History

Thursday, February 3rd, 2011

Yet again, it's been an awfully long time since I last updated...but nowadays, you can all be assured that no news is good news.

I'm still doing about the same...struggling with the POTS and yet still going out to the east coast every couple weeks(or so it feels)to see friends. As a matter of fact, I got stuck out there for three weeks in the beginning of January because of all the crazy weather! But that was perfectly fine with me. I stayed at the Giguere's house for the first two weeks and we made extremely...er...memorable memories whilst I was there. Then I stayed the rest of my time there at Lexie's house and then Donna's house until I finally got a flight home. I had such a great time, per usual, and I can't wait till we go to Camp Sunshine for the winter session in a couple weeks!

Since I got home, I've been feeling a lot worse than usual...fatigue, headaches and a lot of bone pain but I had another double risotomy(the nerve block to the occipital nerve that I had done a year ago)and that's helped my recent headaches a lot. So that accounts for the worsening headaches and I can only suppose that the horrible weather we're still having is causing the rest of it.

On the other hand, unless I'm much mistaken, I do believe that 2010 was the first surgery-free year I've had since I was diagnosed!

(Please, if you have any wood available...do me a solid and knock on it)

In other news, only one week until my 18th birthday! I went in today to apply for a PID and they also gave us information on applying for SSI. Actually, I have an appointment to apply for SSI at 9 am on my birthday...not an ideal way to start off adulthood but hey, it's neccesary.

I'm going to sign off for now, but for once, you can be sure that another update will be coming very, very soon. I have had some things on my mind recently that I think should be out there. It's a long update though and I have some people that I want to discuss things with first, so look for it within the next few days.

Monday, October 25th, 2010

Once again feeling inspired to update...my muse probably has more to do with the awesome Disney music I'm currently listening to, rather than the growling, hissing and complaining of our two cats under my bed.

(Don't worry, Karley is just a mean, crotchety old thing that, even after nine months, can't stand her younger and hyperactive room-mate...other than some pouncing and playful(on the part of Seamus anyway)biting, they don't do any harm)

I was feeling marginally better the last couple days but since there's a major low/cold front coming through that's bringing rain, storms and 60 MPH winds, I'm of course dealing with the subsequent low pressure headaches, nausea and aches.

However, I have my mind on more important things. Either Wednesday or Thursday, I'm once again flying out to Boston to visit The Magical Moon Farm for some Halloween festivities! I'm crazy excited to see all my friends/family again...it's been two whole weeks since I saw most of them last, afterall. I'll be going by AngelFlights this time though, which Donna was kind enough to arrange for us! This way, I can get out there for free and I also don't have to deal with metal detectors, toting heavy luggage around and, since the small planes don't have to go up as high, less of a headache.

November is going to be a crazy month...I have an appointment with Neurosurgery, Endocrinology, Pain Management and my first appointment with a POTS specialist, all within the first two weeks. I'm also planning to attend a meeting for teens with Hydrocephalus. I think I'm forgetting some appointments but I'll let you all know what's happening when I find the time.

Until next time!

Monday, October 18th, 2010

I know, I know...it's been a very long time since I've even logged onto my Caringbridge page. But all of the sudden, at almost eleven o' clock pm, this Monday night, I got the urge to update, so I thought I'd seize the moment and get that done.

Things have been great. Not healthiwse, but lifewise.

Healthwise, I still feel bad most days and at least one day a week, I can't even summon the energy to get out of bed. I feel nauseous, fatigued, dizzy and achy all over. I had my yearly MRI on Friday and we got the report today. I'm pretty sure that the cyst has recurred. Honestly, since the first fishy MRI back in 2007, I've had a feeling it was back. The six years since my craniotomy have been the hardest of my life...I wanted the surgery because I thought that getting that thing out of my head(and finally knowing what it was)would solve all my problems.

It didn't. It made everything worse and this is when I believe the POTS really started to get worse. And it was basically all a waste because the cyst is still there.

Believe it or not though, I'm not mad, or worried, or bothered in the least, really. I know I should be, but I also know we have time. Time to watch it and see what it does next. To see whether it grows more...because one thing that WOULD suck is if it were to burst again. One exploding brain tumor is enough for one lifetime.

My focus right now is living it up. I've officially put myself in what is called 'Watch and Wait' but what we BT people like to call 'Watch and Live'.

The past few months, I think we've been doing a great job.

Lifewise, I'm doing pretty good.

I've been to Camp Sunshine twice since my last update and both sessions are definitely going down in history for me.

I've almost spent more time in Boston than I have at home and that's completely fine with me. I've even started calling 'pop' 'soda' and of course, that drives everyone here in the midwest crazy.

I've started to seriously get to work on my book and it's going well.

I've been learning to play guitar for the past two weeks(and I've got the numb fingers to prove it).

The nerve block is still holding and my head is still so much better.

School is going really well, for me and for Alec.

And of course, my mom and I are completely bald...and loving it!

We’re pretty happy around here lately…and we plan to stay that way.

Wednesday, June 16th, 2010

Sorry for the serious lapse in updates…This year seems to be really flying! I’m still having my good days and bad days. As of right now, there are more bad days than good days but I’m managing.

I was able to go to the Friends of Jaclyn banquet last month in DC and it was amazing. Thanks to Friends of Jaclyn and the Murphy family for all that they do for me and for hundreds of other kids with brain tumors! And a big thanks to Lily, Dennis, and Olivia for having me at their house in New York and for minding me for the whole weekend!

The U of M softball season ended earlier in the Regionals than last year but I had another wonderful season with them and I can’t wait for next year to begin!

Like I said, I’m having bad days still, mostly because of the POTS and the weather systems we’ve been getting here lately. I have an appointment with a POTS specialist here in Michigan on the 30th. Hopefully, he’ll give me a definitive diagnosis and, if we can pinpoint the exact causes and triggers, we can manage it and treat it more effectively. Unfortunately, POTS is a disease that can’t be cured and it can be extremely difficult to even manage. I also had an eye appointment(just a regular check-up)and my vision has only decreased a little bit. So that’s good, compared to how much it deteriorated last time. We haven’t checked up on my peripheral vision since last year.

Alec, Mom, my dad, and I are taking a vacation up north to the usual spot(Houghton Lake)later this week and towards the end of next week, I’m leaving early to fly out to Boston to visit with the Williams’ and the Bartorellis’ and to go to the Magical Moon Foundation’s trip to a local fair. Very excited about that!

I haven’t mentioned this yet(at least on this website)but Mom and I are shaving our heads in September! It’s for St. Baldricks and our teams name is 46 Mommas Shave for the Brave…because 46 children on average are diagnosed with cancer every single day. All of our donations go to research and you can donate at www.46mommas.com

Friday, April 23rd, 2010

First off, a big shout out to Caitlin and Simonne, whose birthdays are this month! Caitlin's was on Tuesday and Simonne's birthday is today...Happy Birthday to both of you!

I relearned some interesting information about POTS this week...allergies severely affect it. I had previously heard this but forgot all about it until I read about allergies and POTS again on a website earlier this week and realized it could explain why I haven't been feeling so hot. Since POTS is basically a problem because all the blood in your veins don't go to the right spots(or at least, not fast enough), anything that could inhibit this process further can be a real problem. Since Histamine constricts blood vessels when you're exposed to an allergen and since there's a huge tree right outside our door that's in full bloom(I'm allergic to pollen), that's bad news for me. We've been keeping the door closed and that's helping a little bit but we'll probably look into some allergy medications.

I've been doing okay though. I've made it to almost every softball game so far this season and it's been great! U of M softball and FOJ has been amazing and I really think it's made a huge difference in how I feel and what I have to look forward too.

So, that's it for now, but I'll update again when I'm able.

And don't worry, I knocked on wood this time. Between my health and softball, I'm becoming quite superstitious.

Monday, April 12th, 2010

Well, I must've forgotten to knock on some wood last week because I've been feeling horrible the last few days. I've been waiting untill I'm in the mood to write an update, but since that isn't happening so far, I figured that maybe if I forgot to knock on some wood today, then my bad luck would reverse itself! We'll see what happens. Like I said before, POTS is a day to day thing.

U of M has been doing fantastic...four mercy games in a row! There is a game this Wednesday and two this weekend, which I certainly want to make it to! It seems like Softball season is just flying by...the softball banquet is about a month from now. The weather has been pretty warm, albeit pretty rainy most days last week...hence the bad headaches, nausea, and fatigue but today is a bit better so far.

I also have a campus tour scheduled for the 15th, at Schoolcraft, the college I'm planning on attending in the fall. I think it'll be a good fit, although I think I'm going to have to learn to drive soon if I don't want to bike there in the winter.

Hopefully, I didn't inherit my parents driving skills, eh?

Friday, April 2nd, 2010

Yeesh, it's only April and I have a half mind to turn on the air conditioning! But I know POTS has a way of interfering with body temperature so it's probably just me. It is getting warmer here though. The bulb flowers have bloomed and people are wearing shorts and flip-flops!

Another cool thing about this weather is that, for the most part, my POTS has gone into remission! I know that the first couple times this happened last year, it only last for a week each time, but this means that hopefully I'll have the summer again. Having a summer of minimal palpitaions, dizziness, headaches, and fatigue, that is. I'll have even less of a headache than normal because of the Occipital block too...so I'm pretty excited to see what the warm weather does.

POTS does go into remission, you see. The regiman and treatment for every patient is different so it's hard to keep a lid on it. The nature of POTS is also pretty swift and without warning...which is why I relapsed so suddenly last August and why the day to day(and hour to hour)symptoms I have vary greatly.

Anyway, while I'm feeling so well, I'll enjoy it! I had an amazing time in Massachussetts(of course)and this weekend, I have two U of M softball games and one hockey game to go to. The Plymouth Whalers, a local semi-pro team, adopted two brothers a couple months ago and we've met them and they are another great BT family! Johnny has a caringbridge site, www.caringbridge.org/visit/johnmuller

So we all are looking forward to all the games here. I'll update again when I can...we're enjoying the new season for now and looking forward to all the time we will be able to spend with friends in the upcoming weeks.

Thursday, March 25th, 2010

Today, Mom and I are leaving for Massachusettes! There we will be attending a fundraiser for Camp Sunshine, getting my armor for The Magical Moon Foundation fitted, and of course visiting with some friends from Camp!

And to think, a year or so ago, we only got to do stuff like this two or three times a year...lately, it seems more like once a month! Which I'm completely happy with, needless to say.

And to think, whereas my "friends" that I had back at my old school were more like the leaves on those trees that lose them after just a couple seasons, all the friends from Camp Sunshine, the U of M softball team, and with The Magical Moon Foundation are much more like the needles on a pine tree...they're here to stay!

This weekend, we will also be going to breakfast with the Oneys and we will meet Erin's family for the first time at a rememberance celebration. It's been just over a year now since Heather died and just under a year since Erin died...you all know they were special because they still have such an inspirational hold over all of us to this day. They will never leave the family tree that something so life changing creates...when you're diagnosed with a brain tumor, you can't help but be drawn to people going through the same thing and you can't help but to build a lifelong bond with them...they really do become family.

And even when they leave one realm, they are still and will always be one of those special people that root us and teach us who and what we want to be in our life.

Wednesday, March 17th, 2010

Did you know that the chances of finding a four leaf clover is only 1 in 10,000?

In my experience though, statistics don‘t mean that much. Sure, it's estimated that as many as 1 in 4 people have a Rathke's Cyst, but how many become symptomatic? Not many...I've googled Rathke's Cysts before(lots of times actually)and I can never actually find an actual statistic, so I assume that means they're pretty rare. How many burst? I've never heard of anyone else besides me that it's happened to.

If you are or know someone close to you with a brain tumor, you probably know these facts.

That 1 in 364 kids will be diagnosed with cancer before they turn 20...and 20-25 percent of those kids will have brain tumors.

There are more than 120 different types of brain tumors.

The overall 5 year survival rate for brain and spinal tumors is 60 percent...but often the patients are left with permanent and debilitating side effects.

For other types of brain tumors, the cure rate is less than 20 percent.

And for some reason, despite these numbers, most people choose to turn their head the other way.

So like I said, statistics are funny things. Most clovers only have 3 leaves...occasionally, a special four leafed clover comes out of the wood...that is to say, dirt work. I've found three four leaf clovers in my life but I haven't even been alive for 10,000 days, much less 30,000.

Craniopharyngiomas are a much more common result for the congenital defect I had than Rathke’s cysts but I got the latter.

Almost every step I’ve taken in the last, almost, seven years has been against the tide and have disputed most statistics surrounding pediatric pituitary tumors and their effects. So forgive me if I don't put much stand by them.

One more little fact…Did you know that the four leaves of a four leaf clover represent a different virtue? The first leaf represents Hope. The second leaf represents Faith. The third, Love, and the fourth is Luck.

