!!

Hopefully she can go to school tomorrow, she has dance practice after school. Ok, I gotta go finish my laundry. Oh I almost forgot. Sam has been chosen to be a featured child on Audreys Umbrella.... www.braintrust.org/umbrella.htm She already got a package in the mail from her "Christmas Fairy", Candy from right here in LI-vonia Michigan. Last month Beth was a featured child....Our kids are famous!!!!

Ok Laundry...yuck


***Thursday am....Sam is holding her head in pain. The headaches get better as the day goes on, I'm making sure she's properly hydrated since that's been a problem in the past. I'm going to try and take her to school for 2nd hour. Gym is first hour and there's no way she could participate in that today. Just waiting for Doc to call, Oh and our toilet overflowed again. I can't even tell you how disgusted I am by my toilet.

Tuesday, November 29, 2005 5:49 PM CST

Well.....My headaches are back. They are the pressure ones that strike. They're kinda like the ones I had after they took my shunt out: When the pressures went up the headaches started and got really bad and happen every thirty secs. and then went away and came back. Except they're not so bad that I'm practicly unconsious from the pain like I was in the hospital. Oy...that's all I need now!! #$

Saturday, November 26, 2005 1:00 PM CST

Hey guys...Another Child has earned his amgel Wings, Elijah. Please go to his site and offer some comfort to his Family. www.caringbridge.org/co/elijahkurtz/. And Another girl named Alexia could really use some prayers, She has a Inteston Infection but her ANC is 0, which means her Immune system is Literally Non-Existant at this point from the Chemo she's on. She's sooooo cute! And you have to see her dance(look at the "see Alexia dance" icon on her site!

On some good notes we went to my Bowling League and I got a 73, 91, annnnddddddd........A *****113*****!!!!! WHOOOOO! Yay for me! Alec wasn't happy of course...Nothing makes him happy except the things he SPECIFICLY asks for as presents! Honestly....I'm am NOT kidding! Especially at bowling, he is ready to commit Suicide every week! Oy Vey!

Love, Sammi

****Please pray for Catie (www.caringbridge.org/ga/catie).. She's been fighting blasted medulloblastoma for 2 year, just got off treatment last week and it looks like she has new tumor....Please sign their guestbook.

Sam and I made a snowman yesterday. I will post pictures as soon as I get them developed. She put hair on it, hat, mittens, hands and a face. We had several people walk by commenting on the cuteness of the snowman. I would like to comment on the cuteness of Sammi. She's a strong, determined, passionate and compassionate young woman. And I love her to death. Nuff said!!!

Thursday, November 24, 2005 1:02 PM EST

Hey People....I'm writing this from from Nana's! Yay, I LOVE it here! Oh yeah....
HAPPY THANKSGIVING!!!
This is the Holiday for us People with "Growth Hormone Induced Pigistic Syndrome"!! Yeahyuh! I love Eating! And it's snowing!! We better have a snow day....we never have them in Wyandotte because we don't have a School Bus System....except the Catholic School. It's Illegal I tell you! We better get a TON of snow, we have like 4 or 5 inches. Except it doesn't pack so we can't even do anything with it!! How rude! 4 days off school and nothin' to do even when it's snowing....all we can do is eat. Though I'm not caomplaining there!!

Love, Sammi

P.S. I better gain some lbs!!

Thursday, November 24, 2005 9:46 AM CST

Well, we got to see Simonne on Tuesday for about 15 mins. She has developed diabetes as a result of her cystic fibrosis and was getting all her training for counting carbs, grams and doing her shots (4 a day, Sam feels lucky now). But it was so good to see her, she looks good and I think she went home that night. We also saw Trina, a cleaning lady at the hospital that was always so nice to us. She asked how much weight Sam had gained since last summer and I proudly told her 19 lbs. Sam now weighs 71. Sam just lights up being at that hospital. It's weird, good, frightening, reassuring and scary all at the same time.

She's been feeling ok, some nausea but I just think she's always going to feel a little off...Just my opinion.

Hope everyone has a happy Thanksgiving...

Monday, November 21, 2005 8:15 PM EST

Hey Guys! It was a good weekend, we went to Nana's and saw her new house. It was really nice, she had to move because The stairs at her old house were getting to be a bit much. But we didn't even get to see Luke and Lily! Dang, My Favorite Cousins.....( On my Dad's side, Aunt Jenni, Don't sweat it!) But we'll see them at the Thanksgiving Dinner, at Aunt Robbin, and Uncle Eddy's house! Yay! Were watching The Best of Will Ferral: Saturday Nite Live, It's scrumptrilascent!!(You'll have to watch it to get that last remark) Soooo....

NIK'S HOME!!!!!
Yeahyuh!

I've been laughing non-stop all day with him, he's good to have around.....

And Thanks for the Message, Jennifer Pochy! Jennifer Lost her Beautiful Daughter to Anaplastic Astrocytoma, a kind of Cancer in her, seriously cute, Daughter's Brain. Her website is www.caringbridge.org/fl/sarahp.

And I had to stay home because we slept through the Alarm because we were really sleepy and Alec and me didn't feel so hot! I went to get my Medicene and realized it was 8:35AM and woke up dad but neither of us felt good anyways....I still don't feel that great, nauseous, Sudden and bad attacks of Heartburn, and A LOT of tiredness. I was unconcious at Nana's! Well I'll see(write to, whaaaaatever!)you 'round!!

Love, Sammi

****Added at 10:06PM....We just called Childrens Hospital and Simmone is an inpatient there...Not that we're happy she's in the hospital but we are going to see her tomorrow. We are so excited. We love Simonne...Her cell phone number got changed, so did mine and she's been in there almost 3 weeks. I was calling every week to see if she was there, she usually goes in twice a year for a "tune-up". I guess I have been busy. She said she's called my number 50 times since she's been in there and no luck. She sounded happy that we called. So we'll be there tomorrow...Woo Hoo... Sam always likes seeing the nurses too....!!

Friday, November 18, 2005 7:37 PM CST

Hey Guys....Okay, Today was the PERFECT day!!! Let's make a list shall we....

1. I had Mc.Donalds for Breakfast!
2. I got my Licsense For ORV's!!(Off Road Vehicle) Even
Thpugh I don't have one to ride...Oh well.
3. In Social Studies I got an A on the map I talked about
Yesterday! Kueool!
4. We had Pizza and I got A REAL BIG peice to master my
Growth Hormone Hunger(otherwise known as Pigistic
Syndrum!) No Idea how to spell that!
5. Then we left for HARRY POTTER AND THE GOBLET OF FIRE!!!
6. The movie was AWESOME!!! You have to see it! It was
"Scrumptrilascent"!! ( ever see Saturday nite live with
Will Ferral?? It's HILARIOUS, YOU HAVE TO SEE THAT
TOO!!!)
7. When I got back to School guess what was waiting for me?

BUM BUM BUMMMMMM.............................................
.............................................................
.........................................

....

Okay I'll tell you.............(Sorry couldn't resist!)


MY REPORT CARD!!!! Now guess what was on it???.................(just kidding!)



8. ALL A's BABY!!! Yay for me!
9. Now I'm done typing,(yay for my hands!)




Soooooo, nothing else really to report except Alec broke one of my Pretty Porcelin Dolls!! MAN! Yeah, he only broke her whole foot off, but I wanted ro see how much they would all be worth! So much for being a Millionire! Thanks a lot Alec!! Just being a jokester, I would never Sell one of my dolls!( in a Gavilliondy Years!)

LOOOOOOVE,(Fridays!)
Sammi.

P.S. 10. It's the weekend!

Wednesday, November 16, 2005 9:44 PM EST

Note: Someone was asking about what I am going to ask Santa for....I love American Girl doll clothes and history books, and Any kind of Doll, and sewing stuff....

Hey Guys! I'm feeling better don't really know what was up yesterday, it just started off and ended up as a baaaad day! But Today was a lot better, first I went swimminmg in gym, WHILE THE BOYS WERE WRESTLING, AND IT WAS ONLY THE GIRLS, AND WE GOT FREEEEE TIME!!! Yeahyuh! And then we Worked on a map in Social Studies where we had to create a 3-D mao of Egypt...I LOVE that creative kind of stuff! In Science we wathched a movie on how you can make works of arts out of DNA like this one guyt did in the 80's, and how you can experimeny on flies by adding and taking away THeir memory cells...Kueool! Then In math we jusat goofed off while doing this math problem...

Which is bigger, I million Nickels or a Mile high Sttack of nickels.

Well I almost got to the anwser but we had to go just as I was getting to the Last part of the last problem...Oh well.

Also Tommorrow is The 1 year anniversery Since Olivia Grace Won the Hard battle Against Intristic Diffuse Pontine Glioma, which most of you know is the most Horrible and Dreaded of ALL Pediatric Cancers. She just got over Another Cancer I think, Though I'm not sure, but the Radiation she got gave that STUPID DPG!!!! Please offer her mom some comfort, she was uch a fighterm to have won over**2** cancers!

www.caringbridge.org/mi/oliviasgrace

P.S> I get to go The New Harry Potter monie with School, they had a raffle and I win so I leave for the Movie at 12:30 and get back at 3:45! Whoohoo! Yeahyuh!

Love, Sammi

Monday, November 14, 2005 8:02 PM CST

Hi! I had Jazz today....It was fun...Hold on dads here.....Kay. He had to drop off my Pltelet-covered clothes. I had(another) BAD nosebleed Honestly, rewind back to the "platelet-covered" part....I'd say I didn't have platelets the way I bleed! I'm like a girl Hemopheliac, it wouldn't be the first time I made the "MEDICAL MIRACLE FILE"!! I immediatly get all over my right hand, theh I tried to stem the flow with my other hand and the blood ended up all down my left hand, into my sleeve and drenched it then moved on to attack my MEDICAL ALERT bracelet! Well thats really all for today....except Jakes mom wants to know about anyone out there that has had at least 17 Weeks of Chemo because Jake is off to have his 17th tommorrow...Wow, GO JAKE!! www.caringbridge.org/la/jakeowen.

Love, Sammi

Sunday, November 13, 2005 5:24 PM CST

Hey Guys! Well we had Alecs bowling Party.....But, NO ONE came! Poor kid....you can leave him a message about how rotten those kids are at www.caringbridge.org/visit/alecrc So all that were at the party were me, RaRa, DJ(alecs best friend!), Dj's family, and mom, and dad! Lord....Well I have been real tired since bowling...don't know what this is about. Oh-well, My desmo was a spray when we got it from the pharmacy so it doesn't work as good so it only last for about 4 hours, instead of the usual 12! Oh Boy, I've probably been dehydrated the whole weekend.....I get the Nose Tube tommorrow, the kind of desmo I usually use.

Love, Sammi

Friday, November 11, 2005 6:30 PM CST

Hey! I added a new song...."Breakaway" by Kelly Clarkson. I looooove Kelly Clarkson, the way she sings makes us Women(or in my case girls!) sound Independant, Strong, and Her voice is Amazing! I like "breakaway" because to me it talks about how we do something(s) worthwhile in our lives and then pass on to Heaven. Like all the CB angels do...They teach us lessons not everyone gets to learn from someone else, which makes the Angel's lives even more special, and we pass on the lessons we have learned. Anyway, I really like her songs and so I put one of them on my site! The End!

Also I forgot to say We(alec and me)got a new Hamster! Alec dodn't like any of the names I picked(Uhhh! I wanted to keep up the Angel Legacy!)and we finally settled on Micky. She(I think it's a she) =( Has quite a pair of Ears! They are really big for a hamster, but I think she still has to grow into them! She is only a few weeks old so she is really small! She is adorable too! She is grey with wgite shoulders and big brown eyes! Awwwwww... Abby is giving her the evil eye though! Eh-oh! Well we are watching" The documentry of Anne Frank" I LOVE HISTORY!!! It's so sad though, how low humans can sink when it comes to "Ruling the world!"=( Aye....

Love, Sammi

***Happy Veterans Day at 11:00 p.m.
(Honor all the CB Angels and fighters alike! They are all Veterans in my mind!)

Thursday, November 10, 2005 8:19 PM CST

Well... HI! We had a dance team meeting today! We are dancing to a mix on December 23, 2005! To the Wrestling meeting, Yay! And in gym we are doing tumbling....I'm am pretty popular these days, at least when it comes to the people-lifting-other-people-on-feet-knees-hands-etc. I guess it does have something to do with the fact I ONLY WEIGH 69 POUNDS!!!! I get pretty dizzy when I do the Forard rolls though and I get a headache when we do headstands! eh-oh...oh well. Oh! And we are doing this build a body thing in Science where two people, boy and girl, are "married" and then make a Paper o'kid and base the kid on what the "parents look like. Well, I of course get stuck with the held-backer kid, and I was surprised to find he wasn't as obnoxious as he was to the teachers! Well, we were talking about how The held-backer had ADD and that was why he got bad grades, and I said I missed 6 months of school and still got Honor Roll. Ashley who was sitting next to him siad why? and I said I was busy having 9 surgeries that year! The held-backer(mike, actually)said,"Oh yeah, the girl at my lunch table said to be nice to you 'cause of that!" Uh! How RUDE!! I don't like being the subject of school-wide pity, thank you! I asked them who said it and he said she was short with brown hair and her name was Megan! Well I'm assuming it was Megan Heck, a girl in my 6th back to 2nd grade class! Lordy, girl! She should know I don't need that!


And to top that Ice Cream Sundae(I do NOT like nuts!) On Wednesday I got pushed into the wall in school accidently and scraped my elbow off and it still hurts now, and later as I was coming out of school someone tripped me though THAT was on PURPOSE!! MEAN!

(actually I'm allergic to peanuts and wom't take my chances with other nuts!)

Love, Sammi

3 monthes till my Birthday!!

Tuesday, November 8, 2005 7:00 PM CST

Maddie also died yesterday...caringbridge.org/mi/trimpermld. She was such a cute girl, she went through complete crap to finally get to heaven. She was the 2nd child in her family to be diagnosed with a fatal disease, but all 3 of their children have what Maddie had, that has GOT to be rough. They are such a strong family!

Allright at Emeralds we mostly played with their adorable Chihuahua, Blitzen and played with Emerald's sister Anya and Brother Ian. They are sooo cute! Emerald was sooo pretty! I always hate leaving her house, I guess because at her Birthday Party when we left her I just had this feeling that something would happen between then and the next time I would see her, the next Tuesday. I can't explain it, I just did NOT want to leave her. And then the next Monday Mom called and said Emerald was vomiting, and mumbling and all that. We rushed to her house after Jazz( a very emotional Jazz lesson)and stayed at her side until almost 10, again I had to leave her...even though I knew, even though mom told me we would go again Tuesday, I did NOT want to leave her again. It was the last time I saw her. Kim understandably just wanted for us to stay at home and since Emerald was a lot Better, Kim took her to the movies to spend some Quality time with her. The Following Sunday I heard....She Earned her long-deserved Angel Wings. We never even said two words but I Loved her like a friend I've known for years. We had a connection....


The thoughts of the day.
Sammi

**I'm adding the angel Wallpaper on my website in homor of all the Sweet CB Angels.**

Monday, November 7, 2005 8:42 PM CST

**Angels who have gone take their Spirit but they always leave behind their memory and the lessons they've taught to the lucky people that knew them.**

-Samantha Robertson.-

www.caringbridge.org/ga/victorianewsome. Victoria Earned her Wings today.....Her Wings have got to be as beautiful as she was! She was an angel even on Earth...Now she has her long blond hair and her health back. Please take a minute and go comfort her family, It must be so heart-wrenching to lose such a Precious girl. As it is Heart-wrenching to lose anyone, but Kids with Cancer and other diseases fight so hard...It is always as if there is something more to do when it is just best to hold your child tight and let God take them into his arms. Sometimes it's best to let go....but Victoria was battling sooo hard against that crappy, worthless Monster! It really looked like she might just beat this, but...well I guess the best thing we can do is go give her family a comforting sentence and pray for Victoria and her family amd friends.

Well, I got hit in the Face AGAIN!!!Right in the Schnozz!(good thing I have a metal plate, I didn't even feel it the other day, though I felt my nose getting hit big time!)With a basket ball! Lordy...And I forgot to tell you about the Nuerologist Appointment. The Hand tremors have stopped, I think it was the Elevil because my hands stopped shaking after I stopped the Elivil.Though why it didn't case the shaking hands until after a year and a half after I started it beats me! And the headaches I had been having were also accompanied by achimg joints so we think maybe I was getting too much GH. I was up to 1.7! now were back down to 1.5 for the growth hormone...speaking of which I have to do the shot now...I'll tell you about Emeralds tomorrow, we went to visit Kim today.

Love, Sammi.

*************PLEASE PRAY FOR JACOB, WHO IS FIGHTING FOR HIS LIFE IN A HOSPITAL IN FLORIDA...THIS FAMILY IS SO STRONG AND INSPIRATIONAL....

http://www.caringbridge.org/fl/jacob

Friday, November 4, 2005 6:29 PM CST

Alrighty boys, We have exactly 2.5.1-oh-hundred-hours until Caringbridge shutdown! Lets get to updating....HOP TO IT!!!!Left...Left...Left, Right, Left!(hands typing, not feet marching!) So, Really I've been the Reading Natzi today....First the Newest Series of Unfortunate Events, "Penultimate Peril". It's the book to read if you feel your the bearer of all bad tidings! And Lemony Snicket has a knack for makeing little funny comments that are rather amusing. They are really a good series so ignore the "warnings" on the back covers! And I just finished reading"Lady of Ch'iao Kuo, Warrior of the South. Southern China, A.D. 531" It's a Royal Diary Series. Another really good series! **286** pages...I'm a fast reader(not trying to toot my own horn, except I just did, oops..)I guess. The Unfortunate events is long too. Oh Yeah! Some Bozo playing basket ball with my gym class decided to show off his Lay-Out skills and lofted the ball really hard from one side of the court to the other and SMOKED( I mean SMOOOOOOOKED!!!) me in the side of my head! That kid would have been eating all the worst hospital food I forced down his throat if he hit me in the back or if I had a VP shunt!!!!!! He bent my glasses so they are totally lopsided and bent back so they are touching my Eye lashes!!! Crap, He threw that ball hard! I didn't even know what happened at first!! I couldn't even feel my face after! He should try out for Base ball.... I still have a headache...MAJOR HEAD WHIPLASH HONESTLY!! Uh-oh! NO ABBY! NO CANDY!!! THAT"S MY HOLLOWWEEN CANDY, I WALKED A MILE TO GET IT WHILE YOU WERE PLAYING WITH ALECS PARACHUTE MAN OR FALLING OFF THE BED BECAUSE, UNLIKE EVERY CAT YOU CAN'T LAND ON YOUR FEET!! You know you have a VERY, no EXTREMLY, or NON-EXISTANT Metabolism!!!!! Gotta go, Honestly!

NO ABBY! You don't need to get flabbier! You get your Kitty-Butt back here with that wrapper!!

Wednesday, November 2, 2005 4:20 PM CST

I got my flu-shot today! It didn't hurt too much, but it sure smarted when Abby-So-Flabby had to rub her head against the exact spot!! OOWWWW! I didn't even cry though!(NO I DID NOT USE EMLA CREAM!! THANK-YOU!) Alec went nuts about it though, he's still complaining, though I think he just wants to try and prove that it DID hurt....I did the same thing last year, I was really mad more than anyrthing so I felt like making a big deal! (gasp) LORD VADOR HAS RISEN!! BUB, BUM, BUUUMMMMM!!! Sorry Alec had to watch the 3rd movie in front of me! Eeewww, they just showed all the little Padawans lying on the floor! Slayed by a Lightsaber, they were. I HATE movies like this! Too much death (premature at least) if you ask me!And too much violence! Well, I had a good Hoolowween...I was a gypsy, Hand-sewed it myself! Got about 2 pillow cases of cAndy...I got to trick-or-treat at My old neigborhood, My new one, and RaRa's Botchi(polish for Grandma)! Whhhoooooo!

Love, Sammi

Tuesday, November 1, 2005 2:26 PM CST

The 2nd Clare died.... 2 Clares have died before their time... I shouldn't have left him on Monday, Nik forgot to feed him seeds,I should have known it would happen...

Sammi
****Note from Mom: Sam, no one could have tried harder to save Clare than you did. Unfortunately honey, he was really sick and you did the best you could. It's no ones fault. I love you!!

Sunday, October 30, 2005 8:53 AM CST

I added 2 more dolls to my Angel List...I'm still not feeling that great I'm still really tired. Mom thought it was the Growth hormone, like I was getting too much but it doesn't explain the pressure headaches I get only once in a while!


P.S. Calvin's family would love some comforting messages right now! See the Journal history for his website!


Love, Sammi

**Update** I know this sounds silly, But please Pray for my Gerbil Clare. I think He poisoned himself by eating his wheel. Alecs just died and we think that's why his died. Clare is really shaky and his eyes won't open. At least pray for his comfort HERE oN EARTH!! prayfor jis healing ON EARTH!! I don't want to lose 2 Clares.

Friday, October 28, 2005 3:08 PM CDT

Calvin Died.... www.caringbridge.org/ga/sugerbear. Have a headache, neckache, heartache... ALL THAT STUPID CRAP!!

Sammi

Friday, October 28, 2005 11:44 AM CDT

God, I feel so horrible. I just forced Sam to go to school for the last 2 hours. She didn't wake up today until 11:30, she was crying as we left the house but then she started feeling a bit better...Her head and neck are hurting. She made it to the dance last night, helped decorate and seems like she had a good time.

She's been chosen for the class trip to Chicago in May. She said they need chaperones. I'm all over it. I can't afford it but I don't care, it's going to be a blast....I love Chicago. I think if I were rich, I'd move there.

About 2 weeks ago, we weaned Sam off her Elavil, just trying to cut down on the number of pills she needs to take. So we're going to start up again and see if that helps the headaches. She started taking it over a year ago to help her sleep and I have noticed that she's going to sleep late again. So we'll start it and see if that helps.

Tomorrow we're having a birthday party for Alec at my dads house and we're going to see if Rachel can spend the night tonight. Sam lights up like a lightening bug when Rachels around.....

Tuesday, October 25, 2005 3:05 PM CDT

Hey Guys....(this is in an exasperated tone) We went to Childrens and All Nancy talked about was a strained back! Where did THAT come from?!? Nothing down there is Hurting, all I said was I was having weird pains that went on and off! And my head was hurting. And I was feeling nausiated! Of course there is more than that, but NOTHING along the lines of a sprained muscle! She thinks it's that because while I was lifting weights at school that is when I felt something snap. It is NOT A FREAKIN' SPRAIN!! Sometimes it seems as though the Neurosurgeons just Don't listen! They just jump to the least troublesome conclusion! Now we are going to wait a week to do the ICP monitor! A week of not feeling good, just what I need! Man, I ALWAYS get sick on te day of something important or fun!! I BETTER NOT MISS THIS DANCE!! I've allready Missed *3* things I have wanted to do the last 2 days!

1. The Parents nite, and dress up nite at dance!
2. The very important Student Council meeting where we discuss the upcomming dance!
3. Now I'm missing The School dance team practice!!!

Sammi.(Grrr)

Monday, October 24, 2005 11:56 AM CDT

*****Update Tues am.... Sam has been complaining of a headache all night and her shunt is sticking out of her back, which looks different than it always has. She says last week she was in gym and they had to lift weights and she felt something in her back snap. She's still sleeping and I'm waiting for a referral for a shunt survey, then we'll go downtown. Hopefully it's just a coincidence...She has a dance to go to on Thursday and she already missed something she was really looking forward to, teaching a dance to her dance class...

I only have 19 hours of sick time and 24 hours to work in the next 2 days. That equals short paycheck and I can't afford that. So we'll see...

Samantha is not having a good day. That shoulder pain she get from time to time has been with her for almost 5 hours today, it's usually not that long lasting. Her head hurts and her neck. So we're waiting for a call from Dr Soods office...It's already 1pm, I hope they call soon, I'm supposed to take Alec to Ohio today...

Note to Jenni - She meant her favorite paternal cousins...of course...


***Update, the doctors office called, they said they reviewed the MRI, it looks awesome....Then they said that if we want, we can come in for an ICP monitor.....She's never had high pressures, except when they took her shunt out, so I don't know how that's going to help. She's sleeping now, if she still feels crappy tomorrow, I'm going to take her downtown. She says she felt something snap in her shunt last week during gym, in the weight room. I have a headache.

Saturday, October 22, 2005 8:44 AM CDT

Hi! I'm off to Nanas! I GET TO SEE MY FAVORITE COUSINS EVA'! LILY AND LUKE! WE'RE HAVIN' A PAAAAAARRTEY! (for Alec's B-day!)
And I have to get ready for Bowling!! Yeeaayuh! This is gonna be an Awesome day, I just know it! I will give another poem tommorrow probably, unless I spend the nite at Nana's! I'll be at nana's until at LEAST Late today, and not sure where I'm going to be tommorrow I think dads so I won't(probably) update till Monday or Tesday if I spend the nite at Nana's!! Yeeeahyuh!

Love, Sammi

Thursday, October 20, 2005 3:27 PM CDT

**Earthly Lessons.**

God saw that you were Hurting
and couldn't bear it any more.
He only wanted to banish,
The pain behind every door.

He knew that you were brave enough,
And had love for all to feel.
He that death could never
banish the lessons you've appealed.

So he took away the pain
that you felt more and more.
He gave you a big bear hug,
And said,"Heaven is all yours!".

Your family, who is just as strong,
though they may feel grieved at first
will come to realize the lessons,
You taught them here on Earth.

HI GUYS!!! RARA IS COMN' OVER RITE NOW!!!! I HAVN"T SEEN HER IN A GOOD WEEK!!! (SCREAM!!) GOTTA FLYYYYYYYYY!

I'LL WRITE LATER!!!
SAMMI!(SCREAM!)

Wednesday, October 19, 2005 2:28 PM CDT

**Only Easier.**

When Someone you know dies,
It feels as though your heart is scattered.
It may feel like nothing else
in your life even matters.

Though, The angel you lost
will help put your soul back together.
even though she(or he!) is not with you now,
She(or he!) is in your memory Forever!

Hour by hour, Day by day
You feel only lost and confused.
Though it will only get easier
For your Family and for you.

Just remember, she(or he!)is up there waiting
Until God decides to bring
you up into his arms,
and give you Angel wings!

Hey Guys! That is another one of the poems I made up( for the Grieving part of my book!). I can give you another tommorrow! Jacob(caringbridge.org/fl/jacob) Needs more prayers! His Bladder has filled up with blood again and he needed a(actually two!) rather risky surgery. I mean, I know what it's like to have your bladder fill up uncontrollably....But not with blood! So at least leave some encouraging messages in his Guestbook! Oh, and pray for Alec.... He fell in gym at school and is basicly moaning in pain. He is going to go to the doctor in 10 mins. It's freally(a cross between Freakily and really!) swollen! Anyway.... News for me. Hmmm, weeeeellll..... I GOT 4TH PLACE IN A MATH MAZE!! I got a sucker, I got a sucker, I got a sucker! Oh yeah! And I'm a represenitive for Student Council! And I'm in a Teen Advisery Board for Bacon Library, The local Library!(Yummy! A place full of books that is named after a food! Now that's my kind of heaven!) Lets see What else? Well My 6th grade Social Studies Teacher had a Baby! His name is Robert Turkowski. awwwww. I heard about it because now she teaches at Wilson where I go now!

Love, Sammi.

P.S. I GOT A SUCKER!!



****Update-4:19 pm****

Like the new picture? I like Abby's motto the best!!

Friday, October 14, 2005 9:15 PM CDT

Hey guys! We just got back from seeing Elisabeth Town! Michael one of my mom's and Aunt Jenny's Friends is in it! I'M RELATED TO A MOVIE STAR! WHOOO! He is the "other cousin". And I got my Progress Report..... STRAIGHT A's BABY! Oh yeah! I have decided on writing poems and publishing them later! I have two sections so far, I'll write the friendship ones tonite that I made up myself!



A true Friend... Well actually that's the one above. Here's the others!

All Weather Friend.

She takes you to the movies,
She gets you an Ice cream.
She would never in a thousand years,
discourage you from your wild dreams.
She'll come not only for the fun times,
But also when you have problems.
She'd do anything anywhere
To try and help you solve them.
She rubs your back when you cry,
And thumps it when you choke!
She weeps when you tell a sad story,
And laughs when it's a joke.
She has all the right emotions
At all the right times.
And whenever you're broke
She lends you a dime.
So you'd best stick with her
She'll take you to the end.
For Best Friends aren't always
just around the bend.



Hands to lend.

Friends aren't hostile,
They have a special bond.
Friends never fight without making up.
And are never off and on.
If they are truly friends,
ones without a flaw
There shouldn't be any bounderies,
or any kids of laws.
Friends are always there
If anything comes up,
From borrowing pencils in class
To sharing straws in a cup.
So if you've found that person,
one you call a friend,
He or she sould always
Have a hand to lend.


Always there.

When you are sick,
He is right by your bed.
He's there with a bowl of soup,
Even if you've already been fed.
If he has had a fight with his brother,
You who knows him best,
Can comfort him like no other.
You both are as close,
As, say... Two peas in a pod.
And if you are always there
You will be envied a lot!

Well that is all I have so far, Tommorrow if I have the time I'll share my Grieving Poems I have too! I'm also moving to my dads new house tommorrow(did I tell you that? Same city of course though, Don't worry!) and have my ultrasound too! Well my neck is hurting....I hit my back on a table at school. Hope I did not do anything! PRAY PLEASE! Thanks...

The next big Poet!

By: Samantha Robertson.

Friday, October 7, 2005 7:58 PM CDT

Hey people! had a good day! i can only type with 1 hand so there wont be any capitrol letters and some(allrite a few!)mistakes. abby is sitting on my lap as we speak! she is a happy camper as long as i'm paying attention to her! she is an awesome pet! i love soooooo much! UH! Alec just took her away! HA! She won't stay on his laaayap! well now he is mad this will NOT be good! Anyway I GOT ****9:18**** SECS ON THE MILE TODAY!!!!!!!!!!!!(2ND GIRL!! MY FRIEND ASHLEY, WHO WAS THE 1ST, WAS ABOUT READY TO FAINT! I THINK SHE PUSHED HERSELF TOO HARD.....) I'M FAST AGAIN! I really though i'd never be as athletic as I was, which I definatly was!! And I got my pictures today! I like them, no sleepy eyes! I will try to find out how to get it on my website, mom says I need a scanner? Well, I have Bowling tommorrow, YES! I love Bowling.... You never get tired doing it, which comes as a good thing especially when you have just come out of surgery! And I've bought more stuff for my Holloween costume....A gypsie. I like being stuff that I can make original, I love being different! I'm almost Proud! Well, I AM PROUD! !

Love, Sammi.....


P.S. STILL PROUD>>> CHECK MY BT SHIRT!!

Thursday, October 6, 2005 4:03 PM CDT

Hey Guys! Good day though alec is doing.....(cough) well you know how it goes when you are having a stressful day except with Alec you can times it by 10! Today I had my first Dance team meeting for shcool, and I got to go to the SCHOLL LIBRARY!!!(uh-huh, oh yeah, You know it!) Loooooove Librarys!
Anyway I just ate and am going Bowling as soon as Alec and mom get done!! Yea!

Love, Sammi

Wednesday, October 5, 2005 6:20 PM CDT

Hey People! Good day, EXCEPT THE TEACHER RUNNING STUDENT COUNCIL HELD THE ELECTIONS YESTERDAY WHILE I WAS AT HOME FINISHING MY WORLD RECORD OF SLEEPING UNDER A SEDATION DRUG!!!!!! I slept almost 48 hours and when I wasn't sleeping I was either lying down or tripping over my own feet! Anyway, heres the deal: She told us to heve our reports in by Monday but I was absent, so she told my dad I had 5 days to turn it in so nooooo problem! well, Yesterday she called in the morning, which is when dad turns his cellphone off to make sure we could all sleep in, and said we needed to call her by 10:00 to make sure I could run!! Well at 2:00 dad finally woke up and got the message! Man! if I only woke up.... I still am mad over the fact that if she had only called later, if dad had left his cell phone on, I could still be in the run! Now I have to be a Represenitive, all they do is help out at dances and speak their minds when they can at meetings! How come I always miss the important stuff when I'm absent?!?

Sammi P.S. Grrrrr

Monday, October 3, 2005 8:14 PM CDT

Can you say CLEAR SCAN??????????? We can!!!!

Sunday, October 2, 2005 12:11 AM CDT

Sam had her MRI this morning. They told Chris to call on Tues for the results....RIIIIIIIGGGGGGGGGHHHHHHHHHHTTTTTTTTTT!!! I will be calling medical records Monday to have them fax it to my Docs office and then my docs office will fax it to me at work....I'm sure it's fine...but it's always worrisome. Sam is feeling good, just a little woozy from the valium. But she didn't have to be sedated..What a brave girl...She said she had a headache, but who wouldn't after all that noise?

We are going to Chris' later to help him start getting packed to move. I still have some stuff over there, so I'm glad I cleaned my house yesterday, gotta make room for more stuff!!!

I'll update tomorrow when I get the results. Love, Ellen

Saturday, October 1, 2005 12:50 AM CDT

So...my eyes are dry but my nose definatly isn't! Oh by the way If you look at my pets of angels list I got a new Gerbil and I seriously loooove it! Clare is sitting on my shoulder just watching as we speak! Mine is so tame! Alec's is really hyper as usual.(I think all his pets are starting to rub off on him!)I'll have to but a bigger cage too as they like to play on stuff. Clare is all white with ruby eyes and alec is brown with biiiiig black eyes, it looks like it's half squirrel! I love how they run into stuff in their running balls! And Bowling was good too, I got a 98, a 68, and a 80! whoo! Lets see, what else? oh, Calvin, my little cousin is turning 2 today so we are going to his Birtyhday Party! Yea! I love goint to Papa's and Diane's!(Granpa and Grandma!) And my arm hurts LIKE A MOTHER!!! Oh yeah! My Endo appoinmtment! Doctor Molts says I have Osteopenia, where I don't have enough Calcium! I don't see why, Cheese is my whole world! But she says it's common with kids with GHD. But I have Grown 9 CENTIMETERS!!! Heck Yeah!! And my new Dosage is 1.5, Now thats Murder in the 1st degree right there! My leg is gonna kill me! It hurts too much in my stomach too! And in 4 weeks it's going to be 1.7!! HOLY CRAP PEOPLE!! And she inreased my Cortef to 3 times a day and I have to switch to the DDAVP pill! Oh man! (barf, throw up, hurl, vomit...) Blahgh! That stuff taste like cuurapp!( strong word, yea yea yea!) well I think thats all for today!

