History

Sunday, December 30, 2007 8:21 PM CST

Well Sam and Alec are staying at Nana's til Tuesday and so I believe that means I will be alone on New Years Eve. I guess it's good practice, someday the kids will be gone and it'll be just me!!!!

I'll update more tomorrow with some new pictures. Sam is still feeling the same. I found a new pain clinic that has opened in our area. I'm going to try and get a referral. It can't hurt. She had a weird rash on her face yesterday but she says it's gone today. I worked 42 hours in the last 3 days so I'm going to bed....

Tuesday, December 25, 2007 10:20 PM EST

MERRY CHRISTMAS....We spent the night at Chris' house so we could both be there for Christmas morning. The kids got up around 8:30. They had fun but it was a pretty quiet day. Chris made breakfast and I made dinner. It turned out pretty well. Chris can tell you that when I cook, something always goes wrong. I never finish everything at the same time. Today everything was perfect. Sam got a lot of American Girl stuff (Nik I know this drives you crazy) and some other doll stuff and an ink set from Greenfield Village and some other stuff. Alec got a PS3. He's pretty darn happy.

Please pray for Nicholas Carter who ended up in the hospital from an adrenal crisis (caringbridge.org/visit/nicholascarter) and for Greg Skalaban whom we met at camp over the summer. Greg is nearing the end of his battle and we are praying for peace and comfort. He ended up being hospitalized during camp and has been fighting ever since. And please pray for the Otts, as they face another Christmas without their daughter Stephanie. They do much good in her name. We love you!!

Sam has really been struggling with her headaches and back aches and now neck aches. She really had a hard time in Chicago this weekend. I even thought about getting her a wheel chair but I'm not remotely ready for that. She said she almost asked for one.

Ignore the mess in the background of the first picture. It is Christmas after all.

The second picture is a really cool manger we saw at the Museum of Science and Industry. They had a really cool Christmas tree display. What a great city Chicago is. I can't wait to retire and move there.

MERRY CHRISTMAS.

Monday, December 17, 2007 11:21 AM CST

I just shoveled for about an hour and I think I'm going to have a heart attack and/or puke. So I'm going to take a nap. Sam is babysitting at her aunt's house so I think she's feeling better. Alec is at Chris'. Caitlin is going to Target with her friend Caroline and Nik is downloading music onto his girlfriends I-Pod. Abbey is going crazy, meowing and running around. Now, if you know Abbey, you know she never meows. I have no idea whats up with her. Amber and Amy are snuggled up in their guinea pig house. School was cancelled today. Alec was sooooooooo happy. Tomorrow is our only drs appointment for the next 2 weeks. Now that's priceless.

Saturday, December 15, 2007 7:37 PM CST

Well, we're settling in for a blizzard...8-12 inches of snow by tomorrow night. So that means a long trip into work for me in the morning and probably a longer ride home. Sam is at Nana's...Alec is at Chris'. Sam called me a few mins ago and said she has a fluid pocket on her back. Now if you've been with us for the last 4 years, you know this could be bad. It's not on her spine like the first big one. She said it's on the side. Which is where she had one when she had a pseudocyst. But she couldn't have a pseudocyst because her shunt drains into her heart now. So she's a little concerned. I told her to call me if it gets bigger.

Ok, I'm eating a lean pocket and then going to bed. 5:30 is going to be awfully early tomorrow. Wish me luck!!

Wednesday, December 12, 2007 8:41 AM CST

Well, we couldn't go to Sam's appointment. Alec starts school at 9 on Wednesdays. He couldn't be late today or miss school, because he has a concert tonight. Chris' car broke down and so he couldn't take him to school. I had an alternative plan that I was willing to finance but it didn't work so we had to miss. God only knows when we'll be able to reschedule. This is the kind of thing that p's me off. This was totally doable and now we can't do it. So hopefully we can get another appointment quickly, hopefully I'll have the day off and hopefully we'll be able to arrange our day to involve the kids. Nuff said.

*****Later.... I knew this would happen. We can't get Sam into the pain clinic until January 16, 2008. That's about 5 weeks from now. Her head is really hurting today. But that's ok...we can wait 5 more weeks...No problem...(just kidding, sarcastic). We went and met with the social worker today. Sam met a girl she kind of knows who has had some health problems this year and missed a bunch of school. She's also had some adjustment problems going back to school after an extended absence. It was a nice meeting Sam said. We go back next Wednesday. When she goes back to school, she's going to go to 4 classes a day. That will be Jan 28. Only 12 days after the pain clinic appointment. It would have been nice to have this extra 5 weeks to have things in motion to have her feel better. Can you tell I'm still mad? OY

Tuesday, December 11, 2007 7:58 PM CST

I hated to take the picture of Sam's magazine cover off the front page but you can still see it if you go to journal history. She's doing about the same. The strep throat stuff is better, no fever but headaches are about the same. We are seeing the pain specialist tomorrow. And Alec has his Christmas concert tomorrow night. It's been raining here all day. Yuck. Ok, I'm going to bed, it's early I know but I've been up since 5:00 am and I'm tired.

We'll update tomorrow. Love, Ellen, Sammi and Alec

Saturday, December 8, 2007 12:37 AM CST

Ok......back online. This time it was some kind of software problem. I don't know.....but it's fixed and that's all that matters.

Sam is not doing well the last couple of days. She is supposed to go to the Nutcracker with her Nana and cousin Lily, they do it every year. But she's had a horrible headache, sore throat and fever for the last day. We're just waiting for the puking to start. Hopefully it won't. But if it does we have to take her to Wyandotte Hospital and they'll ambulate her down to Children's. Adrenal insufficiency is nothing to fool around with. Even the 20 minute car ride to Children's is too long so our local hospital is a mile right down the road. So we are stress dosing her and waiting it out.

Nothing new on the school front. The last letter we had from the doctor excusing her expired so we have to get a new one. We saw the social worker yesterday and she thought we should have a goal of starting school with the next semester which begins the last week of January. So that's what we're shooting for. We're going to see the social worker once a week for now, to get Sam comfortable going into the building etc...We'll get there, it's just going to take some time.

We've been watching lots of movies the last couple of days. Sound of Music is on now. I'm trying to do some shopping online. That's about it. Ohmigosh...I almost forgot. The magazine featuring, you guessed it, SammiJeanElisabethRobertson has been mailed to 55,000 doctors, donators and patients around Michigan. I'm going to take it to work and see if I can download it somehow or scan it or something. It's not on their web site yet but it should be soon. It looks amazing and the article is really nice. She's a star!!!! She's amazing and I just love her to pieces.

Love, Ellen and Sammi

****We're on the way downtown, no puking but her neck hurts and head killing and still has fever so they said to bring her.

***Sam has strep throat, which can make you feel really really cruddy apparently. Her fever went up to 104. They admitted her for the night to make sure it wasn't her shunt and we got home a few hours ago...Phew.....what a relief!!!

Wednesday, November 28, 2007 9:14 AM CST

Well Sam did not make it to school and we are going to put her back on homebound until at least Dec 12, when she goes to the pain specialist. I had to work the last 6 out of 7 days to pay back for the week before so as far as I've heard she's been feeling really cruddy. Even I have a headache today.

Sunday, November 25, 2007 9:00 PM CST

We're going to try school again tomorrow. I hope she makes it there. I'll be at work so it's up to her and her dad. I know it's hard for her but this is something she really needs to do....

I've worked 64 hours in the last 4 days and I'm back tomorrow for more fun!!! Thanksgiving was fun. I'm really excited about Christmas more than usual for some reason this year. Can't wait to see Nik and Caitlin, probably.

Please visit letsgivethanks.com and send an email postcard to a serviceman or woman. We owe them a lot.

Please pray for AnnaJane who went to heaven early this morning. She was a beautiful brave girl. caringbridge.org/ok/annajane.

Take care all and I'll let you know tomorrow how school goes.

Tuesday, November 20, 2007 9:02 AM CST

I'm just sad today. Sam didn't go to school yesterday, she's not going today, I don't see her going tomorrow. Her head has been killing her. Chris is going to take her downtown today but they're not going to be able to do anything. I have to take Alec to see the dietitian today. He hates that. So do I. The dietitian is really nice but it's just a pain. Alec freaks out because he's not eating any vegetables yet. Oh well, we'll go today and get it over with.

Pray for Sam to start feeling well. Seriously, I don't expect anything tho. I'm working a lot this week and I feel bad leaving her but I owe people days for last week. Blah!

****Neurosurgery doesn't want to see her. Even tho it's been 6 months since her last ICP monitor. Even tho her headaches are so much worse than they were over the summer. So they're shipping us off to a chronic pain doctor at Childrens. We can't get an appointment until Dec 12. At least I'm off that day and don't have to take a sick day. I'm up to 35 whole hours of sick time. Most people I work with have a couple of thousand. Oh well...I called today for a referral, I'm sure they'll approve it. Alec and I had a lot of fun blowing leaves today. It was really nice out, almost 60. Winter is coming tomorrow tho....BRRRRRR

Friday, November 16, 2007

Hey everyone! Blah, the last few days have been horrible for my poor head...my legs have been aching too. I've just been feeling REALLY crappy the last few days. Eh, like I said to mom, maybe I'm getting the Flu now! Oh wait, I got my vaccine...anyway, I'm supposed to start school Monday, but especially if these bad headaches keep up, I really don't know if I can. Every time I tried to go back to school last year, I just physically couldn't handle it. It sucks, it really does.

Dr. Moltz called back(or we called her)today, and everything is normal. So, I'll go see her again in three months.

My teacher is coming over again today soooo I'll update when I can if anything comes up.

Love, Sammi Jean

Tuesday, November 13, 2007

Hi, this is Sammi again....first off, if you didn't read mom's post yesterday, go to journal history...there are a lot of friends who need prayers!

Today has been a bad day so far...my head has been hurting really bad, and my legs were hurting this morning too. I took a Lortab a couple hours ago, and already I feel like I need another one for my head. Also, in case you did not read mom's post yesterday, the doctor appointment with Dr. Sood went OK. He said my forehead definatly was more pronounced but it cannot really cause any trouble and is just from my skull growing. He said if I wanted to when I was older, he could inject liquid bone into the area that would harden and make it more smooth. But I don't think I'll want to. That's pretty much all that happened at the appointment...still no answers. I'm still nauseous, tired, and having headaches all the time. Tomorrow, we'll get the results from my Endo appointment when mom takes Alec downtown.

This weekend we're going to a Pet Expo and getting another Guinea Pig though! The only friend Amy(yes, we have confirmed she is a girl!)has is Abbey...and all Abbey does is poke her paw through the cage and poke Amy in the face while she's trying to drink! Then, as soon as Abbey has the ability to actually play with Amy(like when she's out of her cage)she decides Amy the pound and a half guinea pig is too dangerous for a 21 pound cat like herself to be associated with and runs every time Amy gets too close. Soooo, yea.

Mrs. Keroub, my homebound teacher is going to be here soon so I have to go but either mom or I will update tomorrow.

Love, Sammi Jean

******EXTRA PRAYERS NEEDED*****For Sydney Sims. This beautiful, brave girl is suffering more than is necessary but hopefully this will get her cancer under control. If you do nothing else tonight, please take a moment to ask God for comfort and peace for her as she undergoes 8 more day of the most intense treatment I've heard any child have to go thru. fl/sydneysims....

Sunday, November 11, 2007 6:43 PM CST

I'm putting out a big prayer list tonight...

Elizabeth - Elizabethannenews.com - Such a cutie, we met her at Camp Sunshine this summer. She has had a recurrance. Her family did a lot of work at the pumpkin festival.

Greg - I don't have his website but he's from Camp Sunshine and is really struggling with a secondary cancer that is incurable. His parents are really struggling.

Lily - www.caringbridge.org/visit/sweetlily - She's been having headaches and her parents are very worried. She is a sweet baby...

Anna Jane - www.caringbridge.org/ok/annajane - This little sweetie is fighting hepatoblastoma and they are out of treatment options.

Kara - www.caringbridge.org/oh/kara - Went to see the pain specialist in Chicago and they are trying her on another pain med but it's very frustrating....

Zoe - www.caringbridge.org/mi/4theloveofzoe - Her scans are coming up...She's a neuroblastoma survivor and we just love her and her family.

Isabella and Madeline - www.caringbridge.org/visit/dunntwins
These two babies were born with stage four Neuroblastoma and are now getting their second round of Chemo at Childrens Hospital of Michigan.

Jacob Reith - www.carepages.com (JacobReith) - trying to get his counts to rebound so he can continue his treatment for a cancerous brain tumor. He's from Michigan also.

CJ Shaw - www.carepages.com (CJShaw) - He's facing more surgery this week for an unknown mass in his brain. He's very cute and treated at Childrens also.

Helena - www.carepages.com (HelenaWolschon) This wonderful girl was severely injured in an auto accident in the township I work in and I was working that night. She's doing so much better but has a long way to go....

Sydney Sims - www.caringbridge.org/fl/sydneysims - Sydney, who has already been thru so much, is starting a new very painful treatment next week. She needs prayers for comfort and healing.

Well, that's all I can think of off the top of my head. Tomorrow Sam sees the neurosurgeon to check on her forehead. Even Caitlin says it looks different. Caitlin is home for the weekend but going back tomorrow. Ok we'll update tomorrow when we get home!!!

*****It's tomorrow. Dr Sood said first of all he heard about her great speech and was very proud of her. Then I told him she's going to be on the cover of the CHM magazine. He looked like a proud doctor. He said "Wow" when he saw her forehead but says that's just the way it's healing. When she's older she can get liquid bone injected in there if she wants to even it out but Sam wears her scars and crooked forehead like a warrior and I don't think she's interested in getting it fixed. Maybe she'll change her mind when she's older. I love her anyway, crooked forehead, the scar that goes all the way across her head, her back scars, abdominal scars and the cute one on her neck. It's what makes Sam, Sam, and I for one like her just the way she is!!!!

Friday, November 9, 2007 12:26 AM CST

We went to see Dr Moltz today, the endo. Sam's not growing because she's not eating because her head hurts because her diabetes insipidus is not under control because she had a little cyst in her brain. Anywho, we're trying a new dosing schedule and she said it should take about a week to get it right. And then hopefully she'll be on a schedule. The problem is now, she's taking the DDAVP up to 4 times a day, whenever she needs it. And for about an hour before and after she "dumps" urine, she loses her appetite. So that's 8 hours a day right there she's not remotely hungry. It will hit so fast, she'll be excited about dinner or whatever and then by the time it's done, she's lost her appetite. And maybe that's why her head is hurting, she's being dehydrated a number of times a day. She's 5 foot 1.5 inches. And weighs 83.6 lbs. She's the same she was in July. So I told Sam, my goal for her in the next 18 weeks (next appt is March 14) is to be 95 lbs and 5 foot 3. I don't think it's unreasonable. And also, she should be on a schedule by the time she goes back to school on Nov 19. Ok, now she's looking at me like I'm crazy. I'm going to be the eternal optimist and say it's going to work because otherwise I have nothing else to hang onto as far as a normal life for her. I don't think it's unreasonable. Like Sam said before, "Mom, you be optimistic, I'll be realistic". I need her to be wrong. I promise not to throw it back in her face....

Ok, Chris is going out of town for a week so I'm off for 9 days. 9 days of bliss. So what did I do today?? I forgot to take Alec his lunch money. He had a dollar. He's probably starving. I feel horrible. If this is a sign of how I'm going to handle the kids this week, it's a bad sign.

After Sam gave the speech on the 1st, the Development office from Childrens sent her a beautiful bouquet of flowers. We stopped in there today after her appt to thank them. OHMIGOSH....Sam is not only in the magazine....she's on the COVER. She's a cover girl...And they mail it to 55,000 people..... I'm just blown away.

Ok, I gotta go clean. We have a busy weekend planned. Sam's homebound teachers daughter might come over tomorrow to play American girl dolls, then we have a wedding and Caitlin is coming home and Rachel...(see cutie girl above) is going and Caitlins best friend Courtney is going also. And then on Sunday, we're going to Mrs Homebound Teachers church. And then we take Chris to the airport. And then we start our week adventure.....No working, driving, (except for 3 appts down at Childrens next week arghhhh) etc. Just relaxing and enjoying my kids. Priceless.

Candy - Thank you for the inspirational book...it's just beautiful...I love books, any kind, but this one is just gorgeous.....Maybe we can meet at Sandy's one night next week????

Thursday, November 1, 2007 8:16 PM CDT

This is Sam giving her speech at Opus One, a restaurant in Greektown. It was a celebration of 120 years of Children's Hospital being open. Sam met Edsel Ford and his wife and I'm sure there were other famous people there. The gentleman at the side of the picture is the president of Children's. She also met Lisa, of the Blaine and Lisa show. It's a morning radio show that I, coincidentally, have just begun listening to. Lisa was one of the adult speakers, a former patient at Children's. Apparently Lisa went through a lot of the same things Sam is going through now. I stayed home with Alec. I'm sure there will be other speaking engagements tho. They really seem to like her there. Here's the other picture.

Sorry for the red eyes. I'm also going to put a picture of Sam up from last night, carving pumpkins. This is Sam's normal face. She is able to smile on command. She always looks so happy in her pictures, but really, on the inside she's hurting. We're working on some stuff for school, meetings and such, to get her back by the 19th of Nov, the beginning of the next card marking. I think it's doable. Here's the pumpkin picture.

Ok, I have to work tomorrow so I'm going to bed. Take care and pray for Helena, Sydney, Drew and any others I'm forgetting tonight....

*****Look at the photo above. See the right side of Sam's forehead. My sister, who hasn't seen her in a few months says her forehead looks different. I've noticed it and mentioned it to her reg doc, she didn't think much. I called neurosurgery this morning, they haven't called back yet. It's definitely more noticeable than it was before.

Wednesday, October 31, 2007-Happy Halloween!

We had fun in New York. We spent all day Saturday sitting on a bench trying not to get wet. It rained all day. We saw Kelsey and her family, Lexie and her family, Sweet Lily, OH wait, Sam has decided to update, I'll let her continue....

Hey everyone...sorry to stop cold turkey on you but the last couple months I've been either feeling like crap or doped up on Hydrocodone or Tigan.(that's a new one for nausea). The Depakote is, I think, working a little better but I've detected a pattern. A medication works for a couple months then tapers off and the headache problems start all over again. And I'm still having a lot of headaches and the depakote can't help nausea and tiredness and all that. The only side-effects I've noticed so far is around 7:30, 8:00 at night I'll get tired(and grouchy) all of a sudden and yesterday I had some ear ringing.

New York was really cool...the last time we were there it was because we still didn't know what type of tumor I had and we were getting a 2nd(or third)opinion. We had a sleeping car on the way there and of course, we went to the American Girl store!! We met up with Alice,Nancy, Lexie, and Emily there and had a lot of fun. Tonight I'm not going Trick-or-Treating because I doubt I could walk that far with how sensitive my back is. I'll just hand out candy and find some last minute costume to put together for that.

Next time we'll have pictures...mom has to figure out the process AGAIN.

Love, Sammi Jean

Wednesday, October 24, 2007 8:35 PM CDT

OHMIGOSH. Just one of those moments that catch you by surprise. I have a sister named Melanie who lives in Texas. She and I share paternal DNA. I never got to see her as a child because they lived far away in Michigan and then Arizona and finally Texas. She just called me, I haven't talked to her in 15 years I bet. Last time I looked, she was like 11. Now she's 37. Whew. I think she said 37. She looks like an actress named Kay Lenz. That's what I remember. She talks with a Texas drawl, much like my sister Mary. My sister Jenni and I talk like normal people....hahahaha. The donor of the paternal DNA we share is apparently dying in a hospital in Portland Oregon. She has to make some decisions about DNR and stuff and was kind enough to call her "missing" siblings to see what their thoughts, if any, were. I really don't have any, he left when I was 4 and Mary was 3 and John was about 3 months old. I went to visit him and his mom, my namesake, Grandma Ellen, about 5 years ago, 3 months before Sam got sick. I love my grandma. She always kept in touch with us and we'd see her on holidays. She lived in a little house in Detroit, 1933 Green St. I wonder if that's why green is my favorite color??!! Grandma will be 91 in December. I hope I take after her side as far as longevity goes. Her mom lived to be 96. My mom was 51 and her mom was 52 when they died, so GO Grandma Ellen. So thank you Melanie for calling me. It means a lot that you included our thoughts in your decision. I just wish I could have helped you. But I'm glad for the blessing of talking to you tonight. You're my sister and I do love you. Oh and the weirdest thing??? She has 3 sons, Nicholas, Alex and Samuel. I have four kids, Nikolaas, Alec and Sammi. OH and Caitlin. I think it's very odd that our kids have the same names. Like long lost twins that find out all the things they have in common. Weird!!

Tuesday, October 23, 2007 8:04 PM CDT

Well, Sam had started taking the depakote without me knowing it. I was at work for the weekend. But it seems to be working. She's better, not great but better. She is going back to school next week. It makes her a little crabby but that's normal for her, since she gets crabby when she doesn't feel well.

Today was a good day. She has been chosen to have an article written about her in the Childrens Hospital magazine. It's mainly about her and her dolls. She's made quite a few medical play dolls. The one they use in the hospital is one she made for kids who have to have a shunt revision. They take the shunt out and leave in an EVD. You have to walk around with a siphon or something hanging on your IV pole. But it helps the kids and shows them what it's going to be like if they have to get a revision. She's done casts, iv's and her latest project is a "craniotomy doll". We have a piece of aluminum to use for the titanium plate and all kinds of stuff. It's pretty cool. The photographer is from the Detroit News and she seemed to love Sam. She took a lot of pictures of her.

We also met the Dunn Twins. (visit/dunntwins). They are about 3 months old and were born with neuroblastoma. They are so darned cute. And we met their mom and grandma. I felt like we were meeting royalty. It's cool to meet other families.

Sam and I are going to New York this weekend for the Great Pumpkin Festival in Central Park. It's a fund raiser for Camp Sunshine. We feel like it's a good chance to give back to Camp Sunshine for all they've done and brought to our family. We're going budget all the way, but thanks to a generous anonymous donation, it is totally doable. We are taking the train and staying at a hotel in Jersey. We'll be back early Monday morning. Hopefully I can get part of Monday off, I don't even know if I can but we were meant to be there this weekend. So thank you.....

We're going to have fun I just know it. And getting her back in the swing of things, active and seeing her Camp Sunshine friends I know, will be a good thing for her.

Oh yeah, after her speech at the TPC of Michigan, they want her to speak again next Thursday at one of the swankiest restaurants in Detroit. It's a fund raiser for Childrens. There will be 4 speakers. The president of Childrens, the Chairman of the Board, a patient from 50 years ago, and Sam. Quite a distinguished group if you ask me. The name of the restaurant is Opus One. Who knows what all the public speaking will lead to. If anything, it helps with her self esteem and you can never be too comfortable with public speaking.

Ok I have to work tomorrow, so I'm off. We'll update when we get back.

Thursday, October 18, 2007 6:50 AM CDT

Sam has felt a little better the last couple of days I think. She goes to see the neurologist today. We were denied a referral for the headache clinic in Ann Arbor. We can appeal it. I'll wait and see what happens at the appt today but that doc has already told us there's not much more she can do. Her homebound teacher came over yesterday. The same one she had last year. Which is good, because she's really nice. 3 of the classes she's taking, she can't really do from home. Chorus, Geometry and Spanish. Oh and Science is a lot of experiments. She hasn't had any real math in 2 years. This sux.

*****Sam's dr appt went ok. The doc says no new meds are going to help her altho she wrote her a script for depakote which I'm really not interested in putting her on. She also wants Sam to return to school part time on Nov 1. She'll go in the afternoons. She recommended we go to TADA...Michigan Headpain and Neurologic institute in Ann Arbor MI. She's going to write a letter to our insurance carrier requesting they approve the appeal we'll file when we get her letter. Sam's teacher came over today and was so nice. She talked to us about talking to the school to make sure they're doing all they can to help her. I've had some resistance from them re: IEP's, etc... And getting her some help socially. We might even start going to church, we need to get out of this rut and off the isolation island we're on. I'm excited. Mrs K said her church has a good kids group and so we're going to go next Sunday. Going back to school will be good for her, I'm excited.

Sam got her new guinea pig cage in the mail. It's huge. She's so excited and I'm looking at a very happy guinea pig. We put a paper bag in there from Hallmark and she's been playing in that bag for about 2 hours.

Today is Alec's 13th birthday.....I took him shopping for his birthday. He had a really good day at school and after school, which I'm glad for. The teachers decorate the lockers of birthday kids and they announced his birthday at lunch time to the whole school. He had a really good day.

Today was a good day, we're tired but hopeful.

Friday, October 12, 2007 8:50 PM CDT

Sam's still feeling like crud but today we got some good news. They are 99% sure the cyst isn't back, they're just seeing the side effects of better quality MRI software than they had 18 months ago. We are waiting to see if we can get a referral to the Michigan Head Pain and Neurologic Institute. They handle only difficult cases, which Sam is.

Our computer is back and working just fine!!! Not much else going on.

Tuesday, October 9, 2007 5:08 PM CDT

Sam is going back on homebound schooling. Which means the extra nice and really cool home teacher she had last year will be coming back, but not to give instruction. 45 mins twice a week is what she gets. I also had to tell Sam that she won't be graduating with her class. She didn't say much. The director of spec ed I talked to today said a lot of medically fragile kids take longer to graduate. I talked to Alec's psychiatrist about it a little and she said to tell Sam that in the big scheme of things, this isn't a huge deal. I know this and if you're reading this you're probably an adult and you know this, but I don't think Sam is going to get it. I'll try and explain it to her. I have to work the next 2 days so we'll talk more over the weekend.

Haven't heard back from Dr Merchant yet, but that's ok, I really don't think he's going to say anything different. I know he's extremely busy. So I'm not freaking out about it. Just taking it one hour at a time. That's all I can do.

Oh and I DON'T HAVE MY COMPUTER BACK YET. IT'S SOMEWHERE BETWEEN HERE AND KENTUCKY AND YOU BETTER BELIEVE WHEN I GET IT BACK SOMEONE AT BEST BUY WILL BE CONTACTED. IT'S RIDICULOUS. Ok I'm done ranting.

Sunday, October 7, 2007 12:17 AM CDT

Well, we've basically been told there's nothing more they can do for her. By neurosurgery and neurology. We still have the appointment on the 18th. The scan says it's possible scar tissue, less likely a recurrance. Scar tissue, there's not much they can do. So I have no idea what we're going to do. This is a fricking nightmare. I will be changing my insurance on January 1st so I can take her out of state. I have a couple of things I'm going to check in Michigan tho, we aren't giving up just going in a different direction I guess.

All we want is to get her back into school so she can graduate with all her friends. That's all we want.

Tuesday, October 2, 2007 6:06 PM CDT

Well, Sam is still going thru a lot. She's in pain, she's nauseated and hasn't been to school in 3 weeks. The neurologist feels her case is not an emergency and can see us on October 18. Her MRI came back with funky results. Either she has early recurrence or there are artifacts from surgery. (Mary Alice, this was on the final report). We don't know and they are treating her as suffering from chronic headaches. The neurologist says she's always going to have headaches (insert curse words here) and that we need to get a handle on them. We're about as frustrated as we've ever been. She's suffering, we can't see the doctor for 2 weeks and she's not going to school. I swear, if they get any worse, I will take her to the ER and insist they fix her. I know that's unreasonable but I feel like we're at the end of our rope. They're going to re-MRI her in 3 months. Whatever...We're sick of this.

My computer is still on the fritz. Now it's in Kentucky being fixed. I really need my computer to help her. I'll update when I can, probably on Friday. We are very desperate for help and don't know what to do.

Wednesday, September 26, 2007 6:49 PM CDT

Sam = feeling crappy. MRI is on Friday. Her head is just hurting all the time and she's still nauseated every day. I went to meet with her counselor yesterday and he told me she's not going to flunk because she's sick. So that was quite a relief to her. Hopefully, the MRI will be clear but hopefully it shows whats wrong. Does that make sense? It would if you were her.

Computer is still down. I got more parts in the mail today. Friday at noon they're coming out. That's in between Alec's appt with endo at 9am and Sam's MRI at 4. I just love driving downtown at least once a week. It's awesome. (Can you hear the sarcasm?) But twice in one day? That's priceless.

I feel so bad for her, this is the worst she's felt in a long time. Which has both of us kind of worried, we talked about it yesterday. We'll update as soon as we can, hopefully from our own computer at home. Take care all. Oh yeah, Samantha Mills got her shunt un-clogged and was home by Friday night. What a kid!!!

Wednesday, September 19, 2007 3:54 PM CDT

***UPDATE Sunday - Sam is still feeling crappy. I called the MRI dept at Childrens and they said they have the paperwork and with her history she'll be scheduled right away. So hopefully Monday or Tues. I have no idea whats going on. I'm getting PMS (pre MRI syndrome) even tho the chances of anything going on in her brain is minimal (hahahaha), you know what I mean. Hopefully computer will be fixed tomorrow so I can communicate with the world again. Take care. Ellen and Sam

Sam is not doing well. She's nauseated, head is killing her, she hasn't been to school in 10 days. They're going to repeat her MRI just to make sure and then go from there. The chances of her cyst recurring are very small but you just never know.

Please pray for Samantha Mills, who is having her 200thsomething surgery on Thursday. We love you Sammy. And for Sammi's friend Bryan, who lived down the street from us and was diagnosed with medulloblastoma. Over the summer he recurred in the brain and spine and is undergoing chemo now. He goes to school when he can. His mom is a cancer survivor also and I ran into her at Sam's open house last week.

We are very discouraged to say the least. Sam had started ballet, doing really well, impressed her teacher and now isn't feeling well. It was the one thing she looked forward to, but she probably won't be able to go tonight. We'll get her well, but obviously she's going to struggle with the crap for a long time.

Also, happy birthday Zoe Bergen!!!! And to Aunt Jenni!!! Love you guys.

My computer is still down. The Geek Squad from Best Buy didn't get all the parts so hopefully next Monday it'll be fixed. I miss my computer, updating and talking to all our friends. Ok, take care... Love, Sammi, Ellen and Alec

Thursday, September 13, 2007 6:05 PM CDT

Sam got out on Tues but still not feeling well. We have to check her I/O's for the weekend and see where we're at. Her sodium is still high as is her serum osmolity. I'll update when I can. Ellen

Tuesday, September 11, 2007 8:01 AM CDT

Well, we're still here. They are fudging around with her DDAVP dosage and method of delivery (pill vs. nasal ingestion) but hopefully we'll be out today. Her sodium got high again last night but it's been good since, I think. She's still sleeping so I'll try and update later. Take care. Ellen

****Later...Sam is awake and feeling ok, sodiums have been good since last night. I think we'll be going home this afternoon. Sam has been invited to speak to a group of golfers next Monday. Every Friday here at Childrens, a company called Visteon has their workers come in to play Bingo with the kids. It's fun and they have great gifts and it's something the kids really look forward to. The golf outing is to thank the workers for volunteering and Sam is going to talk to them about what it means to her. I would imagine there will be dozens of people there. She's kind of nervous but really excited. Only 2 kids were picked to talk. Kathy, the child life specialist takes very good care of Sam when she's here and always ends up with something special for her. She's awesome!!! It's next Monday. May be the beginning of a new career for her!!

Monday, September 10, 2007 11:19 AM CDT

Sam is back in the hospital, she got dehydrated last evening and was feeling bad enough to ask me to bring her downtown. They admitted her around 4 am but we should be going home today. She's in a pretty good mood today, surprisingly enough. We have a lot of immediate family crap going on but her and Alec seem very happy today. It's weird. I need a shower... p.s. Everyone is very happy to see Alec today, they say he looks great. He does. pps...we had a great time at the Tigers game with the cutest Zoe ever. Her family is awesome and we met some new fighters....Of course the Tigers were massacred but we had fun.

Saturday, September 8, 2007 11:00 AM CDT

****See history for very cute picture.... Sam started high school last week, she's doing ok. Still having some adjustment problems from missing the last 2 years of school. But I think time will help. But she is starting ballet next week and is so excited. There's a new studio in Wyandotte, everything is brand new and the owner/director/dancer guy is very nice and cool and was very impressed with how composed Miss SammiJean is. They are going to start her in a class with one other girl her age, who just started ballet last year. Sam took 2-3 years of ballet when she was really little. She's really excited. I'm excited for her. Tomorrow is the Tigers game with the Bergens. www.caringbridge.org/mi/4theloveofzoe.