I’ve learned a lot about the first three. For a long time, I didn’t have any hope that I would ever be pain free again and I very much doubted that I’d be able to live a normal(or even semi-normal)life. After I lost every single friend I had managed to make during the eight years worth of schooling in Wyandotte that I did, I lost a lot of faith in people as being really and truly good at heart. When I learned that my dad was an Alcoholic, I confess my confusion about love…if he said he loved me, why would he choose a drink over playing outside with Alec and I? I still haven’t quite gotten to the bottom of that, but now that Dad has been sober for just over a year now, I do have to concede that, while Dad did make a lot of bad choices, he did and does love me.

But come on, I mean, the brain itself is a shade of gray. It’s true that nothing is just blatantly black or white. I don’t know why it had to take two and a half years, but I have finally been given hope that, someday, I could just lead not only a normal and pain free life, but a very happy life no matter where that takes me. I don't know what was up with all those kids I shared classes with for years but I have a lot of faith in my family, my many new friends, and myself, and one day, the people who will listen to us and make those statistics sound better. I love my family and friends, and I love the direction my life is taking now. I’m sure that I’ll still have my moments of ‘I wish’, and ’I hate’, and ‘Why?’ but those are far in between now.

And I think that if you have Hope, Faith, and Love, you must be pretty lucky.

Wednesday, March 10th, 2010

They started off beneath the knowledge tree
Then they chopped it down to make white picket fences.

-Excerpt from Blue Lips by Regina Spektor.

I think everyone has good intentions in the beginning…truly, I do. Everyone wants to feel good about themselves, feel like they’ve made a difference, no matter how small. But it sometimes it just seems like most people, when confronted with the discomfort of comforting others, retreat. Like they’re afraid they’ll lose something once they go outside their safety zone.

Yet, you do lose something…your naiveté. The world of Childhood Cancer and Pediatric Brain Tumors is way outside the perimeters of anyone’s safety zone. Heck, it’s still outside my safety zone and I’ve been doing this for almost seven years now. There are still times when I’d much rather slice away certain memories and experiences that I and so many others have. Who wouldn’t rather be safe and comfortable and go back to a world where only old people get sick and die?

However, I don’t have a choice. My family and I have been pushed too far out and our innocent white fence has been turned back into a branch of knowledge that is twisted and gnarled, if a lot of times beautiful in its mysteriousness. What I do have a choice about is what I do with the knowledge and the insight that I have gained. I haven’t done a lot, but I’m doing all I can to fight against cancer in the way I know best - writing. While there is a popular family story stating that I used to systematically go around and hug trees when I was two, cancer’s one diseased tree that I would gladly chop down, if it were that easy. Hopefully, one day, a vaccine or medication will make it that easy. For now, my family and friends, who wield the axes and swords too, and I will just have to keep graduating to the next step.

Until the Danger Zone that is in every Children's Hospital in the country is eradicated.

Tomorrow would've been Heather's 17th Birthday...that is all the reason we need to keep hacking away at cancer.

Sunday, March 7th, 2010

Friday night, I went into Adrenal Crisis...but unlike last time, it didn't resolve itself. Usually, I can avoid crisis altogether by taking it easy while I'm sick and last time I had to take my Salu-Cortef shot, the injection averted any major crisis and I managed to stay away from the ER. But Friday, I had been tired and nauseous all day long and once it got into the evening, I was miserable. My stomach was upset and when Mom got home from work, I was going to ask her to take me down to Childrens for fluids and anti-nausea meds. I had a feeling it was the POTS making me feel so crappy so I figured if I just got rehydrated, I'd feel better. When Mom got home though, I promptly threw up, just before we were going to leave. As soon as I was done, I felt better but a few minutes later, I could feel an Adrenal Crisis coming on. So I did the emergency shot of steroids and we left the house but it soon became apparent that I was too far in the crisis to go all the way to Childrens. We went to a local hospital, where we learned my heart rate was 153. They immediately set me up with fuids, anti-nausea meds, and an EKG. After the first bolus, I was feeling a lot better and my heart rate was down to 120, which is still a little high for me, but my heart rate is always higher than the norm. I ended up just being discharged from the local hospital after a few hours.

I'm feeling better but extremely run down at the moment. I think my POTS caused this entire episode and I think, in turn, the Adrenal Crisis has aggravated my POTS. I've only gotten about 10 hours of sleep the last two days and I'm a lot more nauseous, tired, and my brain is just working a lot slower since Friday. I think this illustrates how urgent it is to get the POTS diagnosed, treated, and under control before it gets completely out of hand.

But I promise, as soon as I can organize my thoughts and feel like writing a longer post, I'll get to the leaves and what they represent for the month of March.

Thursday, March 4th, 2010

It only took about an hour to fix my laptop yesterday so here are the aforementioned and promised pictures...

Unbeknownst to me, February 10th of this year was also Florida Day at U of M...in honor of the trip they'd take the next day to Florida for the first games of the 2010 season!

After practice was over, we proceeded to eat some cookie cake, open presents, and catch up on what happened during the off season!

And I'd like to give a huge Thank You(!!)to my U of M Softball Sisters for another great birthday!

Then we flew(I still can't get over that...we FLEW)to Camp the following week, where we had a blast skating, snow shoeing, sleigh riding, and any other winter activity you can think of!

Including sledding...we were trying to break the Camp record and in a way, I think we did. In 'The Most Bruised' category.

This is Chris, Hailey, me, MP, and Emily...Sledding Survivors.

And this is Mom, Hilary, me, Lexie, and Robyn posing for one last minute picture Sunday morning!

It was an extremely awesome week and we had so much fun! The Spoons and Brooms took the stage again, Alec did a stand-up routine again, and of course, we did The Heather Hustle and it was by far the longest queue of people to ever dance to it!

Then we came home and got a new cat, Seamus. We're still having a few problems getting Karley adjusted to the change, but we'll see how it goes. We installed a lid on the guinea pig cage, so now at least we don't have to lift him out of the cage every five seconds when he's not locked in one of the bedrooms!

As most of you know, March was and is a very important month for me...and for a lot of good, not so good, and just plain horrible reasons. I'm changing my background today to represent that and I'll get around to explaining the choice in a few days.

Monday, March 1st, 2010

Sigh...well, my laptop decided to crap out on me again yesterday. Some funky thing is going on with the mouse and I have a feeling it has something to do with the fact that our new cat, Seamus, likes to walk all over it while I'm using it, getting hair, kitty litter, and goodness knows what else trapped in the keys. Hopefully, all it needs is a good cleaning out because I don't like sitting at the computer desk now that I have a more comfy alternative!

Since my laptop is indisposed at the moment, I also can't produce any of the promised pictures I mentioned last time. I'll get to that as soon as I have my laptop back and working.

I'm having a pretty good day today but this week overall hasn't been too swell. The last month or so, I've been drinking a lot of Gatorade(thanks to a tip from a friend from Camp who also suffers from POTS...thanks Hilary!)and that all but eradicated the palpitations I have in the mornings so I was getting a lot more quality sleep and so feeling much less fatigued. But, the last few days, I've been having them again and have been getting about six or seven hours of sleep a night total...plus an hour or two in the early afternoon. I think Mom made the appointment to see the POTS Specialist in Toledo today, hopefully she'll have more treatment options.

Seamus and Karley continue to avoid each other most of the time...but honestly, Seamus is more interested in the guinea pigs and hasn't been too bothered with Karley. Karley, on the other hand, seems to detest Seamus even though they've never really had any meaningful interaction. Nothing too dramatic has happened though, so hopefully Karley just needs time.

Because we're not giving Seamus up now...he fell off Mom's bed a grand total of six times today and, between that and his love of a good head of lettuce, he now qualifies as the misfit you need to be in order to be a part of our family.

Wednesday, February 24th, 2010

Well, this February has certainly been busy...but I've been enjoying this one much more than certain others of my past.

For instance, I had just bounced back from my first two surgeries in time for my 11th birthday...one to place my first shunt and one to replace my first shunt with my second shunt because my first shunt was infected by the first month after it was placed. I had not yet had my tumor removed and it was growing at this time six years ago.

In 2005, I was in sixth grade and struggling way more than necassary(in my opinion)with my teachers, principle, and classmates. This was the year that the truancy officer actually accused me of "exaggerating my symptoms" because "there was no medical documentation to excuse my absenses." Nevermind the fact that I had just had multiple sugeries in January and February of that year alone.

In 2006, I was still having about one surgery per month...but this particular February I had five surgeries in about 20 days, which also kept me in the hospital for my 13th Birthday. This is when I had that huge pseudocyst in my abdomen, which eventually resulted in the need for an LA Shunt.

2007 was both a better and worse year...I wasn't in the hospital but this was around the time when I really started to lose every single one of my friends from school. The headaches had let up a little at this point but I was getting these horrible stomach pains which were later determined to be a result of the steroids I'm on for Adrenal Insufficiency.

In February of 2008, I officially learned that I am in fact pidgeon toed(which, of course, I already knew)and that I also lean to the right because one of my legs is longer than the other(which we had never noticed before but now have no idea how we possibly could've missed it). I started to go to PT because my muscle tone and endurance was so poor. The Headache had become constant by now and my first year of high school was really sucking.

So, I'm glad that all of that is behind me now! The amount of surgeries I've been having lately are pretty sparse(only five, I think, in the last two years), The Headache is now gone, my schooling is in order, and, best thing of all, I have a huge group of people that I can really call friends now. You guys all know who you are and I can't tell you how much more special my life is with you now.

This month, February of 2010, I had another huge and fun birthday party with my softball sisters at U of M, I went to another amazing, fun, and life-changing week at Camp Sunshine(my first winter session), and yesterday, we got a new cat. Denise, the animal control officer who works at Mom's police department, always takes care of the guineas and Karley when we're gone. Well, when we went to Camp in October, she mentioned how she doesn't know how Karley stays so small when she eats so much! We all reacted with bemused surprise because Karley hardly ever eats! We never have to refill her food bowl because the food always gets stale before she eats it all. We always have to just replace all the food once a day-dump it out and pour in the new food. Karley seems to be like me...we eat the bare minimum and we are both doomed to be skinny. But Karley doesn't get yelled at for it...lucky.

So when Denise told us this, we came to the conclusion that poor Karley must get depressed when we're gone, and so she over eats to combat her loneliness. We've been thinking about getting another cat for a while, but when we got home from Camp this week and Denise again told us that, "Karley seems very angry when you're gone", it sort of sealed the deal and we went to the Humane Society yesterday.

We now have the orange striped Seamus with us in our home. Karley hasn't gotten used to him yet and is hiding in my bedroom but we hope to remedy that and start introducing them to each other today.

I'm not feeling that well today so I'll sign off for now, but I'll update soon with pictures from all the events mentioned above... and now Seamus is in fact pushing down my laptop lid so I'd better go NOW before he does shut it and effectively loses this update.

Wednesday, February 17th, 2010

Well, as most of you know, my birthday has come and gone...my laptop broke down so I couldn't update for a few days, so now I'm updating from Camp Sunshine!

It didn't take NEARLY as long as it usually does to get here...you may be flabbergasted to hear that we did not drive. We flew from Detroit to Boston yesterday morning(thankfully, no one made me go through the metal detectors again)and then today the Bartorelli's picked us up from the hotel we stayed at overnight and we drove to Camp the rest of the way.

So...the usual 16 hours was cut into about five.

I probably won't update much, if at all, during the week here but rest assured I'll have pictures and stories for you after we get home.

For now, we'll enjor our time with some of our best friends(truthfully, they are pretty much our family)at The Best Place in the World!

Sunday, January 31st, 2010

Yeah...my pessimistic prediction that as soon as I shook off the cold, my headache and POTS would come back full force unfortunately came true. I had a fever from the cold yesterday but today I woke up and the cold is pretty much gone...but my head is hurting pretty bad and the fatigue, nausea, and out of breath-ness that comes with the POTS is pretty bad today too.

Now, I'd like to reiterate how much better my headache since I underwent the Occipital Nerve Block...I don't have that excruciating and constant pain on the top of my head and it's a big relief, let me tell you!

Yet, the pressure headaches I get with bad weather are usually horrible in the winter, more so than any other time of year, and even though the headaches are substantially better, I am still in pain 24/7 and it's more than irksome...plus, knowing that last year, it wasn't till May that the effects of Winter and early Spring wore off and that I shouldn't expect to feel great until then is a bit disheartening.

Still, I'm excited to see how well I feel when this season of perpetual cold-fronts and low-fronts finally ends. Even with how bad my head is right now, I can differentiate between what it felt like two months ago and how it feels today...and I'd much rather take the headache that at least goes up and down in it's intensity than the headache that was so bad, I never even knew I was actually having two different types of headaches a lot of the time.

It's a little complicated but I feel like writing and I'd like for people to understand, so I'll try my best to lay it down in normal terms.

The Headache,(you know, the one I had for more than two years straight)was horrible on the good days and on the bad days...don't even make me relive it. It was on the top of my head and for the whole two years, it would steadily get worse every couple months...so really, it felt like someone was slowly bashing my head in for 26 months.

Now, sometimes(especially on cloudy, rainy, etc., days), The Headache seemed to spread down to the back of my head, down my neck, and also into my temples and forehead. The pain in the back and front of my head wavered and skipped a lot though, rather like the “striking” headaches I had during one of my ICP monitor placements a couple of years ago. Also, the rainy days were also the days I usually had to go to the ER for pain meds and I always noticed that while all the medications would take away the “striking” pain, it rarely made The Headache better enough to talk about.