P.S. Prayers needed; see
Journal History!

Love, Sammi


****Sam forgot to ask prayers for herself, her MRI is tomorrow....

Friday, September 30, 2005 6:35 PM CDT

Hey Guys. Well, If you didn't see the update later today please go to Journal History and visit the kids I put up.... They need pratyers! Clare, a little girl who had Leukemia Died yesterday... honestly.... The kids who are still fighting this need prayers so families don't go through this ANYMORE!! I don't even know what to call this disease anymore.....well I don't even know what to write , I willwrite tomorrow after my heads cleared, and my eyes have dried, literally...

an exasperated and heartbroken
Sammi

Friday, September 30, 2005 3:59 PM CDT

PRAYERS NEEDED!!

Madison at caringbridge.org/la/madison

Jake at caringbridge.org/la/jakeowen

Danielle at caringbridge.org/oh/deryck

Dylan at caringbridge.org/me/dylanhartung

Victoria at caringbridge.org/ga/victorianewsome!!

Ok people, hi! well, Actually I have to get my eyes checked but there is a LOT of news at our house so I'll write later!

Pray for all the
CB kids!

Love,Sammi

Tuesday, September 27, 2005 4:38 PM CDT

"Ladies and Gentlemen...."
"Announcing, THE NEW AMERICAN IDOL!"
"Samantha Rooooobertson!"
"The Small Girl with the Biiiiig Moves!"
Bum, Bum, Buuuuuummm!

Allrighty, enough with the Drama Queen Biz! So, Yeah, I did pretty good! I don't see why they don't put me with Kids my age though. I'm with 7 to 11 year olds I think! I beleive I am good enough to be with girls my age personally! well, We went swimming at wilson and My Nails were purple, My lips were blue, And I honestly couldn't get warm!! Moms checking with the tumor board to see if this is normal for kids with Hypopituitarism.(spelled that myself of course!) Oops! Urgh! Caitlin "needs" the pc so.... But I will Update later tonite, Promise!

Sammi.
P.S. all the usual prayers!

***UPDATE by Mommy....Sammi just had her first annual horrible nose bleed!!! She's had a cold for a few days and apparently her nose has had enough. She's worried about some bumps and bruises on her legs....I've been doubling her cortef just to make sure we don't go into adrenal crisis like last time. I know there are some people that have trouble regulating their body temp when they are hypopituitaristic (is that a word?) so I'm going to ck and see if maybe that's why she's so cold when she's swimming. She has about 4ody fat so that could be it too!!!! She did her dance for me today, I can't believe she made the whole thing up in the last couple of days...Back to work for me tomorrow, yuck but I'm off for the weekened....Love, Ellen and Sammi

Monday, September 26, 2005 4:36 PM CDT

Hi!! I have Dance at 7:30 and I am estaaaaaatic! I get to dance in front of the whole class today! We play American Idol except it's where we dance and IIIIII get to do the FIRST week! Not to brag but I suppose I am a rather good dancer. Dancing is one sport where the smaller the better though long legs are good, which I DEFINATLY have! Thats why none of my pants fit, the ones that fit my waist are waayyyy too short for my legs and visa versa! EXCUSE ME! CAITLIN JUST ASKED MOM IF SHE CAN HAVE ABBY WHEN SHE MOVES OUT!! (COUGH) Yeah right, we're talkin bout my Flabby Abby! My first pet bigger than a guinea pig!!!!! Uhhh! Hmph! Scoff! well I have to practice for my dance, I'M GONNA KICK BUTT!!! Oh yeah! Nicole's tumor shrunk! TAKE THAT CANCER!! Oh, Yeah, EVIL JUST GOT BURNED, OWNED, uhh, Beat! Nicole, you just opened up Cancers oven! YOU ROCK!!

Whooooo!

Sammi!

Saturday, September 24, 2005 8:09 AM CDT

****My Salvation Lies In Your Love****


Hey guys..... I just got done watching Emeralds Slide show... Sigh, I remember at a Camp ground, me being a person who asks a thousand question a day, I asked what was the Percentage of kids dying from Brain Tumors and she told me,"about 30She told me that I was one of the very lucky ones. I thought about that for a second, and told her It is just as bad to be a surviver because you watch those you've grown close to be on of those "unlucky ones" Somtimes I think The ones who go to heaven are lucky because they're up there looking down on us, Care free, disease free, and just "up there" while us down here Are battling with Hormone Imbalances, Cancer, And Just the memories of BEING sick! We have to deal with our loss at haveing to wait years to see them but they can watch us the whole time. Though we stay here because *Our salvation lies in their love" and our love for those "lucky" or "unlucky ones". It was after Emerald died that I began to sign Guestbooks. I wanted to make kids who are like her or doing good, whatever, to feel that they aren't alone because they're not. I wanted to make their families feel better. I had, and wanted them, to remember...

Wyle,
Daniel,
Savannah,
Melanie,
Melody,
And all the other Angels in my heart. After Emerald died and Daniel, I realized Their are people hurting and now I'm one of those hurting.

Well I have to get ready for bowling. Jacob, Victoria, and all those Amazing kids need prayers... You acn see my Journal history for their sites.

Love, Sammi.(AKA Thinker!)

Thursday, September 22, 2005 6:30 PM CDT

hey guys. i am very tired today, i think its from swimming *5* lengths of the pool at wilson...then alec had an appointment with his eating doctor. so... i have to do homework then straigh to bed... ohhhh! i have to do all my freakin'(using this strong word demonstrates how tiring it is getting!) medicene! uurrgg! 5 pills and 1 shot! aye.... well i only have a half day so will probably write tommorrow, Victoria still needs prayers, her mom is looking into st. judes for some special trials....caringbridge.org/ga/victorianewsome.

Your VERY tired,

Sammi

Wednesday, September 21, 2005 4:55 PM CDT

Oh my lord!!! This has NOT been a good day!! I'll give you the story....

Ok, went to school and all was well until lunch time. So I was eating my lunchable and all of the sudden I heard my friend Jordan say,"Cool! I've been invited to another party!" So who invited her? My other rather close friend who was in my class in 6th grade!! Hmph! How rude! Alyssa was passing them out right in front of me!! I haven't been invited to a party from school since... I don't even remember!! I know it has been more than a year! Urgg. I guess it's half being sick but what about the other half?!? I don't get it, I invite them all to my party's! Alright enough of that, there's more. So I forgot to tell mom I had a Science club meeting and Dance club meeting! I had to just sign up for dancing and run out and miss the Science club!! Could it get worse of course it could!! I was already all stressed out when I went to feed my pets, I gave the Guinea Pig his usual ton of lettuce and gave the frog his crickets, then comes Wyle my hamster.... All hamsters are light sleepers right? So I poured the Hamster food in and then took the water out of hi cage to fill it. I come back expecting him to be filling his little, expandable cheeks with seeds... He is not moving! Oh my god!! I poked him half expecting him to bite me, the other half thinking the worst! He didn't move! Oh lordy, He had to kick the bocket today! I was already stressed out so I couldn't stop my tears, I can't even now! It's been such a crappy day! So Now two Wyles I know have gone wwwaaayyyy before their time! Man... so now I am trying Gerbils, they are supposed to be really good pets! So I guess we will get them monday....I will write later, I am really tired after all this...


"bad luck is better than no luck at all"

I don't know about that but am trying to be wise at the moment!

Love, Sammi

Tuesday, September 20, 2005 6:35 AM CDT

Hi all...Mom here, Sam's at school and won't be at my house to update until tonight. She saw Dr Sood yesterday...He says she's grown about 10 cms, but that's over about a year, the endo keeps better track of that, but I can tell you she's getting taller. And her feet are growing like crazy. They said her headaches may be from a nerve that goes across your head that they have to cut when they do the craniotomy. Sooooo...they gave her a number of injections into her scalp. My God, I'm so glad I wasn't there. She said it didn't hurt as much as she thought it would. As far as the shoulder pain, he said it could be her gallbladder so they want her to have an ultrasound... And he said he had no idea about the hand tremors, but we have an appt for that Nov 1. Her endo appt is in 10 days, so we'll get to see exactly how much she's grown.

She's wearing her Brain Tumor Survivor shirt to school today....Not sure what precipitated that but she was excited. And Thursday is a dance at school, I hope she'll go. All in all, she's good, little runny nose today, hope it doesn't turn into a cold because that's nervewracking...

We got an email from Nicole today, www.caringbridge.org/nm/nicole, and she said her tumor is getting smaller, We're so happy for you Nicole...Sam will call you this weekend...

Saturday, September 17, 2005 12:21 AM CDT

Hey guys!! I am feeling a little better but a girl named Victoria isn't... she hes Medulla Blastoma like beth but it's going a lot more badly... Aye yi yi! her web page is caringbridge.org/ga/victorianewsome. Pray a lot for her as her mom wants to try a new drug that would probably work but hasn't been tested on kids so her doctors said Victoria probably couldn't use it!! Now that is the Stupidest thing I've NEVER heard!!(except disease itself!) If it has even the slightest chance to work her doctors should try it!! Sheesh, people these days! I know it hasn't even gone on the market but still! So pray for her...

So we went bowling today, I got a 63,82, and a 74! Whoohoo! Oh and we are going to see doctor sood on monday... I get to miss 6th hour for Math!! Now that is the BEST thing I have never heard!! So yesterday and thursday I had those really, really bad cramps where whenever I breathed in it hurt in my chest then traveled to my shoulder. It is scary because it feels like somthing in my shoulders is crossing so I like automatically twitch and jerk! sigh... well nothing really to report except Alecs hampster died yesterday... That kid has bad luck with pets, only 1 has lasted more than a couple months!!

Love, Sammi.

Thursday, September 15, 2005 8:04 PM CDT

We went to Sam's school night tonight, it was a lot of fun. She has really cool teachers and a really good middle school. We looked at Nik and Caitlins pictures from when they were in 8th grade. It's surprising to see how much they have changed. Nik looked like a dork and Caitlin looked like a little girl. Now he's a very grown up, handsome man and Caitlin is a very grown up beatiful woman. Someday that will be Sam. Alec just got home and Sam was hugging him, he wasn't too sure about it. But he had some fun. I am so happy to have them with me and not be in a bad mood....Jeez, stress does not make a good mommy.

Dan and Nick, my two officers that went down to New Orleans came back healthy today. I was so happy to see them. Nick said they were glad they went but really really glad to be home. I am very proud of them. They would hate to hear that but I don't care....Policemen are very modest about what they do. But I am proud.

Wednesday, September 14, 2005 7:29 PM CDT

Sam said she's feeling better today, but she was playing at her dads house and she fell into a pile of "fire ants" at Connors house and she's all itchy. Tomorrow are her school pictures so she's in the shower. I'm so glad she's feeling better. But we will keep the appt with Dr Sood for Monday, so we can set up her MRI. Ahhhh, the joys of MRI time. We have not had the pleasure in almost a year. But I know it will be clear. He snipped that cyst right off her pituitary stalk and it won't ever come back.

Tuesday, September 13, 2005 5:45 PM CDT

Hi all, Ellen here...Sam's really tired and really crabby and I asked her if I could update for her today...I took her to see Dr Sabal. No bad news, she's up to 69 pounds...which is huge...I don't mean that literally, I mean it's a huge step for us...That's about 3 pounds since last time she was there which was about 3 weeks ago. Her optic nerves look good. Her headaches are still there....hand tremors, especially in her right hand, she said her vision gets blurry, but it was fine at the doctors office. I don't know what to think. She is thinking malfunction, I am not sure. Last time it took her a good week to really start the puking, etc...I called the neurosurgeons office and Chris will take her downtown Monday at 1:30 pm. Of course I have to work. But that's ok, I do most of the running and it's fine with me if Chris does it too...

We're praying for James....www.caringbridge.org/europe/jamesc
and Jacob... www.caringbridge.org/fl/jacob and Dakota www.caringbridge.org/sc/dakota...(stem cell transplant)

and Zoe, who's in the hospital for her antibody treatment... www.caringbridge.org/mi/4theloveofzoe...

Love, Sammi and Ellen

Monday, September 12, 2005 2:57 PM CDT

Hey people!! Oh lord, mom called Dr.Sable to make an appointment... I am having weird headaches, like they will start hurting but it blares on and off every few seconds, then goes away for like 10 minutes and then starts all over again. And I really think my vision is getting worse but it's almost like that goes on and off too. And I am having trouble paying attention where I will start thinking of anything and It just starts to lead to other things and then 30 seconds later I realize what I am doing. And I have been really tired!! Aye, why now? I just started school, honestly! ah well, Oh! Jake, a little boy with liver cancer just had surgery to either take out or look to see how many tumors he had,Isn't feeling so hot. He could use a lot of cheerleaders! Well thats really all for today...see ya probably tommorrow!

Love, Sammi.

Saturday, September 10, 2005 6:22 PM CDT

Oh my lord!! Zoe is sooooo cute!! The Birthday party was fun, they even had one of those blown up castle thingys you jump in ...everytime zoe tried to get in she would get in up to her waist and get stuck so all you can see are her legs kicking, trying to get in there!! She is hilarious! And we met Kristina, she was really pretty! LOVE YOUR HAIR!! So, we couldn't decide what to get zoe.... She probably has gotten so many presents. We finaly got her some twin baby dolls, she even screamed when she saw them. Though the funniest thing was when Kristina asked zoe, Are you almost ready for pony tails? Zoe actually said, Whats that? Oh my gosh, poor thing. She is really a funny kid though!! lol well i am really tired all the sudden so i will write later...

Sammi.

HAPPY BIRTHDAY ZOE & KRISTINA!!!!!

www.caringbridge.org/mi/4theloveofzoe

www.caringbridge.org/mi/rosey

Friday, September 9, 2005 8:42 PM CDT

MMMMMMMMH!! (sigh...) hey guys, Aye It started out like the classic Fridays of old.... but went quickly downhill from school,(isn't it supposed to be visa versa?!?) First we go to dads house, and are immediatly bored until 4:00 when America's Most Funniest Home Video's is on.(best show eva!) We went to Rachels to play and we all got into a fight playing badminton. So after that Rara went inside to play on the computer saying it was too hot to play outside! Oh come on!! So we didn't even hardly get to play with her! Aye So after that I get home and, this is the H@pit of the day... Avery, the sweey little baby who needed a Heart Transplant died today....caringbridge.org/ny/averysheart. Honestly Sometimes I have to wonder... WHO THE HECK IS IN CHARGE!! JEEZ I CAN'T STAND LOSING PEOPLE TO A FREAKIN" DISEASE!!! (sorry, just let me yell for a while and say freakin' no offense to god, really!) OK I am totally exhausted so I'll retire... Pray for Cures and long lives for every single person in the world. NO MORE DISEASES THANK YOU!!!!! Allright...

Love, Sammi.

Thursday, September 8, 2005 7:42 PM CDT

HEY GUYS> OK BEST DAY EVA!! Zoe, one of the cutest babies eva(lovin' the eva')had a bone marrow test that said NO CANCER CELLS!!(in non-medical terms) Check her out at caringbridge.org/mi/4theloveofzoe! We are goin'(sorry all the L.A. teachers out there, just talkin' some"town talk"!) to her Birthday-remmissionday PAAARRRRTTTEEEYYYYYYYYY!!!(extra EY!)
YOU ROCK GIRL! And a pretty little girl named Katelin had a NO BLOOD DRAWN-CLINIC DAY/NO TUMOR GROWTH DAY!! Now that's what I'm talkin' 'bout! And Jacob still doing as good as he possibly can. KEEP FIGHTIN' KIDDO!! And a Handsome young man named Jake went down to surgery yesterday... No update on that but please pray for him!!caringbridge.org/la/jakeowen. ROCK ON DUDE!! ARRGGG! Caitlin needs the pc for home work!(called perserverence!)Bye y'all!!

Sammi.(aka Hyper!)

Thursday, September 8, 2005 2:37 PM CDT

Hey Guys, Caitlin needs the computer for homework but look for an update later today or early tommorrow!!!

Love, Sammi(rush!)

Wednesday, September 7, 2005 1:56 PM CDT

Hey Guys! Wow... WILSON IS AWESOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I really liked it except I am not in a class wih Brian DeSana(see journal history) and Kala Love(best friend, err... right alongside you RaRa!! no offense!!). So schedule, schedule...

1: Physical Ed. Mr.Mckee. Gymnasium.(Duh!)

2: Chorus.(Huhhhhhhhh!) Mrs.Kane. rm.34.

3: Language Arts. (I am thinking of starting a school newspaper, they don't even have one!!) Mrs.Mans. rm.215.

4: Social Studies (my fave!) Mrs.Trudell. rm.213.

5: Science. (My First guy teacher ever!! NO! I DO NOT have a crush on him!! He said that one of his students said he taught his DAD!!) Mr.White.(that's not even my favorite color!) rm.211.

6: Math.(I am not gonna miss class, I am not gonna miss class... oops, sorry just mentoring myself!) Mr.Greene. rm. 211.

BOOM! then I am done for the day! But I got in a verbal fight already!! This boy from my gym class just walked by and knocked everyone out of his way saying,"Excuse me." So I said ,"excuse you!" and he called me somthing to do with a FART!! Wow, that was Pathetic!!!! 8th graders... what can ya do?
well I think that is enough for now... see ya!

Teen(almost)Sammi

Wednesday, September 7, 2005 8:01 AM CDT

OHMIGOD....I'm such a baby. I took Sam to school but I couldn't be a normal mom and just leave her there, I had to stay and watch. Bryan Desana, a boy her age with medullablastoma, was there too, but he's in a wheelchair but I was so happy to see him at school. He lives one block from Sam at her dads house. She wants to introduce herself but she was shy. So anyway, I drop her off and she was standing with another girl. All of a sudden this girl leaves Sam and goes off to another group. Sam starts to go after her but then changes her mind and stays by herself. After a few mins, 2 girls run up to her and grab her and she's gone. Just like that. Of course, at this point I've been crying. People would probably look at me and say, Oh this poor woman can't even be happy about her child going to middle school, grow up and accept it. Little did they know I was crying because of the struggles she's had. I just know this year will be better, I already promised her so I hope it happens. OY

Monday, September 5, 2005 5:45 PM CDT

Hey I only have 30 secs... I had to give the Guinea Pig a bath! so just want to say everythings OK!! see ya tommorrow nite!

P.S. Thanks for the nice messages Kelly, and Jake's Aunt Mo, and luke!!

Love, Sam

Monday, September 5, 2005 7:05 AM CDT

Sam went to her dads yesterday so I thought I'd update. She's been feeling pretty good, a few headaches here and there, a back ache or two but nothing that's hanging around. Not much happened this weekend, we went to a park and the kids went on horsey rides and we looked at the water, climbed some trees and then went back home. It was a quiet weekend.

Saturday, September 3, 2005 10:12 AM CDT

Hey guys. School start on Wednesday, it'll be so cool!! Well nothing really going on except Calvin, a boy with an inoperable brainstem tumor appears he is not doing too good. His website is caringbridge.org/ga/sugarbear. Urg...(still hate diseases!) Oh I forgot... PORTER!!(someone at moms work) I like the picture that used to be on the front of my website, Thank you very much!... "It's too close!"(I am mimicking you in case you didn't notice!)If you have any complaints please e-mail them directly to me! Mom is no good at comebacks I must say. And speaking of moms work, two guys named Dan and Nick are going to Louisiana to help out down there. They need prayers because apparently it is a perpetual warzone down there! Today we are going to Joanns to see how much fabric for my Halloween costume would cost. I am going to be Selene the Greek Moon Goddess.(bum, bum, bummmm!) I'll give the details later!

Love, Sammi.

Friday, September 2, 2005 11:36 AM CDT

Hey guys. sigh... A lot of kids have died in the last couple of days. Beebo(jamie) who's story I have been following for a while died day before yesterday. His family could use prayers...(caringbridge.org/europe/beebo. And I have been checking other peoples sites, A little boy named david pessed away august 25th. His website is caringbridge.org/fl/davidjourneynorris. mmmmm! I seriously don't know how much more I can take. I don't know how much any one can take, I don't see how a lot of people can worry about a c on a test or say OH MY GOD!! no one sent me a candy cane for christmas. I don't see how I used to say that just 3 years ago. I don't understand how there isn't a cure for cancer or any other killing disease. If there is going to be the day where we become exctinct, Disease and illnesses will be the cause if we don't find a cure. God help us! You guys help us! Write goverment officials. Any thing that'll help, PLEASE!!

OK.I'm done. On the good side today Jacob (caringbridge.org/fl/jacob) has begun to show signs that his tumor is Dying(not him as was previously thought!). I dare you to tell me that this isn't a miracle!! Now this what i'm talkin' 'bout!! this is what we need more of. Tumors and cancer shrinking and miracles happening when all is lost! Diseases showing signs of going away is just what we need.

OK well nothing going on here... dads looking at a house that has a new couple that has a baby due in december, maybe I can Babysit. I have never been able to take advantage of my babysitting class because I have been sick, But now maybe I'll start looking!!

To Hope and Prayer,
Sammi.

Tuesday, August 30, 2005 2:43 PM CDT

Hi, I got my hair cut today. And we highlighted it. Though the first lady who did it dyed it way too bright and did practically my whole head! So we had to go back and let her tone it. Aye!! So now it looks OK. Now were watching hitch. Oh!! While I was letting my hair dry I saw a article on how Nicole Kiddman was visiting a little boy named dylan who actually has a website on caringbridge!!(small world) www.caringbridge.org/me/dylanhartung. He has Neuroblastoma.He lives in Australia but is in New York for treatment and needs donations to keep him in New York. Well I'll be at my dads until thursday night so see ya then.

P.S. Jacob and Beebo
Could still use
Prayers!
Love,Sammi


**Mommy update...Our friends from Louisiana said they're doing ok, they are north of New Orleans, but the plantation is ok. They just have a lot of downed trees...I'll ck with Sara and see if it's ok if I reprint her email so you can see the picture she sent us. I have never had a "connection" to a hurricane before, I feel like it hit Michigan. Please pray for all the people down there, this is a friggin nightmare.... **Porter, do you like the new picture???

Monday, August 29, 2005 8:02 PM CDT

Hey people... Another little boy is ready to go heaven. His name is Jamie, and he has Nueroblastoma. Please offer all the comfort you have for his family.(caringbridge.org/europe/beebo) Scream!!I HATE CANCER!!!!!(oh, I cannot wait till i am allowed to swear!!) I know, Obviously I've said it,what, 10 times this week but saying it 100,000,000,000(,ooo)times will never express the hatred I feel for Life threatinig and life altering illnesses.I just want to tear my ears and eyes out so i won't see or hear about all these kids and adults dying from a stupid illness. And the ones who suffer from them.Well I guess thats all of my ranting for tonight, maybe i'll go throw something in my room to vent my despair....


Sammi.
P.S. Jacob still needs prayers.
www.caringbridge.org/fl/jacob

Sunday, August 28, 2005 6:58 PM CDT

Hey Guys. Well, we went to look at some appartments today, For dad. I guess the rent on our present house is too expensive. urrg. I don't want to move from Rachel, she is my best friend. She was always there when other people ignored when I was sick. Sure, we're going to stay in Wyandotte but mom is in Wyandotte and I hardly ever see Ra while I am here.(Sigh, urg, argh) Well I'll do something else to cheer me up, maybe just listen to my website...

love,sammi.

Saturday, August 27, 2005 8:53 AM CDT

Sam is at her dads until tomorrow night, so I thought I'd update. She's doing great, no headaches, no dehydration, no adrenal crisis. She's getting excited about middle school. On Thursday, we went bowling with Beth, her brother Mikey and her mom Jenni. It was fun, although Alec was in a really crappy mood and Sam and Beth really don't talk to each other. It's funny, just like it was with her and Emerald. Beth got her hair cut and highlighted, so I promised Sam she could do the same. Beth looked so cute. Her hair is getting longer and with the highlights, she looked very grown up. And Sam had to get size 2 bowling shoes....SHE'S FINALLY GROWING....she even looks taller to me, she's up to my shoulder now. She's going to kill me for this but we took her measurements for her halloween costume and they are 26 - 27 - 30. My little pear shaped girl....hahahahaha....

Please sign Jacobs guestbook, my God, this kid has been thru the wringer and it looks like they're out of treatments.

www.caringbridge.org/fl/jacob

Love, Ellen and Sammi

Thursday, August 25, 2005 9:32 AM CDT

Hey... I have some bad news. So... Jacob, A little boy who has Adrenal Carcinoma has learned that his tumor has grown beyong hope that it will heal. Apparently the High doses of chemo were not enough.You should visit his site and comfort his family. www.caringbridge.org/fl/jacob. ( should I scream or sigh? maybe i will just breathe...) argh, there.Have I ever said I HATE CANCER!!!!!!!!$@#( IT!!

And today we are going bowling with Beth, on a better note. They say they do not really know how to bowl so we will kick some Bowlin' Butt!! But Alec is only consoled if He beats everyone! Which never happen until moms too old to throw her ball! But he can dream in vain I guess. Kids these days. Well I have to take a shower. Blah!!

P.S. I do it for the
Extra drinking
Water!!

Love, Sammi

Wednesday, August 24, 2005 8:07 PM CDT

Hey guys... well,the journal deleted my whole entry, so I just wanna say Thanks Caitlin and people who gave me tips! And I can't wait to go Bowling with Beth!It'll be so Fun!!

Love, Sammi

Wednesday, August 24, 2005 8:03 PM CDT

I got my new song! It's so cool! Thanks Caitlin, and the People who sent me tips!! Well I'm definatly feeling better, I took a 10mg cortef instead of the usual 5. Well I have to do my shot so...And I can't wait to go Bowling with Beth!! It'll be so Fun!!!

Love, Sammi.

Wednesday, August 24, 2005 10:56 AM CDT

Hey...Aye yie yie (thats the way I spell it!)Well I have a cold so I won't update too much. There is nothing going on any ways so, But I got the new pictures! And Caitlins gonna do the Song either today or tommorrow, whenever she breaks from my pesturing! It's called"UP" by Shania Twain. It is my "Happy" song. Well, Later...

To Benadryl!(is that
how you spell it?),
Sammi.

Tuesday, August 23, 2005 9:22 AM CDT

Hi guys! Thanks for the tips on the photo and music things but moms still confused about the code thingy so we'll have to wait till caitlin gets home(hopefully she won't be in a bad mood)later today. So nothing to report really... Oh! Thanks for the phone call Nicole! I hardly ever get them, and when I do they're never that long! And cedar point, I went on almost everything! Even the Millenium, for the 5th time! I first went on it when i was seven! Beat that mom! She was cursing me the whole way up!! And I got to go on my Favorite, The Gemini! Mom thought it was too jerky, but i persuaded her to let me try one time and it was good so i went on it a lot!! I know, I am quite the Scheming Little Persuader. Thanks mom! So my friend Kala went with us, and I met carly too. On her birthday party. Hmm. So i'll write later!

Love, Sammi.

Friday, August 19, 2005 8:38 PM CDT

Okay... hi people, I had to do my shot twice because the first time after i did the shot i thought hmm, that was too easy, so i reset it to see what it was dialed to last time....0.0 was what it said...I forgot to set it, Boy that was stupid! So I had to do it again, Blah blah blah. Okay anyways, mom is a complete failure when it comes to technology,So I was wondering if anyone knew how to post pictures, and how to install songs onto this website if you could please write a guestbook entry or e-mail my mom.(her e-mail address is above)Thanks! Well i'll write later....


P.S. I'll be looking out for the tips!
Love,Sammi

Thursday, August 18, 2005 6:45 PM CDT

I just that Cody(www.caringbridge.org/va/cody/) passed away earlier, Please send your comforts and condolences to his family. Sigh... I hate cancer and I hate Benign growths!!! They both suck! They both kill people and they both cause grief no matter how small. And they both change thousands of lives each year. SCREAM!!!! Ok I am going to calm down now... Breath in Breath out... I guess we all have to do that some times.

Sammi.

Thursday, August 18, 2005 12:47 AM CDT

Hey guys! Still wearing my shirt! Caitlins doing good but alec and I still have to do anything and everything for her.(as if thats a change)So nothing really to report except a boy named cody could use some support and prayers. www.caringbridge.org/va/cody He's not doing too good. Well it is my turn on the platstation.(alecs been on it for 3 HOURS!) Gotta run!!

Love, Sammi

Wednesday, August 17, 2005 10:46 AM CDT

I got my shirt! It's perfect!! I love it!! I also got a sweat shirt! Love that too!! O.K. enough of the exclamation marks, i know.(!) I'll take a picture and post it later. So our plan is to go to the mall and model my new shirt. Anyways, Caitlins ok I guess, though i think they are all sore. We think her blood pressure went down because she wes hyperventilating herself to death. So i'll write later!

Love, sammi.

Tuesday, August 16, 2005 6:41 PM CDT

Just for the record, THIS IS THE WORST DAT EVER!! Why? alright I will make a list, it will be shorter...

1: Alecs in a bad mood.
2: We had to tell dad we cannot go to his house until alec settles down, which will never happen!
3: I have eye allergies all the sudden.
4: I am tired.
5: and Caitlin just got in a car accident, and has back pain and is dizzy.( i saved the best for last)
When will it end!?!? Of course there's more but i don't want you guys to get suicidal reading this! Oh sweet, my favorite song( being sarcastic in case you can't tell)" my best friend plank" is on. Well it made us laugh. most important thing. well we might have to drive an hour and 20 mins to and back and pick caitlin and take her to the hospital. I'm estatic. Ok i'll shut up and read the "happiest elf" now. I'll write after I find my happy place!

To happiness, Sammi.


***Note from Ellen, Wed morning...Caitlin is fine, little roll over accident never hurt anyone, right? Thank God she was wearing her seat belt. We got home around 1:30 AM, but she is fine. Little note about what Sam said about Alec up there. Alec's anxiety causes him to magnify stressful situtations by about 1,000 times their normal stress. He sees a grey cloud in the sky, he instantly wants to go home. There are some stressors at Chris' house that are affecting him the same way. So for the time being, the kids are going to stay with me at night, but we're going to do lots of visiting, this weekend, dinner on Friday, Cedar Point on Saturday and nothing planned for Sunday. And since I can't go back to midnights, Chris has approached his bosses about him going to mids. They seem receptive so far, so this whole kids sleeping at my house almost every night probably would have happened anyway. This isn't what I planned on, I would never keep the kids away from Chris, ever, but right now, this is what we have to do to keep Alec relatively calm. Chris understands to some degree but of course, I'm sure it hurts his feelings. But he's a dad first and foremost, so he will do whatever is necessary for Alec....Ok, back to Sam's updates....Mary Alice, I might start my own online diary, I miss updating things. I'll let you know.....Love to all, Ellen, proud mommy of Nikolaas (working his butt off all summer), Caitlin (bruised and battered), Samantha (getting ready for middle school and seems to be doing great) and Alec (down but not out!!!)

Tuesday, August 16, 2005 12:31 AM CDT

BE QUIET!! Lord, Alecs in a Killer mood today. He is mad about everything today. I guess he is worried about going to dads. Yesterday dad couldn't hardly remember our names!! We think he was drinking so Alecs scared he will be grumpy.Anyway 1-2 more days till I get my bts shirt, I am so excited! THANK YOU SO MUCH LINDA!!! And i got an E-mail from Nicole (www.caringbridge.org/nm/nicole) She wanted to know my phone number so maybe she will call this week. So today we are going to alecs appointment for the eating clinic, And mom wants to do something beforehand but doesn't know what...Hmmm. I want to go bowling, but alec wants to do somthing outside.
I'll write later...
love,sammi.

Monday, August 15, 2005 1:57 PM CDT

What a day!! First we woke up for a dentist appointment at 8:20, but as soon as i woke up i got a glass of water and felt sick after I drank it. So we went to the appointment with me laying down the whole way, then 30 seconds before we got there I threw up. Argh!! So mom decided to call childrens and they said just take 2 cortefs and see what happens. So I went to the room to get 2 cavities filled. about midway through all the sudden the "non-hurting" laser was killing me! ( If anyone has a adrenal insufficency out there, Do people with no cortef feel more pain? Write a note in my guest book.)So she numbed (is that a word?)me with novacain, a shot that also was not supposed to hurt but of course it did! then she put me on laughing gas and got to work. Then when she put the polish and paint on i vomited again. All over the seat and floor, I might add. The polish just tasted really bad. 20 minutes later she was done, but when i got in the waiting I THREW UP AGAIN!! well that was number 3 so mom wanted to do the cortef shot but the dentist said maybe it was just stress and bad tasting wax. so mom decided to wait. So we just drove home and i have not thrown up since, Thank you!
More later...
love,Sammi

Sunday, August 14, 2005 7:15 PM CDT

MOM!! You are not only making me mad, but boring the readers! I have another supporter that said,"Between you and me, your journals ARE better than your moms!" Thanks again for the support. So The lock-in. Well, first we got name tags. then we picked teams for a game where we went around the library and did different activities. For each one we got points. Then the last one was a magic potion game.( AKA magic POISON game) The potion was made of:
1: Cinnamon.
2: Brown suger.
3: Some flavor of Ice cream.
4: Coke-cola.
5: and Dry ice. (gag)
OK, so there were three levals, #1 was just this disgusting concotion, #2 was this plus 3 drops of Tabasco sauce( also known as tabbaco sauce), and #3 was this plus 4 drops of the Tabboco sauce. I got through two. I'm surprised i didn't have nighmares! And then after i brushed my teeth (argh!) we just played games and did crafts. then at 3:00 (yes A.M.) She announced the winners. We were in 4th place. whoooooo! Then she announced who won the drawing. A girl who won 10 books in agony just to get in the lock-in. How preposterous! I read 53 books for the fun and knowledge. I had *10* tickets in there. she had 2. Hmmph!! After that monstrosity ended we just had a snack and then we had scary stories in the haunted attic. I swear all the sudden, in the boiling attic all the sudden me and the other people in the front row were freezing. When i saw the other guys freezing to death i asked the story teller to shut the windows. The othe people shouted no way!! you are crazy! the people in front row said that it was Freezing. but they did not shut the windows. so we all just went down stairs and dove under our sleeping bags! Weired. well i'll tell more tommorrow.

Love, Sammi.