My computer crashed and I haven't figured it out yet so I might not be able to update until Wed. She's feeling ok and is back up to 82 lbs. Thinking maybe her last increase in growth hormone led to headaches.

Saturday, September 1, 2007 9:45 AM CDT

This is Bradley (mi/teambradley) Shelby and Sammi.

We met them for breakfast this morning and had the best time. These kids are so darn cute. They just jumped right in, telling us all about High School Musical, the Wiggles and Bradley's favorite, Sponge Bob. Bradley looks great and Shelby is the cutest thing. And their mom Lori, a high school teacher, is so nice. And wouldn't you know, their Papa showed up. So we got to meet a lot of nice new friends and look forward to seeing them again.

We are going to Croswell today to visit my cousins on her farm. I have a horrible migraine so I'm hoping a little rest will help me feel better before we go. Alec is still sleeping so I think I'll go lay down with him for a few. I guess I need to go back on my medication. I forgot how horrible these are. Ok, we'll update tomorrow!!!

Sunday, August 26, 2007 1:17 PM EDT

****UPDATE Tuesday - We talked to neurosurg. Dr Sood really feels her headaches are not shunt related. I agree with him even tho Sam is going to be mad at me for saying this. The nurse I talked to said that she and Dr S talked for a long time last night. They are going to make contact with her neurologist and endocrinologist and come up with a plan.

She went to her hs orientation today and sat with a girl who is the niece of one of the neurosurg nurses. She looked really pretty for her pictures, new shirt and she even put on some mascara. Her lashes are long and lush like her momma's so she feels weird wearing mascara but I told her it just makes them look better. She's eating some chicken nuggets right now and we're just going to take it day by day. School starts on Tues. Please pray for Shawn, fl/sydneysims and fl/jacob....His new sister arrived in Florida over the weekend and she looks adorable.

*******UPDATE Monday - We are still waiting for neurosurg to call us. Sam is still feeling cruddy. I would like to ask for special prayers for one of my best friends, Shawn. She is a dispatcher, one of my trainers and we worked together for about 4 years. Now she is a supervisor with another department. She had a meningioma brain tumor removed this morning. Her son Steven just called me to tell me she is in recovery and they got 85-90� As long as it does not grow back, she will be done. If it grows back, they will probably have to do radiation. Steven did not tell me this but I know a bit about brain tumors and I am sure this would be the next step. It brings back so many memories of Sam, it is kind of upsetting but I am glad her surgery is over. She struggled with the decision to have it removed but finally the doc said "We are taking it out". Sam and I may go visit her on Wednesday, as long as she is up for it. Thank God it is over and she is ok. I love you Shawn....

Sam is still not feeling well. I guess neurosurg is going to discuss her tomorrow and then let us know. I have no idea what they're going to do. Her head is killing her and she's lost about 5 lbs. I am also still waiting for endo to call back. So basically we're just waiting. I'll update tomorrow when we know more.

Wednesday, August 22, 2007 10:10 PM CDT

Sammi is still feeling cruddy. I am going to call endo tomorrow and see if they have any ideas. The kids have appts with their regular doctor for school exams. Alec is up to 74 lbs and Sam is down to 82. She's lost about 4 pounds in the last month or so which is kind of concerning but we'll see what the doctor says tomorrow. I feel really bad for her, she's just miserable. Ok, I'll update again tomorrow, from the hell that is Michigan. The heat index tomorrow is going to be 101. ARGH

Friday, August 17, 2007 8:27 PM CDT

Sam had a really bad night last night, I almost had to leave work but she took some vicodin and got to sleep. Tonight she seems better. We will see what Dr S says on Monday.

This is the first weekend in a long time I have had both kids. It is an awesome feeling. I do not even know what to do with myself. Tomorrow we might go to IKEA. They need bookshelves. And we might go bowling.

Love you guys more than you will ever know!!!

Monday, August 13, 2007 1:23 PM CDT

Sam is back at her other residence....Aunt Ruthie's house. She is loving her time with Lily and Luke and Nana. I think she's feeling ok. She's been having some dizziness, not sure if its the hypotension thing or not. She says it's her shunt. Who am I to argue with her?

Alec should be coming home today or tomorrow. I'm thinking tomorrow. I have to go cut the grass. At least it's not 4000 degrees out.

Wednesday, August 8, 2007 7:55 PM CDT

Sam still feeling cruddy. Yesterday we told them her shunt was at 190 and they insisted it was at 170. Well guess what, it was between 190 and 200. Just like we said (Quoth Queen SammiJean). So they put it back to 180 for some reason. Sam is trying to explain it to me but I'm an idiot and can't quite grasp what she's talking about. The higher they set her shunt the more support she's getting which gives her higher pressure??? I have no flipping clue. She says that's right but again, I can't quite get my mind around it. She's feeling worse since they changed it. It's all a big guessing game. We see Dr Sood on Monday. She's wants a medical bed so she doesn't have to lay flat. I think we'll get it thru insurance or something, not sure how that works.

Ok, we're retiring to the coolness of the bedroom, to have Abbey lay on us and throw herself against us. She's been extremely lonely and needy the last few weeks.

Ok, we're out!!!!

Love, Sammi and Ellen

Tuesday, August 7, 2007 4:46 PM CDT

Sam had a rough day today. Chris took her downtown, as I was spending the afternoon with Alec, out of the hospital (ck visit/alecrc for details). She is still not feeling well. Apparently, they diagnosed her with orthostatic hypotension but never told us. Her blood pressure is low when she is sitting or laying down and her heart really has to work hard to get it to a normal range when she stands up. When she was discharged in June, the papers said, Parents will follow up with PCP regarding hypotension. Well no one ever told us. I mean, we always have noticed her bp's are low, but no one has ever mentioned it as a problem. So they asked Chris today if we had ever followed up on it and he said no, we didn't know it was a problem. I'm really aggravated about this. They also adjusted her shunt up to 180. Of course, they had to reset it several times, it went down to 30 then up to 145 then down to 45 then finally 180. That plays havoc with her pressure and she's been really nauseated all day. That with the 20 x-rays they have to take every time because her new valve is once again turned the wrong way. What a pain in the rear!!! Ok I'm done. I'm going home to sleep and then work tonight. Love, Ellen, Sammi and Alec, the wonder kid!!!

Thursday, August 2, 2007

Sheesh, I can't believe it's August already!

Right now(at this very moment), as we speak, I am at Aunt Ruth's house and I am waiting for everyone to wake up!! Lily, Luke, and Lily's other cousins, Sarah and Emily were all up till about 4 in the morning. Yeah right, there was no way I was staying up that late! And most of us slept in one bed so there was a great deal of,"Lily, get your legs off me!" and,"LUUUUKE, wake up....stop wacking me in the face!". I think it all runs in the family. Anyway, I've been here since Sunday night...technically I was at Nana's house Friday through Sunday too so it's been a fun week! I don't leave till tomorrow.

I've been having more pressure headaches than usual this week. Like before the last surgery I needed, all these headaches seem to have been set off by a moderate pressure surge one day last week when I had a bad headache because it was a 5 out of 10 on the pain scale that mom checks online. Hopefully this passes over because my shunt can't set any higher and if I needed it to they'd have to go ahead and replace the valve. I've been feeling great the last couple of months, I don't need any problems!

And without further ado, I present the sleepy monsters waking up from their slumber. "Luuuke, get off me, I'm trying to type!" I'm gonna go now but, Oh yeah the endo appt!

I've grown half an inch...not as much as we'd hoped and of course, we all know that since we uped the Cortef I'm a gaining-weight-fool. 86 lbs. I'll probably never need estrogen replacement as far as they are concerned and they took blood but we did't have a referal(MOM)so we couldn't do a bone age X-ray. I think that's about it.

Please visit Skylar's website and pray hard for her! (visit/skylarjade)

Love, Sammi Jean

Thursday, July 26, 2007

Here is my new haircut!! I love it! I'm going to try and keep this up cause I really like my hair this way. It's nice being in control of the way my hair is cut! Although, yes, Dr. Sood does a nice job and only cuts a minor area away....

Anyway, today Mom and I are going to see yet ANOTHER movie(Tranformers...mom says it is surprisingly funny)so we're doing that and then visiting Alec for two hours because he ate his whole breakfast and lunch, GO ALEC!

I still have the endocrine appointment tomorrow. Just a routine check to see how much I've grown and they will probably check my hormone levels.

Love, Sammi Jean

Wednesday, July 25, 2007

Today Mom and I went to see Harry Potter 5 for the second time since I've been home from camp....and I've finished the 7th book twice too! Here are my thoughts....

I think the 5th movie is the best so far but I didn't like the fact that Harry just HANDED over the prophecy at the end!! What's up with that? In the book, they all fight until it breaks anyway!

I won't talk about the book in case some people haven't finished it yet. But I do think that the 7th book is also the best book out of the series!

OK, that's enough about Harry Potter. Anyway, Rachel and I had a great time! We stayed up till about 12:30 watching "The Terminal" which is one of my favorite movies, and we also watched "The Family Stone" which is another good one. We teased Abbey, played with Amy the Guinea Pig, and I gave her her waaaaaaaaa(aaaa)y belated Birthday present-a poem...what else!

I'm going for a haircut tomorrow, and don't worry people, I've already dropped off my camp camera at the store so pictures are on the way! I also have an Endocrinologist appointment on Friday. I think I've grown about an inch in the last 3 months....I know I've gained, like 13 lbs!! Dr. Moltz will probably check all my hormone levels this time because she hasn't done that the last couple times. It's just done with a butterfly needle poke, by the way.

Please pray for Skylar(visit/skylarjade)who is fighting a very brave fight.

Love, Sammi Jean

Sunday, July 22, 2007

Before everyone does anything else this morning, please visit my brother Alec's site and do whatever you can for him! He is having a really tough time but in my opinion, he is being really brave! The doctors are having him eat his whole meals, and even I can't do that! For instance, this morning for breakfast I had a glass of chocolate milk.(we're going out to eat later...then we are going to see HARRY POTTER # 5!!) We can only saw him for an hour yesterday and when that hour was up, it's stressful and tearful for everyone. The dietician has Alec on a "reward system". His link is above. Please pray for him!

CAMP WESTMINSTER WAS AWESOME!! This was my 8th year going, and I think it was the best year ever! Two weeks is way better than one! Everyone in my cabin, and my counslers, were great! This time, I'm not gonna wait till the trip up to the next week of camp(the next year)to develope the photos from the year before and now that we know how to put them on the site I can show them to you. During camp, the 16th of July rolled by and as most of you know, that was my 3rd year Remission mark!!

It's weird too think, out of the 14 years, 5 months, and 12 days I've been alive...I've only been cyst free for three years and 6 days. I had that Rathkes Pouch for my *whole life* and I didn't know it for 10 years, 1 month, and 18 days. OK, enough of the confusing numbers. Just thought I'd lay down some interesting facts.

I'll update more later, today Rachel is coming over for a reunion! We haven't seen each other since before Camp Sunshine!!

Love, Sammi Jean

Friday, July 13, 2007 3:22 PM CDT

Ok, my pity party is over, for the moment anyway. I'm going to add some pictures for your visual enjoyment...

Sammi inspiring Camp Sunshine at the tree dedication

Sammi, Alec and I for our family picture

Love, Ellen and Alec, who tried lemonade today and said "Pretty good". He made my day...

**************Alec is in room 557 and his phone number is 313 745 5985. You can send him a card at the address below...He's doing really well. He's a brave kid. Love, Ellen

Thursday, July 12, 2007 8:14 PM CDT

Well, Sam has been at camp since Saturday and I'm positive she's having a great time. She'll be back next Saturday. I'm too tired tonight to post any pictures, maybe tomorrow. It's been an emotionally exhausting day....

Alec is being admitted to the hospital on Monday for a 2-3 week stay to get him eating. They probably won't let us spend the night with him. I'm really torn about this (for more details see www.caringbridge.org/visit/alecrc..

Nikolaas, my oldest, is now officially legally blind. He has macular dystrophy and will be 22 in one week. His vision, with his glasses on is 20/200. He's applying for SSI. I can't even believe this is happening. My sisters came into town today, I can't even enjoy that, I'm so bummed out about Alec and Nik. The Alec thing is good even tho it's going to be really hard. The Nik thing just plain sux. I'm just wiped out today and am going to bed. Please pray for Alec to make it thru the next month or so without too many tears and for me to just make it thru. I'm worried about myself, I think this could be the breaking point for me. I'll be stuck at work and won't be able to be with Alec. I can't do anything for Nik. I feel helpless. I'm going to bed....

Wednesday, July 4, 2007 7:05 PM CDT

We made it home safely and I will post pictures as soon as I get a few mins. We are going up north this weekend to send Sam off to camp for 2 weeks. She's so excited. And she's been feeling really good. A couple of bad headaches but they haven't lasted. Camp Sunshine was awesome. I'll write more about it next week, but I'm at work, waiting for people to start calling and complaining about fireworks.... It is July 4th people!!!!

Thursday, June 28, 2007 12:19 AM CDT

Well, tomorrow is the last day. Actually today really is. Tomorrow we eat breakfast then drive home. But tomorrow is so exciting because we get to meet MaryAlice and her daughter Lizzie. They're coming up here at 9:30 to meet us. They're in Maine for a wedding, coincidentally. (We don't think it's a coincidence.) Sam has been doing great. She read her poem at talent night. The one about grieving that's on her website. A couple people have asked me if we've published her poems. I'm going to have to check into that and see how that works. And she's reading it at a tree-planting ceremony for the kids that passed over the winter. Alec is ok, he's pretty tired or as he put it "worn out". Hopefully our ride home will be quiet. Ok we'll update when we get home. Love, Ellen, Sammi and Alec.

Saturday, June 23, 2007 3:34 PM CDT

HI all...we're in Maine. No major problems getting here. Apparently mapquest has never been to Albany because both years the directions to the hotel was wrong. No other problems, just Albany. The kids are glad to be back and participating already. We'll update in a few days. Take care...Ellen, Sammi and Al-baby.

Thursday, June 21, 2007

WE LEAVE FOR CAMP SUNSHINE TOMORROW!! I absolutely cannot wait! I have a costume for the masquerade ball, and....of course, another poem written for the Talent Show! Now that we know how to load pictures(thanks Caitlin)we'll take lots of them...then be able to show all of you! My family and I also plan not to be as shy this year and get to know more people. Anyone who has actually had to talk to me knows I am insufferably shy in person! It's much easier to write. Until I'm on high power pain killers, then, boy, is anybody in hearing distance in for it! I'll talk and talk and talk until I suddenly pass out from the drowsiness about 20 minutes later!

Anyway, we'll leave tomorrow at about 9 in the morning and it's about a 9 hour trip to Albany. Boy, oh boy. Then Saturday, we'll leave at about 9am again, and we should get to Camp Sunshine for check-in at about 3! I am sooooooo excited!

Love, Sammi Jean

PS, Kathy, look in Journal History for pictures of the blimp ride!

Sunday, June 17, 2007 4:44 PM CDT

*****UPDATE June 20...We are leaving for Camp Sunshine in 2 days.. Sam is so excited, Alec is too but he's in school til tomorrow so he is still toiling... But he'll be excited come Friday morning at 9am (I hope we leave by then). We'll be back in Michigan hopefully on Saturday. I have to work Sunday night so we definitely have to be back by then.

Please pray extra hard for Sydney Sims.. (caringbridge.org/fl/sydneysims. She has had a relapse in her lungs. She's so strong and brave and beautiful and we are praying that they come up with a good plan to get rid of those neuroblastoma cells once and for all.

We're going to see Simonne tomorrow and Skylar too! We'll try and update tomorrow night before we go....Love, Ellen, Sammi and Al...

Ok the blimp, or airship as they call it, was amazing. I will let Sam tell you about it but I have some pictures I want to put on the website. Be advised that Caitlin just taught me and so I am not sure it will work. HERE WE GO!!!!!

Ok, the last one is Alec and Sam at the park last week on a picnic. Don't they look happy??!!!

I'm off work til July 1st. I have a class downtown tomorrow and Tues for work and then we leave for Maine on Friday!! Woo Hoo....

Please pray for Skylar-Jade Maxson. She's near the end of her battle with a horrible brain tumor. www.caringbridge.org/visit/skylarjademaxson.

And for our friend Skylar who had serious spinal surgery last week and is still at Childrens. We're going to go visit her and Simonne on Wed. Simonne is being admitted for a tune up on Monday..We love you guys!!!!

Thursday, June 14, 2007 10:53 PM CDT

Hi all...Sam had a really bad day today. I think she's feeling upset about missing so much school. She didn't want to go to her last day. The school was kind enough to give her a yearbook, as she wasn't there to order one. I think that upset her too, because she wasn't in any of the photos. I know she'll feel better soon, but today has been a day that's very upsetting. It's hot, she's crabby and she was just miserable. I feel so helpless. She's asking me what if she gets sick for 9th grade. I don't know what to tell her....All I can hope is that she is healthy enough to go to school. Please pray for this, I don't think it's asking too much that she be able to go to school. If she misses too much school next year, she won't be able to graduate on time. They also told me that she can't be on homebound school for high school.

But enough of that...it's summer and we're leaving for Camp Sunshine in 8 days and then she's going to camp for 2 weeks.. It's going to be an awesome summer. I have learned how to add pictures....Ck them out!!!!

Wednesday, June 13, 2007

We're leaving in a minute for Mom's Birthday dinner....HAPPY BIRTHDAY MOM!! So this will be quick and I'll do a fuller update later but CEDAR POINT WAS AWESOME and boy am I sore but it was worth it!! I'm so glad I got to go today.

OK, I have to go but I will definetely fill in the blanks later.

Love, Sammi Jean

Tuesday, June 12, 2007

Hey, sorry I know I promised an update yesterday but I felt really crappy yesterday! We went to my normal Doctor's office because I was having the out-of-breathiness again, really bad nausea and really REALLY bad fatigue. Also, this might seem like a good thing for me but when I was weighed for Pre-Op, I was found to have gained like 7 Lbs over the last month...even though my appetite was waning with the headaches coming back. Definitely weird. So I got a chest x-ray to rule out fluid on the lungs...NEGATIVE. Another unexplained ailment to add to my list but I'm feeling loads better today so I'm just praying to feel this way tomorrow so I can GO TO CEDAR POINT!! I got new flip-flops today to wear to the park! Tomorrow, Dad and I have to get up at 7 am and drive to the school. I'll ride on the bus with my friends and Dad will drive behind us in his van. It'll be so fun!

Please pray for Sydney(fl/sydneysims) she's battling some Post Op complications.

Love, Sammi Jean

Friday, June 8, 2007

Hello everyone! There are a couple things going on here so this could be a long update! I had a bad headache yesterday after I got home but it's gone away today. (Knock on wood, everyone do it with me) It was really bad sometimes, and I was scared I had gone home too early! But apart from a headache when I woke up that went away as soon as I got up I've been Ok today, just tired. I think the problem is I can't lay flat at night anymore or the pressure builds up in my head. My baldness is more pronounced this time, I think Dr. Sood had to shave a little more, but there is only one stitch.

The first bit of news is, while I was in the hospital, I was picked to go on a Blimp ride! Yes, I said a Blimp. One of the Child Life Specialists, Katherine, always comes to see me when I'm in the hospital and always does crafts with me, I love her! The blimp is with a company called Believe in Tomorrow National Childrens Foundation. The Blimp is the largest passenger carrying blimp in the United States and it travels throughout North America and offers children with Life threatening/ life altering diseases the chance to ride in it. Apparently all the hospitals in the state are supposed to pick a couple of kids to go on this blimp ride and Katherine picked me to be one of the kids to go from Childrens! It's on the 16th, and I'm really excited!

The things from school mom was talking about yesterday were two HUGE get well cards from my classmates and a frame from the Dinner I had to miss that you can write on. The cards were actually pre-made by Mom and then she took them to school to be signed by my classmates, so THANKS MOM! Mom and I talked to the school yesterday about me going on the End of the Year trip and it's all settled, I'm going! As long as one of my parents comes with me. But Dad will follow behind in his car and I can sit on the bus with my friends! The trip is to Cedar Point, this huge Amusement Park, and I've been there several times....it's awesome!! I should be going back to school on Monday, please pray for that to happen, I really want to just finish out the school year.

The slideshow above was also made by Suzie Ott, and I love it! Thank You, Suzie! Most of the pictures are of the trip to Chicago for my Birthday with Rachel. A couple are of my regular at home B-day party with Rachel and Sarah, a friend from school. That trip was just so much fun!

Well, I'm going to go now but I might update over the weekend and I definately will update on Monday. Please visit Sydney's site and pray for her!(fl/sydneysims)She's having a big surgery today.

Love, Sammi Jean

Thursday, June 7, 2007 12:29 AM CDT

We're going home....she's still having headaches but they seem better. They put her on a new med, Inderal. We'll see what happens. The only thing concerning me is her neck pain but I guess I have to talk to Dr S about getting outpatient MRI. She only has one stitch on her head which is awesome....She looks good. I'm off til Monday night which is amazing, so we're looking forward to some quality time. Caitlin is coming home on Tues for my birthday and I'm going to see Nik so it's going to be a good week. Love, Ellen and Sammi

****UPDATE 4pm.....WE ARE GOING TO CAMP SUNSHINE!!!! We're so excited and happy.

We just found out our friend Samantha Mills is at Childrens having the same procedure Sam just had and she has the same surgeon......She just missed us. We like being there when they're there. Angela and I usually have a pretty good time. So please pray for Sammy www.caringbridge.org/visit/samanthamills

Take care all....Sammi might have more to update...she got a couple of surprises from school today!!!

Wednesday, June 6, 2007 7:19 AM CDT

Sam's headaches have been pretty bad over night, thanks to dilaudid, she has been able to sleep. Her pressures have been spiking and when she got up to use the restroom, she felt really nauseous. Also, her blood pressure is pretty low, 81/42. She's had low bp's in the past but none since her cortef dose was increased about 2 months ago. So that's a bit alarming to me but we'll see what neurosurg says.

I'll update again later, if I have access to this laptop. Otherwise, I might when I go home to pick up Alec from his half day. He has 2 appts down here today.

And the bestest news of all?????? Bradley did not, I repeat *did not* relapse.....WooHoo. Sammi really wants to meet this brave little guy and his whole family.....Harrys perhaps when we get them a little healthier????? Take care and way to go Bradley!!!!

And a super special thank you to Susan Ott (www.caringbridge.org/wv/stephanieott) for making Sam's page look so beautiful. It's just perfect!!!

Tuesday, June 5, 2007 3:36 PM CDT

Sam is doing well and her pressures look a little low, as usual. I'm sure we'll find out more tomorrow. She came thru surgery like a trooper.

Love, Ellen and Sammi

***Our room number is below!

Sunday, June 3, 2007 4:33 PM CDT

We need big prayers for our Downriver neighbor, Bradley. He is at the University of Michigan with a possible bad infection or possible relapse. Of course, we are hoping it is a bad infection...He is having a bone marrow aspiration tomorrow. If you are reading this, please take a moment to sign his guestbook, mi slash teambradley. My stupid computer will not let me use contracted words or slashes so I cannot hyperlink and I sound like a snob.

Sam is feeling headachy and nauseous. She is at her dads this weekend. She had fun at Rachels house but I could tell she did not feel well. Hopefully we will get her in condition for the end of the school year and Cedar Point.

We are on a waiting list for Camp Sunshine. I guess I sent the app in too late. We are near the top and they said based on prior years drop out rate, we should get in. However, if we get in it will be because someone planning on going had to drop out. That bothers me. So I am not praying to go to Camp Sunshine. If it happens it will be awesome. If it does not happen, well then a family will have as much fun as we would have and that is fine with me. But it is just another disappointment for Samantha and I do not know how many more disappointments she should be expected to deal with. Obviously this is no ones fault. But it is hard to watch your child be let down over and over again by her own body. Or by her shunt, however you want to look at it. I read about parents that plan the coolest parties and activities for their kids. I just do not have it in me. I am not remotely creative and I am just overwhelmed by work, taking care of the kids etc that I do not have the mental reserves to be the "cool" mom. But it is something I am working on. Well I have to go get ready for work. I am working in the jail tonight, so for all the people who I am about to fingerprint and mugshot, please realize it is not my fault. Do not call me any names tonight, I might just cry!!!

Friday, June 1, 2007

Well, if you read yesterday's mini-update you know it, and if you didn't I'm writing it now--I'm having surgery #33 on Tuesday. I'm just not getting better, and it really sucks!

Today the heart palpitations(about 130 Beats/min)came back, and it's thudding so hard it's enough for me to notice just because my chest will just be thudding really hard and if my hand or something is on my chest, it will move with my heart beat. Mom will notice it too, from across the room! We know it's not dehydration, because it comes and goes with or without fluids. We called Neurosurgery about it and they said to follow up with my regular doctor but what would that do? She'd just tell us to go to Children's! So, we'll just wait ill Tuesday and tell Dr. Sood about it. I'm still having the headaches, neck aches, and a little bit of nausea every once in a while. I am also starting to notice that I am losing my appetite, which is always a sure sign with me that something is wrong with my shunt.

I hope I can make it through the weekend because Rachel is coming over for a sleep-over and we have been planning this weekend for two weeks!! I can't wait, Rachel!

Also, I'm missing my 8th grade Graduation Dinner, and I'm really upset about it....I was really hoping to get better in time for it! It's totally not fair! But now I'm setting my sights on the 8th grade Trip to Cedar Point in 13 Days...I sure hope I can make it there because I LOVE roller coasters! But hopefully this hospital stay will only take a couple days and I won't have any back or stomach stitches if I go to the amusement park.

All right, I have to go, Lunch is ready....Please visit Anna Jane's site(ok/annajane), she just had her Birthday party and I'm sure she would appreciate some birthday wishes, and please pray for Bradley(mi/teambradley), he is in the hospital with fevers and no immune system, he could use your prayers!!*******

Love, Sammi Jean

Monday, May 28, 2007

Update Later on May 31....They're going to do another ICP monitor but they cannot do it until Tues which really stinks...So hopefully she won't be suffering too much this weekend. Darn it all...

*****Update May 31.... Sam is still feeling cruddy so we will probably end up downtown...again. I have no idea whats going on. She was afraid of this a few weeks ago when she was in, that she was going to keep having problems. I will update later when we get back. Love, Ellen and Sammi..

Wow, what a trip! I'll save the most dramatic part for last, for now let me say the wedding was beautiful! Lisa, the bride, looked soo pretty and the camp looked way different than usual with all the lights and ribbons. It was such a perfect wedding and you could tell everyone was so happy!

The hotel was nice too, and no we didn't get to play the once in a lifetime big huge game of Cranium because Aunt Ruth forgot to bring it...oh well. We had fun anyways, with card games and a bit of croquet! It was right on the lake although the lake was freezing so I didn't go swimming in the lake but I did go swimming in the pool twice, which brings me to the dramatic part.

Almost the whole family was in the pool playing Marco Polo and after that novelty wore off, everyone EXCEPT my cousins Lily, Luke, Aunt Ruth, Mom, Alec, Dad, and I got out. Then Dad, Lily, and I got out of the pool to go in the hot tub. Luke was jumping off the edge into moms arms and Lily had just gotten out of the hot tub and jumped into the pool. Alec and Aunt Ruth were just swimming around. All of the sudden I heard a HUGE crash and everyone in the pool was screaming. I whipped around to see the air ducts that were previously hanging above the pool had broken loose and fell RIGHT INTO THE POOL! Then I saw another one fall onto the pool side! I scanned the heads and at first I didn't see Alec so I jumped out of the hot tub thinking he must be trapped under them or on the other side of them but then I saw him coming out of the pool with everyone else. Dad had jumped out too, and tried to lift the ducts out of the water but they were too heavy! Two big tubes had fallen into the deep end of the pool, inches away from Alec and one fell right on the cement where Luke and Lily had just been jumping off!! One hit Lily's leg and the suction pulled her down but thank God she had her water wings on so she could easily swim back up! So, we all got out and took stock. Poor Lily, she was so traumatized(she's 7)! She was shaking and crying, and the big crash scared Luke too(he's 5). The rest of us were shaken but OK. I think we all knew one of those things could have easily killed someone, and just 15 minutes earlier the whole family was in there playing Marco Polo! It was a real blessing Lily and Luke had jumped off the edge and everyone was out of the deep end. So, we got a free night off and Ruth asked for their whole stay off and I bet she got it. Just the night before Uncle Mark found a screw on the floor in the pool room and one of the straps holding those ducts was already loose!

That's about all the near death experiences that happened on this trip. Today we got to watch the Memorial Day parade right in front of our hotel, and then we said our good byes and came home. I was really tired this weekend and my burr hole is completely flat and my back is completely sunken in, which points to high pressures. I have a bad headache today too, and it hurts to change position, like from sitting to standing. So, I might have to get adjusted again but I'm not sure. I guess we'll see tomorrow.

Love, Sammi Jean

Thursday, May 24, 2007

We're leaving for Higgins/Houghton Lake early tomorrow morning! I'm all packed and ready to go. I'm not sure if my medos valve is though.....Mom and I went back downtown today since I was doing worse with the lower setting(after I updated yesterday I started getting neck pains, worse headaches, et cetera)and they set it higher than before. Now I am at 170 and so far I think my headaches are better but it may just be because I have been up all day, we'll see how I do when I lay down to sleep. My neck's stopped hurting too and my energy levels better but they also started me back on Periactin so I don't know how long that'll last. *sigh* The Nurse Practitioner has shown me where my valve is so when I go back I don't have two people digging around an-already-sore-and-tender-surgically-scarred-spot to find it for when they have to program it!! She also wanted to show me how to read my own X-rays because after EVERY programming they have to x-ray the valve to make sure it is at the right setting. I wasn't feeling great though so I'll ask her how to next time! I'm definately into that stuff! Every time I go into the hospital, I do the traditional medical play then I take the doll home and open her up, put some chewing gum foil in her head for a titanium plate, some thread in her abdomen for an LP shunt, and I sew her back up with some suture kits I got from the child life specialist!!

It's really late and I have to get up in 11 hours...everyone here knows I need 13 hours of sleep to function so catch you later!(either monday or tuesday)

Love, Sammi Jean

Wednesday, May 23, 2007

Hey everyone, I still have a headache today but mom promised you an update so here I am!

Beth from Neurosurgery called and they're going to put me back on Periactin for now and they're thinking about adjusting my shunt again. It feels like high pressure headaches because it's way worse at night and gets a little better during the day, as I get up and about. But I've been really fatigued again, like before they upped my Cortef dose, and I've been sleeping A LOT. I feel like Flabby Abbey! I was able to get my stitches out while I was downtown, now the itching is DRIVING ME CRAZY NUTS!! Sometimes I think the "healing" is worse than the pain is when they first slice me open!

Speaking of which, mom forgot to say in the last few journals, I like to pick out stickers to put on the surgeon's area of choice after they mark me. It's the least I can do, considering the surgeon's about to cut me along that mark!!

What did my last sticker say?

GIRL POWER!! (accompanied by assorted flowers and other glittery girly stuff)

I got it from the play room, the morning of the operation, the play room staff loved it! Another time, I put a spider sticker on my burr hole for Dr. Gilmer Hill, since I don't have any hair there anyway!

This memorial weekend my cousin Lisa is getting married so hopefully I feel good for that! We're going up to the camp I go up to every summer since Lisa used to go and work there too. The whole family's gonna be there, so I'm planning on rallying EVERYONE for a really big once in a lifetime game of CRANIUM!! That would be soo keuool! And I'll take plenty of pictures. I swear, as soon as mom or I learn how to upload photos to photobucket, there is going to be a photo explosion, all from the last year and a half!

All right I'm gonna go but there are some people that need your prayers!

Sydney(fl/sydneysims)found some more cancer last week, and they are going to do surgery. Please stop by and sign her guestbook to let her know you are thinking about her! Please stop by Penelope's site(ny/penelope) and pray for her family, she passed away this weekend.