The Headache was never-ending and constant, both in it’s intensity and duration and it was always about a seven out of ten…how bad my head hurt on a day to day basis depended on how bad the pressure headaches were.

So back to the present…this all makes sense now because since a defective nerve was causing The Headache, of course medications wouldn’t have made much difference, but I still felt better after medication because they took the pressure part of the pain away. Like I said before, the pain caused by my occipital nerve was so bad, I couldn’t even recognize that I was also having separate pressure headaches. I knew that the weather and barometric pressures made my head hurt way worse, but we really had no ideas why my head hurt on sunny days too.

Now I know that my occipital nerve was causing all the pain on the top of my head…the nerve was probably damaged in one of my earlier brain surgeries and every surgery since then just exacerbated the problem. Now the nerve has been deactivated and it can’t send any sensations to my brain, including pain.

As for the pressure headaches, we’ll have to keep searching for a cure for those too. I doubt I’ll ever be completely free of them, but I suspect that if we can treat the POTS accordingly(since POTS has strong roots in dehydration and fluid imbalances, which is also the problem with low pressure headaches), the barometric headaches would also get better.

We’re still in the process of setting up an appointment with the doctor in Toledo…first, I have to actually be diagnosed with POTS. While I’m pretty certain I have it, it’s not set in stone(or in ink)yet. We’ll probably do what’s called a Tilt-Table test(the only certain way to get a dx of POTS)here in Michigan and go from there.

But aside from all that, we’re certainly getting ourselves excited for our first Winter Session at Camp Sunshine! We won’t be driving(gasp)but taking a train(groan)to Camp and then we may fly home, if there’s any available seats. Plus, my birthday is in ten days and, like last year, I’ll be spending it with my softball sisters from U of M!

And unlike last year, I have thought ahead of time and have forbidden Mom from taking me out to eat because I know that she’ll be unable to resist the temptation of having a bunch of waiters come sing ‘Happy Birthday’ to me.

Thursday, January 28th, 2010

So, if you all did your job on Sunday, then you know what I'm talking about when I say that The Face of Courage: Kids living with Cancer was absolutely amazing. I couldn't tear my eyes away from it the entire time. Lexie, Emily, Alice, and the six other kids were incredible and whoever in the world watched it, I'm sure it hit home. I sure hope it did.

I really think this year is going to be big...maybe we won't find that cure this year, but I think we're in the middle of a reveloution. Almost seven years ago, when I was first diagnosed, I didn't know about Childhood Cancer. Even when told I had a cyst that had just exploded inside my brain, I wasn't aware of all the other kids out there. Now, I know there's an entire community of families dealing with cancer and brain tumors, even so called "benign" brain tumors. Now more people learn about it without having to hear the words, "Your child has cancer." Now we have a color - Gold. September is Childhood Cancer Awareness month and May is Brain Tumor Awareness month. All we need is for people to listen and it appears that they are starting to do so. I think this is just the beginning and something big is going to happen soon.

I think a lot of you can appreciate that, coming from me, this is saying a lot. It's been frequently put forth into evidence that I'm most certainly not the most optimistic person in the world but I have a good feeling about this year for everyone affected by pediatric brain tumors and other cancers.

In other news, I have a cold. It's a pretty minor one, for which I'm thankful, but it still sucks. I'm double dosing on Prednisone, drinking tons of gatorade, and eating salt right out of the shaker(okay, not really...I'm just adding liberal amounts to what little food I feel like eating). As long as I stay hydrated and keep my adrenaline supply up to par, I should be back to normal(my normal, that is)in a few days.

I felt horrible on Tuesday...my neck was hurting, along with my head and I was in tears, just hoping my shunt wasn't malfunctioning. But I'm okay now...actually, I rather think that if I didn't have a cold, today would've been one of my better days. So my head and the POTS is better today and hopefully, it won't start getting bad again just as the cold goes away.

But knowing my history and my luck, that's probably exactly what will happen!(See? Eternal Optimist, right?)

Saturday, January 23rd, 2010

I’ve been feeling really bad the last few days…just really tired and nauseous. The cloudy weather, of course, isn’t helping.

We got the results from my Endo appointment a couple days ago…I apologize for not informing you earlier but I wasn’t feeling well enough to update(as the results are sort of a doozy, in both a good and annoying way)and I forbade Mom from stealing my thunder.

The first(and least complicated)thing is…I DON’T NEED GROWTH HORMONE! Never, for the rest of my life, will I have to turn the annoying little dial, assemble the pen(okay, that part I kind of liked), enter new cartridges, screw the separate little needle caps on, enter in the dose, take the two different covers off the needle, pinch my skin, poke the needle in, and push the plunger of sting-causing medicine into my subcutaneous fat.

I know it wouldn’t really have been that bad because it would’ve been such a small dose but really, it’s just one less thing I’d have to do before bed and for that, I’m grateful and immensely relieved. My GH level was 129, which is on the low end of normal but it’s enough for the needs of my body now that I’m done growing(Yay for Five feet and Three inches!).

However, my weight is of great concern to Dr. Moltz and she really wants me to start packing on the pounds. At 5'3(and a third) but only weighing 90 pounds, I am well below the minimal 5ody mass index. She doesn’t want me to go on a appetite stimulant(yet)and I guess the only option that leaves is to seriously focus on calorie dense foods. I’m at a bit of a loss though because all the foods I already eat anyway are calorie dense and I always eat as soon as I’m hungry. I suppose a lot of ice cream, Carnation Instant Breakfast(vanilla), and mashed potatoes are in my future.

It seems that the positions of Alec and I have now been switched…Alec is now 5‘4 and weighs 120 pounds, which means he has achieved one of his lifelong goals…growing taller than me.

Also, my calcium levels were really low so I’m on a regimen of weekly vitamin D and twice daily calcium supplements. I‘m not sure if my calcium levels have ever been checked before and, if so, how low they were then but I suspect the Fludrocortisone and Prednisone together might have something to do with it, as they can both interfere with calcium absorption. Hopefully, the vitamins will help.

Lastly, my Thyroid was completely normal, to the everlasting surprise of Dr. Moltz. We have no idea why my thyroid is working, when every other hormone from the supraseller region of my pituitary gland was damaged either from the tumor or during the craniotomy, but who’s complaining?

Onto the really important stuff…I have a job for you all. Tomorrow, on the Nickelodeon channel, there is going to be a segment on Childhood Cancer called The Face of Courage: Kids living with Cancer. My one very simple request is that you watch it. It’s going to be on at eight o’ clock in the evening and it’s featuring seven kids and teens, including two kids from Camp Sunshine…one of them being Lexie! Lexie, Emily, and Alice worked so hard for the interview and they were followed around all week at Camp with cameras so I figure it’s the least we can do. Just a half hour television program…surely, it’s not too much to ask you to watch it?

I’m sure the only thing stopping everyone in the country…in the WORLD from watching this show would be the reasons we always hear when we all try to promote pediatric brain tumor and cancer awareness. That it’s too sad, it doesn’t happen that often, it’s too hard to contemplate.

Well, first of all, maybe it doesn’t happen as often as lung cancer or breast cancer, or heart disease or diabetes, but it happens enough…actually, it happens too much. Just because one in eight babies don’t have a chance of developing it and just because one in four of all teens don’t have a chance of dying from it, why are we less important? Why does the one kid in 364 deserve any less? Of course, I don’t mean we deserve it more than any other cause…my mom lost her mom and I lost my namesake, Nana Jean, a couple months before my birth to breast cancer and Nana Jean’s mother also died young because of the same disease. A cure for breast cancer would be amazing. I just wish Childhood Cancer was afforded equal opportunities to be researched and cured.

As for it being too sad and hard to watch…well, sticking your head in the sand won’t help anyone. It is sad that children get so sick and sometimes, even a lot of the time with certain cancers, die. It’s hard to contemplate so much pain and danger within such innocence. It will be hard to watch the seven young people who have to go through so much just trying to get their life back to normal but watching the Nickelodeon special will be the first step to helping them. It’s about awareness, then action, and hopefully soon, the atrophy of Childhood Cancer. Dwindling numbers of death, of lives taken away too soon…this is what we are fighting for and we need help from everyone…not just the people living through it.

Because we, as the society of people personally fighting kids cancer, have had this reality shoved down our throats with one MRI or one blood test that showed the wrong results. We, as the patients, have had this pain pushed through our veins, cut into our skin, and it‘s invaded our bodies. My brothers and sister have had it wedged into their minds and memories and it sent their emotions, their LIVES on a wild and unpredictable roller-coaster. The fear, uncertainty, and helplessness clutched itself around my parent’s hearts and will never entirely leave for the rest of their lives.

We didn’t have the option of ignoring it so we did everything we could to fight for my cure. Now, we’ve banded with all the families we know who are up against the same thing we are and all of us together are trying to find every child a cure. But in order for us to be heard, everyone else has to listen.

But you have to choose to listen, even if you’re scared. Shying away won’t protect anyone...but listening and then doing something will help everyone.

So there you are. This might seem like a complicated and long-winded journal entry but the one thing I want you to take away from it is exceedingly simple: Watch the show tomorrow night, January 24th, 2010 at eight pm, eastern time.

And by extension, become more aware about the number one killer of children under 20. But instead of just focusing on the statistics, watch the show and be compelled and inspired by some of the bravest and most amazing kids I can think of.

Friday, January 15th, 2010

First of all, a very Happy Birthday to Lily Langbein, a very dear(and cute)friend from Camp Sunshine! She turned six today and she and her parents, Olivia and Dennis, are just amazing people. Lily's link is above so you can click on it and wish her a happy birthday too!

(This was during the weekend of the '09 Pumpkin Fest!)

I've been feeling a lot better the last few days. We went to see Dr. Moltz on Monday(it was rescheduled)and yes, this was The Visit of Truth. She ordered a growth hormone test to see how that level is. Even though I'm mostly done growing, adults need GH too because it also affects bone health and muscle mass.

We're not sure if I'll need an adult dose of GH because even when I tested back in February of 2005, I still had SOME growth hormone, but it was low and not enough for the growing I needed to do. Now it all depends on if my pituitary gland is still making that little bit of GH and whether that amount would be enough for my body as an adult.

Obviously, I'm really hoping I don't need it. I don't mind the Desmo one bit because, A.) I really feel it when I need it and taking it makes me feel better, B.) It doesn't sting, and C.) It doesn't affect my skin or the fat underneath it.

Whereas the GH, A.) I don't feel different off of it than I did on it...other than the tedium of having to do it every night when I don't feel like it, B.) It really stings horribly and finding a spot to put the needle in is hard because I'm so skinny, and C.) GH actually dissolves fat if you use a certain spot too much so I have to change injection sites a lot, when I don't have a lot to choose from first off(see reason B).

But if I did need it, it would be a very small dose so that makes the proposition seem better. We'll see.

On Tuesday, I had a pain management appointment with Dr. Glowacki and it went really well. The Headache, the one on the top of my head that I had for over two years straight, is completely gone and I told him my overall headaches are about 70 percent reduced. All that's left are the barometric headaches and because it's winter, I haven't been completely free of a headache yet but, frankly, I can't wait till Spring and till the weather clears up because I think I'll be feeling absolutely great.

The Occipital Block is expected to last at least six months so I'll just go back to the pain clinic when it wears off. As we've mentioned, after a few more blocks, we are hoping that the Occipital Nerve will just deactivate permanently and then I wouldn't even need any blocks after that.

All that remains now is the POTS. It's really causing a lot of problems, the most debilitating being the fatigue. On the relatively rare days that I'm not tired, I feel fantastic...regardless of how bad my head is hurting. The tiredness is really a lot harder to overcome then the headaches and I think if we could get the POTS as under control as it was last summer, I would feel perfect.

We're hoping to get an appointment with a really good cardiologist who specializes in POTS that practices in Toledo. The problem is, the waiting list to see him is 6 to 8 months! Instead of waiting that long, we are making an appointment with a nurse practitioner that works with him(his name is Dr. Grubb, by the way), whose waiting list is only one to two months. We'll also make the appointment to see Dr. Grubb but this way, we'll at least be able to see someone in the meantime.

Well, it's been a long update and that's about all that's going on medical wise. This weekend, Alec has the End-of-the-Season dinner with his FOJ team and Mom and I are going to an FOJ adoption of a local boy named Johnny(visit/johnmuller)and his brother Aiden. They're being adopted by the Plymouth Whalers(a semi-pro hockey team)and it's going to be a community wide thing, I think!

Before I sign off, I would also like to ask you to go to Bridget's(visit/bridgetsweeney)page and let her family know you're thinking of them and please say a prayer for them too. Bridget passed away early yesterday morning, at the age of eleven.

One more child, one more reason to do everything we can to find a cure.

Sunday, January 10th, 2010

I've been feeling pretty crappy the last few days...turns out I didn't have a cold but it was just allergies, which I'm thankful for, because a cold combined with the pressure fronts that have been coming through Michigan would have had me completely miserable. As it is, I've been spending most of the day in my room with my new laptop...and Krazy Karley.