Saturday, August 13, 2005 9:50 AM CDT

I know I've been banned from updating, but Sam is at her dads and he doesn't have a computer. Sam went to the lock in at the library last night. Caitlin went for years. You have to be going into the sixth grade or higher. You read at least 5 books (Sam read 55) and you get rewarded by spending the night in the library. The library is in a mansion and the library part was added on. Normally, you can't go into the mansion, but one night a year they open it up for all the kids who want to spend the night. Sam didn't get to last year, it was one of the things she missed out on. But last night I dropped her off. She seemed a little nervous. This morning when she called me at 7:15 I asked her how late she stayed up. "Mom, I haven't been asleep since 9am yesterday morning". Wow, incredible she stayed up all night. She's always the first one asleep any where we go. She said she met some kids that are going to middle school in a month so she already has some new friends. She is doing great. Thanks for all the positive comments on her keeping the journal herself. I have not taken one personally....(sniff sniff).

Thursday, August 11, 2005 12:40 AM CDT

Hey guys. Oh my gosh! yesterday, after i put in that i was saving up for a t-shirt that says " I am a brain tumor surviver" a lady named Linda Zec(did i spell that right?)E-mailed mom and she said she would send me one that she would buy. Oh, the kindness I've encountered the last 2 and a half years is incredible. I guess her brother died of Leukemia last year. here's his website.

http://www.active.com/donations/fundraise_public.cfm?key=zec&I9.x=41&I9.y=15

And my bone study came back. my bones are only 10 years old so i will be able to grow to my full height.whooo!! So today we took nik out to eat for his break. He was called for jury duty. from what i heard it sucks. (nik said somthing much more hateful but i am a very resigned young lady, thank you.)

love, sammi

Wednesday, August 10, 2005 1:14 PM CDT

Hey guys. Hey i found the mouse ball holder thingy!! we lost the circle thing that holds the mouse mover in yesterday when caitlin dropped the computer yesterday.(scoff) cool. we couldn't hold the mouse up to move it. anyway NIKS HOME!! booyah. alec isn't too happy cause last time nik was home he kissed alec. i guess alecs scarred for life.(who wouldn't be) and i only need 4$ and 73 cents till i can gey a "i am a brain tumor survivor" shirt!! happy day. and i just received from a reliable source that my journal entrys are way more interesting than my mothers. What now mom?!? Thanks for the support mary alice! Also you should visit a boy named jacob www.caringbridge.org/fl/jacob. he is getting like 8 different kinds of chemo that, in my opinion, sounds worse than the cancer. He needs as many prayers as possible. will update later...

sammi.

Tuesday, August 9, 2005 7:58 PM CDT

Hey im back at moms. dad has no internet because he had to cancel the phone line for the extra money. oy vey! have to do my shot. 1.1 mg and i've grown a centimeter in 6 months. i thought i'd catch up with the other kids but i could still borrow the 8-year-olds shoes who lives across the street!! And she is a foot shorter than me! And i have broken through 4 veins in the last 2 weeks! sigh... Anyway back to the good luck section of this article. we are going to cedar pointe finally on the 21st(yay)!!Aaannnnndddd i just got my shot done. definately a better note!! now i have to take my Pills. hold on a sec....Elivil...cortef...perilactin...senecot...,and colace. okay, so played outside a lot but my brother alec had some trouble with donald and connor. they are fine when they are apart but they get this little tough boy, arrogant attitude when their together.so alec said he was hot, so conor said,"wuss" alec looked at me annoyed but didn't say anything so i said to connor," no he's not." and connor said " what, he can't take a joke?" then i said ,"not yours, 'cause they're rude!" then he muttered something inncoherent so we just kept on playing. Alec has GOT to learn to stand up for himself sometime!! maybe i will teach him some comebacks later...

Love, Sammi

Tuesday, August 9, 2005 7:58 PM CDT

Hey im back at moms. dad has no internet because he had to cancel the phone line for the extra money. oy vey! have to do my shot. 1.1 mg and i've grown a centimeter in 6 months. i thought i'd catch up with the other kids but i could still borrow the 8-year-olds shoes who lives across the street!! And she is a foot shorter than me! And i have broken through 4 veins in the last 2 weeks! sigh... Anyway back to the good luck section of this article. we are going to cedar pointe finally on the 21st(yay)!!Aaannnnndddd i just got my shot done. definately a better note!! now i have to take my Pills. hold on a sec....Elivil...cortef...perilactin...senecot...,and colace. okay, so played outside a lot but my brother alec had some trouble with donald and connor. they are fine when they are apart but they get this little tough boy, arrogant attitude when their together.so alec said he was hot, so conor said,"wuss" alec looked at me annoyed but didn't say anything so i said to connor," no he's not." and connor said " what, he can't take a joke?" then i said ,"not yours, 'cause they're rude!" then he muttered something inncoherent so we just kept on playing. Alec has GOT to learn to stand up for himself sometime!! maybe i will teach him some comebacks later...

Love, Sammi

Sunday, August 7, 2005 1:05 PM CDT

Well my headache has gone away. it was getting kinda bad yesterday. Im trying to ignore the earthly screams and bone crunching dinosaurs on tv. alecs watching jurassic park 3. i just can't handle movies like that. i dont see how alec can watch this but wouldn't talk for 2 hours after he saw the grinch!!(lol). anyways, going to dads today, hope he isn't grumpy. sigh...

love,sammi

Saturday, August 6, 2005 6:13 PM CDT

OH MY GOD!!! You would never guessed what happened... we ran over a peice of something and 15 miles later we have a flat tire!! just our luck... So caitlin and her friends are having soooo much fun while im watching bruce almighty again. oh well mom says we can go on wednesday while its not so crowded. anyway we went to see sisterhood of the traveling pants. i cried my eyes out of course. i have so many friends that have died of cancer... aye!! and now i have a headache. more tommorrow.

to luck(good and Bad), sammi

Saturday, August 6, 2005 8:04 AM CDT

Going to Cedar Point!! will update on sunday!

Saturday, August 6, 2005 7:56 AM CDT

Going to Cedar Point real soon. will update more on Sunday!!!

Friday, August 5, 2005 8:58 AM CDT

Hey guys! I just got back from dads. Also, I went to bowling yesterday, but my hands were shaking the first game so i only got a 56.(blah!)but with the second i got an 86 and the third a 73!!yay! Anyways, A women named chris could use some support and prayers www.caringbridge.org/wi/clownfish79. She just started hospice services. So... I am doing good i suppose. Oh I am going out to do somthing with beth(www.Bethsplace.net) on the 25th. I can't wait! I think we might go bowling or somthing. It'll be fun.


love,sammi

Thursday, August 4, 2005 2:20 PM CDT

Hi people, it's sammi. I have decided i want to do my own site with the whole updating thingy. So... right now im watching Bruce almighty. I always can sorta tie to that show. I used to think that god had somthing against me but i've figured i can't rely on him for everything. And it's actually been a gift to see how precious and fragile every thing is. Anyways, We had two kids get their angel wings yesterday, Ethan at www.caringbridge.org/ga/ethan, won his battle with Wilms tumor, and Leah, www.leahsjourney.com, finally won over her Diffuse Pontine Glioma. Aye aye aye. And also when i visited a girl named caitlins site, I got encouraged to write to the represenitive of michigan and would appreciate it if you wrote to your goverment officials too. Tell them to support a cure for childhood cancer. You can go to www.curesearch.com for your represenitives address. " I got the Power" Sorry, I love Bruce Almighty!! Now i am gonna watch it!!



Sammi

Thursday, August 4, 2005 9:07 AM CDT

Sam was getting dehydrated again yesterday, pulse 148, legs and hands shaking, feeling dizzy. It's been so hot here. I have a/c in one room in my house, Chris has better a/c than I have. She was at his house yesterday, with me today, but it's supposed to be cooler. She is still sleeping, as is Alec. I'm off for the next 4 days....woo hoo...I think we're going to Cedar Point on Saturday. Should be a lot of fun.


****Update, this mommy cannot stop crying....Leah passed away yesterday, she was such a beautiful little girl. Sam wants to go to the funeral home on Sunday. I still feel like sh*t from the migraine I had on Monday. If I had to find $3 to save my childrens lives, they'd be screwed, I am so broke today. Tomorrow I get paid, but the feeling of not having any money is horrible. I miss my mom, my sister is having a really difficult time and I feel so helpless. My grass needs to be cut, I am afraid to show Alec that I'm upset, it affects him so. So I'm kind of hiding from him now. He's happily tucked away in my room (or his room, a story for another time) so I'm good for now. Ok, I'm going to go do my dishes, then cut the grass, then get ready for my uncle to come over. He lives in Canada and uses me as a post office box because it's too expensive to have stuff mailed there. I feel like I'm kind of holding him hostage, "yes you can mail your things here but then you have to come here to get them". So I get to see him and my Aunt Pam and niece Jessica, who struggles with epilepsy. She is just the sweetest thing. OH BOY, look at that, I'm not crying anymore and I feel like I can continue my day. Ok, Thanks for listening.....Love, Ellen

Wednesday, August 3, 2005 7:42 PM CDT

A beautiful little girl named Leah, from Livonia Michigan died this morning after a short but valiant battle with diffuse pontine glioma...Please send her family your prayers...

Leahsjourney.com

Love, Ellen and Sammi

Saturday, July 30, 2005 7:35 PM CDT

It's official, I have allergies. I've never had allergies in my entire life. The last couple of months, I've been battling itchy, weepy, swollen eyes. It always starts at work, which is weird but today my whole face has been itching. I went on the road for a couple of hours today and I wonder if maybe I'm just allergic to sunshine, since I spend 12 hours a day in a dark, dank dispatch center. Whatever it is, it's miserable and I can't believe I have allergies. My mom spent the months of Aug and Sept sneezing like crazy every year. I guess this is better than that but I'm afraid I'm going to scratch my face off. I bought some benadryl today so hopefully that will help. OY.

Talked to Sammi, she said camp went well and she was the only girl in her group who hasn't started puberty. I guess she's going to have to get used to that. That's going to be her for the next 3-4 years probably. Gotta get the growth going before they start the girly stuff. She said she's felt good and had no problems with her meds.....Awesome..

Caitlin on the other hand is having major pain from her collar bone. The pin they had to leave in there may be shifting or maybe it's going to rain. Who knows. So we have to call Ira on Monday. I'm sure she'll be very upset about going to see the doctor she's always had a crush on but was just recently able to admit to....

Thursday, July 28, 2005 8:58 PM CDT

Chris is taking Alec up north tomorrow to pick Sam up from camp and they'll be back on Sunday. I can't wait to see her, she's obviously done fine all by herself up there, since we haven't heard a word. I'm off on Monday and Tuesday so I'm really excited. Caitlins senior pictures are on Monday. OY. I'm getting old. 2 kids almost graduated from high school. If Caitlin makes it. She's a little iffy about the whole school and being responsible thing. She better or I'm gonna be really ticked.

Monday, July 25, 2005 6:47 PM CDT

Sam's at camp. Chris called up there yesterday because she forgot a few things in his car and they said she's doing fine. I'm fine, Alec is fine and Caitlin is fine. Not sure about Nik, his phone is messed up so I haven't talked to him in a few days. Work was long today, very boring til about 1pm then all hell broke loose and we had 4 dead people in about 2 hours. This heat is just horrible. Heat also brings out stupidness in people. Which makes my job interesting but makes me very negative toward mankind. Sometimes I think my job is bad for my mental health. But I suppose I'd be worse off if I was homeless and eating garbage, so I guess I'll be happy about my job and grateful. Blah.

Saturday, July 23, 2005 1:29 PM CDT

Sam is up north, getting ready to go to camp, she gets dropped off tomorrow at 3pm I think. I slept until 1:30 pm today. I took a couple of tylenol pm's, just to make sure I didn't wake up at 5:30 but jeez, I slept like 13 hours. It felt good.

I feel weird about her being gone. On one hand, of course it's good for her to go to camp, be normal, have fun and take care of herself. Someday she probably will grow up and I won't have to be there all the time for her. ( I guess I have to get used to that idea ). But it's scary. Sometimes she doesn't drink enough and if she gets dehydrated, she starts right into the adrenal crisis and that can get scary. And it's probably selfish to admit that I am kind of looking forward to a little more relaxed week. I only have to deal with Caitlin and her teenage personality disorder and Alec's anxiety and eating problems.

I hate that every time I talk to her the first thing out of my mouth is "How is your head?". And the first thing I ask Alec is "What did you have for breakfast today?". His answer is always "I don't know". Which translates into "Chips". But the days I don't work, he does eat a good breakfast. Under penalty of pain.

Thursday, July 21, 2005 6:44 AM CDT

Sorry I haven't updated. I sent an email to Sam's endo yesterday asking her if there's anything we need to do about Sam's hand tremors. It's so bad, she's having trouble giving herself the shot and she's having trouble drawing and stuff. She started to get dehydrated the other day, it's been so fricking hot here, over 90 every day. So I made her drink 16 oz of water and her pulse went from 152 down to 132 in about an hour. Last night I stopped to see the kids and her pulse was fast again, told her to go home and drink some more. Then I called Chris and made sure he understood that she needs to stay hydrated.

Other than that she's been feeling pretty good. We had fun on our trip, cept it rained, cept we had our new Harry Potter books. So we were happy.

Thursday, July 14, 2005 8:56 PM CDT

Sam is feeling really good. Her shaking hands are starting to cause her a problem when she gives herself her growth hormone shot. I have a call into the endo to see if we should see a neurologist, something she asked me about at our last appt. We're on our way up north, big Eggenberger family reunion. Her friend Beth has grown a whole inch since she started her growth hormone!!!! Way to go Beth. We're going to meet them in a couple weeks to do ceramics here in Wyandotte. We can't wait. I'll update on Monday, please sign her guestbook, she still needs support...Love to you all. Ellen, Sammi and Alec

Sunday, July 10, 2005 8:31 AM CDT

Sam's doing great, she's at Rachel's cottage, to celebrate her birthday. She's so worried about Ryan (www.caringbridge.org/ky/ryanbrown). Our internet was down for about 24 hours, she was getting pissed, she couldn't check his website. She called me last night and said that if anything happened to him, I was to call her right away.

Alec and I started a new website for him. He asked me if he could have his own, to document his struggle. Of course. So here it is..... www.caringbridge.org/visit/alecrc. Please say hi to him. He needs support.

Friday, July 8, 2005 3:24 AM CDT

It's 0430 and I woke up with a migraine. Not a good way to start my day. I took some drugs and hopefully it'll go away soon.

Sam is feeling pretty good, she goes to Rachel's cottage this weekend, her and all her meds. HAPPY BIRTHDAY RACHEL!!!!!

Please pray for Ryan, who seems to be ending his journey with DPG. His website is www.caringbridge.org/ky/ryanbrown. Sam obsessively checks his website. We mailed him some YuGiOh cards. Please send his family your prayers.

Alec and I are spending the weekend together. On Saturday, we are going to watch all 6 Star Wars movies...in order. So we'll rent the first 2, go see the third and then rent 4, 5 and 6. He's so excited. He's calling it the "Star Wars in the order they should have been made marathon". He's a funny kid. He feels sick a lot, I think it's because he doesn't eat much. I hope we can get this eating thing under control before he really starts to get sick a lot. There's always the possibility they'd have to admit him to the clinic in Ohio. I'm not sure how I feel about this. I'm sure it's a great place and that it would be good for him but he's such a homebody I wonder if he'd be able to handle it. Maybe that's what it will come to tho. It's so far away and it wouldn't be like having Sam in the hospital, where a parent stays. I am worried for him. I don't know how much longer his little body can hold out with such little food. He is just the sweetest kid. There is not a mean bone in his body, he has a few angry bones, but no mean ones. We have an appointment in 6 hours.

Tuesday, July 5, 2005 7:33 PM CDT

Kids are at Chris', Caitlin's gone, Nik's gone....Mommy is bored. But I'm not watching Cartoon Network, so I'm grateful for that.

Sam felt pretty good today, we went up to visit Nik and he took us to lunch. His birthday is in 2 weeks, he'll be 20...That means I'm really old. He's twice as old as Alec this year. Until October when Alec turns 11. We did the peanut butter toast thing yesterday. First Alec got grossed out because he was sitting by the stuffing and he could smell it. So I moved him to the other side of the table. He took his toast with him and just looked at it. He said this is stupid. How is looking at toast going to help me. After about 5 minutes he left the table. I thanked him for his cooperation. I'm sure he was rolling his eyes. I almost forgot, last night Alec and I went to see Star Wars.. again....and after the movie it was pouring rain, thundering and lightening. Alec is terrified of storms. He starts getting upset if it's windy, if there are any clouds that are remotely grey or if it starts raining. So we get out of the movie and I'm trying to figure out how I'm going to get him to the car. I know he'll freak out if I make him run to the car with me, because you never know when lightening is going to strike. There's a nice looking older lady standing next to us and she volunteers to watch him while I run to the car. My first instinct is no....she might be a child predator. I ask Alec if he'd be comfortable waiting with her. He says yes, with wild relief in his eyes. I go get the car, scared out of my mind for the 90 seconds it takes me to get to him (maybe the guy she came with is a child predator). He tells me today he'd rather get kidnapped anyday than walk thru a storm.

Sunday, July 3, 2005 8:46 PM CDT

I'm off for the next 2 days, hooray!!!! And I'm off for the next 3 week ends...Bigger hooray!!!! Alec stayed with Chris so Sam and I are having girls night out. I really need to go to bed but Sam is next door watching fireworks so I should stay up til she gets home. Her back is still swollen and she has headaches when she gets up from laying down so we're either on our way to shunt malfunction or she has decided that life cannot be boring and let us give Mommy more to worry about. One year ago today they were putting in her broviac, she weighed 52 pounds and she was a very sick little girl. Today she weighs 66 pounds and is feeling pretty good for the most part. She said today, "I am getting fat". That's good to hear. But she is not remotely fat. She is just growing. She has been drawing pictures of the children that we know that have died, she wants to mail them to their parents. She is so sweet.

Saturday, July 2, 2005 9:21 AM CDT

it's caitlin. this is kind of a little surprise for my mom, (because i love and APPRECIATE her)but she asked me to help her put pictures on here from our trip, and i was going through them and i absolutely love this picture. sammi's a babe, if you ask me. look at those freckles.

Saturday, July 2, 2005 6:48 AM CDT

Sam is feeling ok, she had a pretty bad headache yesterday but aleve seemed to take it away. Her back is still swollen but we're keeping an eye on it.

Not much going on, I'm working this weekend so the kids are with Chris, Caitlin is going to Chicago for the weekend. I'm trying to get Nik to come home for a few days.

The whole Kaidrie thing was a big lie. There is a "Kaidrie" but her name is Abbie and she's not sick, thank God. But her mom or aunt or whoever it is pulled a big scam on everyone. I feel bad for Emeralds mom and Cheyennes dad for being taken for a ride by this **tch. Hopefully she'll get hers some day. I understand the FBI is investigating.

Wednesday, June 29, 2005 10:32 PM CDT

Sorry about the delay, my internet has been down for about a week and then we had a little scare with Sammi yesterday. She was out in the sun on Monday, she put on her sunscreen. But she has third degree burns on her left shoulder. Found out that her Elavil makes her more sensitive to sunburn. OY. She has a big blister and dozens of smaller ones. But I think it caused her to retain some fluid around her shunt because her back on the right side, by her tubing was so swollen yesterday, it stretched all her scars to about twice their normal size. So I left work and took her downtown, bags packed and convinced they'd have to keep her. Well they did a shunt survey (aka an x-ray) and said her shunt looked fine. It's still a little swollen today, but not bad. So maybe it's her shunt, maybe it's fluid retention from the sunburn. I guess we'll have to wait and see, she did say tonight that her shunt has been twinging. I've increased her cortef to 10 mg twice a day until she's not complaining of sunburn pain anymore.

We took Alec to his clinic appt today. He did really well. He wants to eat more foods. He has picked peanut butter toast as something he'd like to be able to eat. So we will make him a piece at every meal. He doesn't have to eat it, we'll just place it on the table. And I'll kind of note his reactions to it, ask him how he's feeling etc. I know it sounds kind of weird, but he needs to de-program his aversion to food. He gags and sometimes vomits when he eats something new or something different so we have to try and get him thru that. It will work, it will take some time. Poor little kid has had some significant stress in his life and if you combine that with his sensitive temperment you get anxiety. And his anxiety has manifested itself into an aversion to food. He weighs 53 pounds and I think is 52 inches tall.

Ok, so we get to the plantation and we unpack and basically on the first day,we just walked around, taking in the quiet, the beauty, the flowers and the ever present heat. The next morning, a sheriff's deputy from West Feliciana Parish Sheriffs Office comes into the hotel. I didn't really think anything of it. Later they tell us that the sheriffs office had heard we were there and they were trying to arrange a helicopter ride for Sammi. How Cool!!!! They also told us a local restaurant, called the Magnolia Cafe, was giving us free lunch. (We have so many thank you cards to write) And they were giving us a special "spooky" tour of the house that night. We drove into town and looked around at all the old houses and stuff, Chris had to make his trek to the Mississippi River, He's kind of a water freak, and then we went back to get ready for the tour. The house was kind of scary but I suppose that's the goal. The tour guide, Carly, was good and Sam got good and scared. Carly's mom works for the Sheriffs office and I think that's how they heard of us. Carly brought her little sister Piper and her cousin Lauren to go on the tour with us and they wanted to meet Sammi. So that was fun. Oh and a reporter from the local paper, the St Francisville Democrat, came to interview us, take our picture by the house and then she took pictures the next morning at the helicopter.

The next morning, we went to tour their new 911 center (they heard I was a dispatcher), it was very impressive. Much more modern than the one I work in. Then we were off to the Sheriffs office for the helicopter ride. Sam and I went first. I was starting to feel sick but Sam was having a blast. Then Chris went with Sam. Then Cait and Nik went with her. We were inside being inundated with tshirts and such by their DARE officer. It was such a nice day. Then we left for the airport. Got lost, got back on track, toured some of the not so nice parts of New Orleans. The plane ride home was fine and the limo ride home was wonderful. All in all we had a great time and all the pictures came out great. I am going to have Caitlin help me get them on here tomorrow, when she comes home. She's been at her friends house since Wednesday.

I would like to thank the Rainbow Connection, the Hotel Provincial, the Myrtles Plantation, the West Feliciana Parish Sheriffs office and the Magnolia Cafe for making Sam's trip so special. Everything was great!!!!

Thursday, June 23, 2005 8:54 PM CDT

We were picked up Saturday morning at 0630 by a limo, it was cool it was a black lincoln navigator. Then we realized I had forgotten the tickets, so we turned around, got the tickets and then realized that Chris had left some of Sam's medicine at his house. So we drove over there. Then we were on to the airport. The wait at the airport wasn't too bad, Detroits airport is really nice. Lots of stores and there's a tram for the kids to ride and moving sidewalks and all that cool stuff. Alec did so well on the airplane. I was reading Star Wars to him as we took off and doing my awesome imitation of Yoda. He was not impressed, but he was amused and distracted and that helped. We arrived in New Orleans on time and got our van and drove into the city. It was interesting. It's probably not a place I would take kids to, but it was really pretty and the architecture (sp) was nice. The hotel was really cool but we couldn't check in right away so we started walking and went into a restaurant for lunch. $105 later, we walked out, fuller but really broke. Then we checked in and Nik, Cait and I promptly fell asleep for about 3 hours. Actually I'd say that Nik and Cait spent about 50% of the trip sleeping. We found a cheaper place to eat and walked around downtown, looking at the Mississippi River, the downtown and all the strange people. You can drink alcohol in the open down there, just people walking around drinking beer or whatever. Alec was a little scared but he did really well. The next day we went to the aquarium, zoo and boat trip down the Mississippi. The tickets for all of that was almost 200 dollars for the six of us. The aquarium was really nice, we got to pet a shark and some starfish and stuff like that. It was cool inside there too. I mean air conditioned. New Orleans is fricking hot. But our weather couldn't have been better, it never rained. It was raining on the way there, in fact, we had to buckle up early on the plane because there were some water spouts below us. Anyway, then we took the big boat to the zoo. The zoo was ok, I imagine those animals are so sick of the heat they just give up. I would if I were them. The hotel had 2 different swimming pools. The big one was usually full of drunk people so we'd go over to the smaller one, which we had to ourselves, and have a ball. We were in bed by 10pm everynight, probably a combo of the time change and the heat.

On Monday, we headed towards the haunted plantation. It was about a 2 hour drive. When we got there, the girl told us we'd have to wait about 15 minutes to check in. Then "Miss Debbie" found out that we had just arrived and she said, Oh no no no....they can check in right now". We were treated so special there. We tried to buy some souvenirs at the gift shop but she wouldn't take our money. We got some key chains, some post cards and a couple of books for Sam and Alec. The rooms were really cool and when she found out Caitlin and Nik were going to have to share a room, she gave us the keys to another room...So we had 4 rooms there. All very different from each other and each had different haunting stories...Of course Alec picked the one he thought wasn't haunted.....More tomorrow....

Wednesday, June 22, 2005 9:31 PM CDT

We're back...had a great time, will update tomorrow...lots to tell.

Wednesday, June 15, 2005 8:21 PM CDT

Happy birthday to my mom, who would have been 64 today had she not gotten breast cancer. I can't even imagine her that old. I miss you mom and know you would have been such a comfort to Sammi and me during all of this. I love you. She never even got to see one of her kids turn 30. God, I hope I live longer than that. Her mom was only 47 when she died of breast cancer. Last year I had 2 cysts in my left breast, this year if they're still there, I'm going to have them removed, it makes me too nervous. Please pray for Sam's Nana who was in the hospital for pneumonia but has come home, still not feeling well. We love you too Nana.

We leave on Saturday and have not received our tickets yet. She assures me we'll get them tomorrow. Oy.

I've been throwing up all day, this was not a good day for this. I have so much to do. But I guess it's better than getting the flu on Saturday. Sam is getting excited about Saturday. We all are, except Alec. The poor thing was so freaked out about potential storms yesterday. I think we'll have to drug him to get him on the plane.

And hooray for Kaidrie, who left for her wish trip today to Give Kids the World in Florida. She'll have a great time.

Thursday, June 16....we got our tickets, we're leaving Saturday am. We had a good appt for Alec, the first step for him is no more chips for breakfast, he has to eat dry cereal or french toast. He's ready....

Tuesday, June 14, 2005 10:33 PM CDT

4 more days. No tickets yet. Hmmmmmm maybe Northwest will just let us fly without them. Went out with work people for the first time in about a year tonight. I went for an hour. More aggravation than it's worth. Apparently I cannot have a social life. I will just keep doing what I have been doing. Working and driving kids to Drs appts. Everytime I think I am about to get back on top of my life, I get pulled back down. By the same person. I'm sick of it.

Monday, June 13, 2005 8:01 PM CDT

We met Lucas www.caringbridge.org/in/lucas and his family yesterday on our way home from my sisters. Ohmigosh, what a nice and friendly family. Lucas is so cute and personable, his older sister Ashlan is gorgeous and little Jake is a typical 4 year old, energetic and adorable. Lucas and his sibs made Sam some cards and his mom took some pictures. It was nice to meet everyone. I know we'll get together again. Hopefully they'll hear from St Jude this week.

5 more days til our trip!!!! And we haven't received the tickets or anything yet. Not panicking?????

Friday, June 10, 2005 11:03 PM CDT

Hmmmm...Where did my entry from yesterday go??? Sam's doing ok, I think she started to get dehydrated today, she had track practice and it's like 80000 degrees here. I took her downtown for her bone age x-ray and then we came home. It's so hot, I took them out to eat and then we went bowling. I don't have air. Cool air anyway. We're going to visit my sister tomorrow and then on the way home we're stopping at Lisa and Lucas' house.....Sam is so excited to meet a fellow cranio/rathke's child. (www.caringbridge.org/in/lucas) Sam gave herself her shot today at the bowling alley and the lady that was bowling next to us came over and told Sam she was very brave. She is.

When we were downtown today, we stopped in at neurosurgery to say hi to Nancy, one of the ns nurses who has taken care of Sam. She is the one who recommended our wish trip. I introduced her to "chubby" Samantha. She was amazed at how well she looks. It was nice to see her and I told her we'd mail them pictures and a postcard. 8 more days!!!

Monday, June 6, 2005 5:48 PM CDT

Sam went downtown for her blood draw today. Of course, we needed a referral for the bone age xray and of course I didn't have one. So we have to go back down on Friday, I am really really thinking of changing my insurance next year so we don't have to fudge around with all these referrals. I can take her anywhere for treatment and not worry about it.

Talked to my friend Mary Alice today and I feel better about things, as usual. Even if we don't figure out the problem, there's just something about her voice, with it's southern drawl and reassurance that makes me feel better. I mentioned to her that there is a camp for brain tumor kids in Maine and we might try and get the kids there together next year. Her Lizzie had a germinoma in the same area as Sam's and so they have most of the same hormone issues. Lizzie struggles with some vision loss but the fact that they could get together and talk about their issues would be awesome. When I mentioned it to Sam, she perked right up. They are the same age I believe. I think she's craving friendship with someone who understands. I know I do....it's a lonely world out here, the world of the chronically ill child.


Tuesday, June 7...Hey, I would like to officially welcome myself and my sister to the world of flooded basements!!!! Her new house, hasn't even been lived in a week, basement floods. Nik goes downstairs to get his printer...basement flooded. Only ours contained shit, lots of it...(sorry but it's gross). Some of Sam's test results came back. Hormones low, as I expected, the girly hormones I mean. Her thyroid was fine. So now we need to figure out the tiredness. I was hoping it was the thyroid. It's really fricking hot here, it's been in the 90's all week.

Wednesday....Basement is clean. Mommy is tired. Mommy came home tonight to a very clean house, thank you Caitlin. She's at the Alanis Morissette concert. I'm insanely jealous. Ok going to bed now to dream of clean basements and shop-vacs....or wet-vac or whatever....

Saturday, June 4, 2005 7:01 PM CDT

Chris and the kids went up north for the weekend so I'm home all alone. Caitlin is with Rachel and Nik is at Grandma's. I am happy being alone today. I need some peace and quiet.

Sam gave herself her shot without EMLA cream yesterday. I am very proud of her. She sounds like she's feeling good and having fun up north. Alec's next appt with the eating disorder clinic is June 16.

Please pray for Ryan Brown (www.caringbridge.org/ky/ryanbrown) who is having scary new symptoms.

Thursday, June 2, 2005 8:55 PM CDT

As usual, I'm feeling better today. I did get some sleep, not as much as I would like but some. For reasons that aren't really appropriate to give here, the kids have been staying with me most of the time the last couple of weeks. And I am tired and feeling overwhelmed from that. Obviously I love having them here, but it's really hard by myself. Chris is taking the kids up north this weekend, I have to work, so that should be some good together time for them. Sam is still tired all the time but we're going to see the endo tomorrow so we should get some good info. Sam is really getting excited about her trip. I am trying to get Alec excited. We took the long way home from Cait's dr appt to go by the airport and we looked at all the planes taking off and I told him about the subway train inside the airport and the moving sidewalks and tried to make it exciting for him. He's apprehensive about the whole thing. I hope he will be ok but I am thinking of dramimine patch for him.

Ira (Dr Zaltz) said Cait's clavicle looks good. The broken pin has not moved but he said we have to keep an eye on it as it is pointed right at her heart, should it come loose. That probably would not be good. Nikolaas got a summons for jury duty but it is right in the middle of our trip so he will not be able to go. I am sure he is bummed, he would love that. But I would have to drive him and pick him up, as he can't drive because of his eyesight. So maybe it is a good thing. I would have had to take that day off. Ridiculous.

****Friday, June 3....Just got back from Sam's endo appt. First of all, I would like to say that altho we will miss Dr Cara, our new endo Dr Moltz is awesome. She sat down and spent at least 30 mins with us, prob a bit more. She's going to increase her Growth Hormone. She's 142.6 cms. And weighs 66 lbs. She's only grown 1 cm since February. So we're going to increase it to .9 mgs for 4 weeks and then up to 1.1. She gave us a script for ddavp tablets, only to be used if she has a head cold. She gave us a script for 3 boxes of ddavp a month instead of 2, because a lot of times we're really stretching to make it thru to the next date we can get it filled. She also said that Sam shouldn't be using the EMLA cream for her shots, it's too much lidocaine in her system, which can cause irregular heart beats etc... It's fine for blood draws and stuff but no more for the shots. Blood was drawn for growth hormone, electrolytes, thyroid, girly hormones and something else, I can't remember. She's checking the thyroid cuz Sam's so tired all the time. She said she wants to get the test results back before she does anything more about the shaking hands thing. She asked if Sam's ever seen a neurologist. She hasn't. But doesn't want to refer her til she rules out endo stuff causing the shaking. So I don't even want to think what that's about.

Our friends Lisa and Lucas, who has a craniopharyngioma, which is closely related to Rathke's cyst, went to California to find out about getting a special kind of radiation for his tumor. When they got there, they were told he doesn't qualify because of another treatment he had received, even tho Lisa told them he had had this treatment. She is so frustrated, I totally understand this frustration. Please pray for her, that St Jude will accept him as a patient and be able to give him the treatment he needs. His website is www.caringbridge.org/in/lucas. They live right by my sisters new house, so i'm sure we'll be meeting them soon.

Wednesday, June 1, 2005 5:26 PM CDT

We went to see the neuro-opthamologist today at Henry Ford Hospital in Detroit. Her eyes are perfect and vision is great (well besides being nearsighted). He said to have her checked in another year and then if everything is ok, we can wait 2-3 years before having her checked again.

Our endo appt is Friday. I'm really looking forward to it and I have about a million questions. I feel sorry for Dr Moltz. I'm sure she's going to be busy and it's not going to help that we're going to be so needy. But a lot has changed in her endo status just since we saw Dr Cara in Feb or whenever it was. She's tired almost all the time now, not sure what that's from but hopefully we'll get some answers. She's crabby a lot too, but that could be other things. She and Alec are outside right now, it's so beautiful here today. My sister and family are moving to Indiana today, so please pray that it goes smoothly. She has enough stress in her life without moving crap. Well I'm going to make Alec a chocolate cake and Sam some chicken. And Caitlin some soup, her tooth is hurting her.

For some reason I'm very sad today. Not sure why. Maybe a build up of stress, maybe because I worked 16 hours yesterday and didn't get more than about 3 hours of sleep. Yes that must be it, no sleep. So I guess I'll try and rectify that now. I have been on the verge of tears all day, I hate that. Sad things make me cry, happy things make me cry. The only thing that doesn't make me cry is stupid people. They just make me mad. So I will search out all the stupid people I can find so I don't cry. I'm sure I'll find a few on Saturday, working in the jail....All dumb people end up in Redford, MI.