Love, Sammi Jean

Wednesday, May 23, 2007 7:16 AM CDT

Well, after adjusting Sam's shunt yesterday she was up all night with a really bad headache. She's sleeping now but I have to wake her up to give her her meds. I hate doing that but it's very important that she get the cortef every 8 hours, or as close as possible.

If she's not feeling better I'll take her back down. We have a big weekend planned and I know she'll be very bummed out if she's feeling cruddy. Love, Ellen

Tuesday, May 22, 2007 7:19 AM CDT

Sam is feeling ok, she's been pretty tired but hoping to go to school today. Her incisions are healing nicely but you know what that means....intense itching. It's driving her crazy!!!! On Friday, we'll get her stitches out and then go up north.

We would like to thank Candy and Terri for taking such good care of Sam mail and gift wise. She and Alec were excited to come home yesterday to big gift bags from Candy, Sam original Audreys Umbrella fairy. And Terri sends the most beautiful cards, with uplifting messages and she loves getting them.

On Saturday, it was the 3 year anniversary of Stephanie Ott's passing. Her family is so brave and inspirational and we are asking that you pray for peace for them. Check out www.caringbridge.org/wv/stephanieott for a beautiful tribute to their daughter.

Take care all, maybe you'll get an update from Sam tonight...Love, Ellen

*****UPDATE...I took Sam downtown today, she slept til noon again, which is completely ridiculous. They adjusted her shunt from 150 down to 130. So tomorrow is hopefully school!!!! I think she's feeling better, she seems like she's in a better mood. But her head is still hurting so she isn't in the mood to update. Hopefully tomorrow!

PS, if two songs are colliding on the site, sorry, we don't have sound on this computer! Sam's not sure if she deleted the previous song or not! So if there are two songs playing at once and it's driving you crazy, just press pause on the video until Sam can fix it. Thanks!

Thursday, May 17, 2007 11:55 AM EDT

We got home last night around 5pm'ish. She's feeling ok, just tired and sore. The wound on her back opens up a little bit every time we take the band aid off and bleeds so she can't take a shower til that closes up. She'll have to get her sutures out in 7-10 days, (next Friday). Then we're going up north to her cousin Lisa's wedding. It's at the Camp Sam goes to every summer. We're staying til Monday, the family is going, it should be fun.

I just got a belated Mothers Day present in the mail. It's a green t-shirt from Sammi that says "My Daughter Is A Brain Tumor Survivor." I can't wait to wear it. It's perfect.

Wednesday, May 16, 2007 11:38 AM CDT

Sam got her new valve and is feeling much better. I think we're going home this afternoon. So that is good news. Woo Hoo!!!!!

Tuesday, May 15, 2007 8:11 AM EDT

Sam is supposed to have her surgery this morning but she's "on-call" on the schedule so who knows what that means. I haven't told her yet. I can't stand to be glared at all day again so I'll tell her if it becomes a problem. They said yesterday that her surgeon had a light schedule so we'll see what happens. Hopefully she'll sleep for a while....I am hoping we'll be home tomorrow. Thanks to everyone for signing her guestbook!!!She'll love reading them. I'll update later if I can. I'm able to update because they have portable laptops they give you in the rooms that work much better than the ones in the library. Hopefully we can get one later. This one will probably be picked up soon. Bye bye...p.s. Say a little prayer for me, I have a sympathy migraine....Ellen

2:02pm...Well we're still waiting, to say Sam is disgusted is an understatement. She is tired and in pain and not happy. I don't know what else to say. I'll update later. UGH.

Monday, May 14, 2007 11:00 AM CDT

Well, they're going to go in and change her valve tonight, at least I think that's what they're going to do. All they said is Dr Sood wants to do her surgery and he has clinic all day today. She's not happy because she has to go all day without eating or drinking and for someone with diabetes insipidus that's pretty tough. She's in a lot of pain too which doesn't help.

Please pray for Sammi, for comfort and no pain. Love, Ellen

****Update 4:30 pm....Well, unfortunately for the two kids down in neurosurgery and for Sam, Dr Sood has to operate on them first today. So Sam has been postponed til tomorrow. So I just ordered her some dinner. She's had a bad day and she's pretty upset. Hopefully tomorrow she'll start feeling better. Daddy and Alec are on their way up so maybe that'll cheer her up a bit. Ok, my advice for the day...DON'T FORGET TO WATCH 24 TONIGHT, THE BEST SHOW ON TV.....

Sunday, May 13, 2007 2:27 PM CDT

They're adjusting Sam's medos valve from 127 up to 180 which is a big jump but it's ok to do since she's in the hospital. She'll be in til at least tomorrow. Her pressures went really low last night, hence the big jump. Alec and I had fun today, we went to breakfast, went to see Spiderman 3 "again" and then went to the mall. Last night we played catch and watched Star Wars 3 "again". I went to bed early, I was tired. Alec got me a flower at the restaurant, a white carnation. He's very sweet.

Ok, I'm off to the shower and then back to the hospital. I'll update tomorrow if I can. Love, Ellen and Alec.

Saturday, May 12, 2007 6:08 PM CDT

Sam is doing ok. She's been having some heart palpitations and shortness of breath, which along with the pain along her shunt tubing is kind of concerning, so I think they may be doing something about that tonight or tomorrow. She also had a lot of bleeding over night from her head. Yesterday after the surgery I asked Dr Sood what the bump on her head was. He said it was nothing. Well when we saw the blood on her pillow this morning and all the blood on her head, it looks like they made 2 extra incisions on her head where the bump is (was). So I'm kind of curious what "nothing" is. I will probably have to get a copy of the surgical report because Dr Sood probably won't be on rounds til Tuesday and I'm hoping she'll be home by then. Other than that she's been having some bad headaches but they said her pressures have been ok. Ok, Alec and I are off to the sporting goods store to buy a baseball, he's hoping to join a baseball team next week. He's pretty geeked. Love, Ellen and Alec.

Thursday, May 10, 2007 11:02 PM EDT

Well this will be short because I have to get up at 5:30. Sam has to be there at 7am which is good because she doesn't have to go all day without eating and drinking which is hard for someone with Diabetes Insipidus. She said tonight that the other side of her burr hole is now starting to hurt. Maybe she has some kind of inflammation or low grade infection going on. It's weird. Ok, I'm going to bed. Thank you for all the prayers and thoughts....I'll update as soon as I can tomorrow. I wish I had a laptop, the pc's in the library at the hospital are kind of hit and miss. But I can get Nik or Caitlin to update for me if I have to. Love you all, Ellen and SammiJean, the beauty queen.

Wednesday, May 9, 2007 8:06 AM CDT

Well, I just woke Sam up to take her medicine and I can tell she's just in horrible pain. I know they said to give the periactin a week to work but that's another week of missed school if this keeps up. They think it's allergies causing her headaches but she's had allergies for a while now and it's never caused headaches. The bump on her head is a little bigger than it was yesterday. I don't know, it's just not adding up. This just sucks beyond words. I know if I call they're not going to do anything. It doesn't make any sense to me that she would all of a sudden get this bump on her head the same day her headaches start back up and that it's allergies causing her headache. Does that make sense to anyone else????

******Later on Wednesday...Beth at Neurosurgery talked to Dr Sood and they're going to do an ICP monitor on Friday. If that shows something wrong with her shunt then they'll fix that. If not, then they'll consult with Dr Sivaswamy, her neurologist, to see if she needs meds adjustment for headaches. I realize I sounded very jaded up there (thanks for the reminder Dave and Danielle) but we are just very frustrated. She is missing so much in school and that has her so bummed out. It seems like everytime she gets back in the swing of things, she gets pulled right back. I guess that's the world of chronic headaches. All because of a cyst in her brain. Who knew!?!?!?!?

Monday, May 7, 2007

I had a really bad headache today, and couldn't make it to school. I'm also having pain along certain points of my tubing on my ribs and my neck. My back is still a little swollen too. My headache was way better over the weekend but at about 9:30 this morning it started getting bad again. I guess we're going downtown again if it isn't better. I hope this doesn't turn into a two-month fiasco like it usually does!

I did finally go on a bike-ride for the first time in two years yesterday. And nooooo, that's not an exaggeration! The only difference was the bike and the fact that I didn't need a helmet 'cause the titanium plate on my skull's got it covered! Just kidding, I still wore a helmet, mom's very adamant about that!

Please visit Anna's site(ok/annajane), she just had surgery and they found a lot more cancer than they thought they would. Please offer her family some support! Also, Sarah (nc/sarahsmith)is waiting for some results and could use some prayers!

Love, Sammi Jean

******Tues am....Going downtown again...Her skull is swollen by her burr hole too, that's new and weird...Ok We'll update when we get home....Love, Ellen and SammiJean

******Sam is doing ok, they said it looks like she's accumulating calcium near her burr hole, in the tendon that covers your skull. So the calcium is being moved around and being irritated. It's not a major concern at this point. We are also going to put her back on periactin, and see if that helps with her allergies which are probably causing the headaches. So hopefully she's going back to school tomorrow. She's playing with her guinea pig right now....Amy is very cute.

Wednesday, May 2, 2007

Brain Tumor Awareness Week.

FIGHTERS AND SURVIVORS

We are kids who were sick
then and even now.
Though for all of our bravery
we never have to bow.

We just bite our lip
and keep pushing on
So people are amazed
at how we come along.

We keep taking pills
and drinking liquid stuff
So some day the evil
in our bodies can turn to dust.

In the hospital
and out again
Our lives could never
be the same.

The scars on our heads
and tubes in our chests
are the only symbols
to show our best.

We keep on fighting
We keep on living
We keep on learning
We keep on giving.

We are fighting
just to survive.
We are living in
hope to revive.

We are learning
the meaning of prayer.
We are giving the soul
yet another layer.

We want to get better
so we learn to be fighters.
We are children and
WE ARE BRAIN TUMOR SURVIVORS!!!!

This week is Brain Tumor awareness week. About 190,000 people each year in the USA are diagnosed with a brain tumor each year. Raise Awareness! It would save 190,000 lives if we could all band together and find a cure. It would prevent countless needle pokes, needless headaches, and would eliminate the need for treatments that have too many side-effects.

I have a really bad headache today and couldn't go to school, if it still hurts this bad tomorrow, mom's going to take me downtown. Please pray for it to go away, so I don't have to miss anymore school. Also, please keep Taylor's family in your prayers! (fl/taylor)

Love, Sammi Jean

****UPDATE Thursday morning - I'm taking Sam downtown, she is still having a bad headache....I'll update when we get home. ******They adjusted her medos valve and then the x-ray. Her valve is supposed to face out, so they can easily x ray it to check that it changed to the correct setting. Well, Sam's faces up, towards the heavens!!! So they have to take her to fluoroscopy to take special xrays. It's better than the 16-20 xrays they were doing last time but it took 4 hours for the whole visit. Sheesh. We'll see tonight if it works. If not we'll probably go back downtown on Monday. We should know tonight....Take care and thanks for checking on my Sammi..the bravest girl I know...

Monday, April 30, 2007 8:53 AM CDT

We had a great time with Simonne. She seemed to tire pretty easily tho. She's going on her Make a Wish trip in about 3 weeks, she's going to Give Kids the World in Orlando. She's really excited.

Sam has been really tired the last couple of days so I let her stay home. Today was a half day anyway. I took a late nap yesterday and was up til about 5am. Hopefully I can take a nap later, since I have to work tonight. Yuck.

**This is Sammi, and mom forgot to tell everyone about our new pet, Amy! She is a cute baby Guinea Pig and she is white with brown and speckled black areas. She fits in the palm of my hand! So far her favorite food is apples and she is pretty nice and mellow but she's jumpy being a Guinea Pig! We've been able to hold her a lot though.

I have a headache today, but it's not too bad. My back's been kind of swollen too where one of my scars are. Hopefully it's just from the stormy weather we had a couple days ago.

Love, Sammi Jean

Saturday, April 28, 2007 9:33 AM CDT

Sam went to school all week except for Thursday. Apparently she's really sensitive to barometric pressure. We've noticed that whenever a low pressure system comes thru, she has horrible horrible headaches. Once the pressure stabilizes, so does she. WEIRD.

She went to a dance on Tuesday. And tonight we're going to see Simonne. Sam is so excited. It's going to be fun. Talk to you all soon. Love, Ellen and SammiJean

Friday, April 20, 2007 7:19 AM CDT

Sam was being a doctor again last night, her guinea pig, Ginny seemed really sick. She hand fed her and gave her water by syringe. But I checked her this morning, I think she's passed into heaven with her other pets. She's going to be really upset. I don't know if she'll want another one. She's had Ginny since her first communion, 4 years ago.

Today Caitlin turns 19. Unbelievable. I love you Caitlin and I'm sorry I forgot to call you at 7:58. I'll call you at 7:58 CT.

Wednesday, April 18, 2007 2:48 PM CDT

Well, guess who I just picked up from 6 hours of school??? Yes, it was Miss Samantha Jean Elisabeth Robertson. I think it went ok, she won't really talk about it. But this week we're doing 4 classes, next week we'll try all 6.

Caitlin said she put some new pictures on the website but they're no where to be found. I'm really bummed because they're cute....Maybe I can figure it out...Probably not. OY

Anyway, the good news is she went to school and she was happy when she came out. Woo Hoo!!!!

Saturday, April 14, 2007 10:01 PM CDT

We are in Indiana today. Visiting my sister and her bambino. We went into Chicago to go the aquarium and I actually drove downtown, which I always said I would never do. But we didn't get to go to the American Girl store, we might tomorrow. We are actually on a mission to pick up Caitlin. She turns 19 on Friday, hence her health insurance terminates. So she has to go visit Ira, her orthopedic surgeon one more time. We'll take pictures and I'm pretty sure I'll get teary, he's pretty cool. Hopefully Sam or Alec will break a bone some day and I'll get to take them to see him. (Just kidding). She's coming home til Wednesday. I can't wait to see her and smell her forehead (don't ask).

Sam is feeling better (knock on wood). We're thinking school next week (knock on more wood). She's been getting up earlier every day and it's pretty cool.

Ok we're going to bed now. Along with getting up early comes going to bed early. I'm all for it. Night night. Love, Sammi and Smellenore. (my nickname at work).

Monday, April 9, 2007 1:29 AM CDT

Sam is doing ok. We had appointments this week with neurology and endocrinology. She is doing well headache wise. We are working on the sleepiness issue. She is now 5 foot one inch but still only weighs 78 lbs. So she's 25th percentile for height but below zero for weight and BMI. But going along ok for puberty and growth so we're good on those. We had good appointments. I'm hoping she can go back to school after Easter break. She's at Aunt Ruthies tonight, having a ball. I'm at work. Blah. Lots of people drinking and getting arrested tonight. Dumb. Ok, Hopefully getting our computer fixed this week too. Just about number one on my list. Talk soon. Love, Ellen (can you tell I have a headache? short sentences).

Wednesday, April 4, 2007 1:30 AM EDT

Sam has had a rough couple of days. The new neurologist she saw put her on Concerta to help her wake up earlier so she could go back to school. Problem was she stayed awake for 36 hours at a time and was having heart palpitations and pulse rate up to 170. So we stopped that and we're back to sleepy Sammi. She was a trooper tho. We see our regular neurologist on Thursday and Endocrinologist on Friday so maybe we can try something else. I don't know anymore. I'm out of ideas.

She is really enjoying her packages from her spring fairy Carol, who is the cool sister of her original fairy Candy, from Audreys Umbrella.

Ok, I'm at work and 911 has been ringing off the hook tonight. Take care all and I'm trying to get my computer fixed so we can update at home like normal people. Love, Ellen, Sammi and Alec.

Tuesday, March 27, 2007- Four Years.

Four years ago at about four in the morning I woke up and all I knew was I was hurting all over and I felt sick. Then I threw up and Dad rushed me to the hospital. Mom was at Aunt Jenny's that night. I couldn't move my head an inch and that was when I learned what I.V. stands for. I went for a CAT scan and as we waited for the results I dozed off. When I woke up a doctor was talking to dad and I heard the word "tumor". I knew they had done a CAT scan of my head so I pretty much knew where the tumor was. But I was kind of out of it, I guess from the Meningitis, so it didn't sink in. When dad came in, he was crying. That's when it sunk in. By the time the Paremedics came to take me to Childrens Hopsital of Michigan, Mom was there too and she brought me one of my American Girl dolls. On the way there the Paremedics were really nice and let me pick out a beanie baby cat, which I still have. when we got to Childrens they wheeled me to some double doors and another doctor put a mask over my face, and asked me how old I was. I said, "10" and then I was asleep. It was for a spinal tap, I think. I only woke up a couple times during the next couple days. Then I started walking around and my friend Carly came to visit me the day before I was discharged.

I remember almost everything from March 27th, 2003. Even for the next couple years after that, it didn't really hit me, "Oh my Gosh! I have a Brain Tumor." The tumor itself didn't cause any real trouble until the summer of 2004 when it was taken out. But now, it's everyday that I'm reminded somehow. While other teens biggest worry's are the big math test on Friday, One of mine is whether or not I'd be able to go to school on Friday. While most teens know by now which deoderants leave white marks on your clothes, I know which pills leave little round chalk marks on the furniture!(watch out for that cortef) If someone ever asks me to smoke, I know I have the strength to say no. Most teenagers don't know for sure until they're asked. I know what I'm made of.

"I don't think I shall easily bow down before the blows that inevitably come to everyone."

-Anne Frank

Love, Sammi Jean

P.S. The scope is tomorrow at 7:30, which is good because I won't be thirsty or hungry. Please pray they find something that would account for the stomach pains so they can start treating whatever it is. Also, I just want to thank everyone who has ever visited this site and has done something as simple as siging my guestbook. Those messages do so much for me. Or if you've sent me a card or called me on the phone, even if i was too shy to talk to you, it's appreciated soo much!

****I didn't want to take Sam's entry off so I'm just updating. It's late on Thursday night/Friday morning. Her scope went well, it showed a lot of irritation on her esophagus which is what I expected. So they're going to put her on Prevacid to help heal that up. It's from long term steroid therapy, which she will be on for the rest of her life so I guess she'll be on Previcid or something along that line for the rest of her life also. Tomorrow she has an appointment with a world renown neurologist at St Johns Hospital, where her dad works. Maybe he can shed some light on the fatigue thing. That is what is mainly keeping her out of school now. She's begun homeschool again. My internet explorer has disappeared off my computer. Best Buy wants $200 just to look and see where it went. I'm going to have to figure something else out, I can't afford that. So in the meantime, I'm updating at work when I can and I have 700 unread emails. Alec is doing ok. There may be a feeding tube in his future. He's just not eating or growing and he's going to be 13 this year. His bone is is still 8-9 years old. It's just not good. Ok, I have to get some stuff together for her appt so I'll update again tomorrow night, working some more over time. 32 hours this week...yuck. Love to all, Ellen, Sammi and Alec.

Friday, March 23, 2007

Sorry for all the delays...mom's internet was somehow deleted from her computer so we can't use it and dad's internet is really slow at loading caringbridge webpages. But we're working on it.

I felt pretty good yesterday, Mom, Alec, and I went to see Nik and his new kitten *Clarence*. Oddly, the name seems to suit the cute-all-black-kitty. My stomach was bad again today though, and I woke up at 4:32 am and couldn't back to sleep until mom was leaving with Alec for a doctor appt. at like 8:00am. Then I slept till almost 1:00. My sleeping pattern is rather erratic and unpredictable.

The scope is scheduled for Wednesday and they always call the night before to give us a time to come in. It will probably be outpatient and when Alec had his done in October it was pretty quick. Please pray that they find something so they can fix whatever it is and I can get back to school again!

Please keep Kelly's family in your prayers and please stop by Matty's page and sign his guestbook.(visit/matty) Suzie and Jeff, thank you for the page, I love it!

Love, Sammi Jean

Wednesday, March 14, 2007 11:49 PM CDT

First of all, Sammi's friend Kelly Muldoon passed away on March 12, exactly 2 years to the day that Emerald passed. They had the same spinal cord tumor. Sam is doing ok, I talked to her at bedtime. Her scope for her stomach pain will be 2 weeks from tonight. Hopefully they'll find something. Her T3 hormones are fine so that's not causing her tiredness. The next thing they're going to want to do is a sleep study. But I'm going to wait til after the scope.

Please pray for Kelly and her family. She was a very special girl.

P.S. Suzie, Sam loves the page, it looks great. Talk to you Saturday.

Saturday, March 10, 2007 4:26 AM CST

Sam is still feeling pretty cruddy. They'll probably be doing a scope on her upper GI system in the next 2 weeks. They're cking her thyroid again to see why she's so tired all the time. We're getting her back on homebound for school. That's about it. We're pretty beat. It's discouraging. But we're hanging in there.

Tuesday, March 6, 2007 8:22 PM CST

Sammi is still feeling cruddy but we have an appt with GI on Friday morning so I'll update then. It's been a rough week but we're hanging in. Blah. Praying for Taylor and Kelly.

Thursday, March 1, 2007 2:21 PM CST

Sam is having just horrible stomach and head pain today, makes me wonder if she doesn't have something infectious going on. So tonight after work, I'm taking her to the ER. I couldn't leave work today, we're at minimum....

Suzie and Jeff, I must apologize for not keeping in better touch after our Chicago weekend. Things have been really tough but I promise to call tomorrow night and talk to you and thank you again for a wonderful weekend. Sam and Rachel had a great time, so did I for that matter. We got to see Caitlin 3 times and it was great. So thank you again for everything.

I'll update as soon as I know something. Love, Ellen

Saturday, February 24, 2007 5:21 PM CST

We haven't fallen off the face of the earth...We were in Chicago last weekend for Sammi's Special Weekend, which by the way was awesome..I would like to Thank Judy, Rachels mom, Chris, Sammi's dad and most of all the Otts, for making Sam's weekend so awesome. I don't have time right now to get into more detail but it was great. Our internet is down at home but hopefully I'll have more time to update in a few days. It was great. Sam is having more stomach problems, they put her on a new med, not sure if it's working...she's still sleeping a lot, missing school but they're on winter break until Wednesday so hopefully she'll start feeling better. Ok we're getting ready for another winter ice storm. Take care and I promise to update as soon as I can. Love, Ellen

Monday, February 12, 2007-achoo, cough, sniffle, honk

I have a cold hence I didn't go to school today. I was up all night with a stuffed nose and a tickly throat both of which I still have right now. No medicines I've tried are helping either!

OK, for my Birthday I got....

1: Roller Skates
2: Sims Nightlife
3: Two of the same kind of CD because of a parental mixup but I'm listening to one of them as we speak so thanks mom and dad!
4: Body Spray and Lotion.

And from Rachel, I got a cool shirt and a book! THANKS RA! And from Sarah I got a really pretty figurine and some really cool smelling lotion. Also, I can't even begin to count the number of cards I came home to on Saturday, so thank you to everyone who sent me a card!! I can't wait till Friday, Jeff and Suzie! Thank-you!

I have a neurology appt with TWO doctors tomorrow so we're going to cancel one of them. One is with our regular doctor and the other is with a new one so we can just get another opinion on these headaches. If I'm feeling OK enough I'll update about it tomorrow.

Love, Sammi

Saturday, February 10, 2007-Happy Birthday to MMEEEEEEEEE!!!

It's my 14th Birthday! Rachel's over for a sleepover and my friend from school, Sarah, is coming over later!! I have Bumpy cake, 27 candles to make for last year(they don't want candles in the hospital in case it blows up oxygen), I have party hats, noisemakers, 2 friends, and I'm gonna have a lot of fun!!!! Kink u shunt!!(that was Rachel, She gets it basically. Anyway, now my Bone-age is 12!!

I've been battling this thing for almost 4 years. In a month it will be my Diagnosis Anniversary.....wow. Since I was 10, I've learned how to spell Hypopituitarism. I've learned that a Brain Tumor or cyst isn't always a death sentence but a Life Lesson. They're serious but they can be conquered...and I did it! As Rachel would put it, burst u Cyst! (as you can tell, RaRa would HAPPPILY RESECT EVERY SINGLE tumor that has ever made it's way into a childs brain). I plan to! ( from RaRa, Sam is gonna be the best neurosurgeon in the WORLD in case ya didn't know that! )

OK, I'm going to go, and put on my party hat and annoy mom with a noise maker....Rachel's doing it with me!!

Love, Sammi Jean the 14 year old Teen!!

Thursday, February 8, 2007 9:53 AM CST

Sam is feeling ok, still sleeping a lot but feeling better. I sure would like to figure out why she's sleeping so much. I read a message on my DI message board from a mom of a boy with DI who is tired all the time, has stomach pain and has headaches. Sound familiar? But I wasn't able to respond at the time so now I have to go back and find it and see what she's been able to come up with and maybe we can come up with something together.

Sam has her Valentines Dance tonight. It's from 6-8. I think she's probably excited but since she's still sleeping I don't know. Her birthday is in 2 days!!! I know she's excited about that. I can't believe she'll be 14. I nominated her for Real Girl of the Year 2007, thru American Girl. She does so much for other kids, that you might not be aware of. She signs guestbooks, sends poems to sick kids, we make bracelets and necklaces for girls and their moms, she draws pictures of kids that have passed, for their parents. I think she's definately the real girl of the year.

Monday, February 5, 2007 11:09 AM CST

It's not a snow day!!!! It's a TOO COLD IN MICHIGAN FOR SCHOOL day!!! And it wouldn't surprise me if we have another one tomorrow. When we woke up today it was 4 below zero. But the wind chill was about 20 below. The low tomorrow will be about zero. And the wind chill will be about the same. It's not good out there. We might go to a movie. We're all bundled up in blankets and sweatshirts. Our house is a bit drafty, I think everyone's houses are drafty in this weather.

Sam's ok, I think her stomach pain is better. She's so excited about her birthday. I have to work that day. But I'm sure we'll go to dinner or something before I work. Ok, I'm going to go snuggle with Sammi before she turns into a popsicle.

Friday, February 2, 2007 1:35 PM CST

Sam tried to go to school today but her stomach was just hurting too much. We sat in front of the school for 15 minutes, her crying and wiping her nose, me saying, "come on honey it's only a couple of hours...take a deep breath". Finally I realized it just wasn't going to happen. I have a call into our reg doc. We started the Zantac today, I guess we'll see if it helps. The problem with stomach problems is that it takes months to get into see the GI docs at childrens. We don't have months. She needs to go to school. She wakes up crying everyday. She's still sleeping at least 12 hours a day. It wasn't the neurontin making her sleep because she's not taking it anymore. Her appt with the neurologist is Feb 13. Nothing is ever easy with our SammiJean is it?

Wednesday, January 31, 2007 11:16 AM CST

Sam is still feeling cruddy but I'm taking her to school anyway. I took her down town for an ultrasound, we won't get the results until later today but I'm pretty sure it was normal. The neurosurg nurse is thinking that maybe she has an ulcer. I guess it can be pretty common in kids who have been thru multiple surgeries. So they gave us a script for Zantac. And I guess we have to see GI. Sounds like fun. Ok, we'll update more in a couple of days....Talk to you all soon. Ellen and Sammi

Monday, January 29, 2007 11:22 AM CST

Sam and I are on our way downtown, she's been having bad stomach pain and nausea for 3 days. They said her tubing could have come loose so we're on our way down for x-rays and maybe an ultra sound. We'll see when we get there..I'll update as soon as I can. Please pray for Sammi.

And for a boy named Jonathon we met at camp. He's in hospice but being so brave, like all of these children are..He plays the piano brilliantly, both he and his brother and his dad is a leukemia survivor. It's amazing what these families go thru and how brave they are. He doesn't have a caringbridge site, but please pray for a brave thoughtful boy named Jonathon who wowed us all at Camp Sunshine over the summer, with more than his piano playing. His bravery shined.

***Sam's ok, they think maybe she has a bladder infection so I have to take her to her reg doc tomorrow, after court in the morning. I have to testify about some idiot who was arrested for drunk driving. Last year. There have been so many lately, I'm sure I won't even remember. Oh well....She seems to be feeling ok now, so we'll update more tomorrow. Ellen and Sammi

***Tuesday...Sam is feeling bad again, low grade fever, abdominal pain...I'm going to take her to her regular doctor and rule out a bladder infection and if that's negative I'll take her downtown tomorrow for an ultrasound. She's going to try and go to school today. It's only for 2 hours. Pray for Taylor and Kelly (links above).

Friday, January 26, 2007-15 more days!

15 MORE DAYS!! I just think it's going to be an awseome year this year. True, I'm not getting the 200$ for my New Years Revaloution(dang it!)but one year maybe I will. But I'm feeling better than I have in a year, except for those darned Kidney attacks. I was writing a Birthday list for mom yesterday, and I came up with a rather small list. I'm really content with my life right now, and I wouldn't change anything although I would like a cure for future kids with diseases like mine.

Please pray for Kelly, Taylor , and Congaratulations to Catie's Parents on the new Baby. One child can't replace another, but I'm sure Catie is very happy about her new Sister.

Love, Sammi Jean

Wednesday, January 24, 2007-SNORE!!

I had to wake up at ~*7:00*~to go to a Nephrologist appointment today! OMG!!! I just woke up two hours ago, and it's like quarter after one.

The Doctor was really nice but I don't think he knows what's causing the "kidney attacks". It looked like he maybe though the Diabetes was overexerting my kidneys but he's going to test some urine and get back to us. He wants to look at that shadow that was on my last ultrasound too, and try and see exactly what it was. He also wants us to keep a diary of how much I drink and how many times I go to the bathroom. That's gonna suck up all my time!! Also, he wants me to write down when I get the attacks.

I had a bad headache today but I didn't get a lot of sleep. I was really naseous last night. I'm also already getting really excited for my Birthday!!!!!! Only like three more weeks, and I am NOT gonna be in the hospital! I'm waiting, Jeffery and Suzie!

Love, Sammi Jean

Monday, January 22, 2007-lalala and a hahaha

I feel the Vicodin I took a half hour ago hitting me as we write so excuse any ranting. I warned y'all the last time I posted....

I woke up at like 8 this morning with a bad headache and it's continued today but all in all I think the Topamax is really helping. I still went to school today. Just pray I don't lose too much weight, although as I'm already underweight I can't really lose any. I guess It's all milkshakes and mashed potatoes with butter for me!

OK, 24 is on now so I gotta go!

Kelly, whose link is above, could use some prayers, and Donovan(in/babydonovan)passed away this weekend. Please offer some condolence to his family.

Love, Sammi

Sunday, January 21, 2007 4:35 PM CST

Sam has been feeling ok, she's really tired all the time, not sure whats up with that. I am done with the auto show today, it's been crazy today, since it's the last day all the crazies are coming out.

SCRUB MISSION COMPLETED!!! Sam got a package in the mail yesterday from Jeff and Suzie.....a set of scrubs. She wore them to bed last night...She absolutely loved them, Thanks to the Otts, again, for picking a wonderful gift to send to her.

Ok back to work for me, and back to school tomorrow for Sam, 2 hours a day so far is going well, hopefully we'll add another hour soon. Like this week. Ok Bye... Love, Ellen

Thursday, January 18, 2007 11:24 PM EST

Please pray for caringbridge.org/ga/catie. We have been following her story for so long and I'm just shocked at what has happened. I don't have my html codes at work so I can't put up a link but please sign their guestbook, her mom is about ready to have a new baby and it's just very sad. Love, Ellen

Wednesday, January 17, 2007 2:02 PM EST

Well, Sam didn't make it to school today, but I didn't expect her to, it was a half day and they get out before noon. She had a pretty rough night last night. Between a huge hive she got on one of her scars, her twi-nightly trips to the bathroom, headache and Abbey she didn't get a lot of sleep. She's still sleeping now.

My phone battery died last night on my way to the auto show so here are a few messages I'm returning.

Angie - I will call you on Saturday, if that's ok. I have a call into the school board about an IEP. Again, I apologize for my prolific use of cuss words. Arghhhhh....