This week's going to be a doozy...on Tuesday I have an Endo appointment, school, a pain appointment, and a cardiology appointment PLUS I have to go to the library to pick up a book on GED for the school. Of course, normally, I'd have absolutely no problem going to the library for any reason but that's a lot of stuff to have to do all in one day. I think I'm going to cancel the cardio appointment though because it won't do me much good at this point and right now, we're actually trying to see about getting in with a POTS specialist instead of a normal cardiologist.

That's all that's going on for now...until I have more to report, here are some pictures from my trip to Boston!

This is Emily and I at a restuarant in P-town.

Nancy, Emily, Angela, me, Danny, and Lexie...tired out from all the vicious card playing but way happy that we got to visit!

During the Cookie Party with Annie, Kristen, and Robyn.

Lexie, Justin, Chris, Luke, Emily, and I at Donna's farm.

Standing around Sydni, who is garbed in her awesome and very impressive knight's armor!

This is Lexie's and my official Midnight 2010 photo! After the ball dropped, we stayed awake long enough to take this picture then turn off the light.

Lexie, Emily, and I the morning I had to leave to go back to Detroit.

Wednesday, January 6th, 2010

Today I had school and that went pretty well...Mrs. Baker wants me to check some GED practice books out of the library so I'll be gearing up for it in the next couple of months. I'm not sure when I'll be taking it but probably in late March/early April.

The plane ride to Boston on the 26th wasn't too bad...however, on account of the little incident with that guy who let off some incendiary device just the day before at Metro, the security was fairly amped up. I got through security okay and this time, no one decided to escort me through the metal detector, just to see what happened.

I still don't see what the problem was back in March...and as you can probably tell, I'm still a little ticked about it.

Anyway, I found Nancy, Emily, and Lexie in the baggage claim area okay and we drove to their home in Lakeville.

Which included Emily taping us with her new video camera and ordering us to "say something funny" and her rapping to songs on the radio while she waited for us to think of something witty.

The first few days I was there, we had something planned everyday and it was quite busy. Mom came to Boston to join us(it was supposed to be a surprise but if you all recall what a fiasco my birthday was last year, you'll be able to guess how well THAT went)early Monday, at about one in the morning. Monday we went out to eat with some of the Williams friends and on the way home Alice kept tantalizing us with hints about a surprise that would be revealed later that day…I had hoped to badger Mom into accidentally letting it slip but she told us that she hadn’t been trusted with the secret.

So we had to wait. Oh sure, we tried to eavesdrop on Alice’s phone conversations and everything but that didn’t yield many results. Finally, we hear a car pull into the drive so we all catapulted over furniture and ran to the door to see who Alice was welcoming.

It was Danny and Angela Lam! The parents of sweet Devon and we were so excited to see them. A little while later, Kris Herman pulled up as well and between all of us, we(the kids)were able to torture everyone with a couple mind games and then we played a wicked(can you tell I was in Boston now?)round of Spoons and other fun card games.

On Tuesday, in the early afternoon, Kristen and Robyn(from Camp)and Annie came over for a Cookie Party…I think the “cookie” part had to be a ruse, because their house was chock-a-block full of cookies before the party! At about four, we left for Donna’s farm. Emily and Chris were knighted for the Magical Moon Foundation that night and, apart from it being quite crowded and a little hectic, it was a great night and we were able to visit with a lot of friends! There were a lots of laughter and a lot of tears(although some were not joyful tears, mostly the little kids who didn’t understand how a Yankee Swap worked).

Wednesday we went to visit with some relatives(theirs obviously, not mine)and Emily drank a lot of strong coffee…I was expecting her to go crazy on us but apparently she’s a old novice. She did talk a lot on the way to drop Mom off at the airport though and we all had our heads in our hands and a glazed look in our eyes by the time her buzz wore off.

So Mom went home and I was to follow her later on in the week. On Thursday, Lexie, Alice, and I went to see a dear friend of Lexie’s from clinic. Bridget had just been placed on hospice and is at home with her family now. I’m glad I got to meet her and her amazing family…Bridget was as peaceful as can be and I can’t really describe the clash of feeling I think we all felt on the drive home.

And of course, Thursday was New Years Eve so while Em went to stay with some friends, Lexie and I stayed up till midnight and hailed in the new decade by promptly going to sleep right after the ball dropped.

Friday, we went to see Lexie and Emily’s grandma, as it was her birthday and we pitted ourselves against the Buckeyes and the Gators in the football games we watched.

On Saturday, I got to see Lexie swim in one of her meets and I can’t believe how fast and far she swims! When you factor in what she and her body have been through, it’s just amazing.

Sunday, sadly, was the day I had to leave. Lexie and Alice had to go to another swim meet so I said goodbye to them and Emily had to stay home with some schoolwork as well, so Nancy took me to the airport, where I got through security without any hitches once again. The plane was delayed a rather long time due to ice and the like but once we got going, the ride was pretty boring.

Then I got home and went to bed and now I have caught a cold from Mom…I knew I should have stayed in Massachusetts!

P.S. I’ll post pictures in the next update.

Love, Sammi

Monday, January 4th, 2010

Hello everyone...this is Sammi finally writing again. I know it's been a long time, partly because Mom's computer sort of crapped out and partly because, honestly, I didn't feel like I had anything new to write.

After I was admitted into the hospital for pain management back in August, I had been really down...except for when I was spending time with my sisters down at U of M, at The Magical Moon Foundation with Donna, with Camp friends at the Pumpkin Fest, or when we went to Camp Sunshine in October.

After almost two years of non-stop pain and horrible fatigue, I was kind of getting used to it...or rather, I was learning how to pick and choose my battles. As soon as the headache let up a little, or if I woke up one day and wasn't so tired, I seized the chance and went out to the mall with Mom and Alec, or at least got up off the couch and decorated my room or maybe played a board game with them. Basically, there were four categories.

On the great days, I felt good enough to get dressed and go out to eat, go to the park, or maybe even walk around Greenfield Village for a little while. I only had the regular headache and some minor palpitations in the morning.

On the good days, I could do stuff around the house...clean, play with the guinea pigs, or play games at the kitchen table. My muscles felt week and my head hurt of course, so I couldn't get outside and walk but I felt okay.

On the regular days, I'd lay on the couch and watch Alec play video games, sing along with my iPod, and I wasn't too grumpy and would smile and laugh. I was really tired and dizzy and my head hurt moderately bad but I could function.

However, on the bad days, I was so dizzy, I couldn't even brush my teeth and ran the danger of bumping into walls-hard. These are usually the cloudy and rainy days so my head hurt horribly and all I could do was lay on the couch or listen to my iPod softly. My vision would be blurry and I would have to take a lot of naps or just rest my eyes.

But there would also be the days when my head hurt so bad, I had to go to the hospital for medication.

Last May though, that all pretty much went away and I couldn't believe how much I could do. My muscle tone was still low after all that time but I could run, shout, walk distances, and the POTS basically went away. I wasn't having any pressure headaches so my head was only about a six out of ten.

Literally overnight though, it all came crashing back and when the doctors couldn't figure out why and they didn't have any new ideas, it was hard. I figured for the rest of my life, I'd only have a couple of good months for every two years and it would keep getting worse regardless. ..and that would be all I’d be able to ever report here.

In November, when I had my 38th surgery, Mom made an appointment with a new doctor, Dr. Glowacki, she had read about in the paper a few months ago. When I got out of the hospital, I went to that appointment and within minutes of an intern walking in the room, she said Dr. Glowacki might want to do a procedure called an Occipital Nerve block because the pain had always been on the top of my head and deadening that nerve would make it go away, if it was indeed the nerve acting up and causing the pain.

It was quite simple really...he did the procedure that very night and it helped immediately. The headache that had been going on for more than two years straight had actually disappeared just like that!

And, well, Mom has updated about the rest. Dr. Glowacki did the block one more time to make sure it was really the Occipital Nerve that was the problem and sure enough, it worked again. So he performed a radio-wave based block of the nerve that should last at least six months, maybe even more.

Now, I can see how much the nerve headache(as I now know it was)was the thing really causing most of the head pain. I still haven’t had a headache-free moment yet, because it’s winter and we’ve been getting one cold-front after another, but the pressure related headache goes up and down and is usually between a 4 and 7. Sometimes, it goes down to a 2 or 3!

I still have the POTS pretty bad and I want to make an appointment to see a specialist for that soon, so I’m not so tired and dizzy all the time.

Well, now that I’m feeling better and I have a working computer, I’ll probably update a lot more often! I just spent a GREAT eight days with the Williams family and got to see a lot of my Camp friends so I’ll update about that with pictures next time!

Love, Sammi

Sunday, December 13, 2009 10:08 AM CST

Sam is going to see the pain specialist Friday morning to do the radio wave thingy where he zaps her occipital nerves and hopefully removes about 80f her headaches. She's super excited about going to Boston for a week, leaving the day after Christmas. Lots of fun will be involved, seeing the Williams', The Bartorelli's, the Magical Moon Foundation and I'm sure lots of other stuff.

Our computer at home is kinda kaput, so I am updating at work. Hopefully she can update soon. Hers are much more entertaining than mine. Love to all, Ellen, Sammi, Alec, Caitlin and Nikolaas. Oh and Krazy Karley sends her love too!

Sunday, November 22, 2009 4:49 PM CST

Sam came home on Friday, not feeling better as usual. But we have an appointment Monday morning at a pain clinic. All they do is pain. Hopefully they will be able to give us some hope. Sam has none, I have a bit. It's no way for her to live.

The MRI showed she does have a 2mm cyst in her pituitary gland, I haven't been able to figure out yet if it's in the same spot or a different one. They say it's not big enough to cause her headaches. Ugh!

Monday, November 16, 2009 3:38 PM CST

I know Sam hasn't updated in a long time but not much has changed. She still feels pretty cruddy and in fact is in the hospital for pain control. Hopefully she will feel like updating soon and regaling you with the goofiness that seems to follow her mother around like the plague.

Sunday, September 27, 2009 4:12 AM CDT

Well, Sam's been feeling on and off crappy, more on unfortunately. But on Monday, we are going to Chili's on Plymouth Rd, west of Middlebelt. Every September they pick a date to donate all their proceeds to St Jude. We are going to be there at 6:30pm. We'd be happy to meet you there!!!!

We have a softball game this week on Thursday and a soccer game on Wednesday. Possibly a Tiger game on Thursday also. Busy, but it's all good. School for Sam on Wed and Thursday. I'm working some overtime tonight but it's cool because now I'm taking Monday off.

Take care all and hope to see you on Monday!!!

Monday, September 21, 2009 7:32 PM CDT

Sam spent the weekend in Traverse City with her dad and her softball team. She had a great time, the team did really well. But the weather has been wreaking havoc with her head and she's not remotely feeling well. But she's hanging in there, doing her homework. She has school tomorrow morning I think. And we're going to get our flu shots tomorrow too. Wednesday is a soccer game, I'm leaving work early and we're heading west.

About 2 weeks til Camp Sunshine. I have to admit, we really need to go. The last couple of weeks have been really stressful and Camp Sunshine will make that all go away. Sam and Emily are working on a rap and Alec I'm sure will come up with another comedy skit. This time I will video tape it.

Please pray for all our friends who are suffering. Some have the flu on top of all the cancer crap. Some are dying. Some are waiting and living. Some are stuck in places no people should be stuck in. It all pretty much sux.

Tuesday, September 15th, 2009

I felt well enough to go to school both days last week but since I got home on Sunday(I went to Luke and Lily's for the weekend), I've been feeling just extremely tired and for some reason, I've been getting a horrible pressure headache around seven AM every morning, no matter which position my head is in. I'm not sure what's up with that but I really don't feel like having to go into Neurosurgery and getting the usual 25 X-rays and maybe a blood draw, shunt tap, or medos valve changing and then having to get 25 X-rays all over again to see if it changed right...all just so the nurses can tell me nothing wrong can be seen in the test results and if I am still feeling bad in a few days, how about I come down again to repeat the whole thing over again?

Yeah, no thanks. I guess if it starts to interfere with school, then fine, I'll drag my butt off the couch but otherwise I'd rather not.

Mom and I met with my teacher to discuss our goals for this year, and she said that as far as she was concerned, I could take the GED test today and pass it. However, since I'm only 16, we'll just wait until maybe late March or early April. I was confused because, if you really think about it, I'm only at a sixth grade level in most subjects, especially Math. I would obviously be fine in any writing or reading parts of the test but if they asked me about how the fall of the Roman Empire came about or ANYTHING to do with Math, I probably wouldn't be able to answer. But Mrs. Baker says you only need about a sixth grade education to pass the GED.

That concerns me, because if sixth graders were ready to live on their own and go to college, then it wouldn't be illegal for kids to drop out before they're sixteen. I want to be challenged a bit and I want to be ready for college when I get the piece of paper declaring I passed High School. I know I won't be able to get into any big time colleges at first because I don't have any grades from High School to show anyone but I don't want this to affect my choices in any other way. It would really suck that just because I was in a public school system that, well...sucked and didn't understand when I got sick to impact my adult life in such a big(and unfair)way. I couldn't control it and I shouldn't have to shoulder any consequences that the old school system brought about.