Monday, May 30, 2005 8:59 AM CDT

Sam is feeling better, again she had the hidden problem of constipation, which she doesn't like to talk about. It was 8 days since she last went. So now that she's cleared out a bit, she's feeling better. I hate the fact that when she's not feeling good, it could be a million things. Is her shunt malfunctioning??? Maybe her cortef is out of whack!!!! Hey maybe the cyst is back...or maybe she's just a normal sick kid. It's a horrible way to live sometimes.

Ixnay on the feeling better....Just talked to Sam, she's really nauseated. OY

Friday, May 27, 2005 9:43 PM CDT

Sam has had an ok week. She's been extremely tired but her cold is getting better. She's having some weird pain in her back. It's beneath her shunt. She says it feels like something is crossing. She is having a hard time explaining it. I hope it's just weird muscle strain. She first noticed it when she bent down to pick up her back pack and then again tonight when we were bowling. I just have this funny feeling she's not going to be able to take gym next year. It is every day for an hour and that is a lot of activity for her. The tiredness is bothering me a bit. Not sure where it is coming from.

On a good note, she weighs 65 freaking pounds. Unbelievable. To me, she still looks very thin but I witnessed the weighing. I am very happy about that. The endo at Childrens called and fit us in next week so I stopped my panic attack and thanked them very much. There aren't many pediatric endos in Michigan. And even less that take our insurance. I might switch to Blue Cross in January so we don't have to worry about referrals. We have appt with her on Friday (darn, I had to take the day off). And with the neuro-opthamologist on Wed, just to check her vision. 3 weeks til our trip....Can't wait!!!

Saturday, May 21, 2005 5:16 PM CDT

this is caitlin, updating for my mom and sam. sam went into the hospital this morning at about six. she's had a cold for the past couple of days and ended up being really dehydrated. they admitted her because her heartrate is up to like 150. (i'm not sure about the numbers, i was half asleep..)
unfortunately, she is missing her dance recital, it started twenty minutes ago. i have no idea how she feels about this, but i imagine she's really upset.
they should be home tomorrow, so let's all cross our fingers.

****Update 10pm EDST...We're home. She got dehydrated which flipped out her adrenal insufficiency...they pumped her full of hydrocortisone...said yes you should give her extra cortef when she's sick...and we found out our beloved Dr Cara is moving to New York....(Sorry to break it like this, Jenni and Mike). He's a great doctor (endocrinologist). We're really going to miss him. But the other endos there are really great too. She's tired and we're going to bed. I have to work in the morning... OY


Monday - Nik came home today for a nice little surprise. So I've had all four kids here and I'm about ready to fill up my gas tank (if I had any money) and drive myself to Florida. It's been a long week already!!!! Sam is feeling pretty good today, and Alec has his appt at the eating disorder clinic tomorrow morning. The way they prescribed Sam's hydrocortisone shot was incorrect so Dr Cara called it in to the pharmacy the right way and we should be able to pick it up tomorrow. All of this is a little scary. I'm not sure what to think yet but I'll just have to be more diligent than I have been. Luckily she's old enough to help me. And she's very interested in all her "conditions". Has tons of questions I can't remotely answer. Today she brought out her "brain tumor" doll. You open up the head and she has a piece of aluminum foil in there for the plate on her skull, and a brown piece of materal all balled up representing the tumor. She's a funny kid.

Tuesday - May 24...Mary Alice, I'm on the way!!!!! Today was another long day. Took Alec to the eating disorders clinic in Ohio. They said he has an atypical eating disorder. But he also has a ton of anxieties and stuff going on so they're going to try and get some neuro testing approved by the insurance company and take it from there. Sam complained of being tired and she still has her cold so I gave her an extra dose of cortef and told her to take an extra one tomorrow morning, as it's field day. Nik is leaving tomorrow to go back to his grandmothers cottage to work and Caitlin is spending the night at Jens.

Thursday, May 19, 2005 0:16 AM CDT

Sam was so happy to give herself a shot today. We finally got the insurance problem fixed and she's all set for a while. She noticed a red spot, I guess it's really pink, on her burr hole tonight. It looks like a scab picked off but it's been at least 2 months since her last surgery. Her hands were shaking really bad tonight and she said her legs felt jittery. But she went to sleep pretty quick. She had a dance practice tonight but didn't feel well enough to go. RECITAL IS SATURDAY!!!!!

Wednesday, May 18, 2005 6:17 AM CDT

I fixed the toilet and today already seems like it will be a better day. Why? It couldn't possibly be any worse. Right now I'm trying to wake up Caitlin. She made a good decision about school next year and has signed up for classes. That is a huge relief. I don't remember it being so hard to be a teenager 24 years ago when I was her age.

Tuesday, May 17, 2005 5:15 PM CDT

Bad day, no end in sight. This is so much harder than I thought it would be. I guess it's just a different kind of misery than I had before. But at least I'm off work tomorrow, Thurs, part of Friday, all day Sat and part of Sunday, all of Monday and Tues. I hope I can enjoy my time off. Sam is doing well. She said her shoes are getting small and so are some of the pants she's been wearing for 2 years. On the other hand my toilet keeps stopping up and I'm sick of asking Chris to fix it. I guess the shit is everywhere in my life now.

Sunday, May 15, 2005 1:25 PM CDT

The kids went back to Chris' this morning, I miss them already. But I have plenty of housework to keep me busy tonight. Not much new going on. We had a totally lazy day yesterday, we didn't do anything. It was nice. Sammi felt really tired all day and then she went to the bathroom and came out a new girl. She wanted to go see Daniels grave today so Chris took her and Alec to the cemetary. I haven't been there yet, I was planning to take her but then he did. She asked me this morning when we can go visit Kim again. Kim needs to move downriver so we can visit more often!!!!

We've got all the info together for the Rainbow Wish Connection, so we should be getting the final info on our trip in about 3 weeks. Please pray for Kaidrie who is still struggling. She's so damn cute. Biggest eyes I've ever seen on a human I think.

Saturday, May 14, 2005 6:26 AM CDT

Took the kids the see Emeralds mom, Kim, and her brother and sister, Ian and Anya. They basicallly played with Alec and Sam for 2 hours straight. Poor Anya wanted Sam to give her a horsie ride but of course Sam can't because of her shunt. So Alec gave her one but I know Sam's would have been better. Kim seems to be doing ok. We talked about Emma most of the time. I wish I had been able to get to know her better.

Sam is feeling pretty good. This week we have a field trip on Thursday to see the Toledo Mud Hens. Alec and Sam are both going so it should be fun. And Sam's dance recital is Saturday. She is pretty excited. Last year at this time she was being home schooled and all the fun started in the beginning of June. We have a lot of plans this summer so I would appreciate a healthy Samantha. Thank you.

Thursday, May 12, 2005 9:14 AM CDT

Sam went to a memorial service at school yesterday for Daniel, her friend who died last October from host vs. graft disease. I think they dedicated a tree to him or something like that. I kept asking Sam about it and all she would say was, "I don't know." So I'm assuming she was a bit upset. She's feeling ok I think. I'll be picking them up tonight and keeping them for the weekend. I can't wait. We have a lot of fun together. Nik is going with his grandmother to her cottage for the weekend and Caitlin is having her step sister Jess and friend Rachel spend the night Friday so it should be a pretty full house.

Tuesday, May 10, 2005 4:58 AM CDT

Sam came back from dance last night with a really bad headache, the worst she's had in a long time. I think we forgot to give her her morning meds tho. She and I went on a field trip yesterday and we were in a big hurry to get to school on time. Alec and Sam both go to school early to be room helpers. I almost never forget her meds, infact, she almost never forgets. But she's forgotten them before and not gotten a bad headache. It was pretty warm yesterday so maybe she just got a bit dehydrated.

The field trip was fun. We went to Ste Anne's church, which is the second oldest Catholic church in America, founded in 1704. Then we went to Mexican town, visited a Mexican store, and went to Xochimilco's, which in my opinion has the best hot salsa in the world. Then we got back on the bus and went to Ford Field, where the Detroit Lions play (if you can call it that). The field is way more impressive than the Lions. We went into the locker rooms, media area, a 300,000 dollar suite and then we went onto the field. That was pretty cool. And then after school, Kayla and Carly came over to play with Sam. We played Uno, ate pizza and sat around and talked. Nik and Caitlin were here and then their step sister Jess came over. It was a lot of fun. Ohmigod, I just realized we forgot to watch 24. Sammi is going to be really po'd when she remembers. We love that show.

Sam's burr hole is still really really deep and she has been complaining of more headaches but until it starts affecting her activities, I'm not going to call.

Sunday, May 8, 2005 8:01 AM CDT

Sam had a new friend spend the night at her dads last night. I am so happy to see her making new friends. She has had such a hard time socially at school this year. Hopefully this is the beginning of some new friendships for her.

Happy mothers day to all the moms out there, especially the ones who are grieving for their children.

Saturday, May 7, 2005 12:57 AM CDT

Sam has been feeling ok, a few little headaches here and there and her burr hole is really deep, so she thinks her pressure is low but she's doing pretty good. The school has decided to allow Sam to finish out the year as a room helper instead of finishing as a safety. If she misses a day (and I am pretty sure she's only missed 2 since March 1) it won't create a huge problem like it apparently would if she was a safety. She's disappointed but what can we do? I heard her telling someone the other day that she likes to swim but it really tires her out a lot. I guess I didn't realize that physical things tired her out so much. The growth hormone should start up again next week. It's been a nightmare trying to get it started again. But all in all she's doing really well and we're getting all the paperwork together for our trip so things are good.

Please pray for Kaidrie, who is going thru a really rough time. She's so damn cute....

Wednesday, May 4, 2005 10:42 AM CDT

Well, Sam is feeling better and now I'm sick so I think she just had a little bug. Luckily? I'm sick on my day off. The kids are all in school so I'm enjoying a little quiet time. We got some forms from the wish company yesterday so I'll be running around gathering birth certificates and all kinds of things. A limo will pick us up at 0630 on June 18 and then the fun begins. We can't wait.

***Chris thinks maybe she's feeling crappy because she hasn't had her growth hormone in a couple of weeks. He's probably right. I called the company today and they said she's been approved, and then I got disconnected twice and then told to leave a message. So she probably won't be able to get a delivery until next Tues. Tomorrow I go to pick up Nikolaas from school. I can't wait to see him, he always cheers me up. Please pray for Kaidrie who is going thru a really rough time....

Monday, May 2, 2005 4:32 PM CDT

The last couple of days Sam has been really tired, a little nauseated and her appetite has decreased. As I'm reading about adrenal insufficiency, I'm seeing these symptoms preclude Addisons crisis. I am going to call Dr Cara's office right now and see if I need to bring her in. Thank God I posted on one of my web sites, I never would have put it all together, she's been doing so well. My head hurts.

Friday, April 29, 2005 7:56 PM CDT

We had a nice quiet day today. Sam was really tired all day and not really eating well. Hopefully it's just one of those days. Now we're going cosmic bowling. It's 9:30 at night. My kids are crazy.

Please pray for a sweet little girl named Kaidrie who is having seizures. I think you can access her updates at Tumbleweedfoundation.org, but not her web page. She had to password protect it because some idiot accused her of something stupid, I'm not sure of the details but on top of everything else they have to worry about, they have to worry about people being dumb. Anyway, she has the most dreaded brain tumor, dpg. She's got the most beautiful eyes I've ever seen in my life.

Friday, April 29, 2005 7:56 PM CDT

We had a nice quiet day today. Sam was really tired all day and not really eating well. Hopefully it's just one of those days. Now we're going cosmic bowling. It's 9:30 at night. My kids are crazy.

Please pray for a sweet little girl named Kaidrie who is having seizures. I think you can access her updates at Tumbleweedfoundation.org, but not her web page. She had to password protect it because some idiot accused her of something stupid, I'm not sure of the details but on top of everything else they have to worry about, they have to worry about people being dumb. Anyway, she has the most dreaded brain tumor, dpg. She's got the most beautiful eyes I've ever seen in my life.

Thursday, April 28, 2005 7:35 PM CDT

Glad to be home tonight, with my kids....I'm tired but happy to have the weekend off. Sam is feeling really good. Alec is happy watching teenage mutant ninja turtles and Caitlin is at church, where she belongs!!!

Had a nice chat with my friend Mary Alice on Tues night. Her daughter Lizzie (www.caringbridge.org/va/lizzie) had a germinoma, a cancerous tumor in the same area as Sam's. So they have a lot of the same hormone issues. I realized the havoc that an illness can wreak on a family. It happens to almost all of us I think. I feel better this week, knowing we're not alone. Mary Alice, it's always so good to hear your voice. And when Lizzie answers the phone with the sweet southern accent, she just melts my heart. She sounds just like her momma.

Tomorrow we're going to a new dentist, but someone I've known for 20 years or so. She's my sisters best friend and if anyone in Michigan needs a dentist, call me.

Ok, today I'm happy, tired and grateful.

Monday, April 25, 2005 10:53 AM CDT

Today I'm trying to focus on good things. My children love me and I love them more than anything. For the most part, I am able to give them what they need. It's tough having to count every penny now but that is probably a good thing. We are going on an awesome trip in about 7 weeks. I got some info in the mail from New Orleans and we are going to have a great time. They have a Six Flags down there and Sam just loves roller coasters. They have a really cool aquarium there that Nik has been to and he says it's really nice. There is a haunted tour of cemetaries that I bet Sam would like. Alec and I will do something else when that tour comes around. I am really looking forward to this trip. Sam is all signed up for camp this summer and she wasn't able to go last summer.

I am waiting for the eating disorders clinic to call about Alec and I went to talk to Caitlins counselor at school this morning. She's having a hard time in school right now. I pray that she starts making better decisions. She just cannot wait for her adult life to start. Unfortunately for her, she's still a child (17 is still a child). The last 2 years have been really hard on everyone, but Alec and Caitlin really seem to be having the hardest time.

Sunday, April 24, 2005 8:27 PM CDT

I'm so much better today, I have my kids....Yesterday was a long bad crappy day. No kids, snow, wind, cold. I deal with such shitty people at work. Not the people I work with, the people they put in jail. Robbers, rapists, murderers, people driving on suspended licenses (don't do that in Redford, Michigan, you'll go to jail for months). Sometimes it's hard to get out of the "everyone is an ass" mode and get back into "most people are normal and nice" mode. I get called names at work (normally just the prisoners call me names), yelled at, spit on, glared at, things thrown at me etc etc etc. And I hate what a bitch I am when I work the jail. But you just can't help it. Why am I talking about this??? I have no idea. I get to go home at night and they don't. (Which by the way is one of my favorite things to say to them, they hate that).

Hopefully, this week won't be too stressful, only 2 days of work this week. Nik coming home soon. I can't wait. He adds a large ray of sunshine to my life. Oh and Sam is feeling fine. I should mention her once in a while.

Thursday, April 21, 2005 4:43 PM CDT

Sam stopped running track, she said she was just too tired. She said it was hard to run. She doesn't seem too upset but I told her that her and I will start walking everyday to build up her strength. I slept really bad last night and it's only 6 at night but I'm about ready to go to bed. I think I'll take some tylenol pm and sleep all night. I have to work this weekend, so not much to look forward too. Except bowling on Sunday, our team is in first place. I could also be tired because I have spent the day trying to get Alec approved for an eating disorder clinic in Ohio. He doesn't have anorexia or bulemia, but he has some anxiety that has transformed into eating only a few different kinds of food, nothing very healthy. Apparently Alec felt like he needed to get on the "unhealthy child of Ellens" bandwagon that my kids have all jumped onto in the last couple of years. Nikolaas and his juvenile macular degeneration, Caitlin and her collar bone and of course, Sammi. He also is extraordinarily afraid of thunderstorms, going so far as to being afraid of wind, clouds and going 20 minutes without watching the weather channel. Spring is not my favorite season anymore. But he is strong and wants to get better. The only problem is the only place to treat him around here is in Ohio, 45 minutes south of here. But we'll do whatever we need to. I need to get back to midnights.

Did I ever mention that Porter is the best sargeant ever??? I didn't think so!!!!

Ok, dishes, pick up kids stuff and go to bed. Good night all!

Tuesday, April 19, 2005 7:29 PM CDT

Sam is really pissed right now. Her little friend Wylie died a few days ago, I believe he had medulloblastoma. It reoccurred a couple of months ago. She never met him but they traded emails last year before she got really sick. Unfortunately, after we got out of the hospital, our computer took a crap and we just recently got back on. I don't even know what to say to her anymore. I know some people really believe in protecting their children from the bad things that happen in this world. Sometimes I worry about her "obsession". The kids names on her window. But I'm proud of her for being so empathetic. And I'm sure that kids who have been sick are exposed to more bad things than "normal" kids. But I think that this will help Sam cope with the shitty things that happen, when she gets older. That stuff will pale in comparison. She actually knew 2 children who died in the last year and several children that we didn't "know" but had grown to love have died. It's not normal and it's not good but it's life and part of our world now. She'll appreciate life more. She'll be aware of the shortness of life. She'll always do her best because she knows it can be taken away at any time. She knows she's lucky. Even tho she goes thru periods of "why me", she knows she's lucky. She didn't have cancer. She's relatively healthy. What happened to her totally sucked but it could have been worse and she knows it. Things are getting better for her everyday. Maybe she feels guilty about that. It's quite a burden for a 12 year old.

***ps, she hasn't had growth hormone shots since Saturday because they had to reauthorize thru the insurance company. I called in a re-order and they never said anything about that. They never called to say it wouldn't be delivered. She's afraid she'll be too short for middle school. They need to hurry and delivery that medicine.

Sunday, April 17, 2005 8:33 PM CDT

The kids and I had a nice weekend. They had a half day on Friday, so we went to Greenfield Village, opening day. If you like history and you ever come to Michigan, I would strongly suggest you visit this place. In fact, if you call us, we'll meet you there. Then on Saturday, we went bowling and to a movie and dinner, with Chris. I feel bad, on the days I don't have the kids I'm working, so I'm not alone. The days he doesn't have the kids, he's home alone. So I try to include him in our plans when possible. I think he's enjoying the quiet time a little bit. I know I do!!!

Sam has been feeling pretty good, just some back pain and her hands shake most of the time. She seems kind of concerned about this, but I think it's the diabetes insipidus.

Today we went to visit Kim. She let Sam pick out a Bratz doll or a beanie baby of Emeralds. I thought for sure she'd pick the beanie baby. But she said later that Bratz dolls remind her of Emerald much more than beanies so that's why she picked the doll. Kim's house seemed empty without Emma there. Sam said it felt weird. It did.

Thursday, April 14, 2005 6:56 PM CDT

Crappy day. Sam seemed happy when I went to see her at Chris'. I have to take Caitlin to see Dr Zaltz tomorrow morning at 8am, and I have to drive 30 miles to pick her up and then about another 15-20 to get the the docs so the kids are staying at Chris' tonight. Caitlin has had 4 surgeries to correct a congenital birth defect in her collar bone, including 2 surgeries to fix a fracture after the original correction was done. Well, when they did the last one, the pin broke and they were able to take out the top of the pin but the long part, they had to leave in. So we have to go every couple of months and get it x-rayed to make sure the pin isn't falling out or something like that.

Back to the crappy day. I stood up for myself twice today and it wasn't pleasant. I normally let people walk all over me. (Shut up Porter). But not today. I need to start standing up for myself. I was so uncomfortable being bitchy but sometimes you can only take so much shit and apparently I reached my limit today. That's all I'm going to say. Oh and apparently I'm allergic to work because my eyes burn, itch and water constantly when I'm there. I think it's psychosomatic!!!!

Sam is excited about seeing Kim on Saturday. Kim is going to let her pick out a couple of Emeralds Beanie Babies. I am going to bawl, I know it. Nik will be home in about 4 weeks, from school. I can't wait. Oh and our trip is moved again to Monday - Friday. I couldn't get the Sat and Sun off. We don't care, it'll be fun anyway.

Monday, April 11, 2005 5:18 PM CDT

Sam has been feeling pretty good. She started track today. I think it will be good for her but she's upset because she's so tired. She wants to know when she'll get her strength back. I told her it will take some time. Of course, she doesn't want to hear this. She just wants to be back the way she was. Tomorrow all my Canadian relatives are coming over to see the new house and to visit. My mom was born in Canada and we buried her there. I love Canada. I'm excited but kind of nervous. I'm really not the dinner party type. But they're family so they won't care that I can't cook!!!

***Update - Tues am....Ingrid from Rainbow Wish Connection just called, we're going to leave on Saturday, June 18 and come back on Wed June whatever. We're going to be in New Orleans on the weekend, Ingrid said there is a lot more do to on the weekends. We will be staying at a hotel in New Orleans called Hotel Provincial, it used to be an old army hospital. It's probably haunted too!!!! Then on Monday, we'll head down to the haunted plantation. We are really excited... (Hopefully Lisa can work for me on Saturday and Sunday). I just went into Sammi's room and I noticed that she has written all the names of the children we've "met" that have died or that are alive and fighting brain tumors, on her windows...Beth, Emerald, Wylie, Cheyenne, Rayanne, Melody, Isaac, Mo, Nicole, Lizzie and she also has her friend Daniel who died last year of a blood defect and Simonne, her friend from Childrens who has CF.

Thursday, April 7, 2005 7:23 AM CDT

Sam went to school today. She had some blood drawn yesterday to check her electrolytes. Her skin is so transluscent, you can see almost every vein in her body. It's really weird looking. Her pulse is 140 and her blood pressure was good, but a liitle high for her. So when Dr Sabal calls back, I'll update. I have to work at noon today and then all weekend. Yuck.

*****Sam is anemic, her hemoglobin was 10.3. So that's probably why her body is transparent. We're waiting for the doc to call Chris back to see if it's something we should treat. It could explain why she's so tired again...

Wednesday, April 6, 2005 8:36 AM CDT

I think Sam's not feeling well due to a bad cold. It's all in her nose, altho now she has a fever. She was up all night peeing because her desmopressin doesn't work as well when she's stuffy (it's taken intranasally). I was going to take her to school but now she has a fever so we'll try one more day at home. Alec is home sick too....the fun never ever ends.

Tuesday, April 5, 2005 10:37 AM CDT

Sam has a really bad headache since last night. It's weird, I was talking to her on the phone (I didn't pick her up from dance as I had a bad headache) and she was as happy as I've heard her in a long time. 20 minutes later Chris calls and said that she came in the house from playing outside and complained that her head was hurting worse than it has in a long time. I just called home and she's still sleeping (it's almost noon here). He said he's going to take her downtown if she's not feeling better by noon. I was just going to talk to her teacher about being back on safety's but I guess it'll have to wait. I am so bummed out right now.

Saturday, April 2, 2005 11:07 AM CST

Chris took the kids (Alec and Sam) to Castaway Bay today. It's a huge indoor waterpark near Cedar Point. They're going to have tons of fun. Last night Sam started feeling kinda crappy again, neck and back hurting and nauseated. I told her to make sure she drinks enough today so she doesn't get dehydrated. I might go out to dinner tonight with my friend Kim. We've been friends since 6th grade. How cool is that???

Tuesday, March 29, 2005 7:10 PM CST

Sam thinks she's feeling better. Little headaches here and there but she thinks the Periactin is working. The only thing she thinks is still kind of funky is that her back hurts when she runs. Is there a chance that she will be normal now??? Is there the slightest chance??? God I hope so.

Saturday, March 26, 2005 1:22 PM CST

Sam seems to be feeling better. They drew her electrolytes yesterday because her hands have been so shaky but they said everything was normal. They're at Nana's this weekend, and I'm working. Happy Easter everyone and Happy Birthday Emerald!!!! We miss you.

***2 years ago today Sammi was getting a spinal tap to check for meningitis.

Tuesday, March 22, 2005 7:21 PM CST

Sam's still feeling the same. She got a package from the Popcorn Factory today from an anonymous person. It's so awesome, candy popcorn cookies, all kinds of cool things. So whoever it's from, thank you sooooo much.

I'm off the next 2 days, and I'm chaperoning Sam's field trip on Thursday to the Ford Rouge Plant. That should be fun. I think I'm getting pink eye or some sort of funky eye infection. My eye has been watering all day and now it's swollen and burning. I hope I am not contagious.

***Wednesday, I took Sam to school, she was awake all night saying her head hurt. Then I went back to bed and slept til about noon. It's fricking snowing here, hard. Isn't it almost April????

Sunday, March 20, 2005 8:22 PM CST

Took Sam and Alec back to their dads today, I hate doing that, just because I miss them but I know he does too. I didn't see them much on my work days before. I stop on my way home to give them kisses and then I'll pick them up on Tuesday. Next week will be great. They're off all week and I only have to work 2 days. We went to Rachel's recital today and it was fun but Sam didn't feel good, as usual, so we left as soon as it was over. Rachel, Katie and Anna did a great job.

I think Sam is going to have headaches for the rest of her life. A lot of people with pituitary tumors, or history of them, have problems for the rest of their lives. I think Sam is one of these people. This sux. No one knows what to do. The NS's say call the endo. The endo will probably say it's her shunt. All I know is that I'm sick of my daughter feeling like shit. She snaps at me, she's quiet, she just isn't herself. Is this the new Sam??? I'm not willing to accept that yet. She keeps asking me if they know whats wrong with her. And I tell her, "No, they don't know." That's a crappy answer.

Saturday, March 19, 2005 7:29 PM CST

Sam was feeling better this am but then tonight she said whenever she turns her head, it hurts her back, head and neck. She had an allergic reaction to her new med yesterday but we're still giving it to her, the hives have not reappeared since yesterday. She didn't go to school and I missed my monthly meeting, again!!! And I meant to call her teacher on Friday to let her know what is going on and I just got caught up on all the kid stuff going on and forgot. So if you talk to me on Monday, remind me to call her.

We went to Emeralds sisters birthday party. Anya had a great time and everyone seemed pretty happy. Kim is amazing, I wish I had half her strength. But Sam tells me today that if something happens to one of your kids, you'll always be strong enough. I think she's telling me I'm strong but I'm not sure. My toilet is stopped up and I am not very handy so tomorrow, that's my project. And I put together a small entertainment center for our tv and when I got all done, I realized I put the bottom on upside down. Now the fact that I finished it without giving up or screaming or crying is a major feat on my part. And I'm not even pissed about the bottom, I can just take it off and turn it over. That's about it.

Thursday, March 17, 2005 11:59 AM CST

Chris took Sam downtown today, they're going to try her on a new headache med, Periactin, which is also supposed to help stimulate her appetite. They're also going to write a letter to the school, as they haven't been letting her participate in safety's, etc...I understand why they won't, they want her healthy but it makes her feel even more isolated. So hopefully she'll be able to feel more normal at school. That's a big deal to her.

Tuesday, March 15, 2005 8:48 AM CST

Sam woke up crying, she cried in the car and I think she was crying when she went into school. I took her to see our pediatrician yesterday and she checked her eyes and said everything looked ok. She said her headache is in her forehead. I ended up picking her up early yesterday but so far she's still at school today. I know if I take her downtown they're going to say it's not her shunt. It's frustrating and scary, I have to work the next 2 days.

Please visit Rosey's website, she's a new friend who just finished treatment for osteosarcoma and she lives in Michigan. www.caringbridge.org/mi/rosey....


**** We didn't get to visit Emerald at the funeral home. Yesterday Sammi stayed home from school and today she stayed at school all day but I could tell she didn't feel good. I felt it would be taking a big chance that she would get a horrible headache, worse than it already is, if we went to the funeral home. Either she'd get really upset and make it worse or she'd hold it all in and make it worse. It's one of the hardest decisions I've ever had to make. Sam is mad at me. But she also had her final spring concert in elementary school and I knew it was important for her to go to that as well. I am going to get some blue/purple balloons on Friday and we're going to have a little service for Emerald, just me Alec and Sammi and maybe her friend Carly.

Today everything feels out of control. Something happened to Sam at school today, but she won't tell me what it is. Hopefully this weekend she'll relax a bit about it and tell me.

Monday, March 14, 2005 7:04 AM CST

Well, Sam is still feeling like crap. Her forehead is swollen and from a certain angle it looks bruised, on the side she had her craniotomy on. She said her forehead feels funny. It looks like she retaining some fluid and her burr hole (the handy little hole in her head) isn't as concave as it usually is, which would incidate high pressure. However the back and neck pain indicate overdraining. So they don't know whats going on. I took her to school, but I could tell she doesn't feel good. We have no idea whats going on.

Saturday, March 12, 2005 6:45 AM CST

I think Sam is finally feeling better. Chris took her downtown yesterday for a CT scan and they said her ventricles looked a bit small but nothing to worry about. So maybe she just had some funky virus. Or maybe her shunt is just adjusting itself or something. Who the hell knows? I'm at work, the kids are getting ready to go bowling, Nik is at his dads and Caitlin is with her best friend Rachel for the weekend. So it's gone from having 4 screaming kids at my home to me and the guinea pig. **Sam weighs 63 lbs, the most she's ever weighed in her life.

EMMA PASSED LAST NIGHT AT 10:08, SURROUNDED BY HER FAMILY. I HAVEN'T TOLD SAMMI YET. PLEASE PRAY FOR HER.

Thursday, March 10, 2005 5:28 PM CST

I think Sam's going to be ok, all her bloodwork so far has been normal. I'll call tomorrow to get the blood culture results, but so far, every thing looks good.

Tuesday, March 8, 2005 5:05 PM CST

Yesterday, we went to visit Emerald. Sammi insisted I take her. Of course, I wanted to see her too, but I wasn't sure it was a good idea for Sam. But I'm glad we went, we got to talk to her a little bit and spend some time with Kim and the rest of her family. Sam was mad I wouldn't take her back tonight, but I still don't feel good and I thought it might be nice to let her family have a break. On Sunday, we went to Emma's bday party. There were a lot of people there and it was nice to see Emma smiling and opening all her presents. There was a moment when Emma caught her moms eye and they just looked at each other for the longest time, but it was probably only about 10 seconds. At that second, I knew that whatever happens to Emma, she's going to be fine. Her mother loves her and she loves Kim and that's really all that matters.

I called in sick to work today, I got one of those special migraines that are usually reserved for working midnights with no sleep. But I was half awake all night, I remember a lot of weird dreams. About my mom, Emerald and Melody, my Grandmother....Sam had trouble sleeping too. She was pretty upset about Emma.

Sam is worried she's getting meningitis. Her back has been hurting and now her neck and her head hurt. She doesn't have a fever and she's feeling ok other than that. I don't know....I feel like a complete idiot when it comes to this stuff.

****Wednesday, March 9 1300 hrs... I just got back from taking Sam downtown for blood draws. They're checking her CBC, C-RP and lytes, bun and creatinine. I can tell she doesn't feel good, she's not talking, she's not biting her nails and she didn't change the radio channel when Prince came on. That's a sure sign that something is going on.

Emerald is feeling a little better, they're going to a movie today. It's amazing. One day she's on the brink of death, the next she's going to see Vin Diesel get bit in the ear by a big duck (The Pacifier is the movie they're going to see). And Beth has had another clear MRI. How awesome!!!!!

Friday, March 4, 2005 7:06 PM CST

This has been a long week, trading days between day shift and my last night on mids, tonight. Sam is feeling pretty good, but she seems really really tired all the time. I hope it's just this virus she's been fighting.

We found out our RainbowWishConnection.org trip is going to be from June 20-24. They are very excited we are going down there, apparently she's the first child to ever pick Myrtlesplantation.com for a wish trip. (Not a big surprise). I have always told my children I would never lie to them. I had to lie to Alec to get him to agree to go with us. He's pretty anxious about this trip because the place is supposedly haunted. So I told him that there is a special room set aside for people that don't like haunted rooms. He believed me. I feel really bad about lying but I had no choice. But since I don't really believe in places being haunted, maybe I really didn't lie. That's what I'm going to keep telling myself. They got us 3 rooms for 2 nights at the plantation and then 2 nights at another hotel. We'll be flying, which will be pretty cool. I can't wait, I'm getting really excited. And I only had to use 2 vacation days.

Melody died yesterday, after a long hard fought battle with Diffuse Intrinsic Pontine Glioma. Please visit her family at OurMelody.net and leave them a message. I know they read them every day.

Emerald is having a few little scary symptoms, saying her head doesn't feel right. I know Kim is scared. All I'm praying for right now is that Emerald feels well for her party.

Sam made a card for Emeralds birthday, with a poem she wrote by herself: Today you can forget your tumor
And forget all your troubles.
I hope your day is full of humor
And I hope your fun bubbles.

I just think it's so cute. She also told me today she wants to start fund raising. Right now her focus is Emerald. If anyone has any fund raising ideas that can be accomplished by a 12 year ( with a bit of help from her mother ) please let me know.

****Just a little scary note. The other day, Alec fell asleep after school. He never ever takes naps, he's 10 years old. The other day he told me he's having double vision. But he should wear glasses and doesn't so that's explainable. But when he fell asleep, Chris woke him up to take him home. Alec was so sleepy he tried to put his coat on like it was a pair of pants. He's still complaining of being tired and is getting headaches now!!!! Oy vey!!!

Monday, February 28, 2005 10:53 PM CST

Sam is feeling ok, still dealing with a sore throat. She went to dance class tonight and to orchestra practice at the high school.

Please pray for Melody, Emerald and Rayanne. Websites are below.

www.caringbridge.org/ca/melody
www.caringbridge.org/ca/rayanne
www.caringbridge.org/mi/emeraldisle

We went to see Emerald and her family on Saturday. Sam got a big kick out of meeting Blitzen, Em's little teeny weeny chihuahua. Emerald seemed ok, tired and weak but she was eating and watching tv. Her birthday party is on Sunday, we're going to have a big group there. Me, Alec, Sammi, my sister Jenni and her little one, Calvin. And if I can talk Nik into it, he'll go too. He's coming home for spring break on Friday.

Friday, February 25, 2005 9:09 PM CST

Sam went to school today. I was all set to go to my meeting at work (which I haven't been able to attend in about 6 months because of Sam's illness) and she called me from school and said her DDAVP had run out. I asked her what would happen if I waited a couple hours to bring it to her and she said, "Mom, I'll dehydrate to death." So I missed my meeting and brought her the meds.