Sonya - We got the package and let your daughter know Alec loved the pillow....and the cards were "sweet" in his words. He went thru every one already. We have to go to the store today and get more pages for his book. I will give you a call this weekend too. I have to work the next 2 nights so I'm pretty much out of commission for the next 2 days. The joys of midnights. Sam loved the purse, it's nice and small and perfect for school and we will be going shopping on Friday, she needs new clothes for school now that she's going again, so thank you for that too. Oh and as far as yesterday goes? Once the water started dripping on my newly washed car, I was laughing too. I don't stay cranky for too long. And when I rear ended the lady's car, she never even got out to look at it. I got out and she said " You're ok ". I'm glad she thought so, cuz I was ready to lose it. She must get hit a lot and realized I wasn't going fast enough to do any damage. Does your cell phone accept pictures? If so, I'll send you a picture of Alec with his pillow. Thanks again.

Caitlin, my Catholic daughter - Thanks for being such a great daughter and for being so beautiful ( really that's my fault ) but I love you and miss you terribly and I'm glad you're mine. Tell Rachel I said hi and I miss her too, hope she's enjoying school and any second now it will be spring and she'll be glad she's in Chicago and not yucky Michigan.

Monday, January 15, 2007-Hi, It's actually Sammi.

Yes, it's true. My headaches are worse if anything but I have some Loritab so now if anyone gets me talking they'll be sorry 'cause I won't stop! Mom and Dad will back me up...I'll start talking for no reason at bedtime and keep EVERYONE up. I've been more tired too the past two weeks, and I was really nauseous last night and this morning. Neurology put me back on Topamax. Just 25 mg, half of what I was last time so hopefully it will take care of the headaches and hand tremors just as well but with less or no weight loss. And I REALLY WANT TO GET BACK TO SCHOOL!!

Thank You to my Audrey's Umbrella Fairy, Lexie for the Package. I loved the scrapbook, pens, and the memo book a lot!! Thank you so much! And thank you to everyone who signed my guestbook. Childrens has this new thing where they can bring a computer to your room for a few hours for you to use in your bed so I was able to check E-mil and my guestbook, and play games. Mom and I even played Gin against each other on my roommates computer one night!

SarahSmith is waiting for test results and could use A LOT of prayers right now. Please go to her website and leave a note in her guestbook, her mom's journal entry's are so inspiring and uplifting to me.

Love, Sammi Jean

****Tuesday am....I tried to get Sam up for school, she said her head hurt too bad, I could tell she was very restless all night, she slept until 2pm yesterday but went to bed with me at about 11:30 pm so I don't know how long she's going to sleep today. I called school and asked if they could put her back on home school. This really sux. I hope it's only for a few weeks until her new meds kick in. I've also decided to send her scans to St Jude to ask their opinion if they see anything in her head that would be causing these headaches. OK, I'm back to do my housework...I haven't really been home in a week and it shows, dust everywhere. And Abbey is not the neatest cat in the world....Please pray for an easing of Sam's headaches, I don't think they'll ever go away, but if they could ease up enough for her to go to school that would be great!!

****2 hours later, I got a call from the director of Special Education, they handle homebound studies. They heard thru the grapevine that Sam is not confined to bed. I never said she was, the doctors note didn't say she was. I didn't know she had to be confined to bed to be on homebound, no one ever said that. So now she has to go to school, even if it's for an hour a day. So we just washed her hair and we'll be leaving in 30 minutes for the last 2 hours of school. This is a good thing, it's just so sudden. Sam is feeling like crud and feeling kind of put out that she's being forced to go even tho she doesn't feel good. OK, I told her she could take a Lor-Tab but she can't take them forever. Hopefully the new meds will kick in and her headaches will lessen. Ok we're off!!!*****She's at school!!!!Everyone looked happy to see her, she seemed happy to be there...I hope this works out....Of course I cried so one of the girls hugged me...that made me cry more, luckily Sam didn't see me cry...

****3:40 pm..I'll let Sam do the gist of the update, suffice it to say, I picked her up, ran over a parking block, rear ended a car in the Taco Bell drive thru, burped and got dripping water all over my newly washed car. But on the flip side, all of that did make Sam smile. Who wouldn't laugh hysterically at a mom like that...now heressssssssss Sammi...Hi, my gist of the update is it was OK. My stomach was upset and my head hurt as always but everyone was happy to see I was alive. Seriously, the school board wasn't really keeping everyone up to date on me so a lot of people assumed I died. I'm kinda mad about that but oh well, they saw me in the flesh and blood so hopefully they know better by now. OK, Dad's picking me up in a couple minutes so I gotta go....I'm not sure if I'm going to school tomorrow since it's a half day.

Love, Sammi Jean

Saturday, January 13, 2007 2:38 PM CST

Sammi has been released and is on her way to Nana's with her dad and Alec. She looks cute wearing one of her hats to cover up the missing hair and stitches. I have to work tonight and tomorrow so I probably won't see the kids again til Monday but she looks pretty good. They have changed her meds back to the Topamax, which she was taking before and lost a lot of weight on but it worked really well. They put her on a much smaller dose. But it worked really well on her headaches and took away her hand tremors so we were really happy with it until it turned her into a skeleton. So we'll just keep an eye on her weight, more than usual. Ok, I'm back to bed, Jeff and Suzie I will call you on my way to work.....Take care all and pray for a quiet night in Redford MI. I'm tired and not in the mood for stupidity.

Thursday, January 11, 2007 10:09 AM CST

Well it's not her shunt, which is good news, means no more surgery. But it means we still don't know why she's having headaches, so we're waiting for neurology to come down and maybe change her headache meds. She's at school right now. Can you believe it? She wants to videotape herself at school so the kids at school can see what she does here. Ok, I'll update later if I can. Love, Ellen and Sammi

Tuesday, January 9, 2007 6:55 PM CST

They are going to do another ICP monitor tomorrow. She's feeling better tonight but only because she's on vicodin. They did a CT scan and shunt survey which looked ok. The one thing I'm thinking is that she has had her medos valve adjusted a lot and maybe it's set too high now, it's at 140 and it started at 50. So we'll find out tomorrow what her pressures are and go from there. We have to be there at 1:15 so I might not be able to update until Thurs am. I will as soon as I can. Love, Ellen

*****Dakota died last night..I am not going to tell Sam until she gets out of the hospital, but she's a smart cookie, she'll be able to tell somethings wrong...Please sign his guestbook for his mom and stepdad...Dakota.

Sunday, January 7, 2007 4:30 PM CST

I was working at the auto show today and so when I called Sam today, I could tell by her voice that she wasn't feeling good. She has a really bad headache. It seems worse than usual. She felt really bad yesterday too. She and Rachel did have fun on Friday tho. We went to see Charlotte's Web and then came home. Of course, I was the first one asleep. I'm going to get a bag packed just in case.

***Monday afternoon, 18 minutes after to be exact****Sam was up all night with her head hurting. She doesn't want to go downtown, "They won't do anything anyway". I called her in sick to school and told the secretary that if she is sick tomorrow, we'll start the homebound again. She's sleeping now. I have an appt at 1:30 with Alec's therapist, we're just trying to figure out how to help him best. Ok, I have to go clean the bathroom, Yuck. I'll update later tonight from work.

****January 8, 2007 22 minutes after midnight...Sam is feeling horrible, I think Chris is going to take her downtown in the morning. I have to sleep and take Alec to school and be around in case he needs something or gets sick so Chris said he could take the day off or go in late or something. She hasn't had headaches this bad in months. Ok, I'll update more tomorrow when we know something.

Friday, January 5, 2007-Nothing new...

OK, that's not completely true, I did have an Endo Appointment today. Dr. Moltz is upping my Growth Hormone dose(grrrrr)to **2.0** mililiters because my growth has been slowing down a little and she doesn't want me to only be 5 foot 2 when either I start puberty on my own or I start wearing a patch. We aren't sure if I'll have to have synthetic estrogen or not, yet. She is pretty much astounded I still have any estrogen and is also awed at the fact I have thyroid even though every other hormone from that part of my Pituitary Gland is or almost is gone. She will call us if those two hormones are low within a couple days. I grew half an inch, which I think is pretty good for two and a half months but I guess it isn't good enough. I gained about 1 1/2 pounds and she wants me to start eating "Calorie Dense" foods, like mash potatoes, which I love...That also means I can have ice cream for breakfats if I want!!! Every childs dream.

As a fun fact, we have made up some tunes about Abby with the tune of "Don't Phink with my heart" by The Black Eyed Peas like,

No, no, no, no Abby's a psyco!

No, no, no, no She's such a fatso!

No, no, no,no stop licking your toes!(she really does that!)

No, no, no, no She is so Loco!

No, No, No, No, her belly's so low!

No, No, No, No, stop licking MY nose!

No, No, No, No just look at her go!

No, No, No, No will you please fill my bowl?!(that's Abby talking)

We made a lot more but those are my favorites. I made up most of them but Mom started it, so Thanks for the fun, Mom!

Love, Sammi Jean

~~10 minutes later~~ RACHEL IS COMING OVER TO SPEND THE NIGHT!!!!!!!!!!! SCREAM!

Monday, January 1, 2007-Money for the New Year!

First, please go to Angel Lance's site and comfort his mother. Lance died peacefully in his mom's arms Thursday and it was rather sudden. I just checked on him Tuesday and I just went back today and I learned he had passed away. My prayers are with you!

Happy New Year to everyone! My personal resoloution is that I will stay out of the hospital until midnight next New Years! Yesterday I told mom and dad if I do it I get 100 bucks and they agreed so if I don't get admitted by the end of the year I GET 200 DOLLARS!!! Yeahyuh! That doesn't include ER visits where I don't get admitted or Doctor Appointments or Shunt Adjustments. Here's hoping!

I felt good this weekend but last night I was getting a bad headache and today I was really tired and I had a mild "Kidney Attack" again. I still won't see a Nephrologist until January 24th, too. Please pray I don't get a bad Kidney Attack until then. Maybe they can figure SOMETHING out. I'm pretty tired of not knowing what the hecks wrong with me!(and I want 200 dollars...just kidding! LOL)

Please pray for Dakota , he's been having trouble form his tumor and isn't feeling that well. Also, Donovan
has a serious infection in both his lines and they don't know if he'll make it. But pray for him and hope he'll get through this, he's such a strong person for such a young one.

Love, Sammi Jean

Thursday, December 28, 2006-Merry-3-days-after-Christmas!

Hi People! I had a really good Christmas....my favorite present at Dad's was a Digital Camera/Video Camera and at Mom's it was yet another American Girl Doll, Emily! With the video camera, I went to work with mom and promptly taped the people at her work playing Dodge Ball. It was funny! With all the American Girl stuff I got I promptly got out all 10 of my dolls and dressed them. Now they are in my room in various poses and Elizabeth is sitting on your bed Jeff and Suzie! Thank You sooo much, it is really Beautiful! And Alec loves the stuffed dinosaurs, that is exactly his thing! He keeps pummeling and whacking the Spider Man against the couch too for fun...Boys will be Boys, I guess. And THANK YOU to everyone that sent me a card or gift, there are so many people who have done so! Again, the support so many people have given me over the last few years is over-whelming. It is truly admirable and I thank EVERYONE again. To all of my Audrey's Umbrella Fairies, To Linda K, Sheriff Dan, both Janets, Jeffrie T, Jalena, and I'm sorry if I'm forgetting anyone but to you too~THANK YOU!

I felt pretty good this week, but still sleeping a lot, like 12 or 13 hours a day. I always wake up a lot at night from headaches and sometimes nausea. Also lately I've been having these really wierd sensations where my lower back and legs feel as if cold air was blowing on them. Hopefully it's nothing, like my shunt rubbing up on a nerve or something.

Please pray for Nicole who had Brain Surgery last week, and for Sydney(fl/sydneysims)who is having a rough time with her new chemo, and Donovan(in/babydonovan)who is feeling a little worse lately.

Love, Sammi Jean

Tuesday, December 26, 2006

Well, first of all, we had a great weekend in Chicago. My best present was having all four kids together, in one place at one time. It was awesome. Probably the last time it'll happen for a long time but it was worth it. Nik made the train with about 9 seconds to spare after spending 100 bucks on a cab to get to Dearborn since he didn't wake up and didn't hear me pounding on his door. OOOOH i was so aggravated. But he made it and that's all that matters. Caitlin is doing so well in Chicago. She's quite the city girl now. She looks beautiful and is just great. Alec did really well. He was worried about being in the big city but he did great. Sam felt pretty well. We got home about 12:30 on Christmas Eve and spent the night at Chris' and the kids opened their presents over there. Then I rushed home and wrapped and the kids came over here and opened. Then Sam and I went to my work. She had fun. It involved dodge ball and videotaping and that's all I can say about that. She stayed up pretty much all night. We came home and slept all day. She's at Chris' right now and I am getting ready for work.

I hope everyone had a great Christmas. I know we did.

Saturday, December 16, 2006 0:39 AM CST

Quicklyquickly.
This is Caitlin, updating for my mother.
Just some quick pictures.

Zoe and Sam.

http://i37.photobucket.com/albums/e68/hellen177/101_2047.jpg

Mom and Sam, if you want more.. just call me.
I'm busy tomorrow, but I can on Sunday!
I love you both. And Al.
You better get excited about your Christmas presents!
And Sam your page is so cute!

*****Update****December 21***Sam is going back to school in about 6 hours..Please pray that she makes it thru. She has been feeling really cruddy lately but we're still going to try. That's part of the reason we haven't been online lately. Just busy and her really feeling really bad. But she's going to do it. Ok, I'm at work so we'll update some more on Friday and let you know how it went. Love, Sammi and Ellen

****Well, Sam had a really bad night last night and didn't make it to school. I'm hoping maybe on Friday??? On a good note, we've managed to get all the kids together and we're headed for Chicago for Sat and Sunday. We're going to visit Caitlin and we'll all be together for one fun filled night. We haven't all been together in I don't know how long. This is all I've wanted for Christmas, so I'm happy. Sam is ecstatic, Alec is less than thrilled, and Caitlin and Nik seem happy. ( Alec doesn't like big cities). But he will have fun, whether he likes it or not. I will update on Sunday or Monday. Take care and MERRY CHRISTMAS!!!

Wednesday, December 13, 2006-11 more days!

Before I get ahead of myself I have a new E-mail- NeuroGirl716@hotmail.com. Call me!!

Only 11 days till CHRISTMAS!! I'm screaming right now but you can't hear it unless you live within 15 blocks...

We went to the movies with my two BEST FRIENDS in the WHOLE WORLD, Rachel and Simonne!! We saw Happy Feet at the Imax, it was so cool! We ate at Olga's which included Simonne being mistaken for mom's daughter, us ordering from the Kid's Menu, Rachel telling a rather obsene joke about Tickle-me-Elmo(won't repeat it here), and Rachel squirting ketchup all over the table and THEN Simonne repeated the joke to the waitress(to my redness). Wow. And then we went back to the hospital and had fun there and took pictures with mom's phone so I don't know if we can get those on here or not. We are waiting for Caitlin to get pictures back in the photo album too. Suzie, we sent one picture to you already so it should be in your E-mail.

I had a really bad headache today and I've had a lot of nausea this week. Mom and I are hoping to get back in School maybe at the end of January for the new semester.

Donovan(in/babydonovan)and his family could use a lot of support right now. Please go to his website and at least sign his guestbook! Also Sydney(fl/sydneysims)is immune to her treatment she has been taking now and could use some prayers.

Love, Sammi Jean

*****Thursday** Thanks for the awesome picture Suzie! I love it! Also...............................

I'M GOING BACK TO SCHOOL AFTER CHRISTMAS VACATION!! YEAHYUH! I'm going from 3rd hour to 6th hour since I'm still sleeping 11 or 12 or,like today, 13 hours a day but it's something! I'm screaming right now but you can't hear it unless you're within 15 miles!! I'll do a big update later today or tomorrow.

Thursday, December 7, 2006-whoa!

OK, this will be short because my teacher is coming soon. First of all, whoever is visitor number 77,777 sign my guestbook and let me know! I have gotten so much support since mom opened this website, and now I have gotten over 70,000 visitors!!

2nd of all, I HATE TUMORS EVEN MORE!!(if that's possible) Pistachio looked like he was in so much pain. I know it might sound stupid to mope about a hamster, but he was the only hamster we've evr had that never bit us once and we only had him for a month-and-a-half! My cousin's Lily and Luke had him first then they gave him to me and he never bit them either.

3rd of all, mom's TRYING to get the pictures up. Suzie, she's trying to get the picture for my website to you. She has them on Photbucket now, she just has to get Caitlin to show her how to get them from there to here and to E-mail.

Abby Alert...THAT PICTURE ON THE TOP ISN'T FAKE!!! Evidently my dad was showing Me and Abby's picture and he thought she had to be a fat stuffed animal...not kidding.

Love, Sammi Jean

Sunday, December 3, 2006-Awesome!

OH

MY

GOSH!!

IT WAS AWESOME! Thank you so much for inviting me, Danielle!! I had so much fun...and Zoe is just so darned cute! I am exhausted from so much activity and I have a pounding headache, but who cares!!

We got to go out on the ice, and be announced to the whole crowd and I also got a signed puck and a wrist band that says"Play Hard". My Jersey says "Robertson, #9" and then I watched a hockey game that was sort of violent in a prankster kind of way. When one player got a Foul Shot the other team threw their sticks in front of him and one of the Goalies kept throwing ice in the other teams face! Kristina(mi/rosey) and I talked a lot too and walked around, as soon as mom figures it out we'll get pictures.

After the game we went to see Simonne of course! We were the Infamous iPodicle Twins(I made that up while we went camping last summer)walking around in socks and we got a lot of good pics there too. We'll get them up as soon as possible, now that we have a Digital Camera (actually it's only a borrowed one, Thanks Shelley!!!) We didn't get to go on a Scrub Mission(if you're thinking "what the crap's a Scrub Mission??", see previous update)because they were redoing the floor....we think they are actually killing Dinosuars down there from what the already finished floor looks like.

I will update more tomorrow, keep Donovan(in/babydonovan)and Dakota(sc/dakota) in your prayers please!

Love, Sammi Jean

***** WED AM - This prayer request is for someone very important in Sam and Alec's life..their hamster Pistachio is struggling, we're not sure what is wrong with him, but he seems to be dehydrated, Sam is spending every minute with him. She will be a good doctor when she grows up. She is syringe feeding him a bit of sugar water and it seems to help. He really deteriorated over night so she is going to take him to her dads tonight, since I have to work. Alec is home today too, he was vomiting again this morning. This flu even seems to have hit the animals. Sam has had horrid headaches the last couple of days, I think if Pistachio wasn't sick we'd be downtown, but there's no way she'd leave him here by himself. So, as silly as it sounds, please pray for little Pistachio, the nicest hamster we ever met. ****We had Pistachio put to sleep today, he seemed to be in a lot of pain, or maybe having seizures. The kids were getting really upset watching him. It was actually brave little Alec who suggested it. The vets office was really nice, she said it looked like he had some kind of tumor. They gave us his footprints in clay with his named written on it, which meant a lot to Sam. She wanted us to bring him home but I told her the ground was frozen and we wouldn't be able to bury him. Sam and Alec took very good care of him. Sam is having a lot of back pain and headaches today so I wouldn't be surprised if we end up downtown tomorrow. I have to work tonight so I took a really good nap this afternoon.

On a happier note, I have uploaded pictures from a digital camera to photobucket and I'm about to attempt to attach them to Sam's website, so check my progress later.

Friday, December 1, 2006-Hey ya!

Hey ya, if ya haven't seen the new video on my page, ya don't know what ya're missing!! Ya have to watch the whole thing too! Not just listen to it.

OK, I'll stop now. Today hasn't been that great Headache-Wise, I have a pretty bad pressure headache right now. The flank pains I was having yesterday started at about 2:00pm and didn't go away until some time in the middle of the night! That is the longest one of my "Kidney Attacks" has ever lasted! So my side was hurting and I was going to the bathroom every 20 minutes(not kidding)for about 12 hours or so...

This weekend is going to be pretty busy...YAY! Saturday we're going to get our Christmas Tree for dad's house, YAY! I think checking the lights for the Tree and changing the bad bulbs is my favorite part of Christmas...seriously! I like the decorating part, too, YAY! And Sunday..............

HOCKEY GAME WITH THE CUTEST ZOE EVER!!! It's gonna be so awesome,(you know what's coming)YAY! YAY! YAY! I'm going to be paired with an old(I-I-I mean former(of, course!)) Red Wings, and he will walk me out onto the ice and I will be announced to the WHOLE CROWD! YAY! And I will get a Jersey with "Robertson #9" on it!(just to stump you)YEAHYUH! Plus I get to watch a hockey game, YAY!

And on Sunday we're going to see Simonne again! YAAAAAAY! And(ssshhhhhhhhh)we will go on what Simonne calls a "Scrub Mission" where we sneak down stairs and(ssshhhhhhhh)steal a pair of scrubs.....SSSHHHHHHHHH!

I'll update after this busy week-end is over!(YAAAY!)

Love, Sammi Jean
P.S. I am selling shirts on Zazzle, and if you would like to see them go to www.zazzle.com/funsized410. I get 10 percent of the profits, which I will donate to a Foundation, haven't decided which Foundation yet. YAY!

Thursday, November 30, 2006 8:06 AM CST

I do not even know what to say about yesterday. Simonne called me in the morning and asked me if we could pick her up a little late, because there were some Detroit Red Wings who were coming to visit her at 2:30. I said, how about if we come a little early. She said sure. So we got there about 2:20. The parking structure was a madhouse. The Red Wings opened a new waiting area on the first floor and tv cameras were there and it was just packed. So we got up to her room. Next thing we know, about 6 or 7 DETROIT RED WINGS walk into her room, with their head coach, Mike Babcock and just start talked to us like it was nothing. Of course, my face just turned beet red. The kids were speechless. Our child life specialist, was so glad to see us, she introduced Sam as a patient there also. I explained we were taking Simonne home with us for the afternoon to decorate our tree and that they had been friends for a couple of years. They thought that was pretty cool. We took pictures, they gave Simonne some souvenirs, signed a book for her, they were awesome. Well, I thought that was the end. Little did I know, there was more. We were getting ready to leave and they told us there were some more Wings up in the 6th floor play room. So we went up there and there was Kris Draper playing Chutes and Ladders with 2 little patients. Dominik Hasek and Danny Markov were sitting at another table "trying" to do a Spiderman puzzle, so I suggested to Simonne and Alec that "maybe" they needed some help. So Simonne, being the shy girl she is, sat down and started helping. Then Alec went over, sat by Dominik Hasek and started helping him with the puzzle. They were very gracious, the kids stayed with them til they finished the puzzle. We took a couple of pictures with Mathieu Schneider, he was very nice, he and I chatted for a few minutes. I got a phone call in the middle of it, and I told Herb I couldn't talk to him at the moment, Alec was busy putting together a puzzle with Dominik Hasek. Alec took the picture of he and "Dom" to school.

Then we got in the car and drove to Greenfield Village to get our tree. Greenfield Village is one of our favorite places on Earth. It's a historical museum but it's outside. It's old houses and windmills, and trains, and steamboats and carosels (sp?) and all kinds of cool stuff collected by Henry Ford. This year was Alec's turn to pick out the tree and he did an awesome job. We took pictures and as soon as I figure out how to transfer them, I will. ( I miss you Caitlin ). We came home and the silliness started. The kids just had a ball. We ate Chicken wings and mashed potatoes and stuffing and corn and they drank pop and had brownies for dessert, made by Sammi. Then Chris came over the cut off the bottom of the tree for me. Thank you, Chris!!! We got the tree in the stand and put the lights up and the kids put the bulbs on. Then we went for a walk, because you know in Michigan, it's always 65 degrees at the end of November. We had to take a picture of Simonne at every decorated house. Sam and I took her back around 9:30. It was just an awesome day. Sam and Simonne had a great time. We all did for that matter.

Sam felt like crap all day, her burr hole sprung a leak, it started bleeding, I think that stitch that was in there must have come out. We'll keep an eye on it. She had a really bad headache all day. Maybe too much activity? She says her chest hurts where her tubing is too, but that's happened before and they've never found anything so I'm not too worried about that. Her teacher comes over today, she's been awesome. I hope Sam feels better today.

I'm trying to get caught up on my email. Between the internet being gone for a couple of days, and work I have about 200 emails to go thru. Be patient please!! :)

~~**Thursday**~~ Hi this is Sammi, just writing to say WATCH THIS VIDEO!!! You can't just listen to it, you have to watch the video to fully enjoy it's greatness! Thanks for sharing it Julianna!(canada/julianna)

I'll write an update later if I'm still feeling OK, I'm having those Flank Pains again, hopefully it doesn't get bad like last time....

Love, Sammi Jean

Wednesday, November 29, 2006 2:53 AM EST

Sam has a really bad ear infection, hence all the pain, headache, dizziness etc. She's on a antibiotic and I think she's feeling better. Tomorrow is going to be a good day. Simonne is getting a pass from the hospital to come pick up our Christmas tree then come home with us to decorate it. How cool is that!?!?!?! We have to have her back by 10pm. We can pick her up at 2:30. So I got off work early to get some sleep, clean up the house, clean out my trunk and the car, pick up some chicken (Simonne only eats chicken apparently) and have some fun!!! We're so excited.

Samantha has been invited to be a guest of honor at Zoe's fundraiser on Sunday. She'll get to walk out on the ice with a Red Wing and have her name announced, watch the game and it'll be a lot of fun. We can't wait. And even better than that, Zoe's PET scan was NORMAL. Way to go Zoe!!!! The cutest Zoe ever is now the healthiest Zoe ever!! Woo Hoo. Ok I'm going to bed. We'll update tomorrow, actually maybe Sam and Simonne can update together, that would be very entertaining.

Sunday, November 26, 2006-sniff, sniff, sniff, sniff, sniff, well you get it.

Yeah, that's me. Yes, this is Sammi. I'm going to update while I feel just blah, not omigod shoot me! The one good thing about colds is that my Endocrinologist says I can have as much salt as I want! And she says to have a lot of suger too. So I have my salt shaker in my right hand(yes, I eat the salt right out of the shaker) and a glass of pop in my left. I crave those things bad when I have a cold. I'm also having those aweful strikes where my head hurts bad for a few seconds and then it stops. I have a bad feeling about that. Whenever I had the strikes my pressures would go as high as 30 where it's supposed to be between 0 to 10.

I had a good time at Rachels, but around seven in the morning my throat started killing me so I wasn't as active as I was the night before. The sleepover included watching disney channel for the Pop-Up version of High School Musical, pointing out how Zac Efron's red plaid boxer shorts were showing in one of the scenes, playing Sims, putting out traps for their newly missing hampster, sleeping on the floor, finding the hampster eating our traps, and making a new language. I made up two phrases,'You're outing my freak!' and 'Tooty Fruity!'. The last one means cool, awesome, great. Things like that.

Now I'm typing this, Alec's watching "Phil of the Future, Mom's washing the guinea pig cage, and Abby is sleeping next to the Guinea Pig on the floor after she was done watching my hampster Pistachio rolling around in his hampster ball. Abby-so-Flabby isn't even LOOKING at the Guinea Pig! She's just laying next to it. And Alec just stepped in a mysterous puddle where the hampster was previously rolling around by....

So that's it for me but Zoe needs prayers. Her doctors found a "spot" on her collar bone but are not sure what it is. Pray it's just scar tissue or something else insignificant. She has a PET scan on Tuesday so really pray for her then. Her link's below under Cutest Zoe Ever!!

Also yesterday would have been Jeffery and Suzie Ott's daughter Stephanie's sweet 16. They have done so much for me and a lot of other people, please stop by her site and give some encouragement and kind words, as they have done for so many people. Her link is above. Thank You so much Jeff and Suzie! I'm sure everyone who knew her and read your updates won't forget Stephanie. Even though I didn't read your updates while she was sick I read them now, and they inspire a lot of people to take action and be kind to everyone, like you are everyday.

Saturday, November 25, 2006 2:47 PM EST

Jinx....Sam came home from Rachel's today feeling like total crud. Bad Bad Headache.... Turned down lunch with my sister and her bambino. I think it might just be too much fun in the last couple of days. Late nights, not enough sleep, laughing, playing, and generally being Sammi. So today we're just resting, relaxing and generally being Ellen. Alec has been having a blast with DJ. They've been outside playing all day. See, this is Michigan. It's almost December, hence it's 55 degrees outside and sunny.

Today we're saying special prayers for Dakota. He's been battling medulloblastoma for a long time and his mom is a super special woman who lost her first husband, Dakota's dad, to a brain tumor. Please pray for their whole family.

****Sunday am....Sammi has a really bad cold, hence the sore throat, headache and constant sneezing. I thought maybe it was just her allergies, she started sneezing last night. But she's full blown blowing her nose, taking her desmo pills cuz her nose is too stuffy. Poor thing. I'm going to check into zicam, however, I have a feeling it's too late.

*****Later on Sunday, just got a call from Childrens, Simonne is in the hospital....We are on the way down to see her...Simonne is our "drop everything and get down there" girl. We love you Monney and are on the way. Prayers for her please. I wonder when she got there. In my slightly obsessive way, I call about once a month to see if she is there. I was going to call the other day, but she was just there a few months ago so I did not call. Bad Ellen.

Friday, November 24, 2006 1:39 PM CST

We haven't fallen off the face of the earth, I was working and we lost the internet for a few days. First of all, we hope everyone had a Happy Thanksgiving.

Sam has been feeling pretty good. Headaches here and there, but she's had a pretty good week. We saw Dr Sood, he basically said what we thought he would, it's not her shunt, he was glad she had the 2 headache free days, he thought that was a good sign and he would see her in a year. I am really hoping to get her back to school soon. That is my goal.

Caitlin had surgery on her collar bone on Tuesday. Dr Zaltz (or as Caitlin calls him, Ira) wanted to take the broken pin out). But he was unable to. It's completely encased in bone. Her bone isn't normal bone tho, it's bone graft. So he wasn't comfortable cutting into it, to remove it. He did remove a bone spur in the back and some adhesions in the front. He says that when she moves her head now, the skin in front of her collar bone should move with it. That, and the bone spur, have probably been causing her all the pain. It was so good to see her. Me, Sam and Cait went to eat lunch with Nik on Wed and had a lot of fun.

I will get Sam to update tomorrow when she comes home. She's spending the night at Rachel's tonight and I can assure you she's so excited. Rachel is her best friend. Alec and his best friend DJ are staying here. We are going to visit my sister Jenni and her little guy at my dads tonight. I am thankful I got 2 good days of sleep this week. I am thankful for a good but annoying job. I am thankful for all our internet friends, who take such good care of us...but most of all, I am thankful for my children, who have no idea how much joy they bring to my life...love, laughter and happiness. They just have no idea.

Friday, November 17, 2006 9:32 AM EST

Sam had a really good day yesterday (I am typing with one hand, knocking on wood with the other). No headaches and only mild flank pain. I gave her a cortef right away and it went away. We have an appt to see nephrology in January. The end of January. Apparently they have no urologists at Childrens right now, so we have to see the kidney guys. Yesterday was the first headache free day she's had in months. (Still knocking) That's about all from here....I have to work this weekend so I probably won't update til Monday...Unless Sam gets off her lazy rear and does it herself...That would be great!!!!

Wednesday, November 15, 2006 1:12PM EST

I took Sam to the allergist yesterday, she is allergic to trees, but that is only supposed to bother her in March and April, ragweed, weeds, which are August - first frost bothers and house dustmites, which are year around. So we are going to try Flonase first, he said her allergies to dustmites are bad enough to cause headaches. But of course, he has no idea if that is what is happening. As far as the hives on her back, he suspects it is her tubing but there is no way to prove it and it is not bad enough to do anything about.

She seems ok, tired and crabby and headachy. We are going to see Dr Sood on Monday, called and took care of the referral. I am off the next 2 days, thank Gosh....Work the weekend. Caitlin is coming home on Monday, to get the pin out of her collarbone on Tuesday. Was hoping Nikolaas could come home on Friday, to have all kids home for one night but he has to work. I am really bummed about that. Really bummed. But maybe I will get to see them all on Thursday at work, somehow. I have to work Wed and Thurs night. UGH.

****Sam had another kidney attack today, we rode it out at home...Then she threw up so we were getting ready to go down town and she felt better so we unpacked and are just resting now. She was in a lot of pain so I guess I'm going to call nephrology tomorrow and make an appt. I hate this. Oh well, what choice do we have....