But everyone assures me that it'll all be fine, so hopefully it will.

Speaking of cancer and brain tumors and unfairness, September is Childhood Cancer Awareness month! If we raise the public's knowledge and awareness of all these diseases that make up pediatric cancer, then no kid or teenager would have to deal with any of these issues. Post fliers, tell people about it, and/or(but preferably "and")write about it and put it on your website, even write a letter to the government. Anything to help can go a long way! The apartment comlex we live has in fact sort of jumped at the idea of some sort of fundraiser to raise awareness and we'll probably be doing something along those lines soon. I'll tell you about it when we have details.

This update is so long because it's both been so long and might be a long time again before I update. I'm going with dad and Alec up north to Traverse City for a Softball game with U of M this weekend. I've been devoid of a good softball game for way too long, so I can't wait!

Here's a picture from the Softball-Lakeside-Party before I sign off for now.

Monday, September 7th, 2009

Sorry for the serious lapse in updates. I just haven't felt like writing out an update.

I think it's because, while I'm feeling better than I was a month ago when I pretty much crashed, I'm still not feeling as great as I was before The Headache came back full-force. I'm sick of only having the subject of how crappy, tired, nauseous, dizzy, pained, out of breath, and sick of all this I feel to write about...once again. I'm angry because it ALL started up again so suddenly, so idiopathically and there was no warning and no way I could've prevented it. That means there's no way to predict it or stop it in the future and that also scares me.

Will it hit again this weekend when I go to Chicago for a concert? Right before Christmas? How about the day I go to take my GED test or the weeks before I start college next fall? There's no way to know the why, what for, how come, and when. It makes things hard to plan...I do plan things but I always worry if I'll be able to make it.

But anyway, the last few weeks have been quite busy...I went to Chicago like I said and that was fun even though(like I said)I wasn't feeling well.

Simonne was in the hospital for a kind of Pre-School Tune Up and we went to visit her which was so much fun!

I think you've all seen this picture before...just from different years and shorter heights!

I also went to Massachusettes two weeks ago because I was invited to be a part of the Magical Moon Foundation and become a special knight, one of the Knights of the Round Table. It really was spectacular and so magical there...you could really feel it. Donna Green, the woman who started the foundation, is SO nice and wonderful! I was able to meet up with Lexie and Emily and also with the Roncos and the Lanosa-Bards and we all had a bunch of fun together. I put most of my pictures from the weekend on Facebook, but I'll put a few on here too.

This is Mom and I with our pilot, Barry. Right next to the plane we flew in! We had to take six planes in total.

This is me inside the plane.

This is a picture of Sir Lexie, the Legend of Love, Sir Luke the Lovable, and me, Sir Sammi the Thriving Survivor in our knight tunics outside of the Round Table!

After we had to leave Donna's farm, we went to stay at the Williams house for the rest of our stay and it was extremely cool. The Bartorellis came over, along with Kris(Friends of Jaclyn Extraordinaire) and Robyn(a counselor from Camp)! All us kids(and once in a while, an adult would try but would find it too violent and too fast)played Spoons almost all night!

The next day, Alice, Lexie, and Emily took us on a tour of their favorite vacation spot, P-town! It was a really nice town and I can see why they like staying there!

This is Lexie, Emily, and I standing in front of the plane that would take us to the plane that would take us to another plane that would finally take us home!

It was a fantastic weekend and I had a wonderful time! Much thanks to Donna Green and the Williams for housing us for the weekend and for making the whole time so special and for making it so...indescribable!

I also went to a party for the U of M Softball team this past Thursday and it was great to see all of my Softball Sisters again! I'll post pictures of that sometime tomorrow most probably. We're getting a lot of storms this week and it's starting to affect me even now, so we'll see how I feel.

Tuesday, September 1, 2009 7:00 PM CDT

We had a great weekend in Massachusetts. Sam is now officially a Knight of the Round Table of the Magical Moon Foundation. Sir Sammi, the Thriving Survivor. We had great flights from the Angels flights of Mid Atlantic, awesome hospitality from Donna Green and her neighbors and friends in Marshfield, Mass, and we spent 2 nights with Alice, Nancy, Emily and Lexie at their house. Chris, Aleesha, Mike and Marianne came to visit, Robyn from Camp Sunshine, Kris Herman, FOJ volunteer extraordinaire and softball coach at Williams college and one of her new assistants, Joey. It was so much fun. The "kids" played spoons all night, laughing and having a great time. I'll let Sam explain more about the Magical Moon Foundation happenings and we have lots of photos to share.

Since we got home she hasn't been feeling well. I'm not sure if it's the stress of Lexie's issues or all the flying we did or what. I hope she'll feel up to updating soon. She's much more eloquent than I am. Thank you everyone for everything!!!

Wednesday, August 26th, 2009

Well, I've been feeling pretty good(I could even use the word 'great'!)again this week, so hopefully my brain is settling down for another four months(or longer)!

Alec, on the other hand, is being adopted by a team! Kris Herman and FOJ's program, Safe on the Sidelines, has connected him with the U of M Men's Soccer Team! We're going to meet them today at about 12:00pm and there's a game today too.

I'll be sure to take lots of pictures!

Thursday, August 20th, 2009

Sorry about the lapse in updates but I just haven't felt up to writing out an entry...it just sucks having to write again about nothing but how crappy I feel all the time.

We had fun in Chicago but we didn't do much...I just couldn't keep up. Something's definitely very different because at Camp Sunshine I was running around and shouting at people(not to scold, mind you, I just want to make the point that I had enough breath to actually yell)and I felt fine doing all those things. Now, once again, I barely have the energy to get out of bed in the morning and when I do, it takes hours for me to summon the inclination and get ready to go anywhere. Mom's making an appointment to see the Neurologist we saw back in January and March and see if she has any suggestions...since she was the one who confirmed my suspicion that I had POTS in the first place, she might be the doctor that can help.

Before I go, I'd like to ask for some prayers for some of my friends. Lexie just received some bad news in her latest MRI and her,her sister, Emily, and her moms could use some support.

Simonne is also in the hospital this week to get her healthy for school...please pray that she can get out of there as soon as possible and that she can stay out of there for as long as possible!

Also, today is the five month anniversary of Heather's passing and I'm sure Beth and Bill, her parents, would really appreciate some messages and prayers.

Thursday, August 13th, 2009

I don't know if, during all the kerfuffle of last week, Mom mentioned that we are going to Chicago tomorrow...

Well, we are! We're going to visit Nik and of course, see the sights that we've seen so many times but can never get enough of.

Tomorrow night, we have plans to go to the our favorite haunt, the Rainforest Cafe, with Nik and Rachel(Caitlin, ironically, will be in Michigan). I am dead determined on getting my traditional Photo Booth picture at the Cafe even though it's going to be practically three adults trying to squeeze in...even if it's going to be three extremely skinny adults. Nik is really tall but almost emaciatingly skinny. Rachel is on the short and petite side and then of course, there's me...really, I'm not too fussed.

I'll have my Photo Booth Photo!

Then on Saturday, I think we're going to the Aquarium...apparently they have some new pregnant Beluga whales and Mom really wants to go see them. But really, I think Mom just likes aquariums because fish are the opposite of birds and Mom has a deathly fear of anything feathery that flies.

You should have heard her the time our parakeet, Milton, flew up the stairs just as she was coming down them and flapped all around in her face.

Anyway, then we're coming home on Sunday and I'll either update then or on Monday to tell all about the trip!

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Wednesday, August 12th, 2009

Well, two Saturdays ago, I started feeling tired...we called Dr. Moltz and she agreed, albeit reluctantly, to let me take another dose of Prednisone and Fludrocortisone. After a couple hours, I started to feel better so I thought I was just having a bad day and my Feeling Great Era would continue the next day.

Not so.

I felt like crap all day and Mom ended up taking me to the ER. They gave me a bolus of saline and a dose of Dalaudid and sent me home. I felt okay on Monday...really tired but once again, I wasn't really fazed and had no reason to think anything was really going on.

There was.

On Tuesday, I was taken to the ER yet again because my palpitations had flared up again for the first time in almost four months and had woken me up at the grand old time of four thirty AM. I had a headache and was very fatigued. By the time I got home from the hospital at two thirty AM, I had been up for 22 hours and was unbelievably tired and frustrated. I toughed it out(well, actually, since I slept till three, I guess I sorta slept it out)through Wednesday and on Thursday, for the first time since April, Mom and I went down to the Neuro clinic. Since they had done a complete shunt series on Tuesday and everything was intact and functioning, the only thing they could do was put me back on Vicodin. I can't tell you how much I hate having to take that stuff again, even though I was initially nervous about having to go off it in April.

On Friday, I went back to the ER once again...this time they admitted me. I was in the hospital for four days while Neurosurgery, Neurology, and Cardiology all came, looked at me, and basically shrugged their shoulders. Neurosurgery felt they couldn't do anything because nothing was wrong with the shunt. Neurology decided I had Migraines without ever coming down to look at me and it was only after I asked my nurse to ask them to come down and actually meet me that they saw that I wasn't having any ordinary migraines. They said I should try Topamax...

NEUROLOGIST - Let's try you on Topamax.

ME - I've already tried it.

NEUROLOGIST - Why didn't it work?

ME - It did but I lost too much weight on it.

NEUROLOGIST - Well, let's try it again. On a smaller dose.

ME - I actually have tried it twice-the second time, it WAS on a smaller dose but it didn't do anything.

NEUROLOGIST - Well, let's just see what happens.

Do you see a pattern? This is the part where I shoot myself in the foot...except I'm already in the hospital...crap...

Anyway, back to what I was getting at. After Neurology had their bit, Cardiology came and said that actually Topamax was a Beta Blocker and might help the POTS, which is probably the root of everything...WHICH WAS WHAT WE WERE TRYING TO TELL EVERYONE THAT CAME IN MY ROOM IN THE FIRST PLACE!!

So yeah, all in all, I'm extremely frustrated and disheartened and just not feeling very perky(emotionally or physically).

Monday at the hospital, Mom said to me, "You know, it's like you've recurred."

I started at that, because it was exactly what I had been thinking all week. It's like the headaches have been the real cancer all along. I had them on and off from 2003 to 2006 then the real problems began when I started having them nonstop since July of 2007. Then I was in remission for three and a half blissful months. Now it feels like I've relapsed or something.

Hopefully, I'll go back into remission again soon.

Sunday, August 9, 2009 8:01 PM CDT

Sam is still here. They've added a new med, Topamax, which she's been on before but we are willing to try again. Its a beta blocker which should help the POTS which I believe is causing all these problems. So we will see, should be going home tomorrow.

Saturday, August 8, 2009 6:10 AM CDT

Sam was admitted last night, she texted me at about 1:30 am. Not sure what the plan is or anything, I'll update later when I find out.

Thursday, August 6, 2009 6:54 PM CDT

I took Sam down to Neurosurg today. They wanted clearance from endo before they make any decisions. They said they don't think it's a problem with her shunt setting, it wouldn't happen so suddenly. They gave her a script for vicodin, which I'm kind of disappointed about since she "kicked" her vidodin habit months ago. But she will need it get through the weekend. As I was standing in line to get the meds, her endo called. Turns out they had written down the wrong number, she tried to call me yesterday, which I totally believe, she is very reliable. So anywho, she said since Sam's electrolytes have been normal and her meds are all where they should be, she's clear as far as endo is concerned. So I'll call ns tomorrow and let them know and see where we go from here. We are going to Chicago next Friday for the weekend to see Nikolaas so we need to have her feeling better by then. We are going to have fun. We miss Nik.

Tuesday, August 4, 2009 6:35 PM CDT

Well, it looks like something that is not good is going on with Sam. Not sure if it's her shunt or something else. I took her to the ER on Sunday for a bad headache. They gave her fluids and some Dilaudid and it helped. However today, she's complaining of horrible headache, bad palpitations etc. Just like how she's felt for the past 4 years. We have a call into endo but this is very disheartening. She's been doing soooo well. Hopefully this is just something funky.

Please pray that this goes away or that they can fix it quick. We have a lot of plans this month, this year, this life. We've had enough crap, it's time for life.

Saturday, August 1st, 2009

Today the POTS flared up and I was feeling pretty woebegone but Mom called Dr. Moltz and she said I should take a Prednisone and a Fludrocortisone and also drink water and eat as much salty stuff as I wanted. Well, I was happy to hear that, considering I like to eat salt right out of the shaker but Mom always yells at me when I do that.

Now I can do it and blame it on the doctor! But it's been about three hours and I'm feeling a lot better so I thought I'd update...I don't really feel up to updating about the last day of Camp and the trip home but I will as soon as I DO feel up to it. A lot of good, meaningful, and cool things happened on the way home so I will definitely tell you about it in due time.

Until then, feel free to examine my new layout and look at the new pictures in the photo album!

Thursday, July 30th, 2009

On the third day of Camp, we did all the usuals(Newcomb, Spoons, Foosball, all that fun stuff)...although, I must admit, Spoons wasn't nearly as brutal and therefore, fun, this year without everyone who played it last year!