She called me at work tonight and said she was really tired, I hope it's just her new cough medicine. We're going to see Emerald tomorrow, I can't wait. Her little brother and sister are adorable too.

Thursday, February 24, 2005 5:54 PM CST

Sam didn't go to school today, she was up coughing all night. I took her to see Dr Sabal, to get her sutures removed and to get a prescription for a stronger cough medicine. She should be able to go to school tomorrow, she needs to. I have a meeting at 9am, then I go home and sleep for a couple hours, pick the kids up, sleep for a couple more then work 12 hours.

I just talked to Kim, Emeralds mom. The decadron (steroid) is kicking in and she can move her arm to her mouth. They are cautiously optimistic, but realistic, about the new chemo. But we're going to go visit on Saturday, I'm excited about seeing her and so is Sammi. I just wish they lived closer so we could help out more.

Keep all the caringbridge.org families in your prayers, there is so much suffering out here. But there is also a lot of love.

Wednesday, February 23, 2005 7:53 AM CST

Well, both kids developed fevers over night, I picked up Alec from school early because he said he wasn't feeling well. As soon as I walked into the office, he puked. "Nice to see you too honey!!!". So they're both home today.

Please check in with Emerald (link below). What they thought was a fluid pocket, was in fact new tumor and it's growing into her brainstem. They are going to try a new chemo but her mom doesn't seem very hopeful. They're giving her a few weeks to a few months. I am just heartbroken. I have grown to love this family and Emerald and her mom are so strong. I'm hoping we can go visit on Saturday. WE LOVE YOU KIM AND EMERALD!!!


****Sammi had 3 really bad nosebleeds today, I almost took her to the ER. I'm glad she was too sick to go to school, she would have scared everyone to death, I know I was.... Oh and when I took Sam and Alec to the doctor on Monday, Sam weighs 59 lbs. That's awesome!!!!

Tuesday, February 22, 2005 11:07 AM CST

Sam now has a viral infection. I think she's finally feeling better and should be able to go to school tomorrow. Altho, her entire class is at camp, she will sit in the library and do make up work. It sux. She's had a fever, cough and congestion but I think she's doing better.

Emerald is at U of M, they think she may have a fluid pocket above where they removed her tumor. Yeah, we know all about those fluid pockets. Hopefully they'll be able to drain it and she'll get her movement back.

I hadn't said anything about this on Sam's website until we let everyone know, but Chris and I have separated. I am still in Wyandotte so we are just splitting the kid time. It's good that I have the work schedule I have. I work 7 out of 14 days , so it's easy to split the kid time. They're doing ok. It will be an adjustment. Along with the adjustment of me going back to days, it should be interesting. I'm actually looking forward to sleeping at night and it will be nice having another woman to work with, I almost always am the only chick on my shift!!!

Sunday, February 20, 2005 9:41 PM CST

Chris and the kids spent the weekend at Nana's. Caitlin just called me, the power is out at our house, she's fine so far but it's pretty cold out. I think Sam felt pretty good all weekend (I'm working) but she sounded tired everytime I talked to her.

Please pray for Emerald, who is having new scary symptoms. And for Melody and Sarah, who are near the end of their battles with cancer.

www.caringbridge.org/ca/melody

www.caringbridge.org/fl/sarahp

The kids don't have school tomorrow, so I'm going to go home, sleep for a while and then drive to Nana's to pick them up. We got a ton of snow here today, it's kind of pretty out but who wants to drive in this crap. Not me.

***Sarah passed away at 0250 am. Please pray for her family.

Friday, February 18, 2005 7:56 AM CST

We got home yesterday afternoon and Sam was able to get up this morning and go to school. My only prayer today is that she stay in good health and be able to be a normal 12 year old.

I am getting bumped to days. For some reason the administration where I work isn't remotely interested in helping me help my child. I can't say what I want to say, this is a public forum.

Also, please pray for one of our lieutenants, who was seriously injured on Wed playing hockey. From what I understand he has multiple facial fractures from running into another players helmet and had to have surgery yesterday. His name is Eric but we all call him Cliff. God will know who you're talking about.

Thursday, February 17, 2005 9:34 AM CST

Sam's surgery went really well, she is feeling better even tho they didn't really do anything. They think whats going on is that she's getting dehydrated from the diabetes insipidus, meaning she's not drinking enough at home. That can cause all kinds of problems, including the kinds of problems she's having. So they're going to keep her on the monitor for the rest of the day, we'll be home either tonight or tomorrow. She's at school right now, which is amazing because she never wants to go to school here. Nor go to the playroom. She asked me to take her there last night and she didn't argue at all when I told her I was taking her to school. She woke up really fast and really well from the anesthesia yesterday, she's doing great.

Wednesday, February 16, 2005 1:00 AM CST

Sam went to school for a half day yesterday and seemed to do pretty well. Today is the ICP monitor. I pray that we find out something. Alec is pretty upset, he's so sick of her being sick. I think he takes this harder than anyone, cept Sam of course. He's such a sensitive little fellow. He wants to come to the hospital with us, but he can't miss school. I'll update as soon as she's done with surgery tomorrow.

Monday, February 14, 2005 7:15 PM CST

Sam had a nice time at her birthday party on Saturday, there were 8 other kids there and they all seemed to have fun.

Day to day life is becoming a struggle. Sam is still sleeping 12-14 hours a day. Last night she went to bed at 8:30 and woke up at 11am. She had a half day at school so she wasn't able to go. I am working tonight and tomorrow. So I work a 12 hour shift, go home sleep til about 11am, get Sam ready for school if she's up to it, take her to school, take Alec to lunch (that's a whole nother story) go home and sleep for 2 more hours then I pick them up from school and then maybe I can get in another couple hours of sleep. Fragmented sleep sux. The way she's sleeping reminds me of last year, when she had the cyst. I am sure it hasn't returned but it just makes me nervous. Her head always hurts, it's worse in the morning. Today she started feeling nauseated. She's also been complaining about her back hurting, below her shunt. She's having another ICP monitor put in on Wednesday so maybe we'll find out whats going on. Everything about this is so frustrating. If she goes to school, it postpones her being home schooled if she needs that. If she doesn't go to school, I feel like we're failing her or not being good parents. I don't think people understand what we're dealing with.

There is some good news, the megace that Sam takes to stimulate her appetite is working well, she eats about 6 meals a day. I can't wait to weigh her.

Thursday, February 10, 2005 8:47 PM CST

Sam had a good birthday but she did say her headaches are getting worse. She looked so pretty today. She wanted to look nice for school. I hope to get a picture on the website.

Please pray for a little girl named Melody from California who is near the end of her battle. www.caringbridge.org/ca/melody


****Someone suggested that Sam feels bad during the week and feels better on the weekends. I would like to dispell that notion by noting the dates in her journal since 09012005 and how she felt.

0910 Friday Doing well
0920 Monday Doing well
0926 Sunday Not doing well
1004 Monday Not feeling well
1016 Saturday Not feeling well
1030 Saturday Not feeling well
1113 Saturday Not feeling well
1118 Thursday Not feeling well
1122 Monday Not feeling well
1127 Saturday Not feeling well
1129 Monday Not feeling well
1201 Wednesday Not feeling well
1215 Wednesday Feeling good
1217 Friday Not feeling good
1224 Friday Feeling good
1225 Saturday Feeling good
1230 Thursday Not feeling good
0103 Monday Sick all weekend
0104 Tuesday Sick
0116 Sunday Feeling good
0117 Monday Feeling good
0121 Friday Feeling great
0129 Saturday Feeling good
0130 Sunday Feeling sick
0204 Friday Feeling bad
0205 Saturday Feeling ok
0206 Sunday Feeling sick
0209 Wednesday Feeling crappy
but returned to school 1/2 day
0210 Thursday Headaches worse but went to school and turned 12.

Wednesday, February 9, 2005 7:36 PM CST

Well, Sam is still feeling crappy, so they're going to put in another ICP monitor next Wednesday. We've had kind of a bad week. Sam isn't going to be able to go to camp afterall. They're afraid she won't be able to make it thru the day, as she can't even stay at school for a full day. But she did go to school today for 3 hours. She really felt crappy and I kind of forced her to go, but she made it and I'm very proud of her. She's giving herself her growth hormone shots now. She's amazing. She's upset. She'll be 12 tomorrow. I think she's looking forward to her birthday. I think I'm looking forward to her feeling better.

Saturday, February 5, 2005 8:29 PM CST

Sam is feeling a little better today. I'm working this weekend, so I only saw the kids for a few minutes.

I have a request, Sam has been feeling really isolated. If you sign her guestbook, please leave a favorite memory of yours that involves Samantha. Even if you've never met her. I think that would help her feel better. I got this idea from a girl in Georgia who is suffering from liver disease and lupus. Her mom gives visitors to their website, assignments to help her daughter feel better.

Tonight, I don't have a specific memory to relate. But whenever she's around her brother Nikolaas, she just lights up. I love watching them together. She misses him tons. He is funny and loves her to death. They have so much fun together. He's coming home this weekend and her birthday party is on Saturday at build a bear. She's going to be 12 years old. Unbelievable.

She got her shot last night, said she didn't cry but stated, "it still hurts a lot". She's so brave.

****I just remembered a favorite memory ( I only got about 5 hours of sleep today). When Sam was in the hospital for a month last summer, she just refused to tell me she loved me. I'd say it and she'd nod her head and not say anything. I didn't get upset, I knew she didn't feel good. So as they were wheeling her in for her craniotomy, I told her I loved her and she said it right back. That's one of my favorites.


*****Update on Sunday, Feb 6. Sam is not feeling well today, she called me at 8:20 and said she was going to bed. I'm going to have to call her principal tomorrow and see what we need to do. I am completely depressed about her. I don't know what to do anymore. School is becoming a major problem again, she's missing so much, I just think we need to start the home school thing again. I don't want her to fail school. I think Dr Sood might need to do another ICP monitor. I just don't know anymore.

Friday, February 4, 2005 7:07 PM CST

Well, the headaches and tiredness have returned in full force. I honestly think her body can handle that shunt for about 2 weeks then it says this is crap. She tells me the headaches are "spikey". She wakes up in the middle of the night saying, "it's spiking". It spikes every few minutes, then she'll fall back to sleep. She missed 3 more days of school this week. She has to start the growth hormone shots again but she wasn't really upset about that. She was happy that he's lowered the dose so she can give herself the shots. She's supposed to be going to camp. I have a feeling it's not going to happen. She's missed so much. She missed a magic show the other day, then she says, "well I missed the practice, I wouldn't have known what to do anyway". Her headaches seem worse in the morning, she wakes up crying everyday. I took her downtown yesterday, the nurse said again, she's full of crap but this time it's pushing on her tubing and maybe that's why she's got all these headaches. It doesn't really explain the tiredness tho. She's started on megace again, to stimulate her appetite. So these are the meds she takes everyday.

Elavil 25 mgs at bedtime to help her sleep
Megace 20 mgs at bedtime to help her eat
Desmopressin 0.1 ml twice a day so she doesn't pee
herself to death
Nutropin .6 mgs 6 days a week to help her grow
Cortef 5 mgs twice a day to help her body handle
stress. I think that's it.

I got bumped to days. I think I'm going to put in for a hardship transfer back to nights. There's no way I can work days with Sammi still having so many problems. She missed 25 days of school last card marking. There's no way we can deal with that if I'm on days. I have to get a whole bunch of documentation together, like her attendance records, drs letters, Chris' evaluation which mentions the only area he needs to improve on is attendance.

I'm tired today. I feel very depressed, which is weird for those of you who actually know me. I always bounce back quickly, but today it's not happening. Tomorrow will be better, I'm sure.

Monday, January 31, 2005 8:18 PM CST

Sam got a headache yesterday, had it all day today, but went to school and dance anyway. I'm very proud of her. She knows if she had called me, I would have picked her up. She even stayed after school for math club.

***Disclaimer - this is nothing against Sammi's school. But last week I had to meet with the truant officer, if you can believe that. I got a letter on a Friday that I had to be there Monday morning at 10am. Now keep in mind that I work midnights and 10am is in the middle of my night. I had been up for about 20 hours.

So, this lady sits down with me and explains why I'm there and I start getting pissed. I mean, she had a brain tumor, has a shunt and has had 14 operations in the last 13 months. She's been in the hospital 9 times in the last 13 months. She was home schooled for 6 months last year. She tells me she has to ask me a difficult question. The question was, do you feel Samantha is (and I don't quite remember how she worded it) exaggerating her illness. I became visibly upset. She then says and I quote, "I'll write in here that my questions are overwhelming you". I said, "they're not overwhelming me". The whole situation was overwhelming me. I work for a police department, I understand stupid questions, I understand procedures and I understand that a truant child is against the law. What I don't understand is why, after all this time, I had to answer those stupid questions. There should have been another way for them to determine if she was truly truant or not. Oh and in the letter it stated there was "no medical documentation to excuse all the absences." Hence my crappy attitude when I went in. I honestly tried to hold it together, not to have a bad attitude. But when she asked me if Sam was exaggerating, I just lost it. We've fought that battle with the hospital and with ourselves.

I feel better now. It's amazing to me what we've had to go thru with this. Dr Sood said last week that everything that's happened to her is weird. The cysts normally don't change size, they don't burst, you don't get meningitis, you don't need a shunt, they don't cause multiple hormone deficiences, you don't get a csf leak and if you do, they're easily fixed with blood patch (3 blood patches and 2 surgeries finally fixed it). Unbelieveable, the whole thing.

*****Feb 1. Dr Cara left me a voice mail today, he says her growth hormone is back down to 95. Normal is 140-400. When it was low before it was like 72. A few months ago it was 109. So I have a feeling we're gonna start the shots again. Sam's not happy. She goes to 6th grade camp in about 3 weeks and she's worried about who is going to give her the shots.

Sunday, January 30, 2005 12:01 AM CST

Sam's doing well, she's excited about going back to school tomorrow. Caitlin and I are at home, cleaning. That's about it...

Friday, January 28, 2005 1:09 AM CST

Well, I got a new car today, it's a 2005 Chevy Malibu and I love it.....Sammi stayed home sick again today, her throat is really killing her. No school tomorrow so it should be a fun day. I have to work Saturday and I start bowling on Sunday. I haven't bowled on a league in years, it should be a lot of fun.

Sam pulled a stitch out of her back yesterday, that's so gross. Nik might come home next weekend. Other than that, not much is going on.

Thursday, January 27, 2005 1:53 AM CST

Sam is doing well, except she has a sore throat so the doc put her on antibiotics just in case. She's doing really well, besides that. Alec is doing ok, he's been in a pretty good mood, not too worried about anything but he might be put on an anti-anxiety medication, he definately worries about a lot of things. Caitlin is doing ok, she's taking her finals this week and seems stressed out too. I think we're all a little stressed this week. We got into another car accident yesterday (3 in 2 weeks, that must be a record *for the record, only one was my fault) and the kids were scared. It's a very frustrating time for us. Things should get better, right????????????

Sunday, January 23, 2005 4:12 AM CST

Well, Sam is still feeling pretty good, except for a cold. Dr Cara, the endo, sent a letter to our family physician, Dr Sabal. Sam was 141.6 cm, slightly above the 10th percentile for her age and weight of 26.1 kg, which is well below the 5th percentile. (26.1 kg is 57.4 lbs) He described her as "very thin, very immature (not socially, physically) and fragile looking". Then he said she had an "almost mesmeric appearance". I can't find that word anywhere in a dictionary that has any medical reference.

Hopefully we'll find out this week if she needs to start up the growth hormone again. Hopefully she won't have to, but I just have a funny feeling.

Friday, January 21, 2005 8:50 AM CST

Sam is doing great!!!! She's been at school all week, not complaining of being tired, no headaches, no golf ball sized swelling on her back. I met with her teachers, school nurse and principal today and they all said she's doing great. She jumped right in during science and her teacher said she knew more than the kids who had heard the first half of the lesson. All in all, she's doing great. Her endo still doesn't have the IGF results yet. There were actually 2 IGF tests done, the first one came back low normal so he wants to see the other one before we make a decision about the growth hormone.

***update - My life is such a drama. I never wrote about this but the day I brought Sammi downtown, I stopped for gas, it was snowing really hard but I wanted to have a full tank...so I'm just sitting there, innocently pumping gas, when this chick in a pick up truck just totally sideswipes my car, the side Sam's sitting on. Takes the mirror off my car. She gets out, I think she's drunk but I don't have time to deal with it, I'm on the way downtown to take my daughter to get cut open again. She picks the mirror off the ground and tries to stick it back onto my car. Flash forward to today... I'm driving to work, minding my own business when 7 cars in front of me all crash and of course I'm the last one. I'm the one with damage. I'm the one who's air bag explodes in her face. I hurt my hand, my foot and my bra left marks on my chest....I think my car is totalled. I totally do not need to deal with this right now. I am getting bumped off of midnights and put back on days which means the stress of who's going to pick up the kids, who's going to leave work when Sam is sick....I could have done with out today....

Monday, January 17, 2005 7:49 PM CST

SAMMI WENT TO SCHOOL TODAY AND STAYED ALL DAY!!!!!!! She felt good, said she had a good day, her friend Carly came over for the entire evening and it was awesome.....Oh and Simonne got to go home today.....


*****Tuesday: Sammi stayed at school all day, had a big smile on her face and her teacher called me to tell me she's keeping up with the kids, not getting tired and seems happy to be at school....I love you Sammi

Sunday, January 16, 2005 7:45 PM CST

I will try this again. Sam is at home doing her homework, just like a normal 6th grader. She's feeling good and ready to go back to school. But no gym or recess until we see the doctor next week. She'll have to have 2 separate appts for suture removal. We'll do the head sutures at our doctors office and the back sutures downtown.

Please pray for Emerald, who is patiently waiting to go home...she needs strength in her legs.....pray for Nicole who is waiting for tumor board to make a decision for treatment....and for Simonne, who is a very brave girl fighting a disease that insinuates itself into every aspect of her life (cystic fibrosis). And please pray that Sam will be able to return to school on a regular basis. That's not a lot to ask, is it?????

Friday, January 14, 2005 1:28 PM CST

Sammi is coming home tomorrow!!! She got up, walked around, went to the bathroom and ate, all the pre-requisites for going home.... She wanted to get the shunt put back in. I take that as a good sign, she wasn't upset that she had to have it put back in, she was glad. So, we're just going to have to live life with a shunt. As long as we don't get another leak, I think it'll be fine.

Her friend Simonne, who has cystic fibrosis, has been here as well, she comes in every 6 months or so for a "tuneup". She is 11 going on 30. She knows as much as the nurses, she comforts me when I'm upset, she holds Samantha's hand, she's an all around great person and I am so glad to have met her. I think I've been able to help her a bit too, her family lives far away and they're not able to spend a lot of time down here. We make a good team, taking care of Sammi and I've helped her thru some scary times. Simonne, we love you very much. Thanks for everything....

I had all these profound things I was going to say, how upset I was, how scary everything has been. But since we're going home, I am in a different place. I'm in a positive place. That is good.

P.S. Thanks to Nana for sending balloons all the way from Alabama....and thank you to Beth, Jenni and Mike Simsack for stopping in to visit us while Beth's eyes dilated. That was a nice surprise and it's great to see Beth doing so well!!!


*********Update, Saturday...Sammi is home. I think Dr Cara wants to start her on the growth hormone again but we'll talk about it in a week.

Friday, January 14, 2005 1:28 PM CST

Sammi is coming home tomorrow!!! She got up, walked around, went to the bathroom and ate, all the pre-requisites for going home.... She wanted to get the shunt put back in. I take that as a good sign, she wasn't upset that she had to have it put back in, she was glad. So, we're just going to have to live life with a shunt. As long as we don't get another leak, I think it'll be fine.

Her friend Simonne, who has cystic fibrosis, has been here as well, she comes in every 6 months or so for a "tuneup". She is 11 going on 30. She knows as much as the nurses, she comforts me when I'm upset, she holds Samantha's hand, she's an all around great person and I am so glad to have met her. I think I've been able to help her a bit too, her family lives far away and they're not able to spend a lot of time down here. We make a good team, taking care of Sammi and I've helped her thru some scary times. Simonne, we love you very much. Thanks for everything....

I had all these profound things I was going to say, how upset I was, how scary everything has been. But since we're going home, I am in a different place. I'm in a positive place. That is good.

P.S. Thanks to Nana for sending balloons all the way from Alabama....and thank you to Beth, Jenni and Mike Simsack for stopping in to visit us while Beth's eyes dilated. That was a nice surprise and it's great to see Beth doing so well!!!


*********Update, Saturday...Sammi is home. I think Dr Cara wants to start her on the growth hormone again but we'll talk about it in a week.

Wednesday, January 12, 2005 8:49 AM CST

Sam came thru her surgery ok, but her pressures have been all over the place. He unhooked her shunt so hopefully it's just her body getting used to doing the csf work by itself. She's sleeping right now... I'll update later if anything changes.


****Update... Sam is still feeling pretty crappy....her pressures are still kind of high. However, we found out that we were approved for a wish trip thru rainbowwishconnection.org here in Michigan. Sam has chosen to go to the Myrtle Plantation in South Carolina. It's actually a haunted hotel. Alec is going to freak. We're really excited tho. They do the whole limo thing and fly us and everything. We have had a bit of good news this week and that helps.

****update Thursday 9am....Sam had a really rough evening yesterday. Her pressures were skyrocketing to 50 (20 is the highest they like to see.) So they put her on steroids, hoping that her body will kick back into processing the csf by itself. She was boarded for surgery today, but Dr Sood wants to wait another day. He doesn't want to rush into anything. I agree. So he's going to wait until tomorrow and see how she does. She's on a new hormone replacement for DHEA, which is a stress hormone produced by the adrenal glands. Boy I can't imagine why her long term stress hormone would be low. But she's on a low dose. Haven't found out about the Growth Hormone yet, but her Thyroid was fine. So she and I are just waiting....Give me a call if you'd like....

Update 3:30 pm Thursday, Sam just had her shunt put back in. She's been going downhill all day and Dr Sood was just not comfortable waiting til tomorrow. He put it in a different spot and hopefully it will not leak. I'll update more tomorrow.

Sunday, January 9, 2005 4:19 AM CST

Well I had a nice update all typed out and then boom, it's gone....Sam is going to spend the night at my sisters tomorrow, since I have to work downtown on Monday. She'll enjoy it, time with baby Calvin and her Aunt Peej (Caitlin used to call her PJ but her name is Jenni). We're hoping to go to dinner on Monday night with her best school friend Carly and her best neighborhood friend Rachel. Two of the coolest girls I know. I think she'll enjoy that, as she's going in for surgery on Tuesday. She's also going to work on her homework.

I'm a little bit nervous about the ICP monitor. When they put one in in December she had 2 "periods of brisk bleeding." He also said this surgery wouldn't be as painful as the last one. I hope that's true. This will be her 13th surgery. There are lots of kids who have had dozens of revisions on their shunts. What a nightmare.

Pray for Emerald who is doing well at Johns Hopkins and is now in a regular room!!!! They took out 90f her tumor. That is just great news.

Friday, January 7, 2005 9:49 PM CST

Boy, this has been a long week. I started working at the Detroit Auto Show, which is a job I work every year for about 2 weeks. The extra money is nice. Sam had 3 doctor appts this week. She is having surgery on Tuesday. They will tie off her shunt and remove the catheter and repair the leak, again. Then they will put in an ICP monitor, which is a probe that goes into her brain to monitor her ICP's or Inter Cranial Pressure. This surgery is actually quite simple, but it leaves a horrible looking incision in her head, usually about 3 stitches. It's really not painful for her, as the top of her head is numb from the craniotomy. And they just stick the probe in the burr hole left in her skull from her craniotomy. If her pressures remain normal and she doesn't get any headaches, they'll remove the shunt. If her pressures rise, then they will hook the shunt back up. Dr Sood also said that he would do another MRI later in the summer to make sure the cyst hasn't grown back. Sam seemed relieved about that. It seems like a lot of kids have an easier time, the more MRI's they get; she's the opposite, she has to be sedated now.

I talked to her teacher today. They are going to put her on a plan called 504. I'm not exactly sure what that means, I posted a message on my "Educating Brain Tumor Kids" message board today to get some more info. I think it protects her from certain things and her absences can't be held against her or something like that.

We also saw the endocrinologist this week. Sam has grown 1.4 cms and has lost one pound since Sept. He re-ran all her hormones, growth hormone, thyroid and I'm not sure what else. He gave me the impression he's thinking of starting up the growth hormone again, once we get all these shunt issues taken care of. He seems to think the growth hormone will stimulate her appetite. She's just too damn skinny.

I feel completely overwhelmed today. I have to work all weekend, then I accidently signed up to work Monday at the auto show from 7am to 2pm. Since I'm working mids the night before and don't get off til 7am, I haven't quite figured out how I'm going to get downtown instantly. I feel like there's so much going on that I have no control over. Things at home, getting Nik back to school.......I have been telling Samantha that she should be positive. She tells me that "you be positive, I'll be realistic." She sounds very jaded. She'll probably be in the hospital for about 4-5 days. She'll have at least 2 surgeries. All this because of a little cyst in her brain. It's unbelievable.

Tuesday, January 4, 2005 8:08 PM CST

Sam wasn't able to go to school today, she's been nauseated all day. She thinks it's the laxative I gave her, which by the way, seems to be working pretty well. She got her hair cut last night, it looks so cute. She has really thin hair and the shorter haircut makes it look thicker.

Tomorrow, we'll be braving the latest snow storm to hit Michigan to go downtown. Hopefully we'll be able to figure something out, she can't keep going like this.

Monday, January 3, 2005 6:57 PM CST

Sam has been having problems all weekend, her back keeps blowing up and she has headaches if she's upright for too long. Then the bottom of her incision started turning red and a scab formed. I called and talked to one of the neuro surgeons and she said as Sam wasn't having any fever or neck pain or anything that indicated meningitis, just to wait until Wed, when Dr Sood gets back in town. Well, when we woke up today, her back seemed really swollen and the red thing was getting redder. So I packed up her and Nik and took them downtown. They did an x-ray and noticed that she is filled, from stem to stern, with well, let's just say her colon is completely filled and she has 2 huge air pockets. She's always been constipated and has had this problem her whole life. So I started her on a laxative today, she takes Colace everyday, but for some reason it's stopped working. But that doesn't really account for the swelling. She looked at her back and said it looked like one of the internal stitches was working itself out. She dug around a bit (which Sammi didn't dig) and took the stitch out. I wonder if that's why it's leaking, if that stitch was holding something in. So we'll go back on Wed to see Dr Sood and maybe he'll decide to turn off her shunt, put in an EVD drain and see if we can wean her from the shunt. I think it's about our last option.

Her friend Simonne, who has cystic fibrosis, is back in the hospital, sharing a room with her brother Shane, who also has cystic fibrosis. So we went to the hospital to visit them and had a good time. Sam was so happy to see her and insists that if she has to go in the hospital this week, she doesn't really care because Simonne will be there. I haven't seen her that happy in a long time. She's going to try and go to school tomorrow but we'll see.

Thursday, December 30, 2004 11:16 PM CST

I ended up not having to take Sammi downtown today. Chris called the neurosurgery nurse and they talked for a while. She then called Dr Sood and he said if we can hold off, to bring her downtown first thing on Wednesday morning (he's out of town until then) and he'll start checking for shunt malfunction. It will entail at least x-rays and probably some blood work, hopefully no spinal tap. Then he'll decide what to do.

As I was driving to work, Chris called and said Sam came home from her friends house and Alec had accidently kicked her in the back. Her back started swelling, not in one concentrated area like before, but all over, on the right side of her back, opposite the shunt. She said she felt pressure in her head. So Chris made her lay down and wouldn't let her get up. It started getting better. Hopefully we can wait until Wednesday. But she's supposed to go back to school on Monday and I don't want her to miss anymore school.

Other than that, there's not much going on. I'm off for the weekend and we're going to go visit Emerald and her mom. Other than that, I don't think we have any plans. This will probably be my last entry until Monday, unless we get a computer this weekend.

Wednesday, December 29, 2004 7:40 PM CST

Well, Sam has been feeling really good lately, kind of tired but no headaches or anything. The only funky thing is that she's been unable to bend over to tie or untie her shoes. I called the NS nurse yesterday and she said just to keep an eye on it, as it wasn't swollen. We then set up an appt to see Dr Sood on Jan 24, 4pm. She's supposed to see Dr Cara on Jan 6, 10am. (those dates and times are for me so I don't forget!!!) She noticed this morning that her back is swollen again. But she didn't tell me because she wanted to go sledding today. We went sledding, little hills, she had a lot of fun. Then when I came downstairs from my pre-work nap, Chris told me her "bulge" is back and she's had a headache all day. She hasn't had a headache in about a week. God forbid we get our hopes up, hence my dismal attitude. So tomorrow I'll be taking her downtown.

I would like to publicly thank my friend Suzanne who always makes me laugh, no matter what.

Also, we're going to visit Kim and her daughter Emerald this weekend to give them a little going away gift. Emerald is having surgery at Johns Hopkins, they want to see how much tumor they can get rid of. Please pray for her. She's a very sweet girl.

Saturday, December 25, 2004 7:58 PM CST

Boy, were the kids excited this morning. I got off work a bit early, and expected to have to wake the kids up when I got home. I drove into the driveway, and I noticed the kids had tied the curtains open so they could see outside. I walked into the house and suddenly I hear the pitter patter of 4 little feet upstairs, then running down the hall, then down the stairs. They were so fricking excited. Then they had to wake up Nik and Caitlin, which was no easy task. Finally they all came down and the opening began. Everyone was very happy and we had a nice time. Then I went to bed. Sometime during the day, Alec came up to tell me it was the best Christmas ever. I agreed. (except for the working the whole weekend part).

Sam has been feeling really good. No headaches in about 4 days. Tomorrow we're going with Chris' family to eat at a restaurant in Plymouth. And I think on Monday, we're going to Windsor to spend the day with my moms family and my sister Jenni and her adorable son Cal will be there. I got the rest of my china, I've been collecting for the last 3 Christmas' and a stereo and Nik and Cait got me the new Nirvana collection, 3 CD's and a DVD. All in all we had a good day.

Friday, December 24, 2004 8:34 PM CST

Sam's been feeling pretty good lately. We've been busy getting ready for Christmas. Unfortunately, I have to work all weekend. I hope everyone has a Merry Christmas and for the Caringbridge families that have lost a child this year, our prayer is for peace.

Tuesday, December 21, 2004 0:01 AM CST

First of all, we had a really nice time in Chicago. I got a lot of shopping done. Sam had a good time, altho she was tired a lot and we had to rest quite a few times. She still had some headaches but they seemed to be better. We went to see the 2 doctors at U of M today. They asked for a very detailed history and the neurologist thinks that possibly she's having migraines. But I honestly don't think they're migraines. She normally doesn't have nausea, never vomiting...light doesn't bother her eyes, none of the migraine stuff. Nik used to get migraines and he would vomit and cry and lie in a dark room and sleep for 12 hours.

So anyway, the ns we saw is going to write a letter to Dr Sood suggesting that we try and start over with the shunt. She suspects she may not need it based solely on the fact she's been doing worse ever since she got the shunt in. Obviously, she's come in in the middle of this so she can't be certain. She is going to suggest to him that he hospitalize her for a week, turn off her shunt and externalize her (EVD drain, so she can still drain if she needs to). That way we can keep track of her pressures with the shunt turned off. I don't know...this whole thing is confusing. They suggested increasing her Elavil, which helps her sleep thru the night but also helps with headaches. They said that we need to test all her hormones again and get an EKG, because you have to rule out some QT waves or something before we increase the Elavil. They also want her to see a neuro-opthamalogist to rule out any swelling of her optic nerve and there was one more thing but I can't remember.

She said that she and Dr Sood talk quite often. Actually, the reason we got this second opinion was back in September when Sam started feeling crappy again, her endocrinologist suggested it. It took this long to get the appt approved and all that stuff. I hope Dr Sood doesn't think we're going behind his back or anything. I'm sure he understands our frustration over her not feeling well. I left a message for him to call so that we can discuss this with him. It's very frustrating. But we're going to enjoy the next couple of weeks, with Christmas coming and Nik being home.....

Friday, December 17, 2004 1:21 AM CST

Well, Sammi didn't make it to school today. She was so excited about an assembly they had. She was worried on Tuesday when we went downtown to get her sutures out, that she was missing the assembly. Then we found out on Wed that it was on Thursday. She woke up with a horrible headache, when I walked in the door, she was crying. She went back to bed with me and she slept til 11am. Why is she always sleeping so much??? Then tonight, I had to run Nik home from my work (long involved stupid story) and I went in the house to give the kids another good-bye kiss. Sam asked me what she was going to do if she had another headache. I told her she could stay home. She started bawling and said she's missing everything. She was really upset she missed the assembly.

Please pray that her headaches go away. We're going to Chicago this weekend to do some shopping and I want to take her to the play at the American Girl Store. We've never seen it and she has always wanted to. Please God, just let Sam have this weekend. We're going to U of M on Monday for a second opinion. I hope we get some good info.

Wednesday, December 15, 2004 9:09 PM CST

Ok, I'm feeling better now. Sam went to school for a full day today and got her sutures out yesterday and seems to be feeling ok. We went on a field trip today and she had a good time, we saw Polar Express on Imax in 3-D. It was soooo awesome. I think we're going to Chicago this weekend for some last minute shopping....( all my shopping this year will be last minute!!!!!)

Saturday, December 11, 2004 10:44 PM CST

Sam finally seems to be feeling better. She, Chris and Alec went to Nana's and they're spending the night, since I'm working this weekend.

When Sam was in the hospital last week, she went thru a really rough time. She has allergies to Sulfa, Zithromax and Reglan. Well, now she's also allergic to morphine and Tegadern, a dressing that she's had sensitivities to before. This time she got a big blister on her back. I decided in the hospital not to say "hopefully she'll be better now", because honestly I think she is going to have problems forever. I'm not being defeatist; nor is my glass half empty. Everything she's gone thru has been odd, she's always having reactions to meds, she pukes, her leak should have been cleared up by the blood patches they gave her. They said 97 percent of them are closed with the patches. Hers took surgery, painful surgery. The Rathke's Cyst which caused all these problems in rarely symptomatic in children. The only time she gets discouraged is when she's puking. I took her to a little thing at school last week and it just broke my heart. Maybe it's just me but it seems like everyone is leaving her behind. They're all so big and she's not. I can tell she feels very uncomfortable at school. I don't think it's anyones fault. It's a combination of a lot of things. It sux. I am hopeful she'll go back to school on Monday and hopefully she'll be feeling better. I could tell the teachers miss her. All she wants is to be a normal 11 year old and she feels anything but normal. I don't think that parents with "normal" children can understand what she and we are going thru. Sometimes I don't even understand it.