Monday, November 13, 2006 8:15 AM EST

Sam went to Nana's on Saturday night then spent last night at Aunt Ruthies. She had a lot of fun. We are going to re-schedule her ns appt as I forgot to get a referral. I think I'm losing my mind. It's so easy to go see the nurses, that I guess I just forgot you need paper to go see the docs. Seriously, I think it's ridiculous for a shunt patient to need a referral to see the neurosurgeon. We only go see him when we are desperate. But I guess we can wait another week. Tomorrow we see the allergist and I guess that's it for the week. Her teacher comes today and Thursday. I have to work tonight, tomorrow and Fri, Sat and Sun. Blah.

Friday, November 10, 2006 4:39 PM CST

They did an x-ray yesterday, they said it looked fine, so as usual we still have no idea why she's feeling cruddy. It's almost embarrassing to have to keep saying this. We hate going down there now. They look at us like we're crazy. Well, it feels like that anyway, I don't think they think that. They keep saying her back hurts from having so much surgery. But she hasn't had surgery on her back in over a year.

We're going to see Dr Sood on Monday. He's a straight shooter. Sam is going to write him a letter and tell him how she's feeling. She has a tough time verbalizing to him, not that he's intimidating, except that he's a doctor. Maybe something will pop into his head. Who knows.

I was going to take her to see a movie, but she's too tired. How can you be too tired to see a movie? I guess she's pretty tired. Thanks to my Lt who let me leave early on Thurs so I could get an extra hour of sleep. And to Al who let me do his work so I suggested he suggest I get to leave early. It all worked out for all of us. Thanks guys!!!

Tuesday, November 7, 2006-grrrrrrrrrrrrrrr

My back looks really funny and it's numb around my scar, so we're going downtown tommorrow. Though it's probably not going to amount to much. They will probably look me over, say,"I don't see anything, so it's not there and you're fine.", and send me for an x-ray 'just in case'then we will go home.

I also have an allergist appointment later this week to see if I could be allergic to my shunt. I am allergic to 5 meds, sensitive to another, I have Redmans Syndrome with Vancomycine, and I can't have any tapes attached to my skin(including Bandaids!)except paper tape. I think it's possible I am allergic to either the plastic-3 foot long-shunt in my abdomen and Subclavian Vein or the antibiotic cream they put on shunts before they place them. The headches and backaches are same as always also.

So pray they find something! That may sound weird but if they find something, then they can try and fix it and make me feel better. This is getting frustrating.....

Love, Sammi Jean

******URGENT PRAYER REQUEST...November 8 Nicole....see link above...Her mom just sent a message to our Pediatric Brain Tumor group and Nicole, who has been battling her tumor for 15 years (she is 18 now) has growth into the pons of her brain, which is never good news. But if anyone can beat this, it is Nicole. She has never given up and will not now. Please sign her guest book.

We are waiting for a call from Dr Soods office, they are going to talk to him but he is in surgery now. So when they call back, I will update. Bye for now!!

***Mary from Dr Soods office just called. Tomorrow morning I'll take Sam downtown, and we'll see from there. Pray that the two hours of sleep I'll get tomorrow will be enough ;)

Monday, November 6, 2006-whew!

Today was a busy and tiring day! We had to get up at 7:30 to go for Alec's procedure, because we had to be there by quarter after eight. Also Mom gave Alec TWO benedryls this morning, so by the time we got up to pre-op(with me leading the way, even the escort!;0>)he was pretty zonked, or zzzzzonked! So, needless to say he went to sleep a lot quicker than I usually do. Of course, 2 nurses recognized me and the Anesthesiologist (yeah, I spelled that right!) with Alec recognized Mom as, "The lady who likes to tell stories"!! I like people talking to me while I go to sleep sp whenever Mom goes back she has to talk about pretty much anything, usually her own past embarassments. It usually takes me about five minutes to go to sleep because I like to talk back, and when I'm drowzy there's nothing stopping my voice box!! And the whole time Alec was back in the OR I was thinking,"So THIS is how it is on the other side of the 2nd Floor!"

I'm feeling good today, but I'm really tired. Apparently 11 hours of sleep doesn't cut it for People on Neurontin. It's "Let me sleep 13 hours or risk some major 'Sleepy-Eyed, Tousled-Haired' butt-whoopin"!! Or I'll just yell at you from under the blanket....whatever I feel like.

Though at Childrens, my stomach was hurting bad kind of where my valve is at. And it looked a bit swollen and felt to me like there was fluid inside. It's still swollen, but I don't feel pain or fluid anymore.

Kelly(her link is above) and Taylor(fl/taylor) could use prayers, they are going through some rough times, but they handle it like nobody's business! They are such an inspiration to me! Like all the CB kids.

And thank you for the awesome backround, Suzie and Jeff!! (THANK YOU SOOO MUCH!!!)

Love, Sammi Jean

Sunday, November 5, 2006 1:07 PM CST

I've been working all weekend, but the "word" is that Sam has been feeling ok on and off all weekend. She's been getting weird hives on her incision on her right flank, I still think there's something going on there but everyone keeps saying it's nothing. Of course, she only gets them at night and on the weekends.

Ok big prayers are needed for Alec. He's having his "procedure" done tomorrow and he's pretty anxious about it. Please pray for his comfort when he goes to sleep and when he wakes up. I'll be with him when he goes to sleep but they don't let parents in recovery. Of course, Alec might prove to be a special case and maybe they'll let me back there.

I'll update tomorrow after we get home to let you know how he did...

I just read a website that kind of explains how I feel. Obviously Sam doesn't have cancer but Keegans mom hit on a lot of things that hit home with me. I always tell people that I'm fine and usually I act fine but I'm usually not. It's hard to explain. I have to be fine in front of the kids, especially Alec. He can't handle me being stressed out, it stresses him out. That in itself is stressful. I don't want to lay my problems in my friends laps, I feel like I would be "asking" for help. Does that make sense? I don't know. But please read her journal entry. It explains it. Better than I could.

Keegan

Once Alec was complaining about me being too goofy. I told him it was that or me lying in bed curled up in fetal ball drooling of out of left side of my mouth, it was up to him. He decided to take goofy mom. Good choice. But the bed looks good sometimes.

Friday, November 3, 2006-WHAT'S GOING ON???

I'm really tired today, so this will be short.(yes, this is Sammi...mom's taking a nap....)

They did an ultrasound and didn't find any Hydronephrosis, but there was a white spot they are not sure about in my right kidney. But the pain(the excruciating pain, seriously, I've never felt anything like it!)was on my left side, so I have no idea's except maybe I passed a kidney stone before the ultrasound because the pain stopped like that(snapping fingers right now)in the car? Maybe the white spot in my right kidney is another stone? They think it could be a vessel but if it was, wouldn't there be more white spots representing vessels? So, I don't know!

Lana Beth passed away last night and she finally got her long-sinced earned Angel Wings. Please go to her website and leave a comforting message at this time.

She was only 11, I think that says how upset and mad I am...The whole month of Septmebr, which is Childhood Cancer Awareness month, there wasn't one commercial or billboard. How will we find a cure if there's no awareness?? No, I didn't have cancer, but I've lost a lot of friends and so have most people connected on caringbridge.

caringbridge.org/ga/lbw

We need a cure!

Love, Sammi Jean

Thursday, November 2, 2006 4:06 PM CST

Taking Sam downtown, she's in a lot of pain, that flank pain again, Please pray for her, she's crying, which she never does...OK gotta go...

*****11:48pm...We just got home, it looks like Sam may have a small kidney stone in her right kidney, as soon as we got to the hospital she felt better, of course. I've never seen her in that much pain, except the time they took her shunt out. So we're going to go see a urologist in about 10 days. Hey, why not add another specialist to the group. Ok, we're going to bed.

Thursday, November 2, 2006 12:03 PM EST

Well, I called Neurosurgery and we have an appt to see Dr Sood on the 13th. I'm sure he won't have anything helpful to say, not that he doesn't want to help but he doesn't think it's her shunt, and we just saw him a few weeks ago but that was the nurses recommendation so that's what we'll do. We could have gotten an appt on the 6th but Alec's procedure is on that day so we'll be tied up. I am going to get her a referral to an allergist as she still is getting huge hives on her back by her shunt, she had 2 the other night. I don't know if that is related to her headaches, she only gets them about once a week or so and her headaches are constant. She's still sleeping by the way, she had a really rough night. The strongest pain pill she can take is Advil. We have increased her neurontin to 200 mgs 3 x a day and all we've noticed is that she's tired all the time, which is what Dr Sivaswamy said would be the major side affect but we'll give it some more time to work. She did feel better on Monday and Tuesday so I'm thankful for that.

Ok, we're still praying for Taylor Kelly and LanaBeth

Monday, October 30, 2006-Almost Halloween!

Yeah, Yeah, I'm up!! I'm feeling a lot better today, we went to get pumpkins for mom's house but mom doesn't like carving them (her exact words,"The Guts are gross!") so we're just going to stick some of my "Mr. Potatoe Head" faces in them! We also got some webbing to put on our front bushes. I'm being a greek goddess for Halloween, too bad Halloween isn't today! We are having such good weather right now but it's supposed to get colder tomorrow. How Rude!

Nothing else really going on, so I'll update later if I feel good enough.

Love, Sammi

October 31st, Hi this is Sammi, I only have a sec. to type so this will be quick. A girl named Lana Beth really needs prayers right now. You can go to her site and just drop an encouraging note.

LanaBeth

P.S. I just had Sam and Alec weigh themselves...Good news Alec over 58 lbs, which is awesome for him. Bad news Sam down to 73, which is bad for her. I'm going to call neurosurgery tomorrow. I know there's nothing they can do but I'm getting really frustrated. If she's not hungry, what else can she do. If they put her on steroids for appetite, they cause headaches so that's not really practical. I just don't know what to do. Ok, little prayers for Sam to start her Pigistic ways again.

Sunday, October 29, 2006 12:10 AM EST

Well, Sam is still sleeping, but we were up late last night. We wanted to see if our cell phones would change when the time did (they didn't) but the computer did. Can you tell we're really bored? She felt really bad all day yesterday until about 11pm, then perked up. We didn't make it to the movie, maybe today. It's still really windy here today, I thought it was supposed to calm down a bit but things are still blowing around. At least it's sunny today.

Ok I'll update later when she gets up..Take care all!!!

Saturday, October 28, 2006 10:10 AM EDT

Sam had her endo appt yesterday. Actually it was December 6, but somehow I had it written down for yesterday. I don't know how that happened but they were nice enough to see us anyway. She is now 5 feet tall, it's official. Once the endo says it, it's official!!! Of course, weighing 75 pounds isn't good, she's below the 5th percentile for weight. But we'll work on that. She's cking her electrolytes, thyroid and growth hormone. Her growth slowed down, but we did stop her growth hormone shots for a few days and brought them back up slowly to rule out that causing her headaches so that could be why. She's back up to her normal dose now. We also went and got her medos valve adjusted up to 130-140. She says it's felt like low pressure headaches and her burr hole has been really deep so we had to do the usual 8-10 x-rays. Her valve is completely turned around so they practically have to stand her on her head to get the valve in the x-ray. Nothing is ever easy with her. OY

It's 11:30 and she's still sleeping. Dr Sivaswamy said the major side effect of the neurontin increase would be sleepiness. It also could be the fact that it's raining and about 40 degrees. It's been raining here for about 3 years. It seems that way anyway. OK, here's our prayer list for the day. Kara Samantha Mills Kelly

A big huge thank you to Sam's Aunt Robin, who gave her a sewing machine the other day. It's set up on our kitchen table. I can't tell you the pleasure it gives me to see Sammi doing something she so loves. I just kept saying..."Sammi's sewing". Then Alec got into it..Finally she told us to shut up. But it was so cute.

Tuesday, October 24, 2006 4:01 PM CDT

We saw Dr Sivaswamy....She said first of all we have the wean Sam off the Vicodin. It'll take 2 or 3 days. To say Sam isn't happy about this would be a major understatement. They say she's probably getting rebound headaches. She says no. But they've said all along not to give her tylenol, motrin etc. We're going to increase her neurontin to 200 mgs 3x a day. She's on a real small dose even for her weight so she says she feels this may help a lot. And maybe she won't sleep 13 hours a day.

Now for her weight. I heard the medical assistant weighing her out in the hall. I heard the horrid words "75". I cried. I told Sam I was sorry, "I know I'm not supposed to cry in front of you". I only cried for a minute. But this weight thing is really becoming a problem. She is going to be 14 years old in 3 and a half months and she weighs 75 fricking pounds. I'm just flabbergasted. Lately, she's been doing the "I'm hungry, taking 2 bites and losing her appetite" thing. But she has hit the 5 foot mark. That's something. She's sees the endo on Friday and then we're done with doctor appts for a while, I hope. I was driving for 3 hours today, Alec to his GI and Sam to neurology and I'm just tired. We all slept like crud last night and we're tired. So I'm cooking dinner and then putting on my jammies and relaxing...that's the plan anyway...

Sam is with her homebound teacher doing her MEAPS. Dr Sivaswamy was very impressed at how smart Sam is. When she walked in, Sam was reading an article in Time magazine, which was examining if God wants people to be rich or not. I think he wants me to just be a little richer, just a bit. I don't need to be filthy rich. Just a little richer.

Monday, October 23, 2006 7:49 PM CDT

Sam went to dance tonight!!!! But now she has a bad headache and backache but I am sure it is worth it to her. She felt pretty good today. She has a neurology appt tomorrow afternoon. Maybe we can get some direction for her headaches. There is no where else to go. Nothing from neurosugery, (her CRP came back normal), nothing from Endo, so this is it.

That is about it from Michigan today....Take care all and we will update tomorrow....

Saturday, October 21, 2006 12:43 AM CDT

Sam's ultrasound came out normal, no extra fluid. So she went to Nana's and promptly got a huge hive on her back, near one of her valves. She gets these from time to time. Why do people get hives? Allergic reactions. I wasn't able to get her C-RP results. This would show any infection. I don't know if it would show any inflammation. I honestly think she's allergic to something in her shunt. They have assured me over and over that that is not possible. They have tested and tested and kids are not allergic to anything in the shunts. Well, I think that's ridiculous. There's gotta be a kid somewhere that's allergic to something in the shunt. Sam would be that kid. She's allergic to tegaderm, Silk Tape, bandaids, she is so sensitive everytime she gets an iv and has several drug allergies. Is it out of the realm of possibility that she could be sensitive or even allergic to a component in her shunt? I think not. She gets rashes on her trunk, these hives & red marks. Yesterday she had a white track up her abdomen that followed her tubing, but of course it was gone by the time we got back to the office. We saw a nurse we've never seen before and I was upset by the negative results (which sounds crazy but people in our position probably understand) and she probably thinks I'm crabby mom of the year and asked if Sam has any other symptoms. I didn't even want to get into it so we just left.

I just talked to Sam. Anyone who knows her knows that when she doesn't feel good, she doesn't like to talk. She hates talking on the phone even less than normal. So she mumbles, gives one syllable answers and generally is very uncooperative. So I am taking it from our one sided conversation that she feels like crud. Ok, I'm going back to bed, wanted to update. Have to be back to work in 5 hours, UGH.

Thursday, October 19, 2006 7:45 AM CDT

Urgent prayers needed for Kelly. She is having more problems from pressure from her tumors...Let's storm heaven with prayers for this brave girl...

On the Sammi front, she has a swelling on her chest where her tubing that leads into her subclavian vein is. So if it's still there today, I'll be taking her downtown. I'm not too worried about it...which in the Robertson world probably means it's something really bad...hahahahahaha. Alec had a great birthday. He's still sleeping, I let him stay up a bit too late to play his new Madden 06 PS2 game. I had to explain a bit of football to him. Am I a cool mom or what? His first game he wasn't doing so well. So I told him to play against the Lions and he'd probably do much better. And sure enough, he won the second game...PlayStation reflects life apparently.

****We waited downtown yesterday for a about 2 hours for "the referral that never came". Dr Sood wanted to get an ultrasound to do see if there was fluid under there. It's so frustrating. If I take her to the ER they'll do the US without a referral but if she's not admitted they want $50 as I walk out the door, which I didn't have. So we have to sit around and wait. She didn't feel well so we came home. So I'll call at 9am and if they have it, we'll go back down. You would think the insurance company would be glad we're not rushing into the ER and promptly grant my wish to have my daughter submitted to yet another medical procedure. I guess not. We got a nice phone call from the Otts last night and were able to thank them for the awesome packages they sent the kids. Pumpkins filled with sweets and little gifts. They arrived on Alec's birthday which was perfect. Thanks again and I'll get all the other info mailed off to you this am.....You guys are the best...

Wednesday, October 18, 2006 1:27 PM CDT

I've seen Sam smile several times today, it's really nice out, warm sunny and the barometer on my couch seems to be higher than it was the past few days.....But she slept til 1pm today. Not conducive to going to school.

Her homebound teacher came over yesterday and gave her some homework to do. She seems really nice. So she has some work to do now and she's even going to do the MEAPs, which is Michigans standardized testing that kids do every year. Go check out Alec's website, today is his birthday...#12!!!!

Monday, October 16, 2006-Yes, this is Sammi

There was a low pressure front today so I am feeling really crappy...(can you imagine telling the School,"The weather pressure is too low for my csf today..."?)Or as mom sooo kindly put it..."I have a barometer on my couch!"

Is that a compliment?

So same story as the last update but a couple kids really need prayers.

Taylor's spinal tumor grew a lot, and they have her on steroids but she could still use some positive messages in her guestbook.

Matty had his arm amputated Friday, but he is already playing in the playroom like nothing happened! He is a strong little boy but I'm sure he would appreciate some guestbook messages too!

Love, Sammi Jean

***Tues.***This Barometic Pressure Moniter is pretty miserable today...the pressure is really high today and the pain scale is 9 compared to yesterdays 7. That's 9 out of 10. Who knew the weather could have such an effect on how I feel?! Today when I first got up I immediatly got a headache and later when I'd get up everything went black for a second and I got dizzy.

Mrs. Karoub is pretty nice. She came over for the first time today. But it won't be the same as having a teacher who has taught me before, I don't know how I'll do in math. And it definatly won't be the same as going to school!

Saturday, October 14, 2006 8:55 AM CDT

Well, Sam starts homebound school on Tues with Mrs K. She's from an elementary school that the kids went to a long time ago. She will come over every Tues and Thurs. Caitlin knows her and says she's very nice. I talked to her after about 90 minutes of sleep so I hope I didn't say anything too dumb. Sam's excited about getting back to business. Hopefully we can get this headache thing figured out soon and get her back to school. She has an appt with neurology on Oct 24 and endo on Oct 27.

She's been feeling ok, still pretty headachy, it was pretty bad that day winter arrived, I think it was Wednesday. I guess low pressure arrival can bring bad headaches for kids with shunts. My friend Angie, says her daughter Samantha who is in Childrens right now had a bad headache the same day. Hopefully they're going home today. We went to my dads last night to visit with Calvin, who is in from Indiana. My sister went to a baby shower and so we went to help baby sit. I think today we're going to the Henry Ford Museum. We love it there. And then I'm working days tomorrow and will have Monday night off. That's pretty cool.

GO TIGERS!!!!!!

P.S. Linda, she absolutely loved the blanket that you sent her.....and the lotion and for sure, the stones and stone holder from Dan. Please tell him thank you. I read a series of books called the Earth Children series and the woman named Ayla had an "amulet holder" that held all the significant items from her life so I know exactly what it means. It's very cool. Thank you again. The blanket was perfect.

P.S. Sarah, Sammi is wearing the blue t-shirt that you sent her...Thanks!!!

Wednesday, October 11, 2006 7:25 AM CDT

Darnit, I just typed an update and it's gone in the world of Mozilla Firefox....Anywho, Sammi home with bad headache. 6 out of 10 on the Fujito scale of headaches (that's tornado talk for those of you outside tornado alley). So I called the board of education and we're going to do homebound studies. This is in no way related to home schooling which would involve Sammi's not too bright mommy in her education which would probably be a disaster. This involves a teacher coming to our house and teaching her. She had this in 5th grade and it was awesome. If her headaches are caused by the growth hormone, they should get better soon, but I'm not willing to wait anymore. I'm impatient. Well, maybe not, but impatient enough. (Ask Alec's gastro doc.)

Kelly is having a hard time and is in a wheelchair to give her legs a rest. Please sign her guestbook.

I was thinking about this last week but read it on Julianna Bananas website. The five girls that were killed by the maniac in Amish country in Pennsylvania. Their parents invited the family of the gunman to the services for their girls. I'm not sure if his family attended or not. Can you imagine if all people treated each other this way? The level of forgiveness displayed by the Amish is amazing and humbling. Terry (Julianna's dad) says that the Amish then turned around attended the funeral of the gunman to show their concern and support for his family. It's amazing and awe inspiring if you ask me. Everyone, from me to Osama Bin Laden could learn a lesson from the Amish. (it's not Usama it's Osama).

Tuesday, October 10, 2006 7:12 PM CDT

Sam stayed home today. I wasn't aware of this but she didn't get her growth hormone shots over the weekend and felt ok. So I talked to Dr Moltz and we're going to stop the shots for 2 days, then decrease her dosage by 1/3, to 1.2 mgs for a couple of weeks. By then we'll have an appt with Dr Moltz and see how she's doing. She had a particularly bad headache today but seems to be feeling better now. The plan is she will go to school tomorrow because she will be feeling better because she didn't do her shot. Checking with my brain tumor peeps, headache is the number one symptom of too much growth hormone. So that's the deal for today, we'll see..

Oh and my mammogram came out ok, my cyst has migrated and gotten bigger but that's ok with me. I'm hoping the fact that I can't drink Coke anymore (funky and very sad side effect of headache meds I'm on)will help with the cyst thing. The ultrasound tech scared me. He came in and said they want one on the right side too, I just lost it. Then he came in and said, nah, they were just being careful, nothing on that side.

I also knocked many things over today, my toilet is clogged and I've been moderately crabby today...all in all I've handled it pretty well...I'm ready for a day by myself, let's pray Sammi can go to school. Not that she's a bother, but I sit here watching her do nothing all day, feeling guilty that she's not in school. I should be able to figure out whats wrong with her when all these MD's who make zillions of dollars a year can't....am I a bit hard on myself perhaps????

Monday, October 9, 2006 11:55 PM EDT

Sam had really bad headache today. We went to see Dr Sood, he really doesn't think it's her shunt. Her ICP monitor 2 weeks ago showed good pressures, he thinks it might be the growth hormone. I left a message for Dr Moltz to call me back, he wants to stop it for a little while and see how she does. That makes me nervous. There's a lot more to growth hormone than growth. I suspect Dr Moltz will just draw blood and make sure her levels aren't too high. If they're normal, it won't be causing headaches. ( I think, I'm just guessing ). She's had some nausea, some dizziness....(Jalena, they did an MRI in March or April, it was clear, they're about 99-100% sure her cyst will never come back, Thank God) The one thing I've been throwing around in my mind is blood sugar. I know all this stuff can affect it. I will ask her about it when she calls me back...she's pretty good about it.

Things are moving kind of quick with Alec...ck his website for more...I wish I knew how to insert links...but there's one right up there.....

Sammi has been concerned lately about Kelly Muldoon...so let's say a few extra prayers for her...she asks me a lot of questions I can't answer...

Here's a poem she wrote and sent to Jake Raborn, I think it's beautiful:

JAKE OWEN RABORN

You always have a smile
Even when you�re in pain
A smile that brings out sunshine
In any patch of rain.

Your courage never wavers
You have never ending strength
You have faith in a miracle
For which you�ve had to wait

You are only 4 years old
But have a soul twice your size
And that is the part of you that matters
Because it truly never dies

Sam's poems are so beautiful in their simplicity. A lot of times I read poems and have no idea what I'm reading. Not Sammi's.

Ok, I'm going to bed soon, tomorrow is the big mammogram and ultrasound for me. I walked into my local grocery store and the lady handed me a pink ribbon and told me it was her last one. I'm taking that as a good sign.

Thursday, October 5, 2006-Remembering a Great Warrior.

The caringbridge world has lost an extremely brave fighter today. Jake Owen Raborn died today, of Cancer. His family and he had such Great Faith in the miracle that he would be cured on Earth. But the Cancer was just too strong for his body...BUT HIS SPIRIT WON OVER THE CANCER! Jake had such a strong spirit, that's all that matters because your spirit doesn't ever die. But he will be greatly missed by all that knew him, and he touched and inspired so many people. I'm really upset, that jake had to die, that many more children have died already. We need a cure FAST, and beacause we don't have one now, we have lost a lot of awesome kids who were fighters till the very end. And they will all be missed a lot, and remembered by everyone.

His family could use a lot of support right now...

caringbridge.org/la/jakeowen

My flank pain better, but it got worse in 2nd and 3rd hour and I was feeling sick too. So pray it doesn't get me in Adrenal Crisis again.

Again Thank You for the graphics Suzie and Jeff!!

Love, Sammi Jean

Thursday, October 5, 2006 8:20 AM CDT

Sam is complaining of flank pain again so I doubled her cortef. I'm not sure if I mentioned last time she was in the hospital, they did an ultrasound and found one of her kidneys had gotten a bit bigger and she has developed mild hydronephrosis on that side. It's normally something kids are born with but it means that her ureter from her kidney to her bladder has narrowed. She was complaining of not feeling like her bladder was empty before we even knew about this, the day she had flank pain. Now she's complaining about it again. They say the hydronephrosis is nothing to worry about, but it's awfully strange. I told her if it gets worse to call me, last time she started vomiting and then had the adrenal crisis. I don't know, this is just weird..

OK...next Tues I have my annual mammogram and ultrasound. My mom and her mom both died of pre-menopausal breast cancer, so as you can imagine, this is a very emotional and scary time for me. They have been keeping an eye on 2 cysts, hence the ultrasound.

Caitlin loves her job and is doing well...Remember, if you go to Chicago, eat at the Grand Lux Cafe on Michigan Ave. It sounds like a cool nice place to eat. Nik is working and having lots of fun it sounds like. I wish he'd come home a little more often but it's hard to get him here, he can't drive, because of his eyes. Alec is doing ok, same no changes but he's always a work in progress....

P.S. Thanks to Suzie Ott, who has transformed Sammi's page into a Halloween Wonderland....Suzie, I think you should teach classes...it's awesome..

Wednesday, October 4, 2006-ZZZZzzzzzzz.......

Well, I went down town to get my stitches out and, I don't know if it's because it was raining today or what, my back was hurting really bad. Probably the worst yet, and I had to take two Loritabs in like 3 hours! Which is a lot, and I went home to let it work before I go to school. Next thing mom knows when she got back from picking up our neighbor Tyler from school(he had a half-day and his mom couldn't pick him up)....I'm zonked out on the couch. So I didn't get to go to school today which sucks, but I am going tomorrow. There is a meeting tomorrow for kids interested in Builders Club(which we do a lot of community service and things like that)and I want to join. Sarah is the president this year so it will be fun to spend time with her too! We don't have any classes together so that's cool! Well, I just wanted to update you on today...

Love, Sammi Jean

Tuesday, October 3, 2006-back in business!

Day 2 at school went good...at least all my teachers recognized me today....I'M NOT KIDDING! My 3rd hour science teacher didn't know who I was when I walked in Monday!! I'm so serious! Sheesh I was there for the first week and some of the 2nd, wasn't I?

So, that's all the drama for the first day of school, I think!
I'm pretty wiped out though, I was yesterday too and I got a headache(the NORMAL kind).

So, the new song...It's called "Rush" by Aly and AJ(no one knows their last names...)and my interpretation of the song is that no matter how hard something in your life is, it's never the end of the world. You just have to get through it, somehow. Even if you don't what will happen, just look in yourself and know you can do it.

I got the package Sarah! I love the soap it smells awesome! I hope your finger heals quickly and you sister's knee and thumb do too!

Also, a girl named Sydney whose page I found next week could use some prayers. Her treatment for Neuroblastoma is extremely painful, and she has to get it 5 times a week.
Her website is caringbridge.org/fl/sydneysims.

Also Sarah(caringbridge.org/nc/sarahsimth)just learned she is in remmission from Neuroblastoma! WAY TO GO SARAH!

Love, Sammi Jean

Monday, October 2, 2006 7:25 PM CDT

Sam went to school today, had a good day and is looking forward to tomorrow....Thank God..that's all I have to say.

Sunday, October 1, 2006 10:38 PM EDT

Sam is going to bed, and planning on going to school tomorrow....I can't wait to get the call that she's there.... And then next week I'll be on mids and things can get back to normal....It's a plan man!!!!

Sunday, October 1, 2006 7:20 AM CDT

Sam and I are in Indiana visiting my sister, we stress dosed her for adrenal insufficiency and she seems a lot better now, altho she did wake up with a headache yesterday. We'll see how she feels today. I called school and told them she'd be back tomorrow. They said if it doesn't work out, they have the homebound teacher all ready to go. So we'll see tomorrow.

We went to visit Simonne on Friday, Sam is so happy when they're together. Everyone was commenting on how good she looked, new haircut is adorable. Ok I'll try to get a picture on, but I have no idea how to do it...I'll update later today... El

Wednesday, September 27, 2006-Prayers needed!

http://www.GlitterMaker.com/ - Glitter Graphics
Jake Owen really needs prayers right now!! His family just put him in hospice care...even though the doctors say there's nothing left to do, Jake's family isn't giving up! They all have such great faith, it never wavers and they all BELEIVE in Jake's miracle!!

www,caringbridge.org/la/jakeowen

OK, this is a venting-update, so watch out!
Well, a headache woke me up at about....~*6:30*~!!!! Thanks a lot, whatevers-causing-this-crap!! I couldn't get back to sleep so here I am at 9:30 updating. As mom said yesterday, I guess she called and said she wanted me on home-bound. So I basicly have 2 hours a week to get 2 WEEKS of homework done. And while I'm at home watching TV and popping Vikoden, I'm missing even more school dances(I missed half of them last year), I won't be able to do Dance Team(that was REALLY FUN last year), and I wanted to run for student council again, and I WANT TO GO TO SCHOOL!! But sitting in a wooden chair for 6 hours isn't working for my back, and I'm sleeping about(literally)15 hours a day when a headache isn't keeping me up.

We're still waiting for Dr. Moltz to call back, and see if maybe I need to up my dose of Cortef.

Also, Sarah I got your cat stickers!! They are sooo cute! Suzie and Jeff, THANK YOU!! I can't wait to get your present!! You are all awesome people and it's great that you commit so much of your time to helping other people. Kepp Going!! Also thank you to everyone for leaving all the notes in my guestbook, I love knowing so many people are behind me in this.

Love, Sammi Jean

***Update later Wed night...I have had one prayer answered, on Oct 11, I'll be going to midnights. Not really looking forward to it but it's what I need to do to take care of my kids, it'll be fun tho. Mids is a lot different than days, more in progress runs and chases and fun stuff like that...Sam is stress dosing today and tomorrow for her cortef and then I'll call Dr Moltz back and figure out where we'll go from there. Thanks Mary Alice for once again pushing me in the right direction..And Chicago sounds awesome...We are going again this weekend....I would move there in a heart beat....Ok prayers for Jake and our friend www.caringbridge.org/visit/samanthamills, who is being externalized next week and hopefully fixed up....Love, Ellen

Tuesday, September 26, 2006 8:03 AM CDT

Well, I just called school and told them we're going to do homebound. She is just in so much pain. I'm also going to call neurology and see if we can get her an appt to see the neurologist. This is ridiculous. I have to get a form filled out by Dr Sood then take it in and I imagine it will start next week. Now, if I can just get to midnights. I'm not thrilled about her staying home 2-3 days a week by herself. All night last night, she kept telling me her head hurt.

I think we're going to visit Simonne today, she called on Sunday and said she was going in for a tune-up. We can't get in to see the neurologist until Oct 24. This really sux...

***Noonish...Sam is still sleeping, my friend Mary Alice gave me some good direction as far as how Sam is feeling and what might be wrong with her. I printed off a copy of symptoms of adrenal crisis. There are 21 symptoms, many of which could be a zillion different things. However, if you consider she has headache, weakness, fatigue, nausea, vomiting (last week), low blood pressure, dehydration, rapid heart rate, joint pain and flank pain. I am waiting for her endo to call me back. She has 10 of the symptoms, plus her hands are shaking like I've never seen them. She slept 15 hours yesterday and went to bed at 10pm and is still sleeping. There's something wrong and I'm going to figure it out.