That night it was the Talent Show! I didn't do a poem this year but rather a sort of Comedic/Wry account of how having a crazy family can help get you through the craziest times and trials. Even Alec got up on stage and had most of us in tears...of laughter, that is.

Also, you may recall the W F R/K Story about the infamous Lexie/Sammi POP/POOP story...Lexie and I did a skit based off that fateful conversation and it was extremely successful!

On the fourth day, we took advantage of the afternoon free period to hold a memorial for Devon, Heather, Russel, Sarah, and Erin.

This is the rock Mom and Alec made for Devon.

This is the rock that I painted for Heather.

I read my grieving poem and Lexie read a poem that was written for Kyle at the memorial. After that, some things were said and the one thing that was said a lot was how important Camp Sunshine was to all the friends we lost this year, especially last year, and how much just one session meant to them. It's completely true...I know from experience what Camp Sunshine does for you and how much just six days there can do for you. Last year especially was just magical and Wednesday at Camp really showed how much of an impact it had on everyone present, whether in spirit or body.

After the memorial, all of us kids/teens(Alec, Keegan, Blueberry, Jim, Chris, Aleesha, Lexie, Emily, and I)decided to go up to the Teen Game room and compose ourselves...because doesn't it just figure that all of us were due for our pictures a half hour after we were all bawling our eyes out?

Some of the people that were there last year but hadn't gone to the memorial service followed us up there and for a few minutes, we just sat there, silently(or not so much)crying. Then some adults came up to see how we were doing and one of them remarked, "Now, Heather would be as mad as heck, seeing you all like this."

A couple seconds after that, Chris suggested we play a game of Spoons in Heather's honor. We all agreed, albeit halfheartedly. The first game, we played rather slowly and somberly but by the fifth or so game, we were playing Spoons the right way...quickly, laughing, grabbing and inadvertently scratching, and all that. I'll tell you, a violent game of Spoons can make you feel better(at least for the moment)about anything.

As we went down for our pictures, we got the idea to all hold up a decorated spoon for them!

So if you were to look at the family portraits for Oncology Week of '09, you would see no less than seven kids and one adult holding up a spoon.

And for the life of them, most people couldn't figure out why!

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Wednesday, July 29th, 2009

The second day of Camp comprised of all the usual components of a second day at Camp.

We all got the chance to reacquaint with some old friends from last year and meet the people who would become our new friends this year.

The Teens and The Adults also partook in the traditional Super Dooper Bloopers, which includes games like the one above, where you try to make the tallest pile possible out of everyone's shoes.

Monday at Camp also happened to be the day that I horribly sprang my finger playing Newcomb. The volleyball landed directly on top of my middle finger and the swelling that accompanied the blow assured that I wouldn't be able to use it for anything, polite or otherwise. I thought for a minute that I had actually broken it, because it was numb, and was like, "Oh great, now I have to use my emergency SaluCortef shot for the first time ever at Camp Sunshine."

But it turned out fine...well, in any case, it was not broken. I thoroughly enjoyed freaking everyone out by how bruised it was though.

After dinner, Lexie and I started getting ready for The Masquerade Dance. We had decided quite a few months ago what we were going to do, and it worked out perfectly!

This is Lexie working on her shirt with the Spoons kit that Candy and Carol gave me for my Five-Year Anniversary!

This is the finished product! On the front they say 'I am Fluent in LexSamish' and on the back they said 'Yeppers!', our favorite LexSamish word. You see, Lexie and I made up a language that we like to use when we're texting. Basically, to speak LexSamish, all you have to do is add an "ers" to any word of your choosing.

For instance, "How was your swimming lesson?" becomes "Howers wasers yourers swimmingers lessoners?". If you want to make it simpler, just say "How was your swimmingers lessoners?" and just add "ers" to the funny sounding words.

Well, now that you've all had a lesson in the language of LexSamish and now that I've recorded pretty much all that went on on the second day of Camp...I'll leave you all to it.

Look for more tomorrow!

Wednesday, July 29th, 2009

Monday, July 27th, 2009

Before I start in on our second part of the trip to Camp Sunshine, let me introduce you to the newest addition to our family!

This is Krazy Karley! I'll tell more about her story and how we came to pick her after I finish my Sunshine Saga. But we did get her from the Michigan Humane Society and she's such a sweetie! A needy sweetie, but that's how we like our cats around here.

Anyways, for Sunday, I wrote down the following log.

SUNDAY

9:14 am: We left the hotel.

9:52 am: We get into Massachusetts and start canvasing the highway for Lexie's car, in the off chance we drive by them or something.

10:52 am: Alec announces, "I'm taking a nap, so everyone shut up."

11:59 am: Alec wakes up because Mom and I were singing loud...because he was still tired, he makes this loud groaning sound. Still put off by his telling us to shut up, Mom says to him, "Oh, go back to sleep Frankenstein."

12:02 pm: Mom's alarm goes off-It's Nik's 24th birthday and we have to call him. As a lot of you know, I absolutely abhor talking on the phone so the whole conversation between us pretty much went like this;

ME: Hello?

NIK: Hi.

ME: Happy Birthday.

PAUSE.

NIK: Is that it?

ME: Pretty much, yeah.

NIK: Bye.

ME: Bye!(this said enthusiastically because I was happy to finally be free from the phone)

12:47 pm: Alec says to Mom, "Hey, aren't we going a little fast? Also, why are you veering all over the road?".
Mom says, "I'm only going like ten over!". Alec replies nervously, "Well, are you tired? You're still going crooked on the road!". Mom retorts, "No, I'm not tired, I'm just not paying attention."

12:55 pm: We enter New Hampshire.

1:12 pm: We get into Maine!

1:56 pm: We reach the point where we need to reach for the second page of directions...can't be long now...right?

2:30 pm: We stop at the Walmart that's about ten minutes away from Camp because we need bread and batteries. We end up getting lost in fricking Walmart. Mind you, we didn't get lost at all on the way...not in Albany, like we usually do, and not even in that tricky little roundabout that's near Camp...no, we get lost in WALMART.

12:43 pm: We leave Walmart after circling the store a few times trying to escape.

2:52 pm: We see the sign for Camp Sunshine and start squealing and pounding the armrests in our excitement.

2:55 pm: We arrive at Camp Sunshine!

So there is the complete log of travels from Westland, Michigan to Casco, Maine.

We got to the desk(after dodging, I mean, hugging the giant teddi bears)and as we're standing in line, we meet quite a few people that we knew from last year. This was the first year we were actually EARLY to the checkout...usually, we're one of the last ones there.

I insisted on waiting by the three doors until every last one of the BT families had gotten there...then we unpacked real quick and most of us played Newcomb for quite a while. Then Alice, Lexie, Emily, and I went out for ice cream later that night...which we would do A LOT as the week went on.

Then it was that time that annoyed us all - BEDTIME.

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Sunday, July 26th, 2009

I'm pretty tired from all the traveling with Mom and Alec(No easy feat, I'll tell you that)so for now I'll just share with you the log of our trip to Maine that I kept in my date book. For the rest of the week, I'll do that cool and handy thing where I split up the entries so it's not one big huge 1,000 megabyte journal entry.

Sound good? Okay, so here is what happened, in order and roughly the exact time(I didn't write down seconds).

FRIDAY

Cailtin - So, when are you guys leaving?

Mom - Probably about eight.

Me - Which for us means probably about nine.

SATURDAY

8:48 am: I wake up, look at the clock, and think "Oh S***, here we go, late already".

9:21 am: I update on Facebook and I quote "Yes, I know we said we'd leave at nine o' clock instead of eight but I was wrong...it's 9:21 and we still haven't left."

9:58 am: We finally leave the house.

10:03 am: We arrive at Meijers so Mom can return some bottles and score some extra cashola.

10:05 am: Mom walks into Meijers.

10:07 am: Mom walks out of Meijers...she's forgotten all the bottles. Oops.

10:17 am: We finally leave the Meijer parking lot.

10:32 am: We arrive at Mom's work place so she can pick up a check.

10:42 am: Just as Mom is coming out of work, I get a text message from Mary Pat asking, "Did you finally get on the road?"

10:43 am: I text back, "Yes, but we haven't even left our county yet!"

10:44 am: Mary Pat - Haha!! Where are you staying tonight?

10:46: Me - Albany...hopefully!

10:48 am: Mary Pat - Travel safely! Miss you lots!

10:49 am: Me - Okay, we will! Miss you too!

11:35 am: We finally DO leave our county.

12:05 pm: We finally leave the state and enter Ohio, more than two hours after we leave! Usually, it takes about an hour to get to Toledo.

1:43 pm: We stop at a rest stop and Alec declares it is his turn to sit in the front...then I declare that the radio is still in my power. It's a compromise we're usually both happy with.

1:51 pm: I ask Alec to change the station.

1:54 pm: I ask Mom to change the station.

1:56 pm: I ask Alec or Mom to change the station.

2:09 pm: I get bored of being yelled at for being a pain and decide to read a book.

2:46 pm: I fall asleep.

3:28 pm: I wake up to the sounds of Alec asking Mom whether they should wake me since they stopped at a McDonalds...

Alec - Should we wake her?
Mom - No, she's sleeping.
Alec - I know, but what if she's hungry, should we wake her?
Me - I am awake now, thanks to you, so shut up...and no, I'm not hungry.

3:31 pm: I think better of my decision made while sleepy and grumpy, and grudgingly say, "Fine, I guess I'll have some chicken nuggets..."

5:00 pm: Mom says, "Only three more hours till Albany!". I think, " Fat chance lady, remember this morning?"

5:50 pm: We start becoming lax about what music we listen to and end up jamming out to Human League and Jimmy Hendrix.

5:57 pm: I see a sign that warns of falling rocks and shudder at the possibility.

6:00 pm: I ask Mom one of my famous mundane questions. I asked if the names of the decades in the millennium would be the same as in the nineteen hundreds...for instance, the Twenties, The Thirties, and so on and so forth. She said probably and I voiced the opinion that the Twenties of the millennium probably wouldn't be called The Roaring Twenties the way we're headed. Mom agreed and said, "No, it'll probably be The Boring Twenties". Since we were all as restless as all get out, we thought that was the funniest thing since the time I stuck a spider sticker on my bald spot right before one of my ICP monitor surgeries.

7:13 pm: Mom asks if any of us need to go to the bathroom. We all say no, then, a few seconds later, Alec pipes up, "Well, I thought about it and, yes, I do have to go to the bathroom!". Oy vey.

8:50: We finally get to the hotel! I didn't want to push Mom's nerves and so omitted the fact that we were 50 minutes behind her scheduled arrival time that she foretold at 5:00 pm.

So there is the first day of traveling laid out for your entertainment. Now you all know exactly why we love to drive everywhere!

Tomorrow, I'll share the trip from Albany to Casco and the first evening at Camp. Also, we had a bit of a weird but extremely welcome event while we were passing Fulton, NY(where Heather lived and Beth and Bill still live)but I want to write about that in a more traditional context so look for that later this week as well!

Tuesday, July 21st, 2009

Well, I wanted to update and say we made it here without too many problems! We've been here two days and it's been so fun and totally amazing. I'll update a little thoughout the week but for now I want to focus my attention on the fact that I'm currently at The Best Place In The World!

Friday, July 17th, 2009

My headache has been worse today so I'm not feeling great but I had an amazing time yesterday! Thank you to everyone who came out to celebrate with me and thanks to everyone who signed my guestbook and supported me!

I'll post pictures when I get home from CAMP SUNSHINE! Like I said, I'm headachy and tired today and we're really busy packing and everything. I'll be sure to post pictures from Camp itself too! We're pretty excited about going and seeing everyone that'll be there! We're going to miss everyone that was there during the BT week and not this week but hopefully next year will work out better.

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Thursday, July 16th, 2009 - Five Years Out

From July 16th, 2004

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

From June of 2009, while Mom and I were going on a walk.

**ME: Mom, can we have a party for my anniversary?

MOM: Sure, Sam, I'll see if I can get the day off work.

Then I was doing my thing(that Mom hates)where I think about something then come up with a really hard question that no one could ever have the answer to.

ME: Hey Mom, since it took ten years for me to be diagnosed and since it was a benign tumor and they grow slower...don't we technically have to wait TEN years before I'm in the clear?

MOM: Hey Sam?

ME: Yeah?

MOM: Shut up.**

Both of those moments short but to the point. But since it was benign and Dr. Sood said he got all of it, I guess I am really in the clear. I suppose I was always in the clear but it seems it took five years still for me to get my life back.

It's now five years out and The Headache is finally under control. My school situation is actually working for me and I actually have a ton of friends that I can count on and hang out with on a regular basis. I can't tell you how much I'm looking forward to Camp next week and to the dinner party tonight!

Perhaps most importantly, I believe in my life and future now. I know what could go wrong and I know things probably will in the future but still, I feel better and am much more optimistic than I have been in six years, three months, and 22 days. I've dealt with so many problems and side-effects since the surgery(and really, since the diagnosis)but they finally seem to have trickled down to something I can deal with.