Yes, we are lucky. She didn't have cancer, she didn't need chemo or radiation or any of the horrible things that so many of our new friends have had to deal with. But she has a shunt, a shunt which comes with a whole host of problems, most of which we have absolutely no control over. Infections, malfunctions, it's all crap. She had to have major brain surgery and altho she came thru it great, God only knows what affect that has on her or could have in the future. When they put in the ICP monitor a few weeks ago, she had 2 major bleeding episodes. She had no bleeding the first one they put in, last June. It's just scary. Am I whining? Am I complaining? No, I'm just telling it like it is.

***Caitlin got really sick on Tues, I looked down her throat on Wed and it was full of pus. So I told Chris I was going to have to take her to the hospital. Alec just started bawling, saying he was sick of everyone in our family being sick all the time. He has been having a real hard time with all of this. He is still afraid Sam is going to die. And Nik called me one night last week and said he was going to quit school, to come home and help me with Samantha. I told him I'd kill him first. But he's worried about her too,

Oh and one more thing, Sam has a resting spot all set up in the principals office. We bought her a workout mat, which is really thick, and she'll take her pillow, signed by her classmates from last year and a really warm blankie. So that's settled. Thank you to the principal and school nurse for coming thru in a pinch.

Tuesday, December 7, 2004 6:15 PM CST

Sam came home today. We were ready to walk out the door at about noon when she puked. So we stuck around for another 90 mins to make sure she wasn't getting sick again and then we left. I went to bed and slept for 3 hours and now I'm at work. This should take care of the leak. They told us she needs a place to rest at school, so I called the school and was advised they really don't have anything. So I have to figure something out by Thursday.

Monday, December 6, 2004 8:27 AM CST

We're still here....hopefully going home today. She hasn't been up yet and she's not looking forward to getting up for the first time in 3 days. I'll let you know how it goes. Well she got up to use the bathroom but she's in a lot of pain. Dr Sood will be down later this afternoon and hopefully tell us we can go home.

Sunday, December 5, 2004 12:33 AM CST

Sam gave us a bit of a scare last night, with a fever but it's gone today and all her blood work came back normal so we should be home tomorrow.

Saturday, December 4, 2004 9:43 AM CST

Sam's doing ok....she's in a lot more pain from this surgery than usual. He fixed the leak with collagen, some stitches and something else and we should be going home tomorrow. Added to Sammi's list of allergies is now....morphine. That girl has more allergies....But she's ok and looking forward to going home. We got a really nice message on my phone yesterday...SAMMI IS STUDENT OF THE MONTH IN HER CLASS....the whole class was cheering, it made me cry. Thank you to everyone for their thoughts.

Friday, December 3, 2004 0:01 AM CST

Sam goes in tomorrow for the surgery, we have to be there at 2pm. Which really sux because that means she can't eat all freaking day. I told her to try and stay up late so she can sleep til 11am or noon so that she's not sitting there all day, dying of starvation. Why would they schedule a child with DI so late? But she can drink water, juice or pop until 1pm, so I guess that's not too bad.

Wednesday, December 1, 2004 11:26 PM CST

Well, I'll try this again. Lost my first entry. Sam is having surgery on Friday. They're going to try and stitch up the leak in her spine. It's been causing her problems all week, nausea, headaches and her back keeps blowing up. She came home sick from school on Monday, crying because she was so nauseated. So I took her to see Dr Sood that afternoon and he said to keep track of her symptoms for a week and call him back. Monday night/Tuesday morning she was nauseated all night and slept for 13 hours. When we got up, she had a headache from standing. And when I had her sit up for 5 minutes, the swelling on her back increased. Then she laid down, she felt better, the swelling went down. We tried it again, same thing. I told Chris there's no way we can do this for a week. So I called Dr Sood back on Tues and left him a message. They called back this am and said they were boarding her for Friday, for surgical repair of the leak. Today it seemed like she was feeling a bit better. She did some homework and may try to go to school tomorrow.

Please pray for Emerald who may be going to Johns Hopkins for treatment and for Rayanne, a cute little girl who lives in Oregon who is not doing well. Her website is www.caringbridge.org/ca/rayanne. Emeralds is down below. Oh and Beth is having her MRI's this weekend at Childrens.

Monday, November 29, 2004 0:18 AM CST

Well, Sam started complaining of being tired again today and then we noticed her fluid pocket has started swelling again. This is kind of frustrating, but from what I've read, these fluid pockets like to hang around. I guess in the big scheme of things, this really isn't a big deal, except she's still not feeling well, and that's a big deal. Please pray for our friend Beth who is having some bloodwork done tomorrow for hormone levels and for Emerald who had a bad MRI.

Saturday, November 27, 2004 11:37 PM CST

Today was a quiet day, for me anyway. I worked last night, went to Nana's house to pick Sam up at about 7:15 and then made the long trek home. I slept til 4:30. Chris made really good pork chops for dinner and here I am at work again.....The kids went bowling and did pretty well. Alec is working on walking and releasing the ball and then stopping. He likes to stop first and think about what he's doing, then throw the ball. Caitlin is spending the weekend in Novi with all her buddies and Nik is home but going back to school tomorrow. Sam says whenever she gets up from sitting or laying position now, her head hurts. I hope it's just an adjustment thing. I forgot to mention that when Sam had her ICP monitor put in, Dr Sood came out and said that they were going to have to do a CT scan because she bled more than she should have and they had to make sure she didn't have a blood clot forming. That was kind of scary and reminded me that there is no such thing as a small surgery or routine surgery. Luckily the CT scan was clear and there was no blood clot.

Friday, November 26, 2004 5:59 PM CST

Sammi got home on Wed and we were able to celebrate Thanksgiving with our family. Dr Sood said her pressures were all good, the only thing he thinks was going on was her spinal leak was lowering her pressure and causing the tiredness. So he put in another blood patch and it seems to really have helped. Her fluid pocket hasn't gotten bigger in a couple days, it usually fluctuated during the day. But today she's complaining of pressure headaches. She says they're not supposed to put needles in your spine when you have an LP shunt. I hope she's wrong.

Wednesday, November 24, 2004 12:05 AM CST

I'm pretty sure we're coming home tonight. Right now we're in the library on the computers. I'm going to keep her out of bed for an hour and see how her pressures do. They seem a bit low when she's walking around, but I don't think it's anything to worry about. Nik is coming home tonight, HOORAY!!!!!!

****Please pray for our friend Emerald who got bad news on her MRI from the other day. WE LOVE YOU EMERALD AND KIM.

Monday, November 22, 2004 12:19 AM CST

Ahhhhhhhh....the pleasure of being in the hospital for a holiday.....It's about to be ours. Sam is going to have another ICP monitor put in, to check her pressures as she's still feeling like crap. Hopefully we'll get out by Thursday, we go in tomorrow. Last time I think it was a 2 day thing. God, I hope so.

Thursday, November 18, 2004 8:46 PM CST

We had Sammi's conference tonight, She's on the honor roll. She even got a B in math. We're very proud of her. She seems happier about school, it's not great yet but she seems hopeful about the future. She had a pressure headache today, that's what she called it. She's still really tired. I think I'm going to call her endo tomorrow and see if he thinks she needs any blood work done. But I'm so proud of her for doing so well in school after she missed almost half of a year last year. WAY TO GO SAMMI!!!

Saturday, November 13, 2004 10:49 AM CST

Sam has been feeling ok this week. She missed 2.5 days of school last week due to nausea and fatigue. I took her to the neurosurgery clinic and the nurse wasn't sure of what to make of her, so she called Dr Sood in to take a look at her. Dr Sood says it's possibly a shunt malfunction but he wanted to wait a week and see what happens. She did go to school yesterday, but it was only a half day. Her fluid pocket was really big yesterday and really hard. It's the biggest I've seen it in weeks but by the time we went to bed, it was small again. No one seems concerned about this. It's actually her spinal fluid leaking into her back. Maybe she just has a little virus. She's sleeping a lot again.

I'm going back to midnights on Wed. I'm glad that I won't have to worry about picking her up when she's sick or the kids not getting picked up after school. 3 of Caitlins friends helped us out with that. But sometimes people have stuff come up and the kids got left at school a few times and Alec actually got a ride home once and we didn't know he was getting a ride and I was 20 miles away trying to figure out where he was. So we won't have to worry about that anymore.


****Her electrolytes came back normal so whatever she's got, it's not a problem with the DI. We're also taking her to U of M for a second opinion on the shunt on Dec 20. She's seeing a neurosurgeon and a neurologist/oncologist. Maybe the neurologist can help with the headaches. That would be great.

Saturday, October 30, 2004 11:48 AM CDT

Sammi's MRI came back clear. In fact, we ran into Dr. Cara, her endocrinologist, at the gift shop and he said her pituitary gland looked awesome. Her need for desmopressin is on the way up again, she's taking .1 mgs about 3 times a day. She was down to .05 twice a day. She still only weighs 58 lbs but she looks good, still not feeling great all the time tho. Headachy, nauseated. We have an appt at University of Michigan Brain Tumor center on Dec 20 for a second opinion on her shunt. We're seeing a Dr Karen Maraszko, I've heard of her, I think she does a lot of work with Chiari Malformations. Sam has one but I think it's just from her shunt pulling her brain down her spine. Doesn't that sound gross????

Wednesday, October 27, 2004 4:50 PM CDT

Sam and Chris are at Childrens getting her first post-op MRI, well I guess it's her second. They did one the day after her surgery. I'm sure it'll be clear, it's just the waiting is horrid. Chris is going to bring home the films tonight so hopefully we'll get some idea today or tomorrow. Sam's still having headaches, but maybe it's just something she's going to have to live with.

We went to Cedar Point this weekend. Sam got to ride most of the coasters, but there were a few that I said "no" to. She wasn't happy but I'm sure, deep down, she realizes it's for her own good. We had a really good time. Even Alec got into the rides, and that's really not like him. He's 10 now, growing up.

Sam is still having some difficulty with Daniels death, but we talk about him a lot, and we've driven by his grave, it's in a cemetary right by our home so we'll be able to visit often. I wish I had known him, it sounds like he was a great kid.

Saturday, October 16, 2004 5:02 PM CDT

Sam's doing ok, she's still not feeling well. Headaches, being tired. But her MRI and neurosurgeons appts are in 2 weeks, so we're gonna try and hold out for that. Work is just fricking killing me. It's taking up all my time. I work 12 hour shifts and when I'm not working, I'm trying to recovery. I've been getting migraines. Caitlin thinks it's stress. She's doing better in school, she seems happier.

Friday, October 8, 2004 9:36 AM CDT

Sammi's friend Daniel died yesterday at 5:40pm. He just couldn't fight anymore. The school is having the social worker come in to talk to the kids, Sam is pretty upset. Her and Daniel were both being home schooled by their teacher most of last year and they were both in the hospital for most of the summer. I think she felt a special bond with him, even tho she hadn't seen him for a while. Please pray for his family.

We have gotten the go ahead for a second opinion at University of Michigan. However, you have to actually apply and be accepted to go there. So that's what we're waiting for. I've heard of the neurosurgeon there, I think her name is Karen Marasko and I've heard she has cerebral palsy. I can't imagine getting thru medical school with a handicap like that, God bless her. Sam is still having headaches, and some weakness and shortness of breath when she's in gym. The other day they walked 2 blocks to school and she said she was short of breath. Her sodium was a bit high at 148 but her growth hormone is up to 109 so for now....NO MORE SHOTS!!!!! She's pretty happy about that.

Monday, October 4, 2004 11:08 AM CDT

Dr Cara called today, he's Sam's endocrinologist. We went and saw him on Thursday. He talked to us for about an hour. He says he's a bit concerned about her headaches and nausea returning. He cut her down to .05 of the DDAVP per day, but she's having breakthrough after about 12 hours, so we're giving her that dose twice a day. Breakthrough is when she starts peeing like crazy and can't leave the bathroom without drinking out of the faucet. Then she knows she needs her meds. All the labs he drew were normal so there's no shunt infection, nothing wrong with her thyroid. He says if her headaches don't get better, he'll rush her thru to MRI instead of waiting til the end of the month. He also wants her to see a neurosurgeon at Henry Ford Hospital downtown. Just to make sure the shunt is what she needs. So as usual, we have nothing new. We're thinking about having a big party for her, to help her adjust to school, inviting the whole 6th grade. Sounds like fun!!!!!?

Please pray for her friend Daniel who is still in PICU at U of M hospital.

Wednesday, September 29, 2004 0:03 AM CDT

Sam's sodium came back low normal, so that doesn't account for her headaches and nausea. I am taking her to Childrens on Thursday to see the endo. He'll check her hormones and also they'll draw some blood for CBC and to make sure she doesn't have an infection in her shunt. She's convinced her cyst has grown back. I told her I really didn't think so. Her DDAVP usage has gone from 2 x's a day to once every day and a half. And she's still growing, over an inch since she got home from the hospital. She's really upset, had to be picked up early today due to bad headache. MRI should be in a couple weeks. Oy Vey!!!!

Sunday, September 26, 2004 10:49 PM CDT

I am up north on my yearly Critical Incident Stress Management class. It's a soul refresher for me and this year I need it more than ever. It's beautiful up here, there are woods to walk in and a lake and the stars are amazing. Sam has been missing school again, nausea and headaches are the culprit. Of course, the first thing that enters my mind is that the cyst is back. But maybe it's just a shunt thing. I've asked our doctor to get us a referral to University of Michigan Neurosurgery Dept, to just make sure we're all on the same page on this shunt thing. Her MRI should be in a few weeks. We finally go see the endo on Thursday. I want what we all want, I want my child back the way she was and I want her to be happy in school, not feeling excluded. I don't think it's too much to ask. I'm generally disgusted today.

Monday, September 20, 2004 2:21 PM CDT

Sam is doing great. Caitlin had surgery this morning to remove some of the hardware from her collarbone, she did great but he was not able to remove all of it, because it broke. So it will be monitored to make sure it's not slipping out.

Please pray for Sammi's friend Daniel, who had a bone marrow transplant and is now fighting host vs. graft disease. He's really been thru a lot and is still going thru a rough time. His website is www.carepages.org and his page is called danielspage100. I think you have to get a name and password but it's no big deal. I know he would like to hear from you.

Friday, September 10, 2004 12:52 AM CDT

Sam is doing really well. She had a little setback yesterday. From time to time she can go 24 hours without her hormone, but the other day it kind of caught her at night and she was up all night peeing and drinking. So she felt pretty cruddy and didn't go to school yesterday. Other than that, she's been great. The fluid pocket in her back is still there, goes up and down. Sometimes you can't see it, other times it looks like a golf ball coming out of her back. She has grown too, at least from our measurements at home. We were supposed to see the endocrinologist today, but he had an emergency and cancelled all his appts, so we can't go til next Thursday. She keeps asking me, if she's growing, will she need the shots. I told her I had no idea. But she's happy and healthy and what else could we ask for.

Nik is back at school and Caitlin is in her Junior year of high school, she's the photo editor for the school newspaper and is having fun with that. Alec is settling into 4th grade and I'm settling back into work. It's like I never left, which is good but a little scary. I'm not sure I like getting up at 5:30 am but I do like sleeping at night. All in all, everything is getting back to normal at our house, whatever that is!!!!

Saturday, September 4, 2004 3:20 PM CDT

Sam is doing pretty well, she's getting ready for school and getting used to mommy not always being home, as I returned to work yesterday. We're getting the feeling that her DDAVP requirements are slowing down, but we're trying not to get our hopes up. Some DI patients get their hormones back within a year after surgery. We're hoping she is one of the lucky ones.

Wednesday, September 1, 2004 6:50 PM CDT

We just returned from our vacation, short as it was. Sam got out of the hospital on Sunday and we promptly went up north. Of course our van pooped out on us about 60 miles from our destination so we had to buy a new one.

Sam is feeling ok, kind of tired I think from the infection. Turns out it was pretty nasty and she was real close to going into septic shock. The things you find out when you request a copy of medical records!!!! She's ready for school next week and excited about starting.

I go back to work on Friday, I'm kind of nervous but excited to be back among the living.

Thursday, August 26, 2004 10:34 AM CDT

Sam's broviac was infected, with gram negative bacteria, which I think means it can live without oxygen. So, they've narrowed the antiobiotic they need and we'll be in here til it's gone. She's doing pretty well, seems kind of tired today tho.

Wednesday, August 25, 2004 7:48 AM CDT

****Check your stickers and labels when you're at the hospital****

Sam was admitted last night, they suspect a broviac infection. Whats funny (if anything could be considered funny) is that her appt to have them take it out was today. On Monday she spiked a fever of 102.7 but we had her cbc and electrolytes checked by our doctors office and it all came back normal so she figured it was just a run of the mill virus. But last night she started complaining of her legs hurting and then she started shaking like crazy. Her temp went from 99.7 to 104.2 in about 75 minutes. So I brought her to the ER and they drew labs for blood cultures from her broviac and from a vein. Then they proceeded to get her stickers mixed up with 3 other people. Needless to say, after they gave her the antibiotic for 30 mins, they came down and said they'd have to re-draw the labs. Seems to me that the antiobiotics will probably kill whatever bacteria may have been there. So we may never know, or maybe it's her shunt.

If you have a child in the hospital, always check the labels or stickers that they're putting on your childs blood. YOU CAN NEVER EVER BE TOO CAREFUL!!! That's my helpful advice for the day. We should only be in here for a few days (RIGGGGGGHT!!!!!) We're supposed to be leaving for vacation on Saturday. This sux.


*****I go back to work on Friday, Sept 3. I'll be part of Bravo platoon, on days. Days sux. But it's a job, right? Sam got her broviac out, she did really well and I promised to buy her a chameleon next week. I think she's happy.

Saturday, August 21, 2004 2:50 PM CDT

Sam went to Nana's this weekend with Chris and they are fishing. Alec and I stayed home and so far we've been shopping and now we're cleaning. Well, I'm cleaning. Not much new is going on which is always good news.

***Sunday**** Chris just called, Sam has started vomiting and is sleepy and has a headache. I just have a bad feeling about this. It's too good to be true that she feel good and be back to normal. I try not to look at our cup as half empty but sometimes it's just hard. Please pray that this is just the flu. Even if it's just the flu, it plays havoc with the systems of people with DI.

Tuesday, August 17, 2004 8:36 PM CDT

Sorry it's been a while since my last update. We've been kind of busy since we got back from Chicago. Sam hasn't spent one night at home, she's been at Carly's, Aunt Ruthies and Nanas. She'll be home tomorrow, as we have an appt with the endo on Thursday. I took Caitlin to see Ira today (her ortho) and he said her pin is broken so they need to take it out. But she is completely healed also. She'll be having her surgery sometime in September.

Sam's been doing great with all her meds, and dressing changes and flushes on her broviac. Our appt to consider taking that out is Aug 25. So hopefully we can get that out before school starts.

When we went to see Dr Sood last week, it was impressed upon me again what a good thing it was we did this surgery. I got the distinct impression that right after he did it he regretted it. I don't know why and obviously I have no way of knowing what he was thinking. But he seemed so happy at how well she's doing, that I could tell this is one of those cases that could have gone terribly wrong and it went great. We are very lucky. Oh and I asked him about getting a second opinion on the pathology and he said that would be a good idea, but that even if it's a craniopharyngioma, the treatment (none so far) would be the same. But we'll do it just to make sure.

She gets tired easily and seems a bit apprehensive about school but that's normal. I for one, cannot wait to get life back to normal. Not to jinx myself, but there's a good chance I'll be going back to work soon. Whew.....

Wednesday, August 11, 2004 8:16 AM CDT

We are getting ready to go to Chicago tomorrow. Lots of laundry to do today, and packing. Sammi is feeling really good, except for constipation, which she has battled her whole life. I don't think she's drinking enough, due to the DDAVP, so I'm not going to make her drink, but just remind her a few times during the day. I have a piece of glass stuck in my foot, so I'm not real thrilled about that. Other than that, there's not much going on. And that's a good thing.

Monday, August 9, 2004 6:48 PM CDT

We went to see Dr Sood today, he was so happy with the way Sam is doing and so happy that we got the cyst out with out anymore hormone deficiencies than we have. She will have a followup MRI in about 2 months. She sees the endocrinologist next week. She has to see general surgery to get her broviac out. Hopefully that will be before school starts. She can't participate in gym until the middle of October. She has a little infection at the very beginning of her incision, by her ear. She has a script for an antibiotic. We measured her height, she hasn't grown at all, so I imagine we'll be back on the growth hormone after our endo visit, unless they have some sort of no growth hormone for a year, like they do for tumors. She's doing awesome and we're so looking forward to our trip to Chicago on Thursday.

Sunday, August 8, 2004 4:26 PM CDT

We drove to pick up Alec and Sam. Alec was getting a little home sick and when we got there, Sam told us she had an open wound on her head from her craniotomy that looked and smelled infected. So we brought her home too. But she was telling me that they had gone out to do some running around and her DDAVP had run out and she had to go to the bathroom. She was waiting in line, with 2 people ahead of her, and knew she wouldn't be able to wait. So she told the 2 people that she had diabetes insipidus and she was wondering if they would let her go ahead of them. Of course, they said yes. How cool is that, she was brave enough to ask that of strangers. Her bravery surprises me every day.

We see the neurosurgeon tomorrow and he'll probably give her an antibiotic. And hopefully she'll be getting her broviac out next week. We're going to Chicago on Thursday to see Caitlins show. We are going to have a blast. I can't wait.

Sunday, August 8, 2004 9:03 AM CDT

Everyone who has a child with a brain tumor or cancer knows what I'm talking about. You are given something, it's taken away. When it's given back to you, you hold on to it for all it's worth, doing anything not to lose it again. As we all know, these things can be taken away again. That's what happened to me yesterday. I lost something that had been given back to me. I will treasure the knowledge that this person has grown up to be a happy, healthy, and beautiful woman. I guess that's all I will have. I will always mourn what could have been and frankly, what should have been. I am heartbroken. We were given a beautiful gift and we all threw it away. All of us.

Saturday, August 7, 2004 8:07 PM CDT

Today has been one of those roller coaster days. The kids, and I mean all the kids, are gone so Chris and I are alone for an entire weekend. I won't go into the bad things, because who wants to dwell on things that are upsetting. But we are having a nice time by ourselves.

We went to Greenfield Village today, and ate in a restaurant that we've never eaten at before. It's based on a tavern in the 1850's and the tables are set for 8 and they seat you with other people. Chris and I had just sat down when the hostess put another couple at our table. We introduced ourselves and it turns out they live in Redford, the twp I got laid off from in April. I broke the first rule of meeting new people (talking about politics) and told them I was glad the twp supervisor that laid us all off got his own little pink notice last week, when he was voted out of office. Turns out they are best friends of a pastor that belongs to the "Critical Incident Stress Management" team that I belong to at work. What are the chances that someone with such close connections would be eating there the same night, the same time, the same table. I'm not sure what it means yet, but I'm sure it means something. So we were very happy to eat dinner with Steve and Angie and very happy to hear about their lovely family.

Sam and Alec are doing well at our neighbors cottage. They'll be home Monday morning. Caitlin is having fun, everytime I call her, she's laughing. And Nik is working so I'm sure he's run into another actor and won't get his autograph for me. arghhhhhhhhhhh

Thursday, August 5, 2004 12:38 AM CDT

We went the the pediatricians today and had her stitches removed, they came out pretty easily after having been in there for 13 days. She had a blood draw to check her electrolytes. SHE WEIGHS 61 1/2 POUNDS, THE MOST SHE'S WEIGHED IN HER ENTIRE LIFE!!!!!!! She's outside playing and having a good time. I'm inside cleaning and not having a good time. Such is life.

Please pray for our friend Emerald and her mom Kim. Emerald is feeling crappy from her chemo and her mom is feeling crappy from Emerald feeling crappy. Leave her a message on her guestbook, link is below.

****Sam is taking a big step tomorrow, she's spending the weekend with our neighbors at their cottage a few hours away. She can flush her own broviac, change her own dressing, give her self her DDAVP and her other meds so she says she's ready. She has promised not to go in the water past her waist. Hopefully we'll get her broviac out next week, it appears the need for it has passed. ****Thanks for calling today, you know who you are.

******one more thing, anyone who knows us, knows we are huge Lord of the Ring fans. Alec and Sam like Legolas, I'm an Aragorn chick myself. Nikolaas calls me tonight and says, "guess who I saw at the restaraunt on Sunday"? I go thru the list of famous people we've run into lately, Darrin McCarty (Red Wings) and Chris Webber (Sacramento Kings) and he says, "No, Viggo Mortenson". Apparently Viggo goes in there often, he must have friends on the Island. I asked Nik if he got his autograph for me or for Sam and Nik said Viggo averted his eyes when Nik looked at him so he didn't want to bug him. WHATEVER!!!!!

Tuesday, August 3, 2004 11:02 PM CDT

Sam had a pretty good day today. We were going to ride our bikes up to Stroh's for some ice cream, but she said her legs hurt too much. We're having her electroylytes checked tomorrow and low potassium can cause aches. Her potassium was low a few times at the hospital. She's eating really well and today had to take her DDAVP early, due to breakthrough thirst and urination. She also had a slight fever tonight before we went to bed but as she says, "It's hot out today". Looks like we're gonna get a break in the weather tomorrow. Her fluid pocket is still there, no real change, but she'll get her stitches out tomorrow.

Please visit the caring bridge site for Celeste, a little girl who died today from her tumor. Her website is www.caringbridge.org/pa/celeste. Her mom has kept an awesome record of her battle and she now has won and is in heaven, with Isaac and Katherine, who also passed within the last 2 weeks. www.caringbridge.org/wa/isaac and www.caringbridge.org/tx/katherinecross.

On a lighter note, the township supervisor who laid off all dispatchers and 2 police officers from Redford Twp, Mi was soundly defeated in the primary today. Even if I never go back to work there, I am happy for the people that live there, hopefully the new supervisor will have the guts to do whatever it takes to bring the police department back up to full strength. Apparently people in Redford are a bit more concerned about the police protection than he gave them credit for.

Monday, August 2, 2004 10:09 PM CDT

Sam is feeling pretty good. She woke up with a nose bleed today, not on the side she's been using for the DDAVP. But other than that, she's doing well. Her back still has a fluid pocket on it. We have appt to see Dr Sood on Monday and hopefully it'll be gone by then. We go see our pediatrician on Wed to get those stitches out and draw some blood to check her electrolytes. And we see the endo on Aug 19. Nik sees his opthamalogist on Aug 10 and Caitlin sees the ortho guy some time in August, I can't remember when. Next Thursday, Nikolaas, Samantha, Carly and I are going to Chicago to see Caitlins show. She's the producer of the entire thing, along with another girl. I'm so proud of her, she's going to be an amazing woman when she grows up. She really misses us, I think. We miss her.

Saturday, July 31, 2004 10:55 PM CDT

Well, Alec and I got up today, went and got a sign for Sammi's return home and we got the phone call. She's not coming home yet. Even tho she was released by neurosurgery 2 days ago and endocrinology today, the ns that came to see her today wasn't comfortable letting her leave with the ever present fluid pocket on her back. It hasn't gotten any better and sometimes gets worse, depending on if she's retaining fluid from the DI. So we took the sign down and went to visit her. Thanks to the Detroit Tigers, it took us an hour to get there.

But last night, we had a ton of fun. We got 4 suite tickets to see the Detroit Shock, 2003 champions of the WNBA. They gave us a pass from the hospital and we drove to Auburn Hills at the Palace. We went with Alec and Sam's friend Megan. Sam was laughing and had an awesome time. She said she felt weird being out of the hospital.

Also yesterday, she got a great present. There is a professional artist that goes to the hospital once a month to draw portraits. He drew Samantha. It took him almost an hour and a half. He said it was one of his best he's done at the hospital. It's beautiful. We're going to have it framed. I'm going to see if I can get it online somehow.


*****Update Sunday Aug 1***** Sammi's coming home today. We can't wait.

Wednesday, July 28, 2004 8:58 AM CDT

Well they just took off Sam's TPN and her Broviac is hep-locked so hopefully we're getting closer to getting home. She still needs to work on her eating and she still has a small fluid pocket on her back from the leaking LP shunt. Her hair is growing back and you can hardly see the scar anymore. Her DDAVP control is much better and we're still waiting to get the results of her thyroid levels. And they should be checking her cortisol as soon as she's weaned from the decadron. She's still a bit bruised and she weighed 54.4 lbs yesterday.

They just came in and said she can drink 325 ml per 8 hour shift. This girls been drinking at least 60 ounces a day. 325 ml is about 8 or 9 ounces. This is going to be a long day. It has something to do with the DDAVP, but I don't quite understand it. Time to call the endocrinologist again!!!!

Tuesday, July 27, 2004 9:26 AM CDT

Sam is doing ok, still trying to get the DDAVP, the ADH replacement correct. Last night she slept all night w/o urinating so I hope we're on the right track. She also ate a bit yesterday. I'm sure we'll be home this week, just not sure what day.

Sunday, July 25, 2004 10:04 AM CDT

I'd like to tell a little story about Samantha. When she was in second grade, they had a field day at her school at the end of the year. One of the last events was a quarter mile run. Samantha lined up with everyone and started running. She was wearing a bandana on her head and it came off. She stopped to pick it up, and therefore started the race in last place. I watched her run around the field, never giving up, trying her hardest. She ran and ran and ended up in 3rd place, only beat by 2 boys, one who runs with his dad everyday. That was when I realized what a determined young daughter I had. She doesn't give up.


Chris just called. Our neurosurgeon came into Sam's room this morning and saw that Sam was still sleeping, (she's a late sleeper) and that she had started the peeing, shaking vomiting thing at like 4am this morning. Of course, she's sleeping, she was up from 4-8 am. He asked Chris out into the hall and told Chris that he felt Sam was possibly doing this to get attention. He wanted to stagger her DDAVP so that she wouldn't know when she was getting it. He said she could tell when it was getting close to medicine time and maybe subconciously she needed more attention and so she starts shaking, vomiting and urinating like crazy. She doesn't know what time it is, she isn't wearing her glasses and can't see that far. I am so pissed I can't even see straight. I don't even know where to start in defending my daughter so I don't think I will. I will say that I can't imagine a need for attention waking up a girl at 4am with 700 ml of urine coming out of her bladder with minimal iv input. A need for attention does not make your kidneys put out urine that looks like water. Then the endocrinologist came in and said of course it's the medicine. They're going to start her on the nose spray tonight and that usually works better.

She didn't get to go to camp this summer, she's gone for the last 4 years and looks forward to it every fricking year. We were on our way to the train station, her puking, because she's waiting 2 years to see her friend who moved to Texas and we had to turn around. She has lost friends, missed out on most of her 5th grade year and has gone from being an active, happy girl to an inactive, sometimes depressed and moody girl. She got plenty of attention before all this happened, just ask Nikolaas and Caitlin. They had the usual complaint that the "little kids" got all the attention. She has growth hormone deficiency, that's not fricking psychological. Is she putting out too much CSF because of her need for attention??? Maybe 5 surgeries in the last month wasn't enough for her. Please feel free to substitute the real "f" word where I typed fricking. That's how I feel. I will type the word bullshit, that's what this is.

Saturday, July 24, 2004 11:22 PM CDT

Sam is doing ok, still having some minor problems getting the dosage right on the DDAVP, which replaces the ADH hormone her pituitary gland no long produces. Her face is green today, from bruising and you can always tell what side she slept on by what eye is swollen. Last night she slept on her left side. Chris is staying with her for the weekend, I picked up Alec at Aunt Ruthie and Uncle Mark's house. We only stayed at the hospital for about an hour. Alec has started having a hard time being there. His sister looks sick still and he's been worried about her. I told him today she's going to be ok. I'm not sure if he believes me or not.

Kim and Emerald came to visit today, after Alec and I left. Emerald told her mom that Sam was lucky, as her cyst was benign. I agree.

Thursday, July 22, 2004 9:49 PM CDT

Well, Sam is having her shunt put back in tomorrow morning. And they started the TPN again tonight, she's down to 52.6 pounds. Her face is bruised, mainly on the right side from her cheek up. One of the nurses told me that Dr Sood braids the girls hair in the OR to give him an idea about where to cut, as to not mess up the hair line. I think that's kind of cool. She's still having some minor problems with the diabetes insipidus. (mary alice, tell me if this is normal). Shaking, excess urination and drinking, and vomiting, in the evening about 4 hours before she gets her evening dose of the vasopressin. I wonder if she needs more during the day for some reason. We're hoping to be home early next week.

Wednesday, July 21, 2004 9:31 AM CDT

hello all. it's caitlin. just did a little updating, made samantha look more like a human on the main picture, rather than a troll. what with those red eyes.

anyways. i'm here in chicago missing everyone like crazy. i talked to samantha yesterday and she seemed tired and i could tell she wasn't feeling very well. hopefully that has changed. but today i am going to mail the present i bought her at the american girls store that she lovvvves. i think she'll like her present. i hope so. anyways, my main reason to write in here is to say that i love my mom and sister and rest of the family for being so strong through this. (i know this will make you cry mom, sorry.) please keep them in your prayers. make an angel take my place or something could you? that's what i ask Him everyday. have a great day.


****This is Ellen. Thanks Caitlin for fixing Sam's devil eyes. We got the path report back and Sam had a Rathke's Pouch Cyst. No cancer, no tumor, but a cyst. They normally don't come back and don't need any further treatment. We feel so blessed. She's still suffering from the DI but they say it can disappear in 6-12 months. I'll write more when it sinks in. But HOORAY for Sammi!!!

Wednesday, July 21, 2004 0:01 AM CDT

Well Sam woke up today looking like the loser of a fight with Rocky Balboa. But the swelling got a lot better in the afternoon and her mood got better as well. Tonight she was talking a mile a minute and laughing and walking and all that good stuff. But they're still fidgeting with her DDAVP medication and she's gone from urinating once in fifteen hours to urinating about 2 times an hour and her urine is clear, like water. So I hope they give her a bit of the medication tonight, otherwise she's gonna get no sleep. She's also drinking a lot.