Friday, September 22, 2006 9:59 AM CDT

Sam's pressures are about 14-15 which is high for her so we're just going to do what we always do, wait and see how she does. Thank you for all the good thoughts for Sammi... Love, Ellen

****Sammi is home now, still feeling kinda cruddy but hoping and praying to go to school tomorrow. The neuros think it's her growth hormone giving her headaches. The endos think she's chronically dehydrated. I think her body hates her shunt. I don't think it's the growth hormone, as that usually happens when you begin, not 18 months into it. I definately think it could be the dehydration. So we'll be making sure, again, that she drinks enough. Her pressures came down after she woke up and were really good. So it's probably not that shunt. We're going to send her to school every day that we can. If we did homebound school, she would only get 2 hours of instruction a week. So we'll trudge thru. My biggest prayer today, besides her feeling better, is that I get to go to midnights soon. I don't want to but at this point it's a necessity. Ok we'll update more tomorrow....Love, Ellen and Sammi

****P.S. Thanks to Jenni and Beth Simsack for the box of books...Alec and Sam have both been perusing them and Sam read one in the hospital...Thanks again and that's awesome about the clear scans!!!!

Thursday, September 21, 2006 7:10 AM CDT

Sam has developed some pain on her left side and is vomiting, which can be very dangerous for her....please pray....we're on our way downtown....love, Ellen and SAmmi

****5pm....Sam is feeling better, she has hydronephrosis in her left ureter which is probably causing all the pain and vomiting. She's been admitted and they still plan on doing the ICP monitor tomorrow. They gave her fluids as her sodium was high, which means she was dehydrated...I'll update tomorrow...

Wednesday, September 20, 2006 9:17 AM EDT

Well, Sam is having headaches all the time now, it's about a 6 out of 10 (pain scale) so she was pretty restless last night. I'm letting her sleep. Alec has a half day, he's been so stressed out about Sam that I'm afraid if I take her down before I pick him up, he's gonna loose it. He got "fired" as a door safety because I was tired, got up late, and got him to school 2 mins late yesterday. I went to talk to the teacher today, but she had a sub. If I pick him up from school and have to take him downtown with us, he's gonna loose it. If I pick him up from school, and don't spend the afternoon with him, he's going to loose it. So you can see, I'm in a no win situation today. I called the drs office, but they suggested I just wait til the nurse gets in. I really wanted to talk to a doc but they're probably all in surgery. Of course, I could bring her down now but I really don't want to disappoint Alec. Of course, if Sam is really really miserable when she gets up, I'll take her.

Yesterday the Special Education director from school called and wants to get Sam set up on homebound studies again, she hasn't been in school since last week. I left her a message and asked if we can wait til next week for this decision. The way Sam is feeling today, I'm starting to think we're going to have to do this. The other problem is both her dad and I are on day shift. If she went on homebound, she'd have to spend 2-3 days at home by herself. I have already talked to my road captain about going to mids when the girl in training is done. If she goes on homebound, I'm going to talk to him again. There's no way I want to leave her home all by herself for that long. I work 12 hour shifts and Chris normally doesn't get home til about 6 or so at night. So I really need to go to nights. OK, pray for Jake and Kelly and all the other brave kids out there fighting....

***Well Alec is pretty upset but he's ok, he ended up staying with Chris while Sam and I went downtown. They're going to put in a monitor on Friday...and we'll take it from there... I've been trying to get Sam to do more of the talking when we're there, she's the patient...she is intimidated I think. So today, she told Nancy she wanted the monitor. She checked with Dr Sood and he said ok. They were going to put her back down to 110 on her medos valve but then she'd be right back where she was on Monday.. So maybe we'll get some answers. Also, add Samantha Mills to your prayer list. She's the sweet girl we met earlier this year, she's going in tomorrow for an ultrasound and will probably be admitted, as it appears she isn't absorbing her csf anymore (sound familiar). Sammy has had more than 200 shunt surgeries...Maybe go sign her guestbook????? Her mom and I have talked about 20 times this week...Thank you Angie for everything!!!

www.caringbridge.org/visit/samanthamills

Monday, September 18, 2006-wood, mother, wood!

MOM!! You're supposed knock on wood....EVERYONE knows THAT! Well, now my stomach is leaking today, and I had to miss school today to get my valve adjusted but now my head hurts worse and my back is still the same. Tomorrow mom has to take me downtown and Dr.Sood said to keep me NPO....eh-oh. So once again....I'M NPO...THROW ME A PEANUT!!(actually I'm allergic, but I like fries!)

But Jake is in ICU with air in his brain from the last surgery and upon doing an MRI they found several new Brain Tumors! grrrr, I hate Tumors! Jake and his family need prayers! www.caringbridge.org/la/jakeowen

Kelly is starting a new Protocol, to try and get rid of a nasty Spinal tumor, in North Carolina. Pray it works for her as she is having quite a bit of pain from the stupid tumor. Her page is above with my caringbridge friends.

OK, Alec is yelling for the computer so gotta go and eat some fries!

Love, Sammi Jean

Sunday, September 17, 2006 9:10 AM CDT

Well, we're in Chicago....not without the usual Robertson travel disasters. I80/90 in Indiana...the same freeway we were on when this happened last year, only we were in Ohio. Flat tire....tow truck guy gives me a break since I dispatch. But now I have to get the tire fixed, can't drive 280 miles on a donut tire. But luckily we're near Merrillville IN. I know this place, my sister lives near here and we were just here. I drive right to Discount Tire, they give me a new tire, I have to pay 23 dollars for new warranty. Now some people would think this was a total disaster. I decided that since my car insurance co will reimburse the tow and I was familiar with the area where I needed to go to get the tire fixed (what are the chances of that), that God was still with me when all this happened. Sure, he could have let me drive on that tire another 4 years and I wouldn't have minded. Now on to the important stuff...

Caitlin and Rachel have a cute little apt in Logan Square area of Chicago. It's full of apt buildings and big huge houses. About 5 blks from the subway. They're as poor as church mice and since I had to pay the tow guy and for the tire I couldn't give Caitlin much money but she's starting her new job this week and she'll just have to get thru the next 2 weeks. We're taking Sam to the Chicago Art Museum today, she loves Monet and the art museum in Detroit only has one. They rented passes at the library for free. Pretty cool....

And the most important thing. Sam is feeling much better, she's laughing, hugging and generally enjoying life again. She's still having some back pain but we have Lor-Tab to help her thru that.... Thank God she's feeling better. I only have 27 hours of time off til next May. That's 2 days off..I even decided not to take Christmas off (if it's available) to save time. I don't know what I'll do if she gets sick again. Like everything else, just take it a day at a time...What else can we do????

*****Later, well I spoke too soon. Maybe today was just too much, but her head and back are hurting again and she has a bad cold. So she says she needs to be adjusted tomorrow. I am dreading calling work, I'm sure they get sick of hearing me call and ask for time off, but what else can I do. I will call as soon as I finish this. OK I'm calling now....Dial tone blah

Friday, September 15, 2006 7:26 AM EDT

Sam's headaches are really bad when she's up and her back hurts all the time. I just tried to wake her up so she can go to first hour and she was crying. I have to take her back downtown today. I don't know what they're going to do. It's so hard when we get to this place where nothing works. We go thru this agony. Then they do something to make her better for a few weeks and then we get back here. It's horrible. It's a horrible way to live. Yet we are so thankful that we don't have to worry about recurrance or chemo or radiation or any of that. But this shunt stuff is just overwhelming. Somedays I feel grateful. Some days I feel overwhelmed. We're supposed to go to Chicago tonight to visit Caitlin. She just got a job. If you're ever in Chicago, stop in at the Grand Lux Cafe on Michigan Ave. From what I understand, it's a really nice, busy restaurant. Just what Caitlin needs. She's going to be a hostess. She'll be the beautiful girl with the big brown eyes and greatest smile. She sounded so excited yesterday. She sent me a message the other day at 1 am..."I have 18 dollars and no job.". I wanted to send back, "I have 4 dollars and a job", but it was 1am. Now she has a job. So that's progress.

This is what I feel like we�re doing with Sammi�.back and forth, back and forth. They adjusted her shunt today to 100 and she says she feels better. She needs to stand up for the x-ray so they can get a good picture and not get 10 x-rays. We just have to watch for fluid accumulating. I guess when the pressure gets raised, that can happen. She already has a little bit of fluid that�s there, we�ll just keep an eye on it. They drew some blood just to make sure she�s not infected. We are still going to go to Chicago, but we�re going on Saturday am, just to make sure she�s ok. I am more comfortable waiting.

Wednesday, September 13, 2006 1:39 p.m. EST

I stand corrected....it was about 10 or 11 x-rays and 5 or 6 medos valve changes. The Medos is at 80 now,(it was 50 earlier) and my headache is worse but my backpain has gone away so at least I can sit. Nancy said it takes about 24 hours for the fluid to return to normal so pray it is sooner so I can go to school tomorrow.

Love, Sammi Jean

Tuesday, September 12, 2006 2:30 PM CDT

This is Sammi, my incision started to really leak, and I have what looks like a Fluid Pocket on my back. If you were here the summer of 2004 you know why this is scary for me. Spinal Fixes are REALLY painful and I have to lay on my back for up to 3 days. We called Nancy and she said to bring me down NOW!!

So here we go, not sure what they gonna do...

~three hours later~

Nancy just put some steri strips on and before that took out some internal stitches....but my back is hurting worse than ever and my head is spiking when I get up, so I don't know. Tommorrow they are going to maybe reset the Medos Valve and do an x-ray.

Love, Sammi Jean

Wednesday, September 6, 2006-SCHOOL AGAIN!!

http://www.GlitterMaker.com/ - Glitter Graphics

Need I say more??? My schedule for this semester....

1st Hour: Chorus Mrs. Kane.

2nd Hour: Phy. Ed. Mrs. Booker

3rd Hour: Science Mrs. Montemayor

4th Hour: Lang. Arts Mrs. Laviolette

5th Hour: Soc. Stud. Mrs. Kokal

6th Hour: ALGEBRA??? Mr. Allison

I didn't know I'd be taking Algebra! sheesh, anyway the teachers seem pretty nice...we just have to e-mail all of them and tell them EVERYTHING and we'll understand eachother...

Also in gym I can hardly do anything!! I can't do wait room because the shunt causes them to do surgery on my shoulder, and I can't do the pool(awwww!)because last year I was turning blue from the cold and now that I've lost weight and they've uped my Cortef dose, which caused unstable tempertures, that would probably be worse. Seriously, my fingernails would be purple and I'd be cold like for 2 hours after!

And in Chorus I plan not to miss any Concerts....Last year I had to miss CEDAR POINT!!! For a girl who rode the Millenium Force when she was 7 and it was the tallest ride at the time, THAT SUCKS!!

Hopefully my pressures are fine now, but my incsision seems to be infected. Like it's all red and not closed all the way and it's been a week and a half now. Today I was scratching it(it was itchy, I couldn't help myself!)and some clear fluid(AKA CSF)came onto my fingers. NOT GOOD AT ALL!

Oh, look-Abby's found a marble. She is just pushing it with her paw...she looks so cute with the pink satin ribbon I put on her today! awwwww, Alec untied it!

I also had some really bad back pain from sitting down in school, and this was just a half day. I don't know what will happen tomorrow with a full day, so pray the backpain will go down or go away. I guess I can take a Loritab but I'd be drowzy....I guees that's better than pain.

Love, Sammi Jean

***Friday....Sam went to gym today with a note excusing her from swimming (she gets way too cold) and weightlifting (it's too hard on her back.) The gym teacher heard she had a shunt and kicked her out of gym. (Sam's words anyway.) She's so ticked. She can play basketball, volleyball all that stuff, she can run, she just can't play contact football which I'm pretty sure they don't do anyway. So I left a message for her counselor to call me on Monday. The gym teacher totally blew it out of proportion.....I thought the school nurse had talked to all Sam's teachers but I guess not. I'm working this weekend so the kids are at their dads....Boo Hoo, I miss them. Love, Ellen

Tuesday, September 5, 2006-SCHOOL!!!!!!!

HI! The camping trip was awesome...not to mention it was the first time Simonne and I were together AND we weren't both connected to at least two tubes each! Simonne and I also developed a new taste for Botchie Ball! It was the first time we'd ever played and we kicked all the adult's(who had played tons of times before)BUTTS!!!!! Then we spent the whole evening as "iPodicals"(I made that up)where we had to stay together because we were both listening to my iPod! We were just singing and laughing trying to get out the door then we realized we didn't have our shoes on.....it was fun. Then we slept on the floor, on a mattress, of course! We also made up lyrics to "My Humps"....my version is called "My Shunts"! When I'm finished I'll post it....don't worry, it's nothing like the actual song!

But listening to her sleep, I realized how much her lungs are being damaged by Cystic Fibrosis....she was coughing all night and then she would make a moaning sound to calm her lungs down so she wouldn't cough as much. Then she'd go really quiet even though she breathes a lot more times a minute than most people. She is a real fighter....she has to fight for her breath every second, and she goes into the hospital every six months to fight for virus and bacteria free lungs. Her younger brothers do the exact same thing. They've delt with this since birth and it's caused real problems, but that's how I met her and were best friends because we REALLY understand eachother.

School starts tommorrow...YAY!! I can't wait, it's been waaaayyy too long since I've been to a full day of school and I'm feeling awesome! But it's almost nine 'o clock so I'm going to do my shot and pills and all that funstuff...
I'll update tomorrow about my first day, and the new song!

Love, Sammi Jean

Friday, September 1, 2006-Phew!

OK this is Sammi, Thank you for all the prayers! And today I got your package Candy! Thank you, the Angel is awesome! And I loved the flowers Linda!

And OH MY GOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Simonne is coming to the campsite Mom and I are going tomorrow! Mom just called! Oh my gosh, I haven't seen Simonne in sooooo long....I just can't get over the fact that I'm seeing her tomorrow(SCREAM!)!

Also, my Growth Hormone Pen croaked over the week so I have to use Diabetic Syringes but I like the syringes better so we're going to ask Dr. Moltz if I can use them from now on.

So I'm partying....in the post-op relaxed kind of way of course! Which means I'm just sitting here with mom drinking a milkshake to gain 11 pounds! Which is,unbelievably, how much I've lost...hey mom...NEW WARDROBE!!!!!

I'll update after the weekend....I'm still having a lot of Backpain which seems to be associated with some new leg pain...hmmm. That could mean that the shunt is rubbing against a nerve so mom says we have to watch that...no more spikes though! yay me! :0)

Love, Sammi Jean

alt="http://www.GlitterMaker.com/ - Glitter Graphics">
http://www.GlitterMaker.com/ - Glitter Graphics

****Sunday night....We had a great time camping in my dads 38 foot trailer.... Simonne looks great...we were so happy to see her, without being in the hospital. Her brothers and sister are just adorable. Spending the night with Simonne makes me realize how strong she is and how hard she fights for every breath. She is an inspiration to me and to Sam, to live with an illness and to thrive. That's what she and Sammi are doing!!!!

Sunday, August 27, 2006 8:48 PM CDT

Sam's pressures are still too low. They wanted to wait til Tues when Dr Sood could do her surgery, since he's in clinic all day Monday. But she would have none of that. She has a birthday party to go to on Thursday and is insisting on being home for that. So they told her not to eat breakfast tomorrow just in case they decide to do surgery. It looks like she's going to need 2 valves, one just isn't enough.

Please check www.caringbridge.org/wv/stephanieott. Stephanies dad is passionate about stem cell research. It could potentially save a lot of lives and end a lot of suffering. Please take a moment to let your congressman know how you feel. It's important!!!!

Monday am....Well, I hope this isn't a precursor of how things are going to go today. Caitlin locked my keys in the car. So Chris is flying home with my extra set then I'll go back up to the hospital..I have had a headache for 3 days, I guess it's just a little hint of what Sam goes thru every single day. It's horrid. I'm going to hop in the shower and hopefully feel a little better. I will update later when we figure out what we're doing.....Please pray for Sammi, I've been really sad for her lately. She's waiting for a delivery from American Girl. An outfit she ordered for Josefina. That's all it would take to make her happy. A doll outfit. For some reason that makes me sad, I don't understand. I guess it's just because that's such a normal thing. And it seems nothing is normal anymore. Ok I gotta go before I start crying again...Talk to you soon. Love, Ellen and her gorgeous brave daughter, SammiJean Elisabeth Robertson

******Later Monday am....They are going to put in a Mitos valve, which I guess is programmable and a regular valve, don't know which color. So she's going to have 2 incisions today, she's going to be miserable, the ones on her abdomen really hurt. But hopefully this will get her fixed up. Thanks to Linda for the beautiful balloon and flowers and to your friend for bringing it up, I forgot her name. I'll try and update later, but don't know what time her surgery is.....

Tues am.....Sam's pressures have been all over the place today. So they adjusted her new adjustable valve. They put a magnet over the valve and push a button and it adjusts. Then they have to x-ray it to make sure it's right. They wanted it at 60, it's at 50 but she seems to be doing better for the moment and she asked me to order her lunch. I haven't seen her this miserable in a long time. Please pray for her headache to go away....Love, Ellen

Wed am......Sam was in horrible pain last night..then they gave her a xanax and it knocked her right out. This morning she got dressed, walked around and now her pressures are spiking again. I guess we're just going to have to wait for the valve to settle down and for her body to adjust to it. She's doing ok but sad today. She's supposed to go to a birthday party tomorrow and then camping on Friday. I hope it happens....

Well, Sam is still having the strikes so no home yet. Altho I'm home tonight with Alec. I'm so happy to be here, but so sad Sammi's not with us. Chris is taking Alec and his friend DJ to an amusement park this weekend so Sam and I will plug away in the hospital. Maybe Saturday she'll come home??? Her new scars are pretty big....She hasn't seen the one on her back yet, it's a good 4 inches long......Ok I'm going to finish my fruit loops and go to bed. Love, Ellen and Alec....Sad without Sammi

Saturday, August 26, 2006 12:36 AM CDT

Sam did well getting her new valve yesterday but her pressures are still low. The NP said that last night her and Dr Gilmer-Hill talked about Sam and they'll stop by this afternoon to decide what to do. she's feeling ok, still headachy but getting up and walking around. (Angie, I guess lumbar shunts are named after colors...yellow, green and brown). I'll let you know more later. Love, Sammi and Smellen (new nickname at work).

Friday, August 25, 2006 8:59 AM CDT

They're going to put in a new valve today, back to Brown. Her pressures are low when she's up and walking around and that's when she gets her headaches. So please pray that she'll do well and feel better. We're also going to try and wean her off the Topamax....11 pounds is just too much for her.

Thanks to everyone for all the sweet messages in her guestbook......I'll update later when she is done... Love, Ellen

Thursday, August 24, 2006 9:57 AM CDT

Sam's surgery went well, her pressures are good so far but she hasn't been up walking around much yet so today we'll get her up and moving and see how they do. She's down to 73 lbs....She was up to 84.5 in June. I think it's from the Topamax. We'll have to talk to neurology while we are here.....I'll update later when she gets up....Love, Ellen

Tuesday, August 22, 2006-Life as NPO writes it....

I'm NPO....Throw me a peanut!!

Anyway, It's after 12:00 as I'm updating right now so no more food for me....I can drink till 9:30am, because tommorrows surgery is going to be waaaaaay in the afternoon and VERY possibly in the evening(not good with DI) because Dr. Soods schedule is FULL! Great, huh?

Sooooo, We have to call them if they don't call us by 11am! Not good....So stay up late equals not hungry because you're sleeping. That's a good scenario for people with Growth Hormone Induced Pig Syndrome!

Just send those peanuts via mail, Sammi Jean

Monday, August 21, 2006 10:45 PM CDT

Well, on Wed they're going to try another ICP monitor. It probably won't show anything, but Sam is feeling worse. I shouldn't say that...maybe it will show something. It's just really frustrating. She's saying that her head hurts everytime she stands up. I had to work 16 hours today and 12 tomorrow, then I'm off til Saturday so hopefully she'll be home by then....Ok I'll have her update tomorrow if she feels ok.....Love, Ellen

Sunday, August 20, 2006 3:35 PM CDT

Hi, it's Sammi. We called Dr. Sood yesterday and we are going to see him tommorrow....actually we might just see a nurse too but pray that they decide to do somthing and get these headaches and nausea out of the way! I am still having Shunt site pain too and dizziness, so we really need to get this under control before school....

Love, Sammi Jean

P.S. pray for Jake Owen and Anna Jane. Their Doctors found new tumors this week.

caringbridge.org/la/jakeowen
caringbridge.org/ok/annajane

Saturday, August 19, 2006-It's 1:30 and They are still sleeping!

Hi it's Sammi, I'm still feeling the "Same as the first, a little bit worse" kind of thing but you can add dizziness and neck pain today. Mom and Alec are still sleeping....mom had to work Midnight Overtime and Alec I guess was just watching TV until 6am or so I was told. Sheesh, 6am!

We're thinking about calling the Neuro today and telling them I'm feeling, if anything, worse.

Love, Sammi

Tuesday, August 15, 2006 7:56 PM CDT

Sam feeling really bad so we're headed to Childrens......I'll update as soon as I can....Love, Ellen P.S. She's down to 76 lbs....not good..

****Last night, they admitted Sam and said they were going to put in another ICP monitor. This morning they sent us home. They didn't feel she was symptomatic enough to warrant surgery. She was disappointed which sounds weird until you think like Sam thinks. She thinks it's her shunt. She says it feels like low pressure. Like it did earlier this year when we started all this crud. She is getting ready to start 8th grade. She wants to participate in a dance thing Wyandotte is doing. She can't do either if she's feeling bad. So in her mind, do the ICP , fix the problem and get her back to school. I can understand both sides. I would imagine if she started puking or screaming in pain it might be a different story. So we sit here and wait. I had to call in sick to work. I work 12 hour shifts..I only have 4 hours of sick time. But thank God for our rifle team. They're all going up north for training this weekend, so I have 16 hours of overtime which will more than make up for the 8 hours I won't get paid for today. So it all works out. Or as my sister so gently said, "Maybe you were going to get killed on the way in to work today so this is why they admitted her". I'll stick with the over cautious doctor theory.

Monday, August 14, 2006-Short and Sleep.

OK, this will be extremly short as I only got about 6 hours of sleep last night and I just woke up from a 2-and-a-half-hour nap!

I had to get up early because I had a Doctors appointment with Dr.Sood. He said everything was good...except if those hives get worse they can put a special kind of shunt with antibiotic ointment(squish, squish I thought...)in me and that would clear it up. But it's not bad enough for the Doctors to want to perform surgery yet. And if I get another one I have to go down and show the Nurse Practitioners....but everyone who's had a disease or knows someone with one knows....it'll disapear in the waiting room! He also said since there is a tube in my back....it's going to hurt and he can't do much about it because he can't put it in my head and everyone who was with this journal when they took it out knows that was a BIG no-no!!

Love, Sammi Jean

Wednesday, August 9, 2006-Lortab needed for sore butts and heads!

~August 10**Today is also my Half-Birthday! And I'm not in the hospital....yay me!**~

This illness thing is like a see-saw! You are afraid of heights, so you want to get down so you yell for your partner to get off and what now?....you end up with a sore butt instead....my point, it's one or the other!

The tiredness isn't as bad, except when I'm on the Benedryl for the hives and Lortab for the Headaches. That's just drowsiness. The headaches are worse but nowhere near where they were in Feb-June so here I am writing instead of mom! Though I think everyone within a 10-foot radius will agree I've been a bit grumpy and quick to snap at you if you are being the least bit annoying because of the fatigue and headaches too! Also today I've been having a ton of backpain, especially

I am planning on going to the lock-in at the library on Friday, that will be sooooo fun!! Hopfully some of my classmates will be there and I can see them.... I've only ran into a couple over the summer and seeing as I missed the last two quarters of school I have a lot of catching up to do! I missed them a lot and only two could visit for my Birthday party.

I have a doctors appointment with my regular doctor about these hives....like I'm allergic to my shunt, because they are only where my shunt surgery scars are and it's itchy even when there are no hives.

Later,
Love, Sammi Jean

Monday, August 7, 2006-Hoping and explaining.

While we were at the hotel,Despite all the hoping and praying being done, Princess Mia passed away in the arms of her mom. Please pray for her family and friends.

I really hope they find a cure for these diseases soon(or at the very least more and better treatments)! When you read all of the CB web pages you read about all of these kids wanting to play outside, or going on vacation, or dreaming for the future. All we want is to be normal, but we can't after all we've been tthrough.

That's why I picked this song. It is all about how sometimes YOU need to just live YOUR life, and you need to live as much as possible while you have life. When you watch the video you see people fustrated but then, you see other people comforting them. You also see a girl holding her dads hand, and a bunch of kids playing with eachother.

The simple joys life can give you...If you look for them.

Love, Sammi Jean

***Note from Mom...you cannot tell from above but Sam is not feeling well...She keeps breaking out in hives over her incision sites...almost like she's allergic to the shunt. They said to give her benadryl...Her headaches are back. I am taking her to the regular doctor on Thursday and if she's not better by then, downtown...

Friday, August 4, 2006--Knock-and-Pray-and-Post!

Hi guys, Since I didn't knock on wood last time...now I've been tired all day for the last two days and I just now started feeling a little nausous. So pray for that to be just a left-over from the cold I got last week.

Also, a girl named Mia who has Myelodysplastic Syndrome(what my friend and classmate Daniel had)is in a coma from a bad case of Phuemonia, and because of the MS, her Immune System is depressed. Her, and her family are under the worst strain and could use all of your prayers.

OK, we have been really busy because Caitlin is moving to Chicago in a week....so she is home packing and getting ready to go. And when Caitlin moves out, Alec and I will get her room so we have to prepare to lug all our furniture upstairs next week too! Soooo, what I'm trying to get get down to is....No camp pictures....yet. We WILL get them!!

Also pray for Nana, who is feeling sick but the doctors aren't sure what's wrong. She has helped a lot by coming down to Childrens when Mom and Dad had to work....THANK-YOU NANA!!

Love, Sammi Jean

P.S. We are going to a hotel tommoroww so I will update more monday about the new song and the new lyrics under it!!

Monday, July 31, 2006 11:04 AM CDT

Hey Guys!! The headaches are pretty much gone, and the nausea has subsided too....so I'm good for right now!

Camp, camp, camp.....YEAYUH!! I had on of my friends, Lexie(sory if I spelled that wrong!), from last year in my cabin and I thought last year would have been the best year....I think all 14 of us would agree this year ROCKED!!

We did the high ropes course(which I requested as soon as I met my counsler, Karen)on Thursday and I was soooooo waiting for that since I couldn't do it at Camp Sunshine(no one at this camp knows what a shunt is(:0))and I think I did pretty good....also our Cabin asked if we could go on the conoe trip on the Ausable River(my shoulder is sunburned and so is the PART IN MY HEAD!)that was sooo Kueool! We didn't do the Light House Climb though.

And this is my Favorite! I didn't really want to have a part(I wanted to sleep and I didn't want to give away everyone with my small frame!!)in it but 3 girls from our cabin, *Sandy, *Hellen, and *Yvonne(* names have been changed in case T.C., the Camp Detective reads this!)went and "underweared" Wakeya 10!! It was awesome! And my DDAVP "cunningly" decided to Breakthrough so the counsler had to get up and go to the bathroom with me about the time they went out so the counsler could honestly say *Sandy,*Hellen,and *Yvonne were sleeping around that time! And that gave us the perfect alibi!

Every Meal Time after everyone has eaten we sing camp songs, and this one seemed to fit perfectly with the way so many Brave Fighters have had to leave us so soon for heaven...

Linger.

Mmm-mm I wanna linger
Mmm-mm A little longer
Mmm-mm A little longer here with you.
Mmm-mm It's such a perfect night
Mmm-mm It doesn't seem quite right
Mmm-mm That it should be my last with you.

Mmm-mm And come Septmber
Mmm-mm We will remember
Mmm-mm Our days of friend-ship tried and true.
Mmm-mm and as the years go by
Mmm-mm I think of you and sigh
Mmm-mm This is good-night and not good -bye!

Whenever we sang that song it really reached out to me.

Well, next update I will have pics and more stories!!

Love, Sammi Jean

Wednesday, July 26, 2006 8:06 PM CDT

No news is good news....Sam must be doing well...Hopefully I'll have some mail waiting for me when I get home...We went into Chicago today, quite a challenge with a stroller, but it made me very glad my children are older....LOL... We had fun, we went to the aquarium and to Navy Pier....Ok talk to you all soon. Ellen and Alec

Thursday, July 20, 2006 11:39 PM EDT

Sam leaves for camp tomorrow, and she'll be home next Sunday. We saw the neurologist today and she's switching Sam from the Topomax to Neurontin. She has lost 6 lbs, has lots of nausea and so she decided to switch her. We have to do it slowly so we're going to start when she gets back from camp. Her headaches are a lot better but the side affects were just too much. She's so excited about camp. Alec and I are going to Indiana on Monday for 4 days. It'll be fun. Caitlin is getting ready for Chicago and Nikolaas made it thru his birthday in one piece. I'll write later and let u know how she's doing.

Tuesday, July 18, 2006 10:37 PM EDT

Sam has been at Ruthies since Sunday. She has only had one headache in the last 3 days. So I am very happy about that. She has not been in the hospital in a month. She is doing great. She is coming home tomorrow, then leaving on Friday for camp. She will be gone for a week, all by herself. But I will not see her for about 10 days. Alec and I are going to Indiana on Monday to visit my sister and my nephew. Caitlin and Rachel are getting ready to leave for Chicago. Nikolaas turns 21 in about 90 mins. Unbelieveable. I have a 21 year old child. I am in shock I think. He is going to celebrate by going to Ozzfest. I dont even want to know what kind of shape he will be in the by the end of tomorrow....so I wished him a happy birthday tonight and told him to call me on Thursday. Still praying for Lizzie, Jake, Michael, Luke, Lucas and all the other little kids out there fighting brain tumors....It is unbearable.

Saturday, July 15, 2006 7:25 PM CDT

Sam is doing well, endocrinologically *is that a word?*. Growth is good (gh increased to 1.8 mgs) and her puberty is marching right along. She's grown 2 cm in 4 months, which is pretty good for missing as many shots as she did in the last 4 months. I'm really hoping for good growth this time, as long as she feels well. I got her an appt with neurology for Thursday and hopefully we can find out if her nausea is from the Topamax or the Lor Tab. Sammi and Alec got an awesome package from Jeff and Susie Ott....I wasn't home when they opened it, but I do have little pieces of styrofoam all over my living room so they must have like what was in there... And she got a cool sticker maker from Janet. Thank you so much. And thanks to Jennifer, her new summer fairy from Audreys Umbrella and to Candy, who always sends such nice cards and guestbook messages. And to her new friend Linda K, who signs so often, thanks....If I forgot anyone, I'm sorry. I've worked 30.5 hours since yesterday at 7am and I'm tired. I'm going to eat some dinner and go to bed....Love to all... Please pray for Lizzie who is getting her scans at St Jude this weekend..... caringbridge.org/va/lizzie

Thursday, July 13, 2006 9:21 PM EDT

Sam is still feeling pretty cruddy. She is going to camp in 9 days so she wants to feel better but since we have no idea why her head hurts and why she's nauseous all the time, I don't know if she's going to feel better. Tomorrow she has an appt with endo, so we can ask them for their advice, but I'm sure they won't be able to do anything. I might take her to neurosurgery and just let Nancy take a look at her. Who knows??

Wednesday, July 12, 2006 10:03 AM CDT

Mom's not working today, so we're going to Big Boy's to eat(yeahyuh!)and then to Wyandotte's Art Fair. Well, we're ready...gotta go!!

Love, Sammi Jean

Monday, July 10, 2006 !:24 PMEST

I'm in trouble!! I finished the book I bought yesterday!! Why?! 447 pages to read and I finished it in 7 hours....sheesh....I consider it a curse! And I can't find my iPod(it's in one of the Maine bags at moms), I've read ALL of the books at my house, mom and dad are at work right now so I can't go to the Library, and there's never anything on tv on a monday afternoon(and I watch too much in the hospital anyway!).....soooo I'm updating.