Tonight I'm having that party I mentioned and I can't wait for that! I'll definitely take pictures and post them later on.

I definitely feel like I'm not just a survivor now...I'm a thriver too.

Wednesday, July 15th, 2009

From July 15th, 2004

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

It was a pretty easy decision for me...I had been sick all year and missed almost all of fifth grade. Then my shunt went on the fritz in late June of 2004. The morning I went to the ER, I was supposed to be on a train to see a friend of mine that had moved to Texas two years previously. We were ready to go...Mom figured I'd just get over the "flu" that I had but it became apparent it wasn't the flu when I couldn't even stand without projectile vomiting. I was throwing up constantly no matter if I was standing or laying down...I lost five pounds in one week and when it became apparent it wasn't a virus, we went to the hospital. I was so dehydrated I was placed in the Trauma Room right away and my veins were all blowing when they tried to put in IVs. I was only 51 lbs at the age of eleven.

My point is, I was wasting away and I knew it. I was convinced that without drastic action, the tumor was going to kill me...whether directly or indirectly. I don't know if that was really true and/or rational but at eleven years old, I was sure that was the case. I have no idea what would've happened if it hadn't been resected but it would not have been good, that much I know.

Today however, I went to the movies with a big group of friends and had an amazing time. Even if most of them fell asleep at one point or another during the movie...

But I had so much fun! We got there two hours early so we actually managed to find nine seats together we could all sit in. A miracle, if you ask me. However, I was not so keen on the fact that they were nine minutes late in showing the movie! Seriously, who DOES that? Who was in charge, I ask you! You may scoff all you like, but nine minutes is no laughing matter in a cinema full of Harry Potter fans who stayed up till three in the morning to watch the movie.

Anyways, I suppose some pictures are in order. I apologize for the dark quality of the pictures...theatres tend to be like that.

This is Teddi and I with our spectacular shirts...they say 'U of M Quidditch'!

This is Lauren, Megan, and I...it was rather cramped and hard to take pictures so it's just lucky I'm funsized enough to sit on laps still!

This is Brooke, Molly, and Chiddy....again, sorry that you can hardly see them!

Yeah, this is the way we eat popcorn at Harry Potter premiers. This is Teddi again and that's Adam in the back!

So there you are! Today is a bit of a low key day with just Alec and I at home but tomorrow I'm having a dinner party to celebrate five years of being tumor free!

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Tuesday, July 14th, 2009

July 14th, 2004

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

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

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

Well, as you can imagine, this day five years ago was more than a little scary. I didn't even know this had happened until about a year after my craniotomy. Dad was on his way down to the hospital so he and Mom could tell me the news together but by the time he got there, they had told Mom the doctors had reviewed the scans like they said they would and concluded that I did not, in fact, have little brain cancer cells running rampant. I think I slept through the whole thing actually.

After that scare, they were getting ready to send us home and we were planning to go to Johns Hopkins in Baltimore. Dr. Sood just did NOT want to go in and try to take out the tumor at the time. He even said right before surgery that he doubted he could even biopsy it because it was probably so attached and infiltrated into my Pituitary Gland. But in the end, he decided to at least go in and take a look. I'll post a past update about all of that tomorrow.

Today, however, I am going to the Harry Potter movie! It's at midnight and I've never been to one of those showings so I'm really excited!

I'm a little more headachy today but nothing too bad...everything is going forward as planned. I'm determined to make sure of that!

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Monday, July 13th, 2009

This is from July 13th, 2004.

**Our Endo guy and the Neurosurgeon are both back at work!!! They re-ran her hormone levels, because the other night she started urinating a great deal and it was very dilute. But her lab results don't show that she has DI. We're keeping an eye on it tho. Her shunt pressure is back to zero, as Dr Sood wants to get rid of the fluid pocket in her back. We are getting an MRI today at 1pm.

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

I don't know why Mom sounded so excited about that last part...

There was evidence of DI months before I even had the craniotomy and it particularly flared in the days leading up to the surgery. It was pretty mild but I'm sure that if the tumor had been left in my brain any longer, I would have gotten DI anyway.

Tomorrow or the next day, I'll post a past update that shows how unperturbed I was by the possible side-effects in light of the possibility that the exploding, compressing, stupid thingy in my head could maybe be taken out.

I'm feeling pretty good today...we're going to my papa's house later on. I'm going to look for a rock that I can paint for the Memorial Tree at Camp Sunshine...it'll be for Heather.

Tomorrow at midnight(or is it Wednesday? I'm so confused), I'm seeing Harry Potter and the Half-Blooded Prince with some of my friends from the softball team and I'm pretty excited about that! We made our special Harry Potter Shirts on Thursday and I'll be taking a lot of pictures so you can see them after I get home from the movie! Well, maybe not right after...I probably won't get home till about three in the morning so how about I get a few hours sleep first?

Okay? Good.

Sunday, July 12th, 2009

Well, no updates from July 2004 to share because there wasn't a journal entry on this day five years ago! But anyway, I wanted to update.

I've been way off schedule with my Desmopressin for about a week now. It's just been lasting a long time and because I have to wait until I break through till I can take my next dose, it's just a bother at night when I want to sleep! I've been dialing down the dose steadily and I'm on the right track but it's just annoying.

We go to Camp Sunshine in about a week, so I especially want to get my hormones in a row before I get there! Last year, I had just started the Desmo injections so I was a mess...breaking through for five hours a night was NOT fun.

Just imagine not being able to hydrate yourself for five hours, while the whole time your kidneys are just throwing away all the water in your body like it has tons to spare - which it doesn't. The whole time, you drink gallons(you think I'm kidding??)of water but the only outcome of THAT it that you have to go to the bathroom every ten minutes(again, NOT kidding).

So, yeah, I'm just trying to get situated for Camp next week! There will be some families that we know there this year, but as I mentioned a couple months ago, The Children's Brain Tumor Foundation kinda pulled the rug out from under most of us. Which sucks and was more than a little rude.

But I could go on for pages about how unfair I think it is that CBTF is no longer funding families that didn't donate to them as much as they perhaps would've liked. Just let me say that a lot of us BT families are as mad as anything, and my family for one, will not buy so much as a hotdog at the Pumpkin Fest this year if it would benefit CBTF. I'm just going to meet up with all the friends I missed this year at BT week!

Apart from that little affrontation, I've been feeling great at least! The Headache is only a five out of ten, whereas most of the last two years, it was at least a seven. Really, I considered it to be a ten all of the time. Wouldn't a pain that has lasted almost two years be considered The WORST pain you have EVER felt in your ENTIRE life(as the nurses at Childrens would say)? I think so. But I've been feeling pretty darned good for a while now so hopefully, that's all behind me.

Ahem...especially now that it's very possible I could be gearing up to go to COLLEGE this time next year! That was the Educational Surprise I was going to spring on you all before my internet crashed.

My Connect teacher thinks I'll be ready to take my GED by February...Happy Birthday to me! I would probably start out at a local two year college that's around here, but eventually I want to go to U of M!

But I feel totally ready for college, believe it or not...I just have to brush up on my math before I take the GED test.

Washington Elementary, Wilson Middle School, and Roosevelt High...I take my hat off to you.

And I stick my tongue out at you.

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Friday, July 10th, 2009

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

That was written by Mom on July 9th, 2004. A week before the tumor was taken out. I really had no idea how serious that whole summer was until recently. The last couple years, I've been asking a lot of questions about what happened during all of this and I didn't know how somber the outlook seemed sometimes.

I'll share some more updates from that time as the week goes on.

Yesterday was a pretty good day for me...and pretty fun! I got together with some of the girls from the softball team and we made the shirts we're wearing to the Harry Potter movie! We're going to see it at 12:01 am...it's going to be pretty sweet. I stayed there for about seven hours...I haven't been anywhere for that long in a while! Because of headaches or tiredness or whatever. It was pretty cool not having to worry about leaving early because of how I'm feeling that day.

I can't really express how awesome it was to actually be able to just go over to a friends house and hang out...I felt pretty normal for once! It was sooo much fun and I can't wait till Tuesday night/Wednesday morning!

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Wednesday, July 8th, 2009

Okay, after no less than five calls to AT & T and more than three weeks of waiting, we finally have internet! Not just any internet, mind you...but WiFi!!

Or as I like to pronounce it, Wee Fee...but however you pronounce it, Alec and I can now use the internet AT THE SAME TIME! No more arguing over what is a better use of one's time-Left 4 Dead or Facebook.

Anyways, this July is a very important one. Not only is the sixth Harry Potter movie coming out but it is also the fifth year since my craniotomy and I'm still cyst/tumor/whatever-you-want-to-call-it...free! July 16th, 2004...wow, I never would've guessed all of what I would have to go through to get to this point.

I so desperately wanted the stupid thing out of MY Pituitary Gland-and was so happy when they decided to do that- that I never stopped to think that it wouldn't just be all over once it was gone. Really, I'd say that the years since the resection have been worse than the 16 months after my diagnosis. Just knowing that I still had so many problems, yet there wasn't anything to fix now, was horribly frustrating.

Still is, but for whatever reason, my headaches are a lot better. They've been better for about two months now so I think this is for real. I've been getting out and being active everyday and it feels wonderful.

Tomorrow, I'm getting together with some of my softball sisters and we're making costumes for the Harry Potter premier! Well, not exactly costumes but we're making special T-shirts that you'll have to wait until July 15th to see! But who knows, we might wear pointed hats or bring some wands or something.

Monday, July 6, 2009 6:15 AM CDT

Our internet is still not working, AT&T is coming over on Wednesday to hopefully fix it. It's weird, Alec's XBox live will connect but not my computer and not Chris' computer so not sure what it is.

Sam is ok, she had a rough weekend but was feeling better by Sunday. We re-arranged the living room, it looks better to me, more open. Camp Sunshine is in 13 days so we're getting ready for that. Talent show skit is in the works, many rehearsals are taking place. It's going to be fun.

Take care and we'll talk on Wednesday hopefully after the internet is fixed....

Friday, June 26th, 2009 ...err, I mean it's June 27th.

Well, it's exactly one in the morning, hence the title. I am shacked up at Lily and Luke's for the weekend and they just happen to have internet services! Apart from that, they also got a new dog and he is the cutest little thing! He is half Poodle and half Schnauzer...we are calling him a Snoodle and his name is Mr. Bean.

Anyways, to the people I won't get to see this summer at camp Sunshine...don't worry, I'm hiring(although, is it hiring if I'm not paying him?)Alec to video tape Mom's and my little skit we're working on.

In medical news, I got ahold of, ahem, MOM got ahold of Dr. Moltz and she agreed to up the dose of my Fludrocortisone...now I take half a tablet two times a day instead of one. However, I ABSOLUTELY CANNOT go up on my Prednisone(that was the emphasis Dr. Moltz put on her directions)so...where my recent and extreme fatigue is concerned, no answers or solutions yet.

Sigh, well, apparently SOMETHING has to be physically wrong with me or the universe as we know it will start spinning wildly out of control or the Space/Time Contiuum will freeze or something.

If it's for the good or mankind, then I suppose I'll gladly put up with it.

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Wednesday, June 24th, 2009

Well, our internet's out again...I think one of our cables fused out or something. So until we get it fixed, my updates will be rather sporadic...I'm writing this at dad's house now.

Nothing much is going on...but I'm getting excited for the summer! We're going to Camp Sunshine but instead of the BT week, we're going to an Oncology week. It's from the 19th to the 24th...less than a month! Mom and I are working on a bit for the Talent Show...I'm veering a little from my usual course but it'll be great!

And yes, that's another surprise.

I'm still feeling pretty darn good...the Fludrocortisone is helping a lot with the palpitations. I hardly have them anymore in the morning but we're going to see if we can up the dose a little so the symptoms I also get during the day will go away too. I'm still having the wall-denting dizziness and metal-plate-dinging clumsiness. But for now, I'm sleeping a LOT better and I've been doing a lot during the day for once since my headache isn't too bad.

So far, it's been a great summer!

P.S. One more note...Mom's propensity for attracting bad luck in respect to all electronics has killed my camera. Actually, not really...the screen is cracked(she dropped it)but I think as long as the actual lens is okay, it might still work! I'm waiting for the computer to load them so I can take a look at what the pictures on my camera look like!

It's lucky I'm not like every other teen...I didn't start yelling at Mom that she's ruining my life and stuff like that. On the contrary, I thought it was funny and could very well be used for a future W F R/K Story!

Thursday, June 18th, 2009

We're still adjusting to an apartment without a emotionally needy and physically substantial cat attached to our hips. Every time I step on a piece of paper or crinkle a plastic bag on accident, I instinctively look round to see how Abbey reacted. Whenever I'm lying in bed and hear a noise, I automatically pat the space next to me and invite Abbey up.

It might seem silly to some people that I'm reacting like this to a mere cat. Especially as I've been through worse loss right? But in reality, that's exactly why I'm(actually, why all of us are)so upset. Between seventh and ninth grade, when I was completely cut off from any interaction outside immediate family, I at least had Abbey to keep me company. Even more so when Alec was at school and Mom at work and I was home and feeling really crappy. I didn't even have to play with Abbey to stay in her good graces...all she had to do was jump up onto the couch and all I had to do was pet her. Literally almost every day was spent like this while I was struggling with the old school district and everyone in it.