We should get the pathology report tomorrow. The post surgical MRI showed they got the whole tumor out, so we're pretty happy about that. It looks like her thyroid was a bit low so they're testing that again too. She's had some nausea and vomiting tonight, which she always gets after her dilantin. Her dose is such that she takes 2 capsules but then they have to give her half of a pill. Apparently it tastes like crap. And it makes her puke. The dilantin is given to prevent seizures which can happen after brain surgery. So we're gonna check tomorrow and see if they can lower her dosage so she doesn't need to take the pill. She's doing great and has been very brave thru all of this. Thanks for all your messages and such, it helps a lot.

Monday, July 19, 2004 11:19 AM CDT

We're out of ICU and on our way back to Room 582. Sam is taking vasopressin for Diabetes Insipidus, but she's on a real small dose so we're happy about that. All her other hormones, cept the growth hormone, appear to be normal. As soon as we get the pathology report, I'll update. Sam looks like a lion, the bridge of her nose is swollen and so are her eyes. And it looks like she has a bloody headband across the top of her head. But she's beautiful. And I've told her that several times today.


HAPPY 19TH BIRTHDAY TO THE BEST TEENAGE SON A MOM COULD ASK FOR, NIKOLAAS DAVID BOOTZ KIRKPATRICK IS 19 TODAY!!!! I LOVE YOU NIK.

Friday, July 16, 2004 12:38 AM CDT

Everything went great. He was able to remove the entire tumor, says it looks like craniopharyngioma. It didn't cross over her pituitary stalk so that was good too. She'll be in ICU for a few days but I'll update as soon as I can. Thank God.

Thursday, July 15, 2004 7:58 AM CDT

Today is not Thursday, it's Decisionday..... Dr Sood came in this morning and said he wants to go in and take a look at her tumor, possibly biopsy it. Last night we were talking to Sam about what had happened earlier and she said she wants a biopsy. She said she can handle the hormone replacement and is willing to take the chance of blindness, due to the tumor location!!!!! She was so sure of this, I was surprised. How many kids say "please cut my head open"? She's just so sick of being sick that she doesn't care what they have to do to make her better. She is still not really eating and her weight keeps fluctuating. Yesterday she was 55 lbs. So we have to decide if we want to do this or not. It's by far the toughest decision we've ever had to make. The big thing about the biopsy is that we might find it's something easily treatable. Germinoma is easily treatable with radiation and histiocytosis is treatable with chemo. It was an easy decision for Sam tho, doesn't that mean something????

Wednesday, July 14, 2004 8:31 AM CDT

We got some bad news this morning. Sammi's tumor is bigger and is no longer encapsulated. It's diffuse or spreading out. We, or I should say she, will be getting a craniotomy done to biopsy the tumor and then we'll go from there.

I'd like to thank all the neighbors on Cedar St in Wyandotte for the food they've been making. I'd also like to ask everyone to pray extra hard that Dr Sood gets a good night sleep tonight and that Sammi does well after surgery. And thanks for all the cards Sammi has been getting in the mail, she didn't smile yesterday until the 4 cards she got were delivered.


*****Update: " Oh, we were wrong, it's not bigger it's the same size, it's not spreading..." ummmmm ok what the hell is going on. We're going crazy here and are at the moment, probably more confused than any 2 people that ever lived. ****Update, when the nurse came in this morning with that news, she did say, "Dr still has to review this with radiology". But jeez, you hear what she told me and you just believe it!!! So I should have put that in my entry this morning, I shouldn't have jumped to such conclusions. That being said, it's been a long day and hopefully tomorrow will be better. The new plan is that she will have her shunt put back in on Friday and hopefully we'll be home by Tues or so. But we are asking our Health insurance Company to authorize us to go to Johns Hopkins for treatment. I hope they agree.

Tuesday, July 13, 2004 9:18 AM CDT

Our Endo guy and the Neurosurgeon are both back at work!!! They re-ran her hormone levels, because the other night she started urinating a great deal and it was very dilute. But her lab results don't show that she has DI. We're keeping an eye on it tho. Her shunt pressure is back to zero, as Dr Sood wants to get rid of the fluid pocket in her back. We are getting an MRI today at 1pm. Mary Alice, I'm going to call you in a few mins and thanks to everyone who has signed Sam's guestbook. I can't access my email here but thank you Tami, I'm sorry about missing your daughters graduation party, but that was just about when Sam started getting sick. I will get a card in the mail just as soon as I can.

***We weighed Sammi, she's back down to 54 pounds, wonder if it has anything to do with the gallons of urine she's shedding every day!!!!!

Sunday, July 11, 2004 7:15 AM CDT

Sam is feeling pretty good, her drain is still set at 25 so we haven't made any progress there, but she is feeling better. Dr Sood will be back tomorrow so we'll be making some important decisions.

It looks like a beautiful day here in Michigan, so Alec and I are going to spend it doing laundry, cleaning the house and visiting Sam. Chris will be coming home tonight and Alec will be going to Nana's. Caitlin made it safely to Chicago and Nikolaas is coming home tomorrow to visit Sam. Please pray that we make the right decisions for Sam.

***Sam is accumulating fluid around her drain site on her back. Don't know what it means but I want to keep everyone updated....

Saturday, July 10, 2004 5:12 PM CDT

Mo passed away this morning at 7:10 am and Katherine is slipping away. This is a very sad day.

Friday, July 9, 2004 4:58 PM CDT

Chris is staying at the hospital with Sammi tonight, and I'm going to stay home with Alec, who needs his mommy and Caitlin, who doesn't. (She's 16!!!)

Sammi is doing pretty well, she still has little appetite, but they took the lipids off last night and maybe the TPN tonight. Her drain has been turned up and she's had little headaches so we're on our way to finding out if she still needs the shunt or not. I ran downstairs to get copies of all her records and stuff since June 25. Her CT scan that day says, "Prominence of the stalk of the pituitary gland increased in size when compared with the prior exam (Feb 4, 2004). So that's a bit unsettling. We have stopped the growth hormone for now, as a radiation oncologist down at St Jude, saw her films and was not too impressed that shes getting this. Normally, after resection of brain tumors and end of treatment, they won't give kids the growth hormone for a year or two. So we decided to stop it for now. Our endocrinologist is in the hospital, sick himself, so another one from his office came in this am and said we were doing her no harm by stopping it. Please pray for us to be strong when we talk to our neurosurgeon, we really feel like we need to take the next step, in view of the fact that it may be getting larger. It's very intimidating, this world of brain tumors.

I have a special request. There are many, many children on our pediatric brain tumor message board, that are doing very poorly. Please pray for Emerald, Celeste, Isaac, Mo, Katherine and any others I may have forgotten. Samantha has a new best friend, Simonne, who is in a room across the hall and suffers from Cystic Fibrosis. She is very brave and has done a lot to help bring Samantha back to the world of the living. Sammi doesn't do well in the hospital and Simonne has her in the playroom, laughing and having fun. She was told today that she might go home on Monday, please pray that she does. Her family lives far away and she's usually alone during the week.

Thursday, July 8, 2004 11:37 AM CDT

Sam is up to 54.8 pounds and is doing pretty well. They put her pressure up to 20 and it seems to be a bit too much, she gets headaches when she gets up. Her appetite still pretty much sux but she's getting there. Our endo is sick and neurosurgeon is out of town until Monday. So as soon as we know anything, we'll let you know.

Wednesday, July 7, 2004 9:17 AM CDT

Sam's doing better, they've increased the TPN and lipids so hopefully she'll start gaining some weight soon. We got some interesting info from a radiation oncologist down at St Judes. Not good, but interesting. So that's something we're working on. I'll update more after I talk to him.

Monday, July 5, 2004 1:38 PM CDT

Quick update, we're going to be at the hospital for at least 2 weeks, Doc wants to get Sam stronger and he says she's spitting out a lot of csf, so she still may need the shunt. She has a central line in, so no more pokes. She met a new friend, a little girl her age who has cystic fibrosis so she seems happy to have met someone her age who isn't bed bound. She's feeling a bit better. Will update when i can.

Saturday, July 3, 2004 10:12 PM CDT

I lost a couple of entries. Sam is in the hospital again. She was badly dehydrated and they decided to take out her shunt and see if maybe she doesn't need it anymore. Her third surgery this week will be done tomorrow morning, to put in a central line so they don't have to keep poking her. She's on TPN, which I think stands for Total Parietal Nutrition. She has lost 8 lbs in the last month, 5 in the last week alone. The TPN is very hard on veins so they're doing the central line so she doesn't have to be poked continually. She also had a break in her EVD drain line so they had to mess around with that to fix the line and she basically cried for about 3 hours straight this afternoon. Chris is staying with her tonight so I came home and instantly went to sleep. Then I got up, did some laundry, pulled some weeds, watered some flowers, ate some oreos and took a shower. I am replenished and ready to go back into the battlefield tomorrow. I really have hope that this is a good thing for her. If we can get rid of the shunt, we won't have to worry about every little headache etc. And we will be going to Cedar Point so she can ride her roller coasters. She has been very brave. Even tho she knew that they were going to have to change her IV, she told me it was hurting and boy was it swollen. And when her drain started leaking, she told me. I told the nurse, if it had been me as a child, they would be chasing me around the room and I would have kept that IV in my arm til it fell off (my arm that is!!).

Saturday, July 3, 2004 9:52 AM CDT

Well we got down to Childrens yesterday and they said she was badly dehydrated and has lost 8 lbs, 5 in the last week alone. So they decided to take out her shunt, the thinking is that maybe she doesn't need it anymore. They are also feeding her TPN thru her iv. Her tubing from the EVD started leaking so they fixed that up, she was not happy. I think we're going to be here at least thru Tues. If she doesn't need her shunt anymore, I think that will go a long way to making her feel better and we can get on with our lives. How many times have I said that tho??? I am praying that this is the last time.

***update, they're going to put in a central line tomorrow, she keeps blowing veins with the TPN and it's very painful. So this will help her a lot I think.

Friday, July 2, 2004 7:27 AM CDT

I thought I typed in a new entry last night, but apparently it didn't make it all the way in cyberland. Sam was still throwing up yesterday, I took her to her pediatrician and she said she had trace ketones in her urine. She prescribed her a suppository for nausea but it really didn't seem to work. Dr Sabal and I talked about our frustration of not getting phone calls back,etc and she said she can tell by the way Dr Sood talks about Sam that he really cares for her, I know that too. She thinks they just don't know what to say to us. They're out of ideas. I sent an email to St Judes brain tumor team last night, but I don't think they'll see her w/o a diagnosis. The endocrinologist is out of town until July 5. We're really frustrated


Sam woke up today with a fever and said her ankles have growing pains. I'm going to take her downstairs and see if we can get her to eat something, if not, I have to take her downtown for some fluids. Thank you for all the nice comments in her guestbook.

Wednesday, June 30, 2004 10:22 PM CDT

Well, Sam slept 12 hours last night, woke up for about an hour then slept for another 3 hours. Then she started puking again. She is still not eating, says she's nauseated. We weighed her tonight, if our scale is right, she's lost 6 pounds in 5 days. She's down to 52 pounds. We called the neurosurgeon and she said that yes, her tumor is in an area that can affect her eating. I'm going to call St Jude's tomorrow and ask the Dr that last saw her scans to walk them down to Dr Merchant, the head of radiation oncology and see if they will take a quick look at them. I'm also going to go to Childrens and get 2 more copies of mri's and send one to a doc at Johns Hopkins and one to a Doc at Cedar Sinai in LA. I don't know what else to do.

Tuesday, June 29, 2004 9:54 PM CDT

We're home. The psychiatrist at the hospital told us her symptoms are not from depression. The endocrinologist is on a mission to help her feel better. Her headaches are gone, she just feels nauseated but I think that's because the girl hasn't had a decent meal in days. The endo is worried about her not eating. He says he doesn't like watching her waste away. Neither do we. We got a really nice email from a Doc at St Judes, who agrees we're doing the right thing by not operating, he says he doesn't think it's craniopharyngioma, it is acting like histiocytosis.

Please pray for our friend Emerald, who I think is in the hospital. www.caringbridge.org/mi/emeraldisle.

Monday, June 28, 2004 10:27 AM CDT

Caitlin, I think that's the best journal entry we've had so far. Thank you!!!!

Sam is still throwing large ketones in her urine so we're still here. She's feeling kinda crappy but hasn't vomited since surgery, which is awesome for her, as Chris says, she's a puker. She has a new shunt valve, which is programable and hopefully that will help. Hopefully we'll be home tomorrow.

Sunday, June 27, 2004 6:44 AM CDT

We're still home, she's still puking....nuff said.

EDIT: (Sunday June 27 at 12:57pm) that was my mother. this is caitlin, updating in place of my mom, because she is at childrens with samantha. my mom came into my room about nine crying. she was pretty upset but it was short-lived. she gained compusure and then asked about my underwear, that are really shorts. (what a mom..weird)anyways, she went back downstairs and took sammi to childrens, instead of texas. i know samantha is going to be really upset, especially as the day progresses and this afternoon she has to have surgery again. something about her shunt isn't draining what it needs to, or overdraining..i don't know the whole story. i was also told it over the phone when i was half asleep. so they have to put in a new shunt, one that you can control the amount that is being drained, i think. basically, i just am asking for you guys to pray for her. she is scared, i know. and upset because she can't go see monica and i'm hoping prayer will help her see that God isn't hurting her, like she things He is, He's helping her.

Saturday, June 26, 2004 9:29 AM CDT

Yesterday was just one of those days. I picked Sam up at Nana's and she was feeling so-so. We went to the mall with Rachel and had fun. Then we got home and she started feeling worse, even Rachel got in on the fun and got a headache and spiked a fever. After Rachels dad picked her up, I called the neurosurgeons office again and was told he was out of the office until July 11. Needless to say I wasn't happy, I've been sitting around all week waiting for him to call and he's not even in the office. I called the Endocrinologist, who also was not happy that he had been waiting for a call also. He said that he had Sam's prolactin confused with someone elses and that he was mistaken that hers was low (I don't even think we've had that tested). I told him she still was not feeling well and he suggested that I take her to the ER, so I did. The pediatrician that first looked at her said her left optic nerve looked like it was swollen. 7 hours later, the neurosurgical nurse practitioner said it looked fine and the ped looked at it again and said, oh it looks fine. So we got home around 2am. They did a CT scan which showed no changes from her last one in Feb and xrayed her shunt, just to be sure. So the nurse came in and actually had a nice conversation with Sam, told her that she was not in any danger of any sudden tumor growth or anything bad happening so to enjoy Texas and not worry about that little "thing" in her head. I told Sam that we have nothing to worry about for the next 7 days. We are going to a wedding reception tonight, she's never been to a formal wedding before so we're excited about that. Chris and Alec went up north for a little R&R, as he probably won't get any time off this summer. Nik is happily bussing tables at a restaurant near his Grandmothers cottage and Caitlin is in Chicago, at an orientation for the college course she's taking in July.

I have a headache now!!!!!(sorry for not calling Mary Alice!!)

***update - Sammi has been vomiting for about 3 hours so her doctor called in a script so we can get this under control before we get on the motion filled train tomorrow. I'm a little bit nervous about going with her not feeling well but they have good hospitals down there so we're going for it. We have a sleeping car so we won't have to worry about being uncomfortable.

Wednesday, June 23, 2004 10:26 PM CDT

We had a nice, but long day today. Alec had his first day of bowling on his league, he bowled great. Then we raced out to a very cool mall I've never been to, to visit with Beth, her mom Jenni and her little brother Mikey. Beth is a medulloblastoma survivor. We met her thru a guy I worked with (when I had a job and was a valuable member of society). We are treated at the same hospital and have the same ns, so we've visited at the hospital. The time we went to visit Beth she was sleeping and the time they came to visit Sam she was recovering from surgery. So today, they got to be two girls at the mall. We ate at Rain Forest Cafe, went to see a funny movie, White Chicks, and then went to an arcade. They had a good time and I was glad we finally had time to relax and just watch the girls enjoy themselves.

Sam's endo called today and asked if Sammi might possibly be depressed. I told him that she had been seen by Dr Leleszie, who is the awesome head psych guy at Childrens. He actually diagnosed Nik as ADD about 10 years ago and he remembered us. So I told him what Dr L said, "her depression is the size of a ladybug". Very small and not contributing to her symptoms. So he felt better after hearing that and he reviewed some of her labs and noticed that another hormone, prolactin, was low. Prolactin is the sexual hormone that allows women to nurse their babies, and I'm not sure how that affects an 11 year old, but Dr Cara said he's going to talk to Dr Sood and call me back tomorrow. So we've had a bit of progress.

We leave on Sunday for our trip to Texas and Sammi is getting excited. Oh and I had to poke her twice for her shot tonight, I turned the knob too much and it wouldn't go down. She suggested that i poke her again, so I was very proud of her. She's an awesome kid.

Please pray for a boy named Mo. His family has decided to start him on Hospice, as his treatments did not work. He went on his Make-A-Wish a few weeks ago and got to meet Bill Cosby here in Michigan before going on to the Mall of America in Minnesota. Mo's dad Mitch is an inspiration to many of us on the Yahoo Pediatric Brain Tumor group. It's very sad and discouraging.

***** another child in need of prayers, Katherine Cross, a cute little girl has received the worst news. Her tumor has gotten bigger and they've found more tumors, near her optic nerve and on her spine. Please visit her guestbook and tell her parents how many people are out there thinking about her and praying for her.

www.caringbridge.org/tx/katherinecross

Monday, June 21, 2004 12:27 AM CDT

Well, the family had a nice time at Nana's. On Thursday night, Sam's pupils were totally different sizes. It stopped after a little while. Then we had the bathroom fiasco. I noticed last night that her pupils were huge, even in bright light. And this morning I shined a light in them and they got smaller but then slowly got bigger again, so I talked to one of the nurses in the ns clinic and I'm waiting for them to call me back. My concern is that maybe the tumor has gotten bigger since she's on the growth hormone, it's not normally given to kids with active neoplasia, but I think since her tumor has basically been the same size for almost a year, they felt safe giving it to her. I'll update if we find out anything today.

On a happier note, Alec and I went for a little walk last night and met the mom of Bryan, a boy on the next block who has medulloblastoma. He is on 48 weeks of chemo and has had a pretty rough go. We are going to go over there tomorrow and hopefully have a little visit with him. We were walking away and Alec said, "Wow, she was really nice!". I told him that he's a nice kid.

Friday, June 18, 2004 9:08 PM CDT

Hello all...today was a very good day, with a bit of a scare. Sam has been having some cramping in the area of her tubing in the front, near her navel. And with her not having the greatest of weeks, I was on mom watch for any symptom. She was complaining all morning that her tubing was cramping. But we were at Greenfield Village with Alec and Rachel and she didn't want to leave. After a little while, I looked at her belly and it looked really bloated, she's a teeny little thing and it really was sticking out. I told her she looked bloated to me and she said that always happens when she eats or drinks (she had 1/2 a hotdog) and I said I don't think so. So after a visit to the restroom, she came out, said she felt much better and lo and behold, her tummy was as flat as ever. Then she tells me she hadn't gone to the bathroom in about 7 hours, since like 5:30 am. I think I bonked her on the head and told her to never scare me like that again. Chris and I were making plans for the ER and the next thing I know, my daughter came out of the bathroom a new girl. Lord almighty, the fun just never ends. Chris, Alec and Sammi went to spend the weekend with Nana so that Caitlin and I can spend some quality time together. So we've been arguing and hugging and fighting and laughing. The usual with a 16 year old girl. We found a ceramic painting place in town that's been there for over a year. I've never seen it before, I told the owner I should try looking at some of the side streets once in a while. Wyandotte is an awesome little town, right on the Detroit River and we live close enough to the river to see Canada and hear the big ocean boats going by. It's cool.

Thursday, June 17, 2004 9:48 PM CDT

Today she was feeling a bit better, but she scared me around dinner time. Her pupils are usually different sizes, the right usually a bit bigger than the left. But today there was a big noticable difference. Her head felt better and she was eating a lot better. I called the ns office and they said it sounded like we could wait until tomorrow to bring her in. So depending on how she feels, we're gonna wait til tomorrow.

Please say a prayer for a little boy named Isaac who has had a recurrence of his horrible brain tumor. His family has decided to start hospice treatment. Please visit his guestbook at www.caringbridge.org/wa/isaac.

Wednesday, June 16, 2004 9:14 PM CDT

Caitlin added a new picture of herself and then one of Sam on the home page but that one isn't working yet, so take a look!!!!! Cait promises me she'll fix it tomorrow.

Dr Cara, the endocrinologist called, and said in his opinion the tumor is causing her symptoms. He's going to call Dr Sood tomorrow and call me back. She had really bad headaches today, she said they were moving all over her head, her head hurt when she bent her neck, when she shook her head and then it would stop, then start again. She ate a bit better. He seemed surprised that the growth hormone wasn't making her hungry.

My sister Mary is coming home in about 10 days for a visit, she lives in Mexico so it's a bit of a trip for her but it'll be nice to have her home.

Other than that, there's not much going on. We're just taking it day by day. What else can we do?

***Update - Sammi's friend Bethany had clear MRI scans!!!!! How awesome is that???

Tuesday, June 15, 2004 10:35 PM CDT

........DETROIT PISTONS RULE....


On a different note, today was another bad day. We called Dr Cara again, waiting for call back. They said he'd call back to day but he didn't. Frustrating. She was really tired today. She says she's not getting any sleep. Might be a bit of an exaggeration but that's how she feels. The big thing that's worrying me is that she's not eating. She says she's not hungry. We stopped the Megace because she didn't gain any weight and it can cause headaches and nausea. But she has to eat. Today she had a piece of bread, about 5 french fries, a third of a hot pocket and about 3 bites of ice cream. I asked Chris what he wanted for Fathers Day. He said he wanted Sammi back the way she was. Sorry, I can't do that. She's feeling depressed about the future, we were talking about her playing basketball and I asked her why she didn't want to play next year. And she said she was sure she wouldn't be able to play so what was the point. I tried to tell her to try and have a more positive attitude, blah blah blah. I don't think she bought it. I know it's mostly just her not feeling good.

Sunday, June 13, 2004 10:01 PM CDT

Well we had a good weekend and baby Calvin has been officially made part of Gods family. He did really well and looked really cute in the outfit made specially for him by Grandma Diane. Nikolaas surprised us by coming home for the weekend and so he went to Ohio with us. It was a nice weekend all around. Sam has been feeling a bit better so I'm happy about that.

Please say a prayer for Samantha's friend Bethany who had her brain and spinal MRI's this weekend. She's doing great and we hope to get together with them for dinner or something over the summer, hopefully sooner than later.

I picked this new background on Sam's website because I like the four hands around the heart theme, seeing as we have four kids. They fight like the dickens but they love each other as only siblings can.

Friday, June 11, 2004 10:21 PM CDT

Took Caitlin to Dr Zaltz today and he said her collar bone is not fully healed yet so no surgery as of yet. We just love Dr Zaltz, or as Caitlin calls him, Ira.

Sam is still feeling crappy. She's basically nauseated almost all of the time. I'm going to call Dr Cara, her endocrinologist on Monday and see if maybe we need to do some level checking. I am supposed to go to a wedding tomorrow, I kind of checked with Sam, she seems leery about me being away for too long. So I'll broach her again tomorrow and see what she says. We are going to Ohio tomorrow night to stay at my sisters so we can go to Calvins baptism Sunday morning.

Is it wrong to miss a wedding because my daughter is afraid to be away from me??? My heart tells me it's not wrong. I think she's kind of nervous because she's not feeling well. I don't blame her.

Alec did great on his report card and will be happily elevated to 4th grade next year. He's the funniest kid. But he gets so insulted when he makes us laugh. He doesn't quite get the "we're laughing with you, not at you" theory. Nik is still at the cottage and we miss him. Sam and I leave in 2 weeks for Texas, it should be fun. She's worried about crying when she gets her shot, in front of Monica. It's so weird what kids worry about.

Thursday, June 10, 2004 2:45 PM CDT

Sammi has not been feeling well at all today, she got her stitches out with no problem and I thought that's why she didn't feel well. But we're home and she's still laying on the couch. Schools over and she will be promoted to the 6th grade. We just have to work on math over the summer. We got an answer from Dr Allen on her last MRI and he said one of his neuroradiologists thought it might be ectopic posterior pituitary which means normal tissue in an abnormal area. But once again, I've decided that we won't know what it is unless they have to take it out so I'm not going to worry about what it is. We're going to try and just treat this summer like any other, and besides giving her the shot everyday, we're not going to treat her like a sick kid. We're going to Texas in 2 weeks and she's going to camp for a week and it's going to be a good summer. I have spoken!!!!!

***Update: I forgot to let you know that the appetite stimulant Megace is not working for Sam. She's been on it for 2 months and has not gained any weight. In fact, she has only gained one pound since she got sick. So, since it can cause headaches and nausea, we're going to stop taking it.

Monday, June 7, 2004 9:25 PM CDT

The nicest thing happened to me today. Our neighbor Rachel, who is 8 going on 30, asked me if I would be her second mom. Of course I said yes!!!! She and Sammi are very good friends and Rachel and her 2 little sisters have really stuck by Sam in the last year. Her parents have picked up Alec at school when Sam was in the hospital and I'm just very glad that they are our neighbors.

Sam is feeling pretty good. I've noticed that since she stopped taking the medicine that was making her so tired, that she's not sleeping as well. That kinda sux but I'm hoping this new med with help her within a couple of weeks. She's looking forward to going to a picnic with Rachels school tomorrow and summer vacation is just around the corner. She's doing really well with her shots, doesn't cry anymore, she just says, "go slow, make sure you go slow".

Saturday, June 5, 2004 9:48 PM CDT

Well, we got home last night, it only took the ns nurses about 5 hours to discharge her. Alec and I came home early and made Sammi a sign. She liked it and instantly went over to her friend Rachels house. We didn't really find out anything from this icp monitor. At least we know her shunt is working. And her scar is a lot bigger than I thought it would be. But she's wearing one of the hats that she got from her friend Beth last year when we thought she was having this surgery. She looks very cute and we're glad to be home.

I guess now we're just going to enjoy the summer and look forward to her being in 6th grade next year. That's the plan.

Friday, June 4, 2004 10:51 AM CDT

Hi, we should be going home later today, she's had her usual problems with nausea and vomiting after anesthesia. Her pressures are normal so we still don't know why she feels so crappy but they put her on a different anti-depressant that won't make her so tired. Will update more when we get home.

Wednesday, June 2, 2004 7:07 PM CDT

this is caitlin, because my mom is still in the hospital. she called me twice to do this, but i was sleeping. well anyways, sam is doing as well as can be expected. a lot of sleeping. her pressure(s?) have been a bit low, so what the doctors think seems to be coming true. unfortunately, i hate no idea what that means. anyways, my mom doesn't know when she'll be coming home. but i know they're trying. keep them in your prayers you guys!

Monday, May 31, 2004 10:51 PM CDT

The most amazing thing has just happened. 23 years ago, my sister Mary gave her 1 year old daughter up for adoption. Mary was only 16 and decided the best thing for Kelli was to let someone else raise her. Kelli just turned 24 on the 25th of May. We think we found her, or more accurately, she found us. I've already spoken to her and we're going to meet somewhere tomorrow. Unfortunately my sister now lives in Mexico and so I don't know how quick she can get up here or if she can at all. My God, this is something we've all been waiting for. I just wish my mom was here to see it. I'm going to have to go thru all my pictures and find some to bring to her. Her name is Katie now.

Sam is doing much better on her shots. Thanks for all the people who are signing her guest book. She loves reading the messages.

Sunday, May 30, 2004 8:17 AM CDT

Sam is finally feeling better and the shots are going better. She still wimpers but she hasn't screamed in 2 days. When the nurse was here teaching us how to give the shots, she told Sam that her feet and hands would probably grow first. We went to buy her a new pair of sandles, she's worn her other ones for about 2 years. She's been wearing the same size so she says we better buy a bigger size in case her feet start growing. So she's in a size 1 now.

Our city is having their 150th anniversary this summer and the 4th of July parade will celebrate that. So the city wanted 7 children of different nationalities to represent the settlers of Wyandotte. Sam is going to be the Irish child, thanks to her Nana who is very Irish. So we're excited about this, it should be fun. It's the day after we get back from Texas.

We went bowling yesterday and had a good time. Today I think we're going to Nana's. I hope everyone is having a good Memorial Day weekend.

Thursday, May 27, 2004 9:09 PM CDT

Well, it's been a long couple of days. Sam has felt really bad since Wednesday. I think it's probably mostly this cold she has. A girl in one of her classes is at U of M hospital with meningitis. And one of her best friends, Nathan, may have it. That's what started all this for us last year, I just hope Reagan and Nathan are ok when all this is over.

Sam's surgery has been moved to next Wednesday. It will be at Childrens Hospital. Other than that, there's not too much new going on. We're just tired but looking forward to the long weekend. Then again, every day is the weekend when you're unemployed and getting homebound services from school!!!!! Oh and Sam hardly cried tonight when she got her shot, Chris is doing them now too, so that's been a big help.

Wednesday, May 26, 2004 9:50 AM CDT

Well, last night at about 4am, Sammi woke up with a stuffy nose. So surgery has been postponed until next Wednesday, June 2. Will write more later.

Tuesday, May 25, 2004 10:15 PM CDT

The shots are still not going well, I'm going to call the nurse tomorrow and see if she has any ideas or maybe she needs to come out for more training.

Sam will be admitted on Thursday for the ICP monitoring. We'll find out tomorrow what time we have to be there. Usually it's in the afternoon, which sux because then she can't eat or drink all day. But tomorrow we're going to field day at her school, she's excited. But then I have to take Alec to the docs for an ear ache and then Caitlin and Alec have dentist appts. The fun never ends.

Monday, May 24, 2004 7:57 AM CDT

Yesterday was a pretty good day, we went to the little carnival they were having in town and Sam got to go on some rides. Then we did the shot, it wasn't the greatest, little bruise but she said I'm pushing the button that pushes in the medicine too fast. So I'll keep an eye on that tonight. We have our appt with the ns today, so hopefully we'll get some good info and find that her spinal MRI was negative. I'm sure it was, we just did this to verify there was nothing going on there. I'll update when we get back.

****UPDATE****We just got back from the ns appt. He still says he doesn't want to do surgery, doesn't want to impair her pituitary unless he has to. We agree. But he's going to do a minor surgical procedure, icp monitor, to check and see if her pressures are high and if that's why she feels so crappy all the time. We'll probably do that later this week. He said it was up to her and she wants to get it done this week and out of the way. He said the chiari is very minor. So we'll get this out of the way and hopefully get some answers. Oh and good news, her spinal MRI was negative.

Saturday, May 22, 2004 7:44 AM CDT

Yesterdays shot went better. She still screamed (I think she's really really sensitive to these) but she let me hold her right away and she was fine w/i about 10 mins. So we're making progress. I don't ordinarily pray out loud, I'm not comfortable doing that. But yesterday in the kitchen, I prayed out loud that I wouldn't hurt her again. And I didn't. No bruise, no slicing of skin. Just a little girl getting a shot. (Mary Alice, we did get the pen).

We had some extremely bad storms go thru here yesterday. Sam and I had walked into town to get some lunch and the skies were getting darker. I looked up and the sky was a dark dark green and Nikolaas came down and said he heard there was a tornado. So what did I do? I got in the car to go pick up Alec, whom I knew would be freaking out. All the kids were excited and Alec was a bit frightened. His teacher looked very glad to see me. They were getting ready to put the kids in the hall. So Alec and I had a hellacious ride home. Then we went into the basement. Sam had saved everyone of her American Girl dolls. We were only down there for a few mins. Everywhere around here is flooded, we've been getting heavy rain nearly daily for about 2 weeks now and there doesn't seem to be any relief in sight. We are going to a hotel tonight to do some swimming and other fun stuff.

We are going to visit Sammi's friend Monica, who moved to Texas a few years ago. Sammi really misses her. So she and I are going at the end of June. We're taking the train and getting a sleeping car. We're excited. They live in Arlington so there should be lots to do.

Please say a prayer for a little boy named Mo who has had a recurrence of his brain tumor, his dad Mitch has been a great source of information on our Yahoo Pediatric Brain Tumor message board.

Friday, May 21, 2004 7:08 AM CDT

Yesterday was just one of those days that you'd rather forget. Sam had her spinal MRI. They told us they would sedate her if she wanted it, since the test is a lot longer. Well she was so quiet yesterday, until a little boy in front of us stopped the revolving door and hit his head. She thought that was funny. He didn't remotely hurt himself, but he was very funny and that really cheered her up. So when we got down there, she told them she wanted to go to sleep. They gave her 5 mgs of valium. I thought she was sleeping but she told me later, she was just trying to go to sleep. They came in to get her and she told them she wanted something to put her to sleep. I told them also. They said, "let's see how it goes, she'll probably go to sleep.". This was my first MRI, Chris usually goes in with her. If I had known how fricking loud it was, I would have insisted they put her to sleep. I should have insisted anyway, it's what she wanted, she's old enough to know what she needs. I couldn't believe how loud it was. Imagine laying in a tube and having a jackhammer and a motorcycle revving above you. That's about how loud it was. I'm pissed at myself for not insisting. What is it about walking into a hospital that turns me into a quivering mess?

Then we got home and did the shot. It didn't go well, she instantly got a big bruise and I think I actually cut the skin with the needle. She's so sick of this, so am I.

There's a boy on the next block who has medulloblastoma. He's in bad shape. The neighbors took up a collection and gave everyone blue ribbons to put on their porches. Every time I come home and see Bryan's ribbon on our porch I think to myself, Sammi should have a ribbon too. She may not be as sick as he is, but she is a survivor too. So I went to Michaels (and anyone that knows me knows I'm not crafty) and bought some grey ribbon. I made a ribbon for our porch and put her name on it. She loves it. I wasn't sure if she would or not.

Then we had some really bad storms here last night. Alec hates storms and was up til about 3am. So we're going to school late today. It was a long night.

Wednesday, May 19, 2004 9:24 PM CDT

Well, the first shot is finally over. She did pretty well, she did cry but she stayed still and didn't move away. I did pretty good too, the nurse said but I felt horrible. I know it'll get easier. She did really well, getting everything ready, mixing the meds, sterilizing the needles etc. She looked like a little doctor. Tomorrow is her spinal MRI.

Chris is going out of town tomorrow for work and won't be back til Sunday so we're gonna be on our own. Wyandotte is having a fair this weekend, so I'm sure we'll be there at least once.

I'm still tired, that seems to be a major theme running thru my life lately. It sux.