I've already read 15 books in about 2 weeks for the Wyandotte Bacon Memorial Library reading lock-in. The teen prizes are drawn for at the lock in. If you were reading my journal last year you knew I was estatic that I was able to go because the first year I was busy having Brain Surgery! Oh gosh! I just looked in Chewy's fish tank and he's dead!! Seriously! I was typing and I noticed he wasn't swimming at the top like he usually does! He was one of the golfish that I got while I was in the hospital getting the Rathkes Cyst out! Coincidence.....wow....poor Chewy, he was a good fish to watch when I had to be flat on my back after a shunt surgery. He and his Tank mate Nibbles, were bought by dad and brought to the hospital after about 2 weeks and I had Nibbles for about a year and Now Chewy has died after about 2.....

Well this has turned out to be an exciting update! Now I'll go see if somthing is on TV yet...

P.S. Leave me some HUGS!! And pray for the headaches to go away...hay been getting worse this week.

Love, Sammi Jean

Saturday, July 8, 2006 7:08 PM CDT

Hey Guys! I'm feeling much better(the headaches....I wish...)the cold at least but the Loritab is helping a lot.

Ok, Camp Sunshine.....IT WAS AWESOME!!! I made friends(if you've actually met me you know that's a lot), read a poem up on stage(which everyone wanted a copy of!), it was just soooo KUEOOOOOL!! You just have to go there to know what it's like.... I can't really explain what it feel's like....

One boy had Medullablastoma, and is going to die in two monthes yet he played pool and went on the low ropes course(he had a shunt)and acted completly normal. Rebekah's favorite game was hiding behind you and waiting for you to turn around and then she would laugh and do it again and you couldn't help having fun doing it with her. Nik had a competely new kind of tumor, a Bowennoma(they named it after him...Kueool!),he was on chemo at the camp, and it was his idea to sing "baby got back"(wow)at Parents Kareoke Nite! All of them, from the teens, all of us would just joke all day, and get to know eachother. We all remember eachother by the little yet awesome things we do as survivors, even if some of us won't be there next year. It's hard to think of that but we were here this year....and it was awesome!!

Love, Sammi

Tuesday, July 4, 2006 3:33 PM EDT

Sam is still feeling pretty cruddy. Dr Moltz, her endo, said to double her cortef and give her plenty of salt and sugar....she likes to eat salt by itself, i think that's part of her adrenal insufficiency and she can get sugar in pop or capri suns... She is nauseated, dizzy and stuffy. We did manage to go to Greenfield Village today. They have a really cool display in the museum that's all about liberty and justice. Last time we went thru there, we got sidetracked learning about womens sufferage, but this time, we made it thru the whole thing and learned about George Washington and all about the Declaration of Independence...So I'm glad we got to see that today, on America's birthday. It's amazing when you really think about what our forefathers went thru to get America to the greatness it enjoys today. Women, African-Americans, it's amazing, the more you learn about it, how much people have suffered, how far we've come and how far we have to go. Ok, I'm gonna jump off my soapbox (hopefully, I won't hurt myself). Have a great day!!! Love, Ellen and Sammi

Monday, July 3, 2006 10:43 AM CDT

This will be really short as I have a cold, and am completely miserable but we are back and when I feel better more details and pics will be up....happy Fireworks!

Love, Sammi

***Sam has been really nauseated all day, dizzy when she gets up. Hopefully it's just some extra cortef she needs, since she has a cold. She just took that so hopefully she'll start feeling better soon....Ok, if anything big happens, I'll update...

Thursday, June 29, 2006 1:04 PM CDT

Sam is getting ready to go to the challenge course (they won't let her do the high one because of her shunt so she was really disappointed, and she can't do the rock climbing wall) but she's doing really well. I think she got dehydrated yesterday, so they drew some blood to make sure her electrolytes were ok. Alec is getting ready to go swimming and I'm getting ready to go to our group "cry" session, as one child calls it. But it's been good... Sam did great at the talent show. They photocopies her poem so everyone could get a copy, she did really well, no stuttering and she read it slow enough that everyone could understand. She's an awesome kid!!!!

Tuesday, June 27, 2006 2:06 PM CDT

Well, they should call this place Camp Heaven!!!! It's been awesome. Of course, the Robertson shyness has come out full force. We're not real outgoing and not knowing anyone here has been a challenge but I think people realize our handicap and have been introducing themselves. We will definately be coming back, if they will have us. I'll let Sam talk about it more, but she is performing one of her poems tonight in the talent show, I anticipate lots of tears when she's done. Ok, we'll update later!!! Love, Ellen

Friday, June 23, 2006 6:00 PM CDT

We leave for Maine 7 a.m tommorrow!!(my smile at the a.m. part is totally fake...)We are going through Canada into New York. Oh cool...I just turned on America's Funniest Home Video's....Best show ever. Anyway, we should get to Albany, New York by 4:00 p.m. and then enjoy an afternoon of swimming and watching TV....not too much though. Uh-oh someones about to get wacked....yup, pinata's will do that. Okay, then the next day we'll leave for Maine and get there later in the afternoon!! It'll be sooooooooooo KEUOOL!! (:0) Ewwwww... some old guy just lost his teeth....gag....now some guys in clear wrap are bumping into eachother-ohhh yeah, down he goes.

See ya when I get back!10 Days!

hmmm....32 konks in 30 secs.

Love, Sammi Jean

Tuesday, June 20, 2006 5:42 PM CDT

This will be short because the New Topamax they put me on in the hospital to help with the headaches has made me nautious/holding my stomach in pain... one of the two all weekend up to today. I suppose I have top get used to it. The headaches are better in status but are still constant unless I take The Vikoden/Tylenol they also put me on....zzzzzzzzz's all after that! But now the nasuea so...

Only 4 more days till we leave for Maine...Camp Sunshine!! It'll be sooo awesome!! I got a new Summer wardrobe(thanks mom!)today, and got a haircut...kinda like a 1930's bob...I'll get pics later!

Also a awesome boy known to most of us as Amazing Jacob, has once again defied the doctors and died a peaceful passing surrounded by his family, despite his doctors saying he would be gasping for air until he died! But he had to be amazing one last time and show us all what god can and did do that day. Me and mom found out after surgery, I wanted to go to the library to see how Jacob was doing....now his family needs the prayers, especially his older brother and his triplet brothers.
fl/jacob

Love, Sammi Jean

Friday, June 16, 2006 8:56 PM CDT

Sammi is home.....She took a long nap I guess when she got to Chris' house. I had to work today so I won't get to spend any quality time with her until Sunday night....YUCK> I took Alec to a movie and then out to eat, now he wants to spend the night here....So it's boy/mommy night...My favorite kind. Sam's EEG was normal and they're going to try her on a migraine medication...Let's just pray that it works...Talk to you all soon Ellen

Wednesday, June 14, 2006 12:18 AM CDT

Sam is doing ok, getting another EEG today to rule out seizures and they'll probably start her on new headaches meds and she'll prob be coming home today or tomorrow....We're getting ready to go to Camp Sunshine next weekend. Alec, Sam and I are driving to Maine by ourselves and driving back by ourselves, I'm kind nervous but excited. It's a camp for kids with all kinds of ailments but that week is carved out for kids with brain tumors. It should be a lot of fun. I might stop at Niagra Falls on the way home, I haven't been there in such a long time and the kids have never been there. Ok, I'll update more as more becomes available...

Monday, June 12, 2006 5:32 PM CDT

Sam came thru her surgery with flying colors, pressures seem low but we say that every time...what do we know??

She is very upset, she came down to the library to check on Jacob to find that he passed away...She and I were both crying....Please sign their guestbook....caringbridge.org/fl/jacob.....

Saturday, June 10, 2006 5:15 PM CDT

Lord Help me....DJ and Alec's new friend Robert? In one Night? And one house? I know it could be worse but, headache won't get better with them playing video games and lightsaber fights all night! And I still havn't forgotten about that "I think death is Hilarious!" that DJ pulled this winter....and I never will forgive him for that! Sooo, in case you haven't heard....

Surgery.ICP-InterCranial Pressure Monitor.Monday.Dr.Steven Ham. No time yet but I will post that later. Now drop and give me 20!!

Anyway...My headaches have been really, really bad. I was all ready to go to the ER last night but I took my Periactin, CoQ10, and a Loritab and it finally went away. Needless to say, because of all the pills(especially that Loritab!)and thursday night's no-sleep capade, I was out by 10:30 pm and awake at 10:50 am.

Pray for Jacob(fl/jacob), Jake(la/jakeowen), and Zoe's Family(visit/zoebachman).

Love, Sammi

****Thanks to Candy and Janet and the Ott's and Mary and Audreys Umbrella for all the wonderful letters and cards and packages...it really really brightens her day....Thanks again !!!!!!

Friday, June 9, 2006 7:23 AM CDT

Sammi has had a really bad headache all night, she couldn't sleep and finally took 2 pain pills..I have to take her downtown today to get the stitches out....They've been in for 2 weeks, I have a feeling it's not going to be easy. But they had to leave them in longer because it was new skin growing together. Please pray for her, Jacob, Jake Owen and Bradley's family....God will know who you're talking about...

****Well good news and bad news....Good news, Sam's suture removal was easy, it was one big stitch that looked like five, so snip and pull and done....Bad news, another ICP monitor on Monday. Dr Ham said that having a shunt is like driving to Chicago. You know how to get there but there's always the possibility of accidents, traffic jams, construction, you just never know. So getting there sometimes you have to go a different way. They took some blood which should be done by Monday so they can tell if she has an infection or not. I just got home from picking up one of her many prescriptions and she says her neck is hurting....OY.... Ok I'm gonna go spend some time with my girl...Alec is having 2 friends spend the night at his dads house....He's so happy right now, 2 whole friends at his house. I hope they get along!!! Love, Ellen

Thursday, June 1, 2006 1:00 PM CDT

Tues, 06/06/06 First of all, happy birthday to awesome Anna Izzo, Rachels little sister who turns, you guessed it, 6 today.....She's the cutest little thing....Sam is excited, I'm taking her and Rachel to a movie after school and Rachels coming to visit!!!! Sam is still not feeling good, headaches, backaches....I have to take her downtown on Friday for suture removal...I'm feeling pretty hopeless at this point...I think she is too...

BIG NEWS!! OK, so the news that could be coming this winter could be bigger, but anyway! I am writing a story, and sending it in to MAYBE be a part of the coming book, Chicken Soup for the Kids Soul 2!! But I do need a little help with what poem I'm gonna send in! So you can look on my site or go to Journal History and leave your favorite title in the guestbook! Let the polls begin.....So my story Idea is non other than My Best Friend RACHEL ELIZABETH IZZO!! Known on this site as RaRa, she is the one friend who has stuck by me this WHOLE journey! Through the diagnosis, home schooling, surgeries, hospilizations, the whole 9 yards....or 3 years! She is the best friend you could ever have, and I owe her soooooo much!

I LOVE YOU RARA!!! THANK YOU SOOOO MUCH!!!!

Now I'm trying to think of the story about me and RaRa to send in.....hmmmmmm.....it'll come to me!

And in the Sam front....my headaches are getting a little worse in intensity, but the Lortab is helping but it's a good thing I'm being homeschooled 'cause that Lortab(AKA Vikodin!)really makes me ZZZZZZZZZZZ/yeah whatever, alec, burn the house down! The COQ10 also seems to help a little but headaches are still there! So, I'm probably gonna miss a bunch of cool 7th grade stuff they do at the end of the year....but next Wednesday I'm going to Wisconsin to see my Cousin, Callie's, Graduation, and Camp Sunshine(can't wait for that!!)is in a couple weeks!

So get the votes in, and pray that my story is good enough!!
Also, you get 200$ if your story's published! Let me hear you say Sewing Machine and a new Air Conditioner for moms house!!

Love, Sammi

Monday, May 29, 2006 10:50 PM EST

Hi guys....it's kinda late so just wanted to say I'm back(!), and thanks for all the support from everyone!

But a very special woman I knew passed away a few days ago while I was in the hospital....My good friend Linda. She was diagnosed with colon cancer four years ago and even then the doctors said she would only live 16 months, but Linda would not hear of another person telling her how long she would have on Earth! She chose to fight her Cancer and four years later(take that Cancer!)she passed away peacefully....pray for her family and friends as this was a great loss to all that knew her.....she was a valiant fighter, as are all the CB kids and people with diseases. Remember them, and remember their spirit on this Memorial Day, and remember what they all teach us....You shouldn't listen to statistics on life, but the quality, and willingness to live life!

:0) You go Linda!! :0)
mi/linda

Love, Sammi

Saturday, May 27, 2006 9:57 PM CDT

Sam is doing ok, so far the cultures from the burr hole are negative, which is good, it means the infection didn't get into her bone, which would entail 6 weeks of anti-biotics instead of 2. But the skin showed gram positive bacteria and yeast, so they're going to have infectious disease come and take a look at her... They're probably going to put in a pic line and send her home...I had to work today, so Alec and I went to see X-Men 3. It was really good. We had a lot of fun together, like usual.

P.S. Angie, guess who moved into 582???? The weird guy...He and Chris have already had words...I will try and call you tomorrow and tell you the horrid details....Glad you guys went home.....Tell Sammy we said hi...

Friday, May 26, 2006 2:26 PM CDT

Sam developed an infection in her incision on her head so they had to go in and debride it today. She was in a lot of pain but it looks like they finally got it under control. We might be in here a few more weeks, for antibiotics or they might put in a pic line and let us go home on antibiotics...she doesn't know about this part yet so please don't say anything. Just pray. She's upset about Linda dying and not being able to go to the funeral. If Linda's family is reading this, please know we are thinking of you and sorry that we couldn't make it.

Friday, May 26, 2006 5:43 AM CDT

Sam is still in the hospital, they tried a "tens unit" on her yesterday, she said it helped a little bit. I am going to stay with her today and then tomorrow I have to work, trade day with someone so there is no way I can get out of it. And I traded my overtime on Sunday. Sammis friend Linda died the other day, she really wants to come home today so we can go to the funeral. But I do not know if that is going to happen. Please stop by her guestbook and leave a message for her family. caringbridge.org mi linda....

Thursday, May 25, 2006 7:33 AM CDT

Well apparently she's not coming home, Dr Ham the Chief Neurosurgeon says she's not going home til they figure out where the headaches are coming from..I like him, he doesn't mess around.....I have to work all day today and Saturday and maybe Sunday. That sux...

Wednesday, May 24, 2006 7:40 PM CDT

I think Sam is coming home tomorrow. They didn't figure anything out. She's still having headaches. She's not happy.

Tuesday, May 23, 2006 12:40 AM CDT

Sam is doing ok,still little fever and the pain management team is supposed to come in and talk to us. I am picking up Alec in about 90 minutes, then we'll go downtown. He has to get a bone age x-ray, he's going to see the endocrinologist on Friday to make sure there's nothing metabolic causing his non growth. But I'm sure it's his non eating that is causing the non growth. It only makes sense but of course you have to go thru all these steps to get to where you know you need to go. Ok I gotta go do dishes, hopefully we'll be home tomorrow...Unfortunately, I don't think we're going to get any answers....

****UPDATE Ok now Sam does have an infection but they don't know where it is. So I have no idea if they have to remove her shunt or not.....She's feeling much better, actually gets out of bed without threats or pleading....she's been smiling all day and people have been commenting on how much happier she seems today....I'm happy too!!!!

Monday, May 22, 2006 7:22 PM CDT

Ok, no bladder infection. She's still having fever so there's something going on somewhere....she was in a really really really bad mood....did i mention it was bad???? They came in last night and said her urine looked clear.....So we still have no idea, which is why I think she was in a bad mood. Her MRI is clear and her Chiari Malformation is gone, now that she has a higher pressure shunt in. I came home with Alec tonight, he needs his mommy....

Sunday, May 21, 2006 1:30 PM CDT

Well, Sam has a pretty bad urinary tract infection, which would probably explain the high fevers, but her headaches are still there....They did an MRI this morning, so far her cultures are negative, they did a spinal tap yesterday. Yesterday was a really bad day....The worst I've seen since they tried to take her shunt out....Today she's still feverish and headachy but I'll take that over yesterday anyday.

Saturday, May 20, 2006 10:02 AM CDT

Well, They're going to keep Sam a little longer...They're going to do an MRI and get the pain management team in there to see if they can help her. Alec and I are going to hang out a little I think, we might go to Greenfield Village. Usually we all go and they fight about what they're going to look at. Today he can go wherever he wants...I have to work tomorrow so blah....But I'm off Monday and Tues....Sam is missing her recital today, I'm sure she's not happy about this but her headaches are so bad she even said "I'm not leaving til I feel better".

Please continue to pray for Samantha Mills, Nicole and Linda. And for the Ott family, who's daughter Stephanie died 2 years ago yesterday after a brave battle with aplastic anemia. They have turned their grief into compassion for other people. But I imagine they were like that before....

****Update 1:43 pm....Sam has a pretty high fever and is now puking....Good Lord!!!!! I wonder what this could be. I'll update later or have Caitlin do it...

Friday, May 19, 2006 7:07 PM CDT

Well, Alec and I are home. Sam is at the hospital with Chris. She is still having really bad headaches but there's nothing wrong with her shunt. They sent a neurologist down to talk to us and they may try her on some new meds and fudge around with her old meds and see if that works. I imagine she'll come home tomorrow. Tomorrow is her recital but I don't know if she's going to feel good enough to go. We'll have to see.

Please pray for our friend Samantha Mills who is still there, she's being desensitized for some antibiotic allergies, they have to do that in the ICU. That girl has been thru some crap but she always manages to have a smile for everyone.

Please pray for Nicole and Shari who are just going thru some really really tough times right now...

Please pray for Linda who is hanging in tough but ready to go..Sam mailed her one of her most precious possessions and it's hanging in Lindas room...An embroidery she made in sixth grade, talks about bravery....Sammi and Linda are both great examples of this....

Tuesday, May 16, 2006 9:02 PM CDT

Ok, first things first....Samantha MIlls is in the hospital getting a new drainage spot for her shunt.... visit/samanthamills... and Linda is holding her own, brave and strong.... mi/linda

Sam is getting another ICP monitor tomorrow. I have no idea whats going on...they are grasping at straws...I'll update tomorrow and let everyone know how it turns out....More hair gone and another scar. yuck...

*****Tues....well they couldn't fit Miss Sammi Jean in today...so they called at 1:30 and all I heard was Sam hurry to the kitchen and grab all kinds of food. On the flip side, we have to be there at 6am tomorrow, but she's happy she won't have to wait all day without eating and drinking, which for someone with Diabetes Insipidus is like being a fish without water...Not compatible with life. Headaches have been off and on today...she's asking for pain relievers about once every 2 hours, of course I can't give them to her that often. Ok, prayer transfer to tomorrow...(Angie, so that's why you haven't heard from us, I will keep trying to call you....I read that she has an infection now, it's weird, when Sam had her first infection, all she had was vague abdominal pain.)
******

This is Caitlin, updating for the crew! Sam is doing just fine. My mom wants you guys to all know the room number and phone number. And know that you can call or stop by anything! Room 580. And their phone number is 313-745-5953.

Saturday, May 13, 2006 9:45 PM CDT

Well, they started Sam on an anti-depressant, maybe this is kind of common after the 9 surgeries she's had in the last 3 months.....We just started it today, Nancy said to give it 3-4 days and see how she does. Her headache was bad tonight, but she did manage to go to a wedding with my sister so she had fun. I'm not sure this is what the problem is, but we'll give it a try.

Please pray for our friend Linda who is now being treated by hospice...Please sign her guestbook www.caringbridge.org/mi/linda......

***Sunday - Headaches are bad...she says the new medication they give her is making her really really tired...it's only been two days so we'll try it for a few more. Also pray for our friend Samantha Mills, who is having a lot of problems with her shunt.... www.caringbridge.org/visit/samanthamills...

Thursday, May 11, 2006 8:14 PM CDT

Well it sounds the EEG thing is not a big deal. Anyone who has had brain surgery probably has the same thing...artifacts from the surgery. But we have an appt with a neurologist next Thursday. Sams headaches seem even worse today, the NS nurse said it could be from the storm fronts going thru...I am not so sure I am buying that so she said if she still feels crappy tomorrow, to bring her down. I had to work today so she was with Chris..she sounded like she was crying when I talked to her, it was hurting so bad. I just do not know anymore...

Tuesday, May 9, 2006 9:36 PM CDT

Sam's CT was fine but we found out that the EEG she had in February was abnormal. They never called. I tried to get the results a couple of times, they always said they couldn't find them in the system. I'm pissed they never called. So I have to take her to see the neurologist next Thursday. She still having headaches...This just sux....

Tuesday, May 9, 2006 11:33 AM EDT

Sam's headache and backache are really bad today so I have to take her downtown for a CT scan. She's still sleeping and it's 11:30 here..I'm sure they'll find nothing wrong and we'll be back where we started....Her in bed sleeping and waking up and crying and me at work, frustrated and pissed. (excuse my french).

Friday, May 5, 2006 10:10 PM CDT

We had a good time in Chicago...Sam did ok, lots of back pain but she had a lot of fun. It was a really good group of kids and I'm planning on having my 8 girls over to spend the night and look at pictures and stuff in about a month.

It looks like Sam's headaches may be caused by allergies, she's been taking allergy meds for last 2 days and only minor headaches...Would that be great, if that's all it is???

Wednesday, May 3, 2006 6:47 AM EDT

Sam's headaches have returned and she's been having shortness of breath when she stands up, so we have to go downtown today and get an echocardiogram. Tomorrow is Chicago. She needs to go to school today, they're having a last minute meeting and she needs to go. And Alec has a conference at his new school at 2:30. Oh and I have a meeting at work in 10 minutes but there's no way I can go. Sooooo, somehow I have to do all this today. Hmmmmm.....She didn't go to school yesterday and made it thru 5th hour on Monday. I'll update later, when we get back....

Sunday, April 30, 2006 10:13 PM EDT

Sam seems to be feeling better, still really tired but she's always tired.....We're planning on Chicago on Thursday and we're getting excited......Thanks for all the good thoughts and prayers (and funny pictures in the guest book, Jeff).. XOXOXOXO Love, Sammi and Ellen

Friday, April 28, 2006 9:57 PM EDT

We are home!!!! They put a nerve block in her head and hope that will help with the headaches...but jeez did they shave her head and the incision was bigger to help deal with the bleeding issues she has when they put the monitors in. Her pressures were good so the shunt is not the problem. All I care about is getting her to Chicago next week with her class.

****She wanted to go to bowling today, it is the last day. I tried to wake her up, her head is killing her. So basically we are no further along than we were on Wednesday. I asked if maybe the higher pressure valve would make the chiari worse and Mary, the Nurse Practitioner, told me it would actually make it better, as the pressure is higher and her shunt is working less often. We got her new glasses so that is not it (did not think it was anyway, would not cause nighttime sleeping headaches). Hey maybe her periactin needs to be increased, that has not been increased since she weighed 55 pounds.. Ok going to check it out now....

Thursday, April 27, 2006 1:50 PM CDT

Well Sam is doing pretty well, we're going to get up and walk around in a little bit....We'll find out tomorrow if they're going to have to put in another valve or anything...See below for room number and phone number, if you want to call....Love, Ellen and Sammi

Thursday, April 27, 2006 5:28 AM CDT

Well here we go again, please pray that everything goes ok and that Dr Sood figures out what the heck is going on!!!!! I'll update as soon as I can or have Caitlin do it....Love, Ellen

Tuesday, April 25, 2006 8:44 PM EDT

Well, Thursday Sam is going in for another ICP monitor...And we'll go from there...He said maybe another valve in addition to the one she has in....Her headaches seem to be worse when she's laying down, which kind of goes with low pressure. Her head hurts on the right side and she said her chest is kind of hurting, but the shunt survey they did today, was fine. Ok, we'll update more tomorrow, 24 is on....Love, Ellen and Sammi

Monday, April 24, 2006 10:57 PM EDT

Sam is having problems again...She's been short of breath all day and her back is swollen and she's having headaches....Her class trip to Chicago is in 2 weeks, and I'm chaperoning...She better be able to go or there's going to be hell to pay...

Sunday, April 23, 2006 8:05 PM CDT

OK, first of all I DID NOT shut the door on abby!! She probably did that crazy flabby roll thing and whammed into the door and shut it on herself....she has done that before! Even now she is groping for nonexisting things on the couch and rolling her flabbiness over Alec!!

Sigh....Easter Break is over.....good times, good times....though....TYPING CLASS IS OVER!!! YEEEEEEHAW! No wait, YEAAHYUH! Not that I do not like the teacher....typing is just kinda kinda boring.....noooooo offense whatsoever!

Love, Sammi

Saturday, April 22, 2006 8:49 PM CDT

Sam is at her dads this weekend, I have been working but they come back home tomorrow. She is feeling really good. I asked her today if she thought this valve was going to do the job and she said yes. So I am starting to get hopeful that we are past the last couple of months and on our way to a long period of health for her.

Thank you Jeff and Suzie for mentioning Sam in your website...www.caringbridge.org wv stephanieott.... You are an inspiration to us too... To reach out and help...and to pray. Thank you.

Flabby Abbey update...last night I get home from work around 8pm and head into bed at 9:30. I stop in the restroom and what do I hear but 3 pitiful meows. Now keep in mind Abbey is way too Flabby to waste energy meowing. She hardley ever does. So my first thought is...those kids locked her in the bedroom when they left this morning. My second thought is much more disturbing....She better not have relieved herself in my room. I open the door and she staggers out, all sleepy eyes and dehydrated (well not really). She was mad all night and did not visit me again until this morning when she insisted I feed her again. She is a strange cat, which means she fits perfectly into this family. She has another weird trait...One of her eyes is green and the other is brown....WEIRD!!!

Wednesday, April 19, 2006 10:39 AM CDT

PARTY IN THE HOUSE!! I know I planned a big B-day party where everyone that read this message was invited but I just decided I AM gonna have a PART-AY for my **13**th birthday yesterday.....so hopefully next year I won't be in the hospital for 2 months after my B-day! I've already got the OK from RaRa and her two younger sisters Katie(8)and Anna(6 this May)and I plan to invite My school Best Friend Sarah Haggerty!! yay me

So plans, plans, plans....First we're gonna ask eachother,"what we gonna do?" then I'm gonna say,"I dunno...what do you guys wanna do?" Than I'm gonna say,"TALENT SHOW!!!"! The three talents will beeeeeeee......

SINGING!(or lip syncing, whatever they want to do)

DANCING!(my favorite!)

COMEDY!(whooooooo)

Second, we are going to EAT!(whoo! I feel GHIPS comin' on already!) Don't know what yet, but there'll be a lot! (:0) then we will probably just listen some music and talk(Black Eyed Peas, what else? Then some High School Musical music!) then whatever they wanna do!(thogh we will probably eat again...or I will!)

Love, Sammi

PAARRRRRTTTTAAAYY IN THE HOUSE!!

****The Izzos are in the house...Rachel, Katie, Anna, Sam and Alec are upstairs putting on a talent show for each other. I took the girls to the park earlier, Sam was more active than I have seen her in months..It was awesome.. She just has so much fun with these girls...They are the best friends she will ever have... Ok have a good night all....

Sunday, April 16, 2006 7:26 PM CDT

HAPPY EASTER...Sam and I went out to eat with Nikolaas...It was fun but he was kind of crabby...He has a new girlfriend...her name is Samantha, imagine that. He seems really happy....Now the kids are at Nana's...Chris starts his new shift tomorrow and I'm on days too....

Sam is feeling better, I think she's getting used to the new valve. She says now that it only hurts when she turns her head. So I have an unexpected 2 days to myself, except for work. I'm kind of bored...Oh well...She's feeling better and that's the important thing.....Love, Ellen

Friday, April 14, 2006 2:56 PM CDT

grrrrr....I'm having more headaches and fatigue, though the fatigue might be from the Tylenol/Codiene. It started last night and lasted all night and now I get them whenever I change position.(I even had dreams I was having a headache!) Just a quick Endo note: She said I am doing some Estrogen stuff on my own and my bone age is 11.(yeah that's not with my biological age but she said the bone is a year older than it was a year ago so it's some what keeping up.)So we will wait to start Estrogen, since I am showing I have at least some! Plus I didn't need blood work! yay, well pray the headaches will go AWAY and not ruin Easter Vacation, which started yesterday!

Thursday, April 13, 2006 7:56 PM CDT

Hey Guys....sorry it took a while. I was feeding Puggle some strawberries....you should try it!! It's soooo kueool! and fun... anyway, here I am! OMIGOD!! THANK YOU FOR THE GIFT BASKET SUZIE AND JEFFERY!!!!! We will post pictures of me piggin' out(it's the Growth Hormone Induced Pig Syndrome!)and havin' a ball with the bubble wrap! AND THANK YOU CANDY FOR THE STATIONARY AND THE NICE LETTER!!! You guys are all aawwwwweeeee-summmm!!

Love, Sammi

Thursday, April 13, 2006 11:45 AM CDT

We're home...she is feeling pretty good, just some back pain but that's normal...she has 6 stitches in her head and none in her back, they usually steri-strip the back....But her valve is green now, my favorite color. He said it's adult size, maybe it has something to do with her growth.....Ok I gotta go run some errands and get her script filled...Thanks for all the messages in the guest book and thanks to Jeff and Suzie for the adorable stuffed animal and balloon....Oh and Simonne was there for a quick tune up so we were happy to see her, but not happy she's in the hospital...She looks good, a bit thin but good....Ok Sam will probably update later. Ellen

Wednesday, April 12, 2006 9:24 AM CDT

Sam had her ICP monitor put in yesterday, and it looks like her pressures have been running low, which means a new valve....But Neurosurgery hasn't been in yet today so I could be totally wrong. But she's still having really bad headaches....Thanks for checking on us....

Monday, April 10, 2006 3:29 PM CDT

Sam is going back under the knife tomorrow...Another ICP monitor to see if her pressures are low or high or whatever. We actually saw Dr Sood this time. He says, "how can it be related to constipation when she's not draining there anymore". Thank God.....So we're not going to accept that answer anymore. He thinks now that her tubing is facing heaven, my wording not his...instead of being horizontal, that maybe it needs a little more help moving...So he's thinking he might have to put in a higher pressure valve. We'll see tomorrow.....We were so happy to hear someone say it's something other constipation. Thank you God....It's a weird thing to thank God for, but that's been our cross to bear. OY

Saturday, April 8, 2006 9:54 PM CDT

Hey Guys!! I'm feeling kinda better but I'm still having REALLY bad headaches.....AND IT'S NOT THE CONSTIPATION!!! >=0( You would think they'd learn from THEIR past mistakes that I have always been right when it comes to this! sheeesh! anyway Dakota could really use some prayers...he has been diagnosed with what my classmate Daniel had and the only hope is a bone marrow transplant but he just had one so that would be a big risk! and even if he got another match it could takke months...and Daniel only lasted about 10 months even with the transplant because his lungs didn't takle the new marrow....THIS SUCKS!! anyway give him some encouraging thoughts and just let him know you're there at caringbridge.org/sc/dakota

Love, Sammi

Tuesday, April 4, 2006 7:46 PM CDT

And here's my full length portrait...corsage sent specially by Nana Robertson! Thanks soooo much nana!

Anyway here is Junior Honor Society Member......SAMANTHA ROBERTSON!! yay me! =0) ;0) :0) !0)

******April 6 Thursday...Sam is still feeling really bad...Her head, neck and shoulder are hurting her...So we'll be going back downtown at 10 am, when the nurses get there....Dammit

April 6th, later that night....Sam seems to be feeling a little better....The nurse said all her symptoms are related to the "intestinal" problems she's always had but even that is a lot better than it was. They drew some blood and I guess we'll find out Monday if there's any infection. Sam is insisting it's not the "intestinal" problem that is causing her symptoms. She's been right before so we'll see. She missed her dance tonight and chorus performance yesterday so she's kind of upset about that. But she and I went downtown and got some ice cream and I made her laugh so much she said it hurt. That's good. Thanks again to Suzie Ott for Sam's cool graphics.....She just loves it!!!!

Tuesday, April 4, 2006 3:19 PM CDT

Helloooo! Next time I update I wil be an Official Member of the National Junior Honor Society!! yay me! :0) Caitlin's digital camera is working(fine-UH-lee!)so I promise next time there will be pics of me at the Ceremony(whoooooo)and Flabby Abby's various fat cat poses! Further more.....I AM ALSO GOIN' ON THE NEXT homework challenge field trip!!!!! Guess what we're doing? BOWLING!! BOOOOYUH! SAMMI'S IN THE HOUSE!! (I mean....AT THE LANES!!) I loooovvve my life! Truly, really, totally! Plus today I had chicken nuggets for Lunch, and Chocolate Milk!! Gotta love Growth Hormone Induced Pig Syndrome!(GHIPS) in short...pronounce it like CHIPS!! The name says it all.....

Love, Sammi

Monday, April 3, 2006 8:22 PM CDT

Sam is feeling really good tonight, a little sore, but I went to her dance practice and she's a freaking dance queen. Tomorrow is the big night...There will be pictures....Rachel is going with us so it's going to be loads of fun....Ok I gotta go, she feels great but I feel like crap....Headache...

Suzie and Jeff, I got your email and will email one back tomorrow night...I'm so tired, I probably wouldn't do it justice..... Love, Ellen and Sammi Jean, the beautiful dancing queen....

Sunday, April 2, 2006 10:36 AM EDT

We got home yesterday, she's still kind of sore but doing really well. On Tues, Sam is being inducted into the Jr National Honor Society, so we're very excited about that. It's a big honor. I can't wait.

Friday, March 31, 2006 8:40 PM CST

It's Caitlin, updating for Mommy and Sammi.

Sam's doing GREAT. She will probably be home tomorrow or Sunday, which is awesome.

I would update more, but I have friends over. Mommy just wanted everyone to know what's going on with Sam.

We Love Everyone. Yep, I'm just so happy that she's diong so well.
See you guys, hope all is well.

Monday, March 27, 2006 2:53 PM CST

Hey peoples!! Guess what today iiiissssssss........No really guess!

IT'S

MY

3RD

YEAR

ANNIVERSERY

OF

MY

DIAGNOSIS!!! Yay me!! Happy Day! Why is it happy you ask? Because I have learned lessons only a few special people learn.....love is stronger than suffering, and even death.....love lasts longer than suffering, and death....and what it means to really love, trust, lose and gain. I've learned who my friends are and that life isn't just a thing....it is what makes things and the paths it takes us makes us who we are. It has taught me to rise above criticism, discrimination, and hate.
Plus if my Rathkes cyst waited until I died of natural causes like they usually do for the normal people to announce itself I wouldn't get to wear my attractive, blue "I am A Brain Tumor Survivor" shirt!! I can say what few other people can really say....I REALLY am a survivor! I've overcome the odds and I am a stronger person now.

Also today would be my friend Emerald's 12 birthday...HAPPY BIRTHDAY EMERALD!! Her link is down at the bottom of my page, you could say a few comforting words to her mom.
I miss her so much....she will always be my hero!

Love, Sammi(SURVIVOR!)

***March 28 - Please pray for our friend Linda, who has already been in the hospital for a few week with fever and they are transferring her down to Harper Hospital today for some procedures....

Sam has a horrible headache, not sure if I am going to take her down town or not. I am letting her sleep a little longer.

****March 30....Chris called downtown, Dr Sood is out of town, of course. He's asking that we hold off bringing her down until her appt on April 10. In the meantime, she's not going to school and she's suffering. This really sux...They are talking about possibly changing her shunt to an LA shunt, which means it would drain into her heart. I guess they think that her problems with constipation are causing draining problems.... Her induction to the national honor society is next Tues...I hope she can at least go to that. I don't know what else to do...We hate living like this.

****Later March 30....Sam will be having an LA shunt placed tomorrow. The nurse says they're reluctant to do this but at this point we have no choice. Her abdomen is just done...One problem with the type of shunt they want to put in is that they get infected a lot easier, due to their proximity to nose secretions etc....but we have no choice. Please pray for Sammi...she's so strong but so tired...

Wednesday, March 22, 2006 3:54 PM CST

Sheesh, I have a cold and sore throat and feel like comlpete sh-, I mean crap! It's the Drenaline thing I guess....I have to tkae 10 milligrams instead of 5 whenever I get a cold, but it only helps me not to go overboard(usually)with the adrenaline crisis but it does NOT help with how I feel when I get even the slightest cold.

Love, Sammi

**An Hour Later** Pray for my brother Alec....He is sitting at the table right now crying over the prospect of eating 3 bites of a pizza.....I feel so bad

Sunday, March 19, 2006 10:52 AM CST

Holy Crap!! ****2**** POINTS AWAY FROM STATES AT CHORAL FESTIVAL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I can't beleive it! We got a 1 on Melodic Dictation, and on the singing we got a 2,2,2, and a 1!!

Anyway we are going to COSI today, and I asked RaRa(some people are asking me if it's Rah-Rah or Ray-Ray, Her real name is Rachel so yes, it is pronounced Ray-Ray)and her Botchie(polish for grandma) is coming over so she couldn't come, so now I'm asking Sarah, a friend from school to come. She said she would call back. I am seemingly desperate bacause Alec just wants to sit at home and watch Lord of the Rings all day at dads! IT DRVES ME NUTS! He hardly ever plays outside with me anymore because all he does is play video games!

P.S. Sarah called, she can't come.....aye!

Love, Sammi

Thursday, March 16, 2006 7:00 PM CST

No, I'm not dead....I just have been having bad headaches, and tiredness, and weakness in limbs, pain in limbs.....the list goes on soooo.....Anyway I have Choral Festival tommorrow! I'm singing with my Chorus class at school tommorow and if we get a good score..........WE'RE GOIN' TO STATES!!!!! AND WE WOULD BE THE FIRST 7TH GRADERS FROM WILSON MIDDLE SCHOOL TO GO!!!!!WE ARE SOOOOOO GONNA WIN!! Also we had conferences today and despite my missed school days...I STILL HAVE PRINCABLES LIST!!!(even though I think I spelled princable wrong....)

Love, Sammi

Sunday, March 12, 2006 7:21 PM CST

Remember Emerald....her site is down under LINKS. I can't believe it's been a year....I've been crabby, but no one seems to understand why....doesn't mom and dad remember? I HATE CANCER MOST OF ALL TODAY!! WHY CAN'T IT JUST LEAVE US ALONE OR AT LEAST GO AWAY AFTER A TREATMENT OR TWO?!?

***Monday...Sam is laying on the couch with headache she's rating 7 out of 10. I just gave her some meds, hoping it helps so she can go to school. She can't miss any more school....She also says she feels sick. I made sure she's not dehydrated so I'm not sure what it is. When she gets up,she says she's dizzy....HMMMMM Sounds suspiciously like where we were a month ago....

Friday, March 10, 2006 8:05 PM CST

It's been a tough week....From constipated-animated docters to finding out that both Elisha (tx/elishahenderson), and Cameron(ct/cameron) died while I was in the hospital, and Emerald's Angel Anniversery is coming up....I HATE Cancer! I HATE diseases! I HATE losing people I care about! I HATE it all! {0( I plan on making some kind of banner and hanging it on my house on Sunday. I LOVE YOU EMERALD AND KIM!!!! EMERALD YOU WILL ALWAYS BE MY HERO!

Wednesday, March 8, 2006 4:16 PM CST

Allrighty....first off I do NOT think it's constipation!!!!!! What was everyone saying before they found I had grown so much, my shunt said,"whooo, I'm getting tired of being stretched sooo....revenge, HERE I COME!!" and popped off place? And what were they saying before my CSF got tired of being bossed around by my shunt and decided to start a Cystic riot in my abdomen?(I couldn't stop saying,"I TOLD YOU SO!" all those 16 days I was in the hospital!)I mean if it was constipation, what about the UPPER back pain and why would it be sharp? What about the joint pain? hmmmmm....It seems to me, they've seen me so much they are just tryin' to get rid of me! uh-kay, just needed to vent that....anyway I have a new E-mail address....Funsized410@hotmail.org Made up that name myself!(okay, so I saw it on the commercials for candybars!)

Love, Funsized!

Wednesday, March 8, 2006 7:10 AM CST

I know everyone is waiting for Sam to update and I'm sure she will be tonight...Her constipation is back in full force and I know this is a gross subject but it's really causing her a lot of problems. We are going to get her cleaned out and feeling better. The doctors office basically said her bowel is so tired of being like this it's just kind of quit working and so everything just kind of sits there, til it gets moved by new food. So needless to say we'll be working on this...Thanks for all your good thoughts.....

Monday, March 6, 2006 7:00 PM CST

Sam is still feeling crappy, Chris is going to take her downtown tomorrow for an ultrasound, since I have to work. Her pain is in her back, under her shunt incision and between her shoulder blades. And she's a little swollen by her valve. So I'll update tomorrow, when I find out whats going on. The poor thing just feels so crappy and she's missing school and dance and she's just not happy. Ok I'll update tomorrow.

Thursday, March 2, 2006 8:37 AM CST

Sam is starting to feel crappy again, headaches, backaches, and extreme tiredness. I know if they call, they're just going to tell me it's nothing. I'm going to wait til tomorrow and if she's still feeling crappy, I'll call....

Tuesday, February 28, 2006 8:29 PM CST

Alrighty People! Still having back pain when I sit up for a long time(like in the car and in school....problem)Sooooo we had to take Nik(AKA Pik)home(his roommates home anyway)and I have a tumor on my arm where my IV was....what? Thats what it looks like! It is red, and scaly(watch it, I am getting graphic)and has a hard, lumpy feeling! eeewwwww

Anyway we were just discussing Flabby Lord and Zoe(Flabbs sis who lives with Caitlins friend)I was wondering since all cats are techniclly twins where did The Flabbster go wrong? Zoe is perfectly healthy and seriously hyper all the time and Flabby Abby here looks like a pear sitting down, and a melon laying down, and is only active when she is hit by these crazy spurts of activity! Over the weekend she was going nuts because we have not vacumed(mom wants me to add she was taking care of me not the house!) in a while and there were little bits of paper all over the floor! I will take a picture of her laying down, sitting, and doing that crazy floppy thing she does when she wants attention and post them later!

Love, Sammi Jean the Beauty Queen!

Saturday, February 25, 2006 11:40 AM CST

Due to demands and requests....SAMMI IS BACK!! Hey peoples! I'm doing ok, it sucks that this is only the 3rd day i've been home as a teenager though. I was soooo looking forward to a Birthday on a Friday at school where they would sing to me at lunch and chorus and decorate my locker! I've only been able to use one of my Birthday presents too! oh well...Anyway I will probably update more tommorrow, Alec's buggin' me 'cause I kinda kicked him off to please you guys! That kid and Technology, I swear!

Love, SAMMI(finaly!)

Friday, February 24, 2006 7:28 PM CST

Sam is home....well, she's at Nana's but that is cool too. She is having a little bit of back pain but considering it's been cut open 3 times in the last 12 days, I'd say that's expected.

She's going to update probably tomorrow or Sunday when she comes home....I'm sure she has lots to say and I can't wait to read it myself. Thanks to everyone for all the well wishes and thoughts and cards and gifts but most of all the prayers. Please pray for our new friend Samantha who has had over 200 shunt revisions and had to have open heart surgery due to blood clots that formed near her heart and some new ones they've found in her upper arms. Her and her family are sweet. We've seen them almost every time we've been in the hospital but we were finally roommates.... And for a little girl named Mika who was our room mate last week, she passed away from a severe case of pneumonia...she was only 11 years old. Her and her mom were very nice and very good roommates.

Friday, February 24, 2006 5:15 AM CST

I think Sam is coming home today, but I have to work so I'll update when I find out.....Woo Hoo....

Thursday, February 23, 2006 6:40 AM CST

Hopefully Sam will be coming home tomorrow but we'll know more later, her electrolytes have been kind of messed up but they think it might be because of finger pokes so they're hep locking her today so they can draw blood out of a vein. I'll try and update later, I'll be there early so I should be able to. Linda, if we're there tomorrow you're more than welcome, we have no problem meeting new friends....Talk to you soon... Love, Ellen and Sammi

Tuesday, February 21, 2006 3:47 PM CST

They did the ultrasound, and it still shows fluid, but the cyst looks smaller. Boo&YAY!
They aren't sure if they'll be able to do the surgery tomorrow. She's still leaking, so she's still in bed. But she's leaking all the time now, instead of just when she was standing up like before. So they might have to put a stitch in, if they can't do the surgery. We don't really know what that means. We don't really know anything. We'll update later. MOMMY IS HOME TONIGHT. YESSS! From Alec and Caitlin. We're already happier and mom and Al are going outside to play football. Kind of. Here's Sam, recently when RaRa came to visit. Ps. When I say Al, I mean Alec. He's getting cranky? I'll try to remember to call him Alec. (But Al is so cute, don't you think?) Anyway, here's Sammi and RaRa!

Monday, February 20, 2006 4:54 PM CST

Well, the plan is to do an ultra sound tomorrow and depending on what they find they'll either put her tubing back in her abdomen or into a vein leading into her heart. She's ok, stuck in bed tho because everytime she gets up, her incision starts leaking csf. I am working every day until Sunday, which we're not happy about but I have no choice. Hopefully she'll come home on Friday.

Sunday, February 19, 2006 7:44 AM CST

Well, Sam has been having trouble with her Diabetes Insipidus so no rodeo, but she felt so crappy she really didn't care that much. She is (or was last night) dehydrated, so her sodium was high which can be dangerous but I didn't get any calls over night so she must be doing ok. Alec and I went to a movie, out to eat and back home so we had a lot of fun. Ohmigosh, it so freaking cold here, we froze just walking to the car. Yesterday morning it was 5 degrees when we got it, it's 11 today.

Ok, hopefully I can get Sam down to the computer tomorrow so she can update. I miss reading her updates so I'm sure you do too....

Saturday, February 18, 2006 8:57 AM CST

Sam is still sleeping, they finally had a private room open up yesterday so hopefully this is our last room change. She been having some leaking from her drain site, but it's only when she gets up. We got some tickets in the mail yesterday to a rodeo at the Palace, where the Pistons play, tickets in a suite but I'm not sure if they'll let her go with the drain in place....We hope so, it would be good for her to get out. And I'm not sure what is going on with her DI, she's urinating about twice what she is taking in so they're going to check her electrolytes and make sure those are ok....

Update...Nik is working, Caitlin is in Chicago with Rachel, Alec is at home with his dad and DJ and Sam and I are here. So everyone but Sam and I are happy. Oh well, at least we're together.

Friday, February 17, 2006 10:09 AM CST

Sam is feeling ok today, she seems a bit crabby but I think it's because her drain is on her abdomen and she just hates that. I keep pulling on it and touching it and I'm just a horrible nurse....Luckily she doesn't hold a grudge for long. She's watching Charlie and the Chocolate Factory and I'm running down to get her a yorks peppermint patty. So far no infection in her csf either, so that's good, but we'll still be here til the end of next week. Ok, Mary Alice I'm going to call you tonight, to hear a friendly voice..... Talk to you all soon, Love Ellen and Sammi

Thursday, February 16, 2006 2:27 PM CST

It's Caitlin, updating for Sammi and my mom. My mom is at work right now, she can't get anymore time off, and the internet is down there.
Well, Samantha had another surgery yesterday. I'm not sure what the medicinal terms are all called, but they made it so that the fluid that her shunt deals with will now drain outside her body, I'm assuming so that the psuedotumor doesn't get anymore help? But she had a few complications last night afterwards, but I talked to my mother today after school and Sam is doing much better than last night. My mom is also in a pretty good mood, she was being kind of goofy on the phone. My mom is going to go there after work at take over from my step-dad. Sam is doing really well not only with her health, but being left alone in the room while my parents are "switching shifts" because of work and Alec schedules. She's doing great, and I'm very proud of her.

PS. I would like to say, personally that I was very surprised at the magnitude of love pouring from our families' CaringBridge friends. I guess I never understood fully just how many other people get to experience Sam every day. You guys have definitely helped make these last few hospital visits and her birthday very special. She is such a great kid, and I can't wait until she can come home and hang out with me.

Tuesday, February 14, 2006 7:51 PM CST

Oh my gosh, Sam has a huge pseudocyst in her abdomen, as her peritoneum has said enough is enough and is refusing to absorb any more fluid that belongs in her brain. So they have to externalize her shunt, put her on antibiotics for 7-10 days and then put her shunt back in. This sux on so many levels I can't even go into it, but suffice it to say this is affecting our family in ways it never has before and it's going to be tough but we'll get thru it. I came home tonight, at Alec's request. This stuff is so stressful to him....Please pray that there is no infection, and that they don't have to put her tubing into her heart, that kind of scares me. Thank you to everyone and if anyone wants to volunteer to watch her next week while I'm at work...please let me know...I'm looking for Monday thru Thursday.....OY Ok I'll put the number on the front of the web page. Oh, we're back in the room we just left, in the crappy bed. Fate....

Chris called, they moved us to a room by the window so we'll be more comfortable.. I'll update room info...

Monday, February 13, 2006 9:41 AM CST

Sam is feeling like crap again, headache is constant about a 4 out of 10 when she's laying down and up to an 8 or so when she's up. So we're waiting for them to call back and let us know whether we should come down or what. This really sux. She can't miss anymore school....I'll update more later.

***Well they want us to wait til the end of the week before they do anything. So I'm going to have her go to school tomorrow even tho she will not feel good...That should be fun.... She'll try and update later, when she's feeling better. Love, Ellen

Well, she's developed a new swelling on her back, it's way worse when she's upright, as are her headaches....So once again, we're waiting for them to call us back. There's definately something wrong with her shunt. This really sux.

****Should be final update tonight....Talked to Dr Sood, he wants me to bring her to the ER tomorrow morning and probably get her admitted. You can actually watch the swelling grow when she stands up. Dang it all....She's ok just laying on the chair reading. Dammit....

Sunday, February 12, 2006 9:14 AM CST

Just a quick update, I'm at work and Sam is home so all is getting back to normal, my internet is out at home and should be back on by tomorrow so I'll update more. Thanks for all the prayers and presents and cards and good wishes...Sam will update more....she misses it. Love, Ellen

Friday, February 10, 2006 10:02 AM CST

Bad headache, leaking shunt, possible infection...today sux...but she picked out lipstick as her bingo prize so she must at least feel 13....god this sux.....she's laying in bed crying in pain, i gotta go, will update later when i can. love, ellen

Thursday, February 9, 2006 3:05 PM CST

Thanks to Sammi's secret web page helper for the awesome graphics......She's doing well, came thru her second surgery in 3 days like a trooper. They put a new valve in that will make her pressures a bit higher.....Thanks for all the messages....I'll update more later. Ellen

Wednesday, February 8, 2006 12:47 AM CST

Well, it looks like Sam has grown out of her shunt, that's why her pressures are going low, so they're going to put a new one in tomorrow...Darn it...She'll probably be in here for her birthday but we're going to do everything we can to make it a happy one....She's ok with it...I keep seeing the same faces I see everytime we're here, I feel like part of a weary group. It's weird. But she's feeling ok and is relatively happy. Thanks for signing her guestbook and for all your prayers. Love, Ellen

PS - In my mom's last update, she said that they were in room 575-2, but really they are in Room 575 bed 1. Sam's birthday is Friday, if you can't talk to her, just say a silent Happy Birthday. She'll be able to hear them!

Tuesday, February 7, 2006 4:04 PM CST

Well, it looks like Sam has been having problems because of low pressure. I think that probably means a new shunt but I haven't told her that yet because she'll miss a dance at school on Thursday and her birthday is Friday. But she's feeling ok right now. She had some bleeding during the surgery so Dr Gilmer-Hill says they need to use a new spot next time, this one is done....We're in room 575-2 I think, the uncomfortable one, with a chair for me to sleep in... yuck... I'll update tomorrow hopefully with more info... Sam wanted me to tell u about a little joke we played on the doctor...she had to mark the surgical spot with a marker, so we added a little spider sticker on top of it. Hopefully the doc didn't get to scared when she parted Sams hair and saw that!!!! Love, Ellen

Monday, February 6, 2006 7:03 AM CST

At work...computer at home internet is down....Sam still feeling like crap....Took her downtown Saturday night in blizzard, they say nothing is wrong. The neuro surgeon came in to talk to us...says maybe we should try a lumbar puncture to make sure she's not malfunctioning and then I suggested maybe her problem is the Chiari Malformation. She said maybe we need to do another MRI to make sure. So I have no idea where this is headed...All I know is that Sam feels like sh*t everyday and we're sick of it. I hope they listen to us. It's not constipation...that's what they always blame. Thanks for all your guestbooks messages, they honestly make Sam very happy.....Will update when I know more.... Love, Ellen

P.S., the other day when I was thanking people I somehow left out Suzie and Jeff Ott who have kind of adopted Sammi and done so much for her.....How I left you out, I don't know but I'm sorry...

****UPDATE...Sam is having an ICP monitor placed tomorrow, I have to have her downtown by 1015. This usually entails a couple of days in the hospital but she has tolerated this procedure fine in the past and hopefully, hopefully they can find out whats wrong with her....I'll update as soon as I can tomorrow evening.....Please Pray for Sammi....and Alec, he gets very anxious when she's in the hospital....

Friday, February 3, 2006 5:48 PM CST

Hey Peoples!! I got my repooorrrrtttt caaarrrrddddd!!=0)

1. Phy. Ed. T. Mckee A- C 1

2. Chorus K. Kane A C 1

3. Lang Arts M. Mans A C 1
Well behaved/a pleasure to have in class

4. Soc St D. Trudell A C 1
Attentive/actively participates/highly motivative/Well
behaved/a pleasure to have in class

5. Sci M. White A C 1
attentive/actively participates/highly motivative/well
behaved/a pleasure to have in class

6. Math B. Greene B- C 1

I'm happy! I just need to not miss as much school!! I've missed 16 in some classes!! whooooo Sooo yesterday we noticed my back was swelled...kinda bad, It almost feels like the fluid pocket that gave me so much trouble in 2004-2005. Eh-Oh....and I have been having dizzy spells at school and headaches still....please pray that it does NOT mean anything!

love, Sammi

Wednesday, February 1, 2006 8:54 PM EST

Hey Guys....The EEG went fine except I got red marker on my face and my hair went all Frizzy and Goopy at the same time from him messing it up to get to the spots and from the circles with the goop on it and the soap stuff! wow, anyway I'm still feeling pretty crappy and didn't make it to school for the remainder of the day after we got ho,e and I took a shower. Anyway tune back for more B-Day Paaarrtey info! I'm inviting everyone who is reading this and can come!! Only 9 days to go!

Love, Sammi

Tuesday, January 31, 2006 2:35 PM CST

Hey everyone! Tommorrow's the "mandatory" meeting for those poeple(like me!)going to CHICAGO!! Yeahyuh! Except....I have an EEG tommorrow. That sucks...oh well, maybe they will find out why my hands are always shaking! It stopped after I quit the Elavil, nut It started again and makes it hard to write, bowl,EVEN EAT! etc...SooooI started computers this week....amd I vam'i io[d!!(translation for bad typing:And I can' type!!)whatever, I guess now's the time to learn!

Lomr Sammo.

(Love Sammi)

Sam wanted me to update and let everyone know that she feels like crap and her shunt is twinging and she says it's swollen and everytime she stands up she gets a headache and she likes me better with gray hair, which I promptly took care of, thanks to a box of L'oreal... We have been working on Thank you cards for all the people who have sent things to Sam. Especially Candy, Janet and Celeste....please be patient...she has been so tired but we are working on it. She has really enjoyed everything she has received and is very appreciative.

Wednesday, January 25, 2006 2:44 PM CST

Hey people! I'm feeling better....at least not as tired. We were playing this crazy game of volley ball where it is 4 way across 2 nets crossed into an X, aannnnndddddd.....I HIT THE BALL ONCE!!! OK,OK, So the ball hit ME twice,(right in the 2-holed sneezer!) so what! This is my last week of gym anyway! Suhweet! So other than that nothing really going on ezcept Suzie Ott, who gave me all those cool orbs and the X-mas decorations is gonna do it again!! THANKS SOOO MUCH!! And I got a new American girl! I got Josefina, my 9th!!

P.S. If you are reading this Suzie, I would like for you to keep the First orb you gave me on my site so I have a remender of what you have donme in the past for me!!=)

Love, Sammi

UPDATE THURS PM....Someone please tell me in my guestbook if my new song is working!!=( It won't on my Computer sooooo let me know!

Monday, January 23, 2006 8:58 PM CST

Sam has been really really really tired lately, and crabby, which I'm sure comes along with the tired. They did a shunt survey on Friday, in between her endo appt, because the nurse misunderstood something we said. We just wanted the injection into her scalp to help with headaches and the nurse misunderstood and sent us for an xray. I should have questioned her.....but I didn't...I will next time.

Thanks for all the messages in her guestbook....She loves them... I'll update more tomorrow when I'm not tired...Pray for a little girl named Valerie who is having surgery tomorrow... Ellen and Sammi

Saturday, January 21, 2006 4:57 PM CST

OK...Endo. I am now 145 cm(4-foot-10-and-a-third) and 74 lbs! Yay! Like Dr.Epsteins Book, If I get to Five(feet)I can touch the basketball net!! whoooo Anyway I am now in the normal weight limit for my size(though my size is too small)and I didn't even have to draw labs!=) yeahyuh! So Dr.Moltz said next time she'll check my hormones and my bone age, If I don't have "Girly" hormones(which she said I probably don't) and my Bone age(last time it was 10) is right then I can start on them in 3 months! She said we will start with a patch that we would cut in half and put it on twice a week, and eventually progress to a whole patch twice a week and then some pills 7 nights a week. She said once I get my period though I could still not be normal once a month really. So I would probably take pills to regulate them too. She said I have to take Growth Hormone shots the rest of my life(aww snap!)and all the other hormones.

So I went to Bowling today and I got a 67(bad),92, and a 106....yay! But when I picked up my ball once I felt something snap! eh-oh...But I havn't felt anything else so I'm hoping!! And I'm not as tired today.

Love, Sammi

Friday, January 20, 2006 4:04 PM CST

Hey guys I'm really, really tired for some reason but I had an Endo App. and I guess I forgot to tell you. I will tell you about it as soon as I feel better....Pray this tiredness will stop and DOESN'T MEAN ANYTHING!!!

Love, Sammi

Monday, January 16, 2006 2:50 PM CST

I just learned about a boy named Connor who lives in South Africa and has NueroBlastoma and treated it for a while but now they don't want to do anymore Intense treatment so he only has under a year to live, and he is actually dying right now.... Except if he can raise 600,000$'s to be able to get to America for treatment! Holy shoot! You can go to his site if you go to www.caringbridge.org/me/dylanhartung and go to his journal entry, Dylan's mom put up a link to Connor's website...if it's not there you can go to his journal history....Just find the link to Connor Gerber. Only a couple weeks till my Birthday...Oh yeah! For my Birthday party I'm officially inviting EVERYONE who reads this!! Check back later fo Details...it's not till Febuary of course but I'm trippin' already!=0) Also the Next Dance for school is the day before my Birthday...And both the Movies Pink Panther and this other Action movie is coming out to theatres on my Birthday...And the Olympics start on my Birthday, I think!! MAN do I feel special!! Yeahyuh So today this morning I didn't take my Periactin 'cause we're trying to see if I can go without it! I hate taking 2(Cortef, Periactin) pills in the morning, 1 after school(cortef, again), and 5 at night!!(Periactin, Cortef(grr),Senicot, Colace) Now I'm down to Cortef in the Morning and After school and Cortef, Senicot, Colace, and Periacyin at night.(I'm not taking Periactin in the morning because it might be why I'm so tired in the morning since it is a sleep-aid also)

we are going to the Auto-Show now so I have to go now!

Love, Sammi

Sunday, January 15, 2006 7:12 PM CST

10 secs till 24!! gotta go update later! ITS ON!!(SCREAM)

Wednesday, January 11, 2006 7:08 PM CST

Hey guys! Gues whaaatttttt? Did you guess?

I GOT MY IPOD!! WHOOOO! I loooove it!!=0) The first songs I put on it was the whole Black Eyed Peas CD!! Yeahyuh! Now i've been listening to my iPod for about 4 hours straight....what? I looooove Music! oh yeah..."My Humps" just came on!! Yeah I know what you parents are thinking but I don't count on this song for influence, don't worry about that! anyway after school I went to the library to turn in the books I got yesterday(I'm a reading fool)and got new books and waited for dad to pick me up....I guess he slept in!! WAAAAYYY in! I finally called him, though Washington(Alec's school)called him first! It was SERIOUSLY colduh! Well that's all for now except I've been feeling really, really tired.

Love Sammi

**update**thursday PM I stayed home from school...headache and nausea....also Jake needs prayers, his parents have to decide on the course of his treatment and both choices are hard ones. www.caringbridge.org(slash)la(slash)jakeowen

Saturday, January 7, 2006 7:31 PM CST

Hey People....RARA'S HERE!!!!!!!=0) Now were watching Bruce almighty after playing Sims for about an hour. Yay Anyway I took a tylenol PM to help me sleep....I've lately been sleeping in till 1 or later! Alec's worse though..He slept in till quarter to 4 2 days ago!! Hoooooly crap! Also I've been working on a poem for The boy from CAPS FOR SAM. the website is www.caps4sam.com and he had a Brain Tumor too...his mom wants peices of writing from kids with brain tumors for a fundraiser! Yay=) I will probably have the poem tommorrow and I'll share it with you guys then!!

Love, Sammi

Saturday, January 7, 2006 1:36 PM CST

Hello Guys! I have to clean my room(Caitlin's the one that messed it up...Unfair!)Before we go see Cheaper By The Dozen 2 with RaRa's family at 4:15...And Caitrlin messed it up bad! She had to take the matress off my bed for a sleepover and had to drag it across my room! DISAAAAASTER! Nothin' to report except I've benn having wierd headaches and sleeping 12-13 hours a day!

Love, Sammi

Wednesday, January 4, 2006 9:20 PM EST

Hi Guys! IF YOU ARE READING THIS MONICA LOPEZ......A VERY HAPPY BIRTHDAY!! No I haven't forgot about you, I still know you birthday! I have a surprise coming, I'm sending it tommorrow! =) Anyway....Jen is coming over(Caitlins friend)to babysit, since mom is at a "Bowl" Party for Foot ball or somthing? So we are here for now with Abby who just got done sniffing the DVD's and is now just sitting here probably hungry....That's Her Flabbiness for you! Now Abby is playing with my Mr. Potato Head Earing! well now you know 'Cause it's Sam's Super-Short....Journal Entry!(doing that hand-gesture and everything)

Love, Sammi

Tuesday, January 3, 2006 1:40 PM CST

Hi People! Oy, I'm feeling better but I still have a cold. Yesterday I was feeling reeeaallly nautious and starting at 9 PM my head hurt whenever I moved it, thank you that's gone!!=) Ooooooh! Anakin just got his arm cut off, That's bad....Sorry for the graphics....Since I won't let Alec near Star Wars 3 he has to settle for #2. Heeeyyyy! DAD FORGOT(again) TO GIVE ME MY ALLOWANCE! How ruuuuu-ude! I'm supposed to get it every Sunday but I guess I have to remind him myself! Well that's all for now!

Love, Sammi

Sunday, January 1, 2006 9:26 PM EST

Hi All, the kids are staying at Chris' one more night, he doesn't get them at night very often and he's off tonight, so I said sure. Now I can go to bed, I've been working a lot lately and I was supposed to have my Canadian relatives over tomorrow. But this week has gotten away from me and I'm not remotely prepared so they're going to come over on Sunday. I'm so tired....but enjoying the peace and quiet. I start my job at the auto show this week, just working on my days off, but it's nice extra money. I don't go back to the pd until the 12th I think.

Sam called, she has a bad headache. I told her to call me if it gets really bad. She said what are you going to do? I told her I'd whisper sweet nothings to her to cheer her up or race her to the hospital down the freeway. Whatever it takes. I'm sure she'll be fine tho. She's a tough cookie. Ok, HAPPY NEW YEAR!!!!!

Love, Ellen

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