Tuesday, May 18, 2004 10:41 PM CDT

Well Sam has been in a better mood. I asked her yesterday what was wrong on Sunday and she said she was just in a bad mood. I guess that happens to everyone. But she's still not feeling good. Nauseated, headachy, chest pain. Her teacher could tell she didn't feel good today and only stayed for 30 mins. Her spinal MRI is on Thursday. And we should be starting the shots tomorrow. We'll get the supplies hopefully in the morning and then the nurse will come over and show us how to do it.

Dr Allen, the neuro oncologist from New York said he got our cd's and for some reason his computers wouldn't read them. So we'll try again next week, with some new cd's. I'll order them on Thursday and pick them up that day.

That's about all for now. I'm tired.

Sunday, May 16, 2004 11:06 PM CDT

Today has been a long day. Alec and I played putt-putt and had a lot of fun. Then we met Sammi, Chris and Nana at Cracker Barrel. Sam was basically non communicative. So I told Chris that maybe we shouldn't be doing what we always do. "what's wrong, does something hurt?". She went out to play when we got home. I took a bit of a nap, but she has been so so quiet today. I got her giggling, telling her about some funny things that happened to Alec and I this weekend, but then 2 seconds later she was yelling at me cuz i accidently touched her. So I'm not sure whats going on with her. I will give her time to open up, she usually does.

Saturday, May 15, 2004 11:17 PM CDT

We met Sam and Nana at the antique show and Sam is still feeling crappy. She's tired, and her head hurts when she shakes it. So Chris went with her and Nana back to Nana's house and they're gonna hit another antique show tomorrow in Saline. Alec and I will meet them tomorrow for dinner and bring Chris and Sam home.

I'll be calling the docs office on Monday to find out what to do about her still not feeling good. I already know what they're gonna say. Bring her in, blah blah blah. Then they're gonna do a bunch of crap. And God only knows if they'll find anything. It's maddening. I'm sick of it, I can't even imagine how she feels.

Friday, May 14, 2004 8:56 PM CDT

Well, it was a quiet day today. Sam is at Nana's and they did their gift cart thing. Sam got a headache, so they had to leave a bit early. Tomorrow we're meeting her and Nana at Greenfield Village to partake in an antique show.

Caitlin is with her friends Rachel and Stephanie this weekend. I dropped her off at church and I think she'll have a good time. Nik is at work and Alec is in heaven, sleeping with his momma tonight.

Chris' phone pooped out so he's trying to get a new one and I got a manicure. It was so quiet today, with no one home, I didn't quite know what to do with myself. I did some laundry and that's about it. Oh, I stopped in at "work" after dropping Caity off and it was good to see everyone. I miss work but glad to be home at this time.

We are getting delivery of the growth hormone stuff on Tues AM and a nurse will be calling on Monday to set up an appt to show us how to do it. So the ball should definately be rolling by early next week. It's good to be finally doing something.

Thursday, May 13, 2004 10:01 PM CDT

Dr Sood called Chris today, of course when he was in a part of the lab where he can't receive phone calls. Dr Sood left a message that the tumor hasn't grown, which we knew. So Chris made an appt for next Monday, so we can go in there and actually talk to him. We still need to know if it's ok to start the growth hormone so I'm going to send him an email. I did send the scans to the dr at St Judes to have him take a look, so he'll get those tomorrow.

Hopefully Dr Allen will call or email me tomorrow. And next Thursday is her spinal MRI, just to make sure there's nothing there.

We had fun with baby Calvin. It has taken Jenni 7 months to let us baby sit, and of course she got a flat tire 1/2 mile from my house. So she turned around and came back. We got to baby sit for about 7 mins. But it was wonderful. I love those big blue eyes.

Sammi is spending the night with Nana, she's going to help her with the gift cart tomorrow morning at Providence Hospital. Sam loves going there with Nana.

Thursday, May 13, 2004 9:04 AM CDT

Still no word. But we're excited about today, Calvin the baby is coming over for us to babysit.

I over nighted her films to Dr Allen yesterday, so he'll get them today. I'm also sending a copy today, to a doc at St Jude who specializes in hystiocytosis just to get his read on it.

I have to take Caitlin to the dentist today. I hate even taking my kids to the dentist, I had mucho bad experiences when I was a child. Ok, I'll update if we get any info.

Wednesday, May 12, 2004 8:17 AM CDT

We still have not heard from the neurosurgeon. Chris left 2 messages yesterday, one on Monday and one on Friday.

I called the endo's office yesterday, twice, and on the second call spoke to his nurse. She is pretty sure they ok'd the injection pen for the growth hormone shots, she will make sure and call me back today. I also asked her to make sure Dr Cara sees the latest MRI to make sure it's ok to give her the growth hormone.

Sammi felt like total crap yesterday, pardon my french. She said the headaches have been on the top of her head. When we talk to her ns, we will let him know. I think he thinks her headaches are stress related. That's possible. It's also possible it's the shunt, the tumor, the chiari malformation or the psuedo tumor cerebri, her form of hydrocephalus. Take your pick, I don't think there's any way to know for sure. All I know is I want my little girl back. Obviously, she's never going to be the way she was, but there has to be a way for her to feel better. If we hear from her doc today, I'll update.

Monday, May 10, 2004 3:16 PM CDT

Well, according to the mri on Friday, the tumor is not any bigger. That's what the last 2 reports have said, even tho Dr Sood and Dr Allen both say it is a bit bigger. So I guess this is going to set us up for 3 more months of waiting for another MRI. This is frustrating. Hopefully when Dr Sood calls today, we can figure out a way to get her to school next year. oy vey....Ok I'll write more later...

It's later. I didn't mean to sound like i was "disappointed" the tumor isn't bigger. I'm glad it's the same size. It just seems like we're part of the neverending story. Of course, Dr Sood didn't call us. Of course, the endocrinologist didn't call us. Is this important to anyone but us??? Why isn't it more important to the people that are supposed to "cure" her? What is so tough about calling us back?

Saturday, May 8, 2004 7:04 PM CDT

I think I'm crazy. I rented 2 movies from Blockbuster, 2 movies that don't involve mutant turtles or pretty ponies and other such child stuff. But I can't get off the computer, I might discover something about Sam's tumor or someone might send me an email about it or something..... I've been looking at her mri's all weekend, trying to tell if the tumor is bigger. Is it bending the optic chiasm or am I just paranoid? Why is Caitlin blowing on my hair? (she's waiting for her friends to pick her up and she's basically driving me crazy). Caitlin is going to Novi for the night and coming home early tomorrow. Nik is at work, I have to pick him up at 11:30. Sammi and Chris are staying at Nana's for one more night. She had fun at Luke's party but left early cuz she had a bad headache. So it's another quiet night for Alec and I. Ok not so quiet, his friend DJ might spend the night. He and I went to the Salvation Army today to help pack up canned goods collected by the US postal service in Wyandotte. I think at least the whole state did it, maybe the country, not sure. So he was very tired, Alec isn't the most energetic child in the world.

I got my mothers day present 2 days early, my recent crabbiness has been noticed by the family so they thought they would cheer me up. And it worked!!!!!! I got a beautiful mothers ring, with a ruby for Nik, diamond for Caity, amethyst for Sammi and an opal for Alec. It's gorgeous but apparently Chris thinks he's married to some chick with big hands cuz it was wayyyyy too big. So I took it back to get sized and I'll get it back next weekend. Ok I will now attempt to sign off the computer. I will not take it to bed with me tonight, I won't sign on before I eat breakfast tomorrow and I certainly won't spend mothers day on it. HAPPY MOTHERS DAY to all the moms out there. I just wish my mom was here to celebrate with me. I miss her a lot. But it is my sisters first one, so HAPPY MOTHERS DAY TO JENNIFER.

Friday, May 7, 2004 6:46 PM CDT

Well today was another day of finding out nothing. Dr is out of the office til Monday and the results were not posted. I did go down there to get my CD's of the MRI and it looks a bit bigger to me, it looks like it's bending the optic chiasm again, but I can't really tell for sure. I wish I had another computer so I could look at two at once. Oh wait, I could use Nik's computer....Ok, I'm going to go do that. Sam is at Nana's and I'm staying home with Alec, doing the boy scout thing tomorrow (sorry Ruthie, I'll call you tomorrow). Caitlin is downtown with friends and Nik is at work. Caitlin saw the orthopaedic surgeon today and he says her collar bone is not completely healed yet. So we go back in 5 weeks and then we'll probably be able to figure out a date for surgery to take the pin out. I figured out last year I spent 30 complete days in the hospital between March, 2003 and March, 2004. That's about 30 too many. Caitlin only accounted for 4 of those.

Thursday, May 6, 2004 10:30 PM CDT

Well, the brain MRI is over. We got there at about 5:30 and at 6 they came in and said they were an hour behind. She said it would be about 8 before they could get to us, so I remarked, "so you're 2 hours behind". She didn't really answer. I was not trying to be snotty, but jeez, I can add. So anyway, they did the MRI. She did well. I asked for a copy and she gave me the films, not the CD. So I'll probably go back tomorrow and get the CD's so I can mail them to Dr Allen.

I'm tired, she's tired and still not feeling great. The rest of her csf and blood tests came back negative so that's good news. I'm calling her Dr tomorrow to get the MRI results. Chris and I looked at them and in our inexpert opinion it looks bigger. But obviously, we don't really know what we're looking at. That's why I wanted the CD so we could compare.

On Saturday, we are going to Lukey's birthday. That will be great fun. Alec and Chris might not be able to go, they have a thing to do for boyscouts. But the girls will be there in force.

Wednesday, May 5, 2004 10:58 PM CDT

Sam has just not been feeling well. She's nauseated and having headaches again. She's doing well in her homebound studies. She and I went to the art institute today and she didn't feel well, so we saw the Monet, and left. She asked me if she was going to die. First I gave her the stupid answer and said "everyone dies". Then I got my head out of my a** and told her that I really didn't think so. Obviously we don't know yet, but I really don't think this is going to be life threatening. Like Dr Sood said, it's life altering, probably not life threatening. I told her I wanted grandchildren and she said she could promise one grandchild. She said she will give birth to one baby and adopt more. So I'm glad we got that settled. I will have at least 1 grandchild. I have four kids, was planning on at least 10 grandkids....

Sam's MRI is tomorrow and I have good feelings about it. Of course, the good feelings, the tumor won't be bigger etc, bring more we can't do anything til it gets bigger and therefore can't find out what it is. The important thing is keeping her from having to get surgery and losing more endocrine function. She's an awesome kid.

Wednesday, May 5, 2004 7:14 AM CDT

I feel better today. But it's early!!!!!!

Tuesday, May 4, 2004 9:40 PM CDT

For some reason, today has just been a really bad day. I am sad, pissed, depressed and sick in my heart. We didn't get any bad news or anything today, I don't know why I'm like this. So far, her blood tests have been normal and her body survey came back normal. So the histiocytosis X has probably been ruled out. She would have lesions on her bones, I guess. The blood tests being normal is good, if she has a germ cell tumor and the blood and csf are normal then it would most likely be a pure germinoma and those are very treatable with radiation (thanks for explaining that again, Mary Alice, I feel like a dunce sometimes).

Maybe it's just exaggerated MRI jitters, we all get them. Maybe it's trying to figure out when she will be able to have a normal life again. Maybe I'm depressed I'm not working, I miss my job. Our township supervisor could easily ask for a new milleage that would raise enough money to hire a bunch of us back. It would cost an average homeowner $1.25 a month, I guess I feel like I've been thrown away, I'm not worth that much????? My services aren't worth that much???? My saving a couple of lives over the last 6 years isn't worth that much???? It's complete bullsh*t. I think I will be making a phone call tomorrow to his office. I'm sure it won't make a difference but I think it'll make me feel better.

Sunday, May 2, 2004 10:07 PM CDT

Today Samantha and Chris spent the day at Aunt Ruthies house, helping Nana babysit. Nik came home from CMU at about 4pm and Caitlin was at church. So Alec and I got to spend the entire day together, alone. He informed me as I was going to bed, that we had a "very good" day. We watched movies together and played Lord of the Rings Monopoly. He's beating me so far, we'll try and finish the game tomorrow.

Tomorrow I will call the hospital and see if her bone survey results are back and I'll also check and see if her tumor markers are back. I doubt it but u never know.

I started getting the "pre-MRI" jitters tonight. The last 2 MRI's have shown increased size. There really is no reason to think that this MRI won't be any different. I must remember to call her endo tomorrow, still waiting to find out if she can get the injection pen.

Saturday, May 1, 2004 10:32 AM CDT

On Friday, Sammi and I went down to Childrens for her blood work, spinal fluid tap and skeletal survey. The Emla cream worked wonders, no tears no fears. The xray took a while, they took about 16 xrays of her entire body. Her brain MRI is next Thursday and the spinal MRI is on May 20th.

Please say a prayer for Savannah, who earned her wings on April 30 at 12:10 am. She was a beautiful girl and the journal that her mother has kept on caring bridge is inspirational. Her website is www.caringbridge.org/ar/savannah. It's hard to read, but worth it.

Thursday, April 29, 2004 6:03 AM CDT

Yesterday was an ok day. Sam had a headache in the afternoon, she said they feel like pressure in her head. Alec, Sam and I went for a walk, to get some ice cream. Alec got his badges at Cub Scouts, so he was very proud and happy.

We are going on Friday for the shunt tap, which is where they remove some csf from her shunt. There is a little resevoir under the skin and they just put a small needle in there and take it out. Much easier than a spinal tap. They're also going to take some blood. We will pre-medicate with the Emla cream and we'll also have someone from the child life office meet us down there to help get her thru it without too much trauma.

The medical supply company called yesterday and said that Sam's endo requested needles for her shots, not the injector pen. There may be a medical reason for this, but it might just be that it's cheaper and easier to get thru the insurance. So I will talk to him today and find out if we can get the pen approved. Sam says she'd rather have the pen. But she'll be ok with the shots, as long as we Emla her first.

We're waiting for calls from Childrens regarding the bone survey and MRI's. Other than that there's not much going on. Spring is here and that is a good thing!!!!

Tuesday, April 27, 2004 11:15 PM CDT

Today was a pretty good day. Samantha's teacher was sick today so another teacher came over for her homebound services. That was nice of her, to take time out for Sammi.

All of Sam's referrals have been approved and so tomorrow I start the phone calls to make appointments. Hopefully the appointments will be able to be made pretty quickly. We have found that the waiting will drive you crazy. You wait for referrals (not long thanks to our dr and her awesome nurse) you wait for the hospital to call you back with appt dates, then you wait for the appt. You go to the hospital and you have to wait to register in outpatient registry. Then you go to wherever the test is and you wait. Then the hard waiting, for the results. MRI's are the worst. So what I did last time was I called medical records the day after her MRI to find out if the results had been entered. Lo and behold, they had been. So I took the 20 minute drive downtown and got them. They were just preliminary but it gives you enuff info to get you thru the night.

During Samantha's hospitalization in January, from her shunt infection, she had a really bad reaction to an anti nausea medication she was taking. Chris and I were with her in the room, watching tv. She told us she couldn't stop grinding her jaw, we told her it was probably stress. We gave her a washcloth to put between her teeth so it wouldn't hurt. After a little while, she started only looking to the left, she would look at you if you talked to her, but she was having trouble talking, like she couldn't concentrate long enuff to formulate an answer. So we called the nurse and she kind of looked at her and didn't say much. I told her she needed to call the doctor. She did so. The neurosurg nurse specialist came down and took a look. They called down and got CT ready for her. In the meantime, Alec was having some sort of emergency and so Chris had to go home. The nurse and I rushed her downstairs. She couldn't close her eyes, her eye lids would flutter. The nurse said it wasn't seizures because she could talk to us during these episodes. The CT scan was good. So we went back up to the room, and she and I just waited there. During this, I just kept talking to her, telling her funny stories about when I was a kid, I was afraid for her to go to sleep. I kept crying, not bawling but a tear would go down my cheek. At one point, she reached over and wiped the tear off my face. It is a moment I will never forget. She was like this for about 2 hours. Later it was her legs that were freaking out. They didn't figure out til the next day that it was the Reglan that she reacted to. I will say it was the scariest 2 hours of my life. I honestly thought she was dying. Why am I writing about this today? I don't know.

This stuff is so scary. And honestly, we still don't know what we're facing.

Monday, April 26, 2004 8:04 PM CDT

Ok here's the deal. Dr Allen in New York, is leaning toward her tumor being a germinoma. They are highly treatable. Dr Sood thinks it's a Rathke's cyst or Craniopharyngioma. The Rathke's is pretty treatable, the cranios can be very problematic. So the plan is to do brain and spinal mri's, test her csf for tumor markers, do a bone study, which is just xrays of her entire body to rule out the hystiocytosis.

The mri's will hopefully be done next week and if the tumor is bigger they'll probably have to biopsy it. And that's where the problems with the hormones start. But let's take it one day at a time, shall we?

Thanks again to Mary Alice and Loice for all the assistance. (ps, Mary Alice, i got Dr Soods email address!!!)

Sammi, Alec, Carly and Chris went to the Imax theatre at Henry Ford museum to see Nascar 3-d. I bet they're gonna have a great time. I stayed home to nurse my headache. Nik is at work and Caitlin is visiting her friend Josh.

Have a great day all, even tho it's gonna be cold here.

Sunday, April 25, 2004 2:24 PM CDT

We got home at about 2pm today. We had a nice weekend, the weather wasn't the greatest but we all had a lot of fun swimming and sitting in the hot tub. We drove to Alpena (Sammi pronounced it Al-penya) so now it will be pronounced that way for all time in the Robertson household. All in all it was a nice weekend. I checked my email and I did get a response from Dr Allen at Beth Israel. He tells me that he did talk to our NS and they had a long discussion and came up with a plan of action. Unfortunately when Dr Sood tried to call me on Friday, I was at the grocery store and just missed his call by mere microseconds. I called him instantly back and was told he had just left. I know how busy he is but couldn't God have kept him in that office for 30 more seconds????? He and Dr Sood feel that she may have hystiocytosis x. I'm not sure what that is. I am having my crack internet team (Mary Alice and Loice) assist me in my search. Dr Allen's email refers to a bone survey she will need, I guess to see if there is any bone involvement, apparently this can get into the bone.

This is what is so tough about all this. She still is not feeling great. Headaches, nausea not all the time, not even a lot of the time but enough of the time that she's not able to do everything she wants. And it's been over a year now and we still don't know what she has. I totally understand Dr Soods reluctance to do the surgery, as it will stop all of her hormones from working forever. I know they're easily replaced, but why take the risk? She is getting hungrier tho, I'm anxious to know if she's gained any weight.

I think I'm going to call her endocrinologist tomorrow and ask him what exactly we're looking at if her pituitary stops working, due to surgery. I am flat out going to ask him if he thinks it's worth the risk. It is selfish to want to know what is wrong with your daughter? How long is she going to have to live like this?

Thursday, April 22, 2004 10:01 PM CDT

We're going out of town this weekend, so I probably won't be able to update. We're going to Oscoda for a little R&R. Sam is still not feeling great, she says her head is starting to hurt again, she says it's on the top of her head now, I think it's just pressure changes in her shunt from getting up in the morning. She's also been nauseated a lot. But on the good side, she says she's hungry all the time now, the megace must finally be working.

http://www.hometownlife.net/Redford/News.asp?pageType=Story&StoryID=29773&Section=Letters&OnlineSection=Letters&SectionPubDate=4/22/2004

If anyone's interested, above link is for a letter I wrote to the Redford Observer regarding their decision to lay off all dispatchers and 2 police officers. I'm now published!!

Wednesday, April 21, 2004 9:34 PM CDT

In re-reading my entry from yesterday, I hope no one got the impression I'm upset with anyone at Sam's school. Yesterdays entry was pure frustration. Chris talked to her principal today and I think we've got a handle on this. We're going to take her to school this week if she feels like it, otherwise we're just going to do homebound from now til end of year. That way everyone has a plan that we can stick to and we all have the same goal, to get Sam to 6th grade next year.

She did not feel good at all today, she said she was very tired all day. She felt hot to me but when I took her temp, it was normal. I just love her so much, its hard to see her just laying there. She went out and played for a little while at around 8pm. She said she thinks she's a lot hungrier, which is good. She ate pretty well today.

Alec had fun at cub scouts tonight, Caitlin and I went out for a very nice dinner at Olive Garden to celebrate her Sweet 16 yesterday and Nikolaas went to work. He's leaving in about 3 weeks to spend the summer with his grandmother at her cottage, we will miss him very much. I don't care how crabby I am, or whats going on, he always makes me laugh. And what better gift could he give me!!!!

All of our kids are awesome and I'm glad I had so many. HAHAHAHAHA

Tuesday, April 20, 2004 10:11 PM CDT

Well, Sammi didn't make it to school today and that caused a bit of an uproar so we have no idea what her status is. Apparently she can't go to school if she's on homebound school. Honestly, I have no idea what to do. If she starts going to school and gets sick they can't do homebound. If she feels better, it seems like we need to keep her home, just in case she gets sick again. This has been the most frustrating part of this whole thing, the school thing. It doesn't seem like it should be so complicated. I should be more worried about her health. Now I have to worry about if she's going to have to repeat 5th grade. This is crap. She's too smart for that.

Monday, April 19, 2004 9:08 PM CDT

Good news today. Sam went to school for a half day. And she wants to go tomorrow for full day. She's got lots of homework, but we're going to do our best to make sure she's ready for 6th grade. We may have to get her a tutor for the summer, especially in math. All the kids seemed happy to see her and she said everything went well, so hopefully we're on the way to going back to school full time.

Other than that, not much is going on. I got a call from a medical supply company to start the process for the growth hormone shots. And I'm still waiting for Dr Sood to call Dr Allen. I will be calling tomorrow to make sure the calls are being made. Her MRI is in about a month, so I think we'll wait for that before we make any major decisions, her endocrinologist said this was probably a good idea.

CAITLIN TAYLOR MARIE KIRKPATRICK WILL BE 16 TOMORROW!!!! Happy birthday Caity, I love you very much. Chris got her 16 very pretty roses and tulips. Caitlin saw leaves on the tree today and said that's what she wanted for her birthday. She's going to be busy tomorrow, going to a concert with her friends, so we're going to go out to dinner on Wednesday.

Please say a prayer for Savannah, a little girl nearing the end of her battle with a horrible brain tumor. She's a beautiful brave little girl. If you'd like to vist her guestbook, it's at www.caringbridge.org/ar/savannah.

Saturday, April 17, 2004 9:23 PM CDT

Today was a good day, we went to Greenfield Village and met my sister and her family there. Calvin the baby was very glad to see us. Sam got tired so we came home a little early but her and Alec are now at the drive-in with our neighbors, so Chris and I actually walked into town, had a nice dinner and walked by the river. It was a nice night. Nik and Caitlin went to Central for the weekend, so I'm going to pick them up tomorrow.

Dr Allen called last night and said he hadn't got ahold of our neurosurgeon yet, so there's nothing new on the medical front. Please pray that Sam can go back to school on Monday, it would be such a good thing for her. Thanks again for all the kind words in her guestbook. It's fun to read.

Friday, April 16, 2004 6:56 AM CDT

Well, we're home. Got in the car and the battery was completely dead. I guess we left the dome light on. Chris' co-worker, Michael was kind enough to leave the office at 0600 and drive over to the train station to give us a jump. I knew there was a reason Chris took the job in Toledo!!!! Well we saw Dr Jeffrey Allen at Beth Israel Hospital in NYC. First of all I would like to thank Mary Alice Dorschel for referring us there. She has a become a great friend and guidance counselor for me as we are trying to figure out what to do. I would also like to thank Adam and Jose at the 5th floor playroom at the hospital. They spent a couple of hours playing with Sam and entertaining her while Dr Allen and I talked and made copies and looked at MRI's. A big thank you to Nana and Aunt Ruth for watching Alec all week. Thanks to Chris for being supportive and not being too upset that he couldn't go. And a big fat thank you to Nikolaas for leaving his computer stuff all over my bed so when I got home from the very tiring trip, I had to remove and take apart his whole computer...Love You Nik. And last but not least, thank you to Dr Allen for seeing us a day early, we showed up on the wrong day!!!

In his opinion, we should strongly think about doing the surgery. He says her white blood count appears to be high, in the spinal fluid (he reviewed all her test results)and that indicates some sort of inflammation. He doesn't think it's a cyst, craniopharyngioma or dermoid. He says it could be hystiocytosis x, an imflammation of pituitary stalk ( i can't remember the name of that), a germinoma or a germ cell tumor. The germ cell tumor can spread into the spine. He says we should get some blood work for tumor markers, HCG and AFP. and she also needs a spinal mri to make sure nothing is going on there. He says not to worry about the Chiari Malformation, it can be caused by the shunt and she did not have the malformation when all this started. he said it's very small and no big deal. He's going to call our Neuro guy and I'll let them hash it out and then call me with a plan. I'm tired and going to bed, but thanks for all the messages in the guestbook, Sam and I will look at them together later. She's sleeping.

Monday, April 12, 2004 6:03 PM CDT

Samantha has had another good day today, she was skipping, humming and generally being a normal little girl. I have been so happy this week, seeing how much better she feels. We are on our way to New York, we'll be leaving around midnight tonight from Toledo and we'll get there around 3pm tomorrow. Wish us luck and I'll update as soon as I can. We're bringing the laptop with us, so I might be able to from New York.

Friday, April 9, 2004 11:49 PM CDT

Sam had another good day today, she played outside all day with her best friends Carly and Rachel. She was like her old self. It was so good to see. Maybe these meds are working. I just hope we're on our way to getting back to normal. Chris and I have both noticed she looks different, better.

I would like to say a special thank you to T.H. for her email and prayers. I might not know you very well T, but I know that you are a wonderful person. I've always known that. Thank you so much.

Thursday, April 8, 2004 10:17 PM CDT

www.caringbridge.org/page/jakegriffin

Please say prayers for Jake, who passed away this morning and his family. My heart is broken for him.

Wednesday, April 7, 2004 7:07 AM CDT

Well it looks like we're going to New York next week for another "second opinion". The docs name is Jeffrey Allen and he was recommended to us by Mary Alice, Lizzie's mom. She says he just "loves" this area of the brain. He's at Beth Israel Hospital in Manhatten.

Sam took her first doses of the headache med last night as well as the appetite stimulant, Megace. She asked for some peanut butter and crackers and said, "I think it's working". She promptly had 1 cracker and was done. So I don't think it's working yet:). For some reason, she looks very peaceful sleeping today. The other day her, Nikolaas and I were in the car and she asked me why God gets credit for all the good things that happen but when you try to blame God for the bad things, people say, "God is not punishing you, he doesn't make bad things happen". I had no way of explaining it. I don't understand it myself.

We watched 24 last night, she was so excited about watching this show. Then I had to go get Nik from work. She wanted me to leave the light on, but when I got home, she had gone downstairs to lay down with Chris. Her sudden fear of being alone, I wonder where that's coming from. She's been like this for a couple weeks, when I go to pick up the kids from school, she goes with me even when she doesn't feel well. She used to be fine being home for a few mins by herself. She might be afraid she's going to get sick and be by herself. I'm afraid to ask her, she's very sensitive about everything these days and I don't want to upset her. Hopefully we can get her back in school after Easter vaca and she'll be a bit more confident. Ok, I hope everyone has an awesome day, it's going to be very nice out today.

Monday, April 5, 2004 7:48 AM CDT

I'm just sitting here filing for unemployment. Apparently I got laid off last week??? It's all a blur. Yesterday we went to Chris' moms house for the day, Samantha loves going over there. Nana's house is a peaceful place for her. She threw up before we left the house, no idea why. She also had some really bad shoulder and chest pain yesterday, she was crying and uncomfortable for about 45 mins, then the meds kicked in and she felt better. I had to give her another pill around 11pm, she said it was starting to hurt again. We have an appt with her pediatrician today at 11:30 to see if we can get the migraine meds started and get her back in school. Dr Frim also mentioned starting her on megace to get her appetite going again. It's an appetite stimulant that kids on chemo take.

I think she's a bit nervous about going to school but I also know she misses it a lot. It will go far is getting her to feel like a normal kid again. She is very apprehensive about the growth hormone shots but I think she knows she'll get used to it and it won't be a big deal after a little while. Ellen

Saturday, April 3, 2004 11:08 AM CST

Well we returned from Chicago last night around 1am. We had a really good time, got to go to the aquarium, which we've never done before. And lots of visits to the American Girl store. God I wish I had come up with that idea!!!!

Dr Frim says he thinks the tumor is an epidermoid or dermoid. Dermoids have been known to burst and cause meningitis. He says to do MRI's every 3 months and as long as it's not getting bigger, there's really nothing to do about it. If it gets bigger there's a chance of bursting and meningitis again, so at that point we would do surgery. He's very worried about her headaches and lack of growth. He says she needs to be on meds for the headaches, like migraine meds. This will help get her back to school, our number one priority. He says she needs to be on the growth hormones like now. He says her sexual hormones, altho they're low normal now, are getting lower. They're supposed to be getting higher, she's 11 years old. So he says they will probably have to be replaced also, eventually.

He told us she has a Chiari Malformation. You have 2 cerebral tonsils, one on each side of the brain. One of hers is lower and a bit of tissue hangs down into her brain stem. I looked up a bit about this malformation and the symptoms include headaches and hydrocephalus. hmmmmm wonder if this has anything to do with her current situation. I asked him why no one else had ever told us about this, he says if they weren't looking for it, they wouldn't see it. well i don't think he was looking for it and he saw it. so i am kind of anxious to talk to our neuro guy about that. i think he's on vaca tho. So i am glad we went, we got some good info and we are focusing on getting her back to school.

Thank you for all the visits to her guestbook, she loves reading the messages left for her.

Beth's mom and dad got good news this week, her spinal and brain mri's were clean. Thank God.

Tuesday, March 30, 2004 0:05 AM CST

This has been a really good day and a really bad day. I'll get the bad stuff out of the way first. I did get laid off today, our vote was not passed. I had to leave work, I couldn't breathe in that building for one more second. But my bosses and co-workers were very understanding and let me leave. I will miss my job and the people I worked with. So, on to the good news.

Dr Sood talked to Dr Sanford from St Jude. They agree there is something there, some people from St Jude think it's a tumor, some don't. But Dr Sood made a very convincing case for waiting. Her growth hormone levels are now officially low and a few other things are low normal but if he does surgery or even just a biopsy, it will mess up all her hormones forever. He said while he loves to do surgery, he just can't justify it as of yet. They will follow her every 3 months with mri's and if her symptoms get worse or she starts having more hormone problems, they'll reconsider. We're still going to Chicago on Wed, really looking forward to that. I think she felt much better after we told her she wasn't going to have to get surgery. She's even thinking about trying to go to school on Wed. So that's very exciting. She misses school and I know all her friends miss her. Back to Dr Sood for a moment, I had some concern that due to the rarity of tumors in this area, he wouldn't have enough experience to do the surgery. He told us today that he does about one case a week. He had one last Thurs, a large craniopharyngioma and has another one this Thurs. That sounds like a lot of cases to me and that made me feel much better. I'm going to sleep now, I'm going to sleep for 12 hours and when I wake up, I will feel much better. That's the plan anyway!!!

Sunday, March 28, 2004 9:07 PM CST

Well, Sam is still at Nana's, spending the night with her little cousin, Lilly. She had quite a bad headache earlier, thank God for Tylenol #3. They're always on the left side of the front of her forehead. Her tumor is on the left side of the pituitary stalk, I wonder if that's why the headaches are on that side. Chris, Sam, Alec and Nana played mini golf today and I hear that Nana "kicked butt". Caitlin and I went to the "The Passion of The Christ" and it was a very awesome movie. How people could eat popcorn during that movie is something I'll never understand. Tomorrow is the appt with the neurosurgeon, so wish us luck and I'll update tomorrow night. My last night of work??? We shall find out.

Saturday, March 27, 2004 11:14 PM CST

Welcome to Sammi's new web site. I thought this might be easier for people to keep up with what is going on with Samantha, especially people from RTPD (going to miss you all!!)

A year ago today,at age 10, Samantha was diagnosed with meningitis and a pituitary mass. During the year she has suffered headaches, nausea and she has not grown in at least a year, nor has she gained back the weight she lost while being sick. She now weighs 55 lbs and is 136 centimeters tall. 2 years ago she weighed 55 lbs and we're not sure of her height then, but in may of 2003 she was 136 cms. She is now 11. So that is a main concern right now. Her mass had gotten smaller in july, but is now increasing in size again. In December, she had a lumboperitoneal shunt placed for post meningeal hydrocephalus. In Jan 2004, she complained of abdominal pain. After about a week of shuffling her back and forth to Childrens, they tested her cfs and found a rare infection, bacillus. So they admitted her for 7 days of antibiotics and placement of a new shunt. She is no longer attending school as she has been having trouble sleeping at night and sleeps til about 10:30 every morning. Almost every morning she wakes up with a headache or nausea. Sometimes she has chest pain from the tubing of the shunt, which is inserted into her spinal column and the tubing comes around to the front near her belly button. The tubing is placed in her upper abdominal area and drains harmlessly into her abdominal cavity. Her teacher, Ms Adolf, comes to the house twice a week for homebound schooling. She usually feels ok around late afternoon and then as night approaches, she gets headachy again.

We are going to Chicago on Wed for a second opinion at the University of Chicago. We're also going to mix a bit of fun into it, visiting heaven on earth for samantha, The American Girl Store. We'll also go the the Water Tower Place mall, where she loves to ride the express elevator. It goes very fast. Chris and I will be going to see Dr Sood, our neurosurgeon at Childrens on Monday to decide about a biopsy. We tend to want to do this, so that we can find outwhat this thing is. Dr Sood has said that he will probably not be able to resect the tumor, due to it's fragile location, on the pituitary stalk, which connects the hypothalamus to the pituitary. So please say a prayer that we will all have the strength to make the right decision for samantha. She has been fairly crabby lately, but who can blame her. We're all crabby lately, except Alec.

Chris, Sammi and Alec spent the night at Nana's tonight, so Nikolaas, Caitlin and I spent a quiet night at our house. I think we're all preparing for a bit of upheavel next week. I will be laid off on Wed (99% sure) so that's a bit unsettling as I provide the health insurance for our family. My insurance is much better than what Chris' job offers.

Please send messages to Sammi, her new thing is getting email and she has some new penpals from a message board on yahoo for pediatric brain tumor survivors.

Saturday, March 27, 2004 11:08 PM CST

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