I feel very thankful that I had this hunk of flabbiness that, at one time, weighed up to 21 pounds during the hardest time during the last six years. It wasn't my diagnosis and it wasn't the month I spent in the hospital during my craniotomy. It was that limbo where I no longer had a brain tumor but was still suffering from all the side-effects it caused. I'm still suffering from all those side-effects but there's one big difference...now I have friends again and I'm pretty sure my friends from Camp Sunshine wouldn't care if I were to ever get sick again like I did six years ago.

But I'm really glad I had Abbey during the time when I wasn't so fortunate. Don't get me wrong, I'm not "content" with the little time I actually had with the best cat I'll ever have...I'll always wish I had more but I am grateful for that amount of time that I did get to have the best cat ever and for the fact that period of time coincided with the three years I perhaps needed a cat like Abbey most.

Now to take us back to the present...I've been really tired the last few days(as in needing naps again during the day)and that's been a drag but it's better today so maybe it was just the stress of having to take care of Abbey while she needed hourly feedings and daily IV fluids and meds and all that. My headaches have been good(in the worst sense possible...when are headaches ever GOOD?)the last few weeks. Maybe the Keppra is kicking in for good and not just for five to seven days!

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Tuesday, June 16th, 2009

Well, if you've read my guestbook or my Facebook page, you know that our very own Flabby Abbey died yesterday at the age of exactly six years old.

And like Mom said...we have plenty of pictures to remember her by.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Flabby Abbey Robertson
June 15th, 2003-June 15th, 2009

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Monday, June 15th, 2009

Right, so Saturday was Mom's Birthday.

So on Friday, I spent four and a half hours taking this,

And turning it into this.

And this,

Into this.

I was planning this huge unfolding moment(or a surprise, if you will)and I was going to let Mom see the room on her actual birthday. We went to dinner with Caitlin and Rachel and then we came home. I was banking on Mom going to bed early since she had worked that day and I thought I was safe. WRONG. I leave the living room where we were sitting for ONE MINUTE and the next thing I hear is Mom exclaiming and yelling my name...from the newly cleaned bedroom. She was looking for some shoes and, assuming the used-to-be-pigsty room was still a pigsty, thought the shoes might very well be in there.

And so, my big surprise is ruined...Mom even manages to ruin her OWN surprises! Anyway, Happy Birthday Mom!

Today is another special day...Abbey's sixth Birthday! Between her having a serious liver and pancreas disease two weeks ago and then having a low blood sugar induced seizure that almost killed her one week ago, this day seemed pretty far away and unattainable. We're going to have a big party for Abbey, I think!

Although since in Abbey's eyes a perfectly fun party looks like this-

Or maybe this-

I think as long as we have food, water, and a clean litter box in the house(and as long as we pet her lots), she'll be fine.

Friday, June 12th, 2009

Abbey is still getting better every day! Hopefully, this is all the drama that happens for a few years...in my opinion, Abbey needs to cut down on the near-death experiences and start using her lives wisely if she wants to live at least eight-ten more years.

She just has to lose some weight...right now she's a level four, I'd say.

She should also eat less red meat.

And for heaven's sake, she needs to lay off the catnip!

Apart from all that, she's doing a LOT better. I've been doing alright...feeling great mostly actually. At least, great for me. Headaches are as constant as ever but they are better. Also, the Fludrocortisone I'm on for the POTS is helping quite a bit. But I think we're going to go up on the dose because I'm still getting dizzy and having some palpitations during the day and later in the morning.

Tomorrow is Mom's birthday(her 21st, according to her Facebook)so I'll update about that educational big news after that...wouldn't want to steal Mom's thunder! We're going out to dinner tonight and Caitlin and Rachel came from Chicago for the weekend so they'll be there too.

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Thursday, June 11th, 2009

I'm feeling pretty bad today because it's really rainy and yucky out but I wanted to update about Abbey real quick.

ME: Mom, look! Abbey's licking the carpet...she must be back to normal!

Yeppers...that's my good kitty! Actually, she was licking the carpet because I spilled some food on the floor while force-feeding her and instead of using the distraction to her advantage and running away, she started to lick it up.

After getting home last night after her seizure, she slept for a few hours then after a couple more doses of sugar/glucose she perked up and was actually cleaning herself with almost the same vigor as she would have before she got sick. In fact, today she's better than she was BEFORE the seizure yesterday. She's drinking on her own now, she's eating A LOT on her own now, she's cleaning herself, and she's doing that annoying thing where she keels over and butts against you so you pet her. I predict that by this time tomorrow, she will be poking at the guinea pigs and actually meowing for food and water again.

The vet said that she was a miracle cat and that he would never forget her! There was even some worry about permanent brain damage...indeed, I think she was blind for a couple hours after the seizure last night but she is perfectly fine now and pretty much back to her old self!

Yes, that includes carpet licking and extreme neediness.

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Wednesday, June 10th, 2009

Well, today was not a good day for Abbey. She started out good...she was actually walking into the kitchen on her own and eating...which is why Mom and I decided to give her three units of Insulin instead of two. That was at ten. She seemed fine all morning, we gave her more Sub-Q fluids and that went fine. But at around 1:30, 2:00, I carried her out to her food bowl just to see if she would eat more. I went to the computer and was actually starting to update this site when I heard her scrabbling on the linoleum and when I went to see what was happening, Abbey was trying to walk but her hind legs weren't working. I carried her into the living room and I thought that it was just a minor setback, that maybe she was just experiencing some weakness because of being at death's door just a week ago.

That was about seven hours ago and I won't go into details but basically, she started twitching in weird ways that made me extremely uncomfortable and then she threw up and seemed better. But I called Mom because it seemed like a minor seizure and I didn't want to take chances. Mom came home and we took Abbey to the vet where she had a full-blown seizure, it looked like. The vet took her blood and it showed that her blood sugar was only 20, whereas it's supposed to be roughly the same as a human would be normally. The vet said he gave her some glucose intravenously and she immediately got better. It was scary as hell, seeing Abbey like that but we are home now and she's sleeping now but we've been giving her syrup and also regular cat food and she's been tolerating it well. The vet said that there was a strong chance of her decompensating overnight but the vet even said that he'd never ever before seen a cat bounce back so quickly and completely before, after just one shot of glucose.

Things are very serious for our Flabby Abbey but I think we have quite the fighter snoozing on our couch right now and by my calculations, she still has seven lives left!

Oklahoma City with the U of M Softball Team.

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Tuesday, June 9th, 2009

Today Abbey actually ate out of her food bowl on her own!! Granted, we have to carry her and plop her down in front of her food bowl in order for her to become interested but there was no syringe, wriggling, or splattering involved. She's still not eating quite enough on her own so we still have to force feed her a little. Also, we were given an IV for Abbey. Every other day, we(meaning I)have to stick a big needle in her back and give her fluids right under the skin.

Sounds like a job for...me! Honestly, it's not even that hard...she doesn't even feel it. It's a lot harder to feed her...we just had to give her medicine and it took about fifteen minuntes just to get her to swallow one measly pill!

But all in all she's doing much better...ten percent my butt! Mom and I also got some big news about my education...but I'll update about that later and most of you know it anyways because of Facebook.

For now, it's time for more important things!

DAY FOUR OF THE OKLAHOMA CITY VENTURE(Sat. May 30th)

The morning pretty much started out like every morning there...we woke up, ate, and Mom went back to sleep while I read.

On Saturday, we went out to eat at a place called Something Brewery(okay, not really but neither Mom nor I can quite remember the name!). That was pretty fun...they had TV's in there and they switched them to ESPN just for us so we got to make fun of the teams that were playing at the time. Also to pass the time, there was a lot of napkin-ball-throwing and putting-napkin-bits-into-people's-drinks-and-all-the-way-in-so-they-had-to-fish-it-out going on. I didn't personally engage in that(maybe next year...)but I had a lot of fun watching! I did, however, learn one very important tidbit of information concerning the U of M fake tattoos...

You see, at one of the U of M home games Lauren, one of the girls on the team, gave me a tattoo(and like I said, fake)and I proudly wore it for the game! However, when I took a shower, I scrubbed at it, used facewash on it, and even scratched it but when I looked in the mirror, I hadn't even put a dent(so to speak)in it! So I took a towel and rubbed my cheek till the darned thing came off. But then my face started burning so I put some Aloe Vera gel on it...and that made it worse!

Long story short, you shouldn't do that apparently. I just was doing my thing...listening to other people talk and occasionally butting in, when I heard Bree, another one of the team members, saying, "Yeah, you have to use ducktape to get the tattoos off...". I turned to look at her and tried to casually say, "Oh...really? Tape? Because I tried to take mine off...another way and it didn't work." So Bree said, "You didn't try to rub it, did you??".

"Maybe..."

So I learned the better and substantially less painful way of removing fake U of M tattoos. After we were done eating, we went back to their hotel and then we got in our car and went back to ours.

Then it was game time so we drove to the stadium...and I kid you not, it was the first trip all week that we didn't get lost.

I got to go out on the field of course.

This is the team being announced.

Then I went to my seat and we cheered, screamed, clapped, got mad at the ump, and corrected the guy who said the stuffed wolverine that was our mascot was a badger. But despite our cheering and the fact that the badger-guy went home a little wiser...we lost the game and it was the end of the World Series for us.

But I think that the fact that I started crying upon seeing some of the team crying vouches for the bond we have formed.

I mean, obviously, it would have been just that much more awesome if we had won the whole thing but I know that next year, I get to do it all over again! The fact that we lost doesn't change anything. That's one thing I appreciate...that just because something bad or hard happened, it doesn't have to be TOO hard or TOO bad. I've encountered that kind of thinking enough at school, thank you very much. I just can't wait for next season...we already have some plans for the summer too and I can't wait for that!

I'm sure people looking at me with my U of M shirt on and my red-rimmed eyes were probably thinking,"Geez, buck up. You lost, get over it!" but in my mind it was like this-

Do they personally know their team? Have they ever had the chance to eat a meal with them and just talk? Do they get to high five them and sing the National Anthem while holding hands with them?

No?

Well, in that case...

I win!

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Sunday, June 7th, 2009

Because of the crazy busy week we've been having, the fact that I was running out of Desmo didn't crop up until I only just managed to squeeze out 30 units of it last night. In fact, because I had to poke the needle in the cartridge at so many different angles in order to get as much Desmo out as I possibly could...by the time I got around to injecting it in my stomach, the needle was so dull I couldn't even get it in. I had to push the Desmo in the dull needle into a spoon so I could get it into a fresh syringe.

That's one addict behavior I can check off my list. But all in all, I'm proud of my ability to be able to get everything I possibly can out of every Desmo bottle I get! Literally not ONE DROP left in it by the time I was through with it!

Anyway, what this is leading up to is that I had to go to the ER to get my Desmopressin. What a bother...we called every pharmacy and hospital in Southeast Michigan and either they didn't have it or they weren't even open. So we had to go to Childrens so they could give me enough to last till Tuesday when the pharmacies will have some in stock.

But anyway, now we're home and Abbey is still doing well with the force-feeding. The downside to that is that now she is getting stronger so she's fighting us a lot more but we're still able to get food and fluids in her.

All righty then...

DAY THREE OF THE OKLAHOMA CITY VENTURE(Fri. May 29th)

Well, we woke up again at about nine, ate breakfast(Mom had a normal biscuit and jelly, while I had leftover chicken from the day before), then Mom took a three hour nap while I read a book(this happened a lot during the course of the trip).

Then we really got down to business, got dressed, and headed out to meet the team for lunch again! This time we went to Chili's...and they didn't look too thrilled when they saw how many people they would be serving. At least, one guy in particular was rather standoffish...if not downright rude! I mean, come on, all I wanted was a bottle of ketchup and he acted like I asked him to go out back, pick the tomatoes, and make it himself... I said 'please' too!

But we had a lot of fun anyway and the food was pretty good. Once again, I was set for the rest of the day what with all the carry-out I...carried out.

This is Teddi and I at the Chili's restaurant...no crabby waiter is going to ruin our day!

After we were done eating I also had to do another interview...except this one was much less pressured!

This is Teddi and Nikki asking me mundane questions like 'What's your favorite color?' and 'What's your favorite movie?'...this I could handle!

After we were all done with that, we got on the bus and endured about an hour of rush hour traffic to get to the hotel that was only about 15 miles away. Once again, we only had a little while till the game so we went back to the hotel for just a little bit then went to the game.

Here's me standing with the girls during the National Anthem...actually, this is in Michigan but it's essentially the same here as in Oklahoma!

We were on TV a few more times as adoring fans cheering on their team(and we got more text messages saying so)but unfortunately, we lost to the Florida Gators...whatever, their school colors are tacky. Bright blue and orange? Puh-lease.

But I still went down on the field after the game...and I still had a lot of fun at the game! We huddled and Hutch made the after-game pep talk(and it's still strictly confidential).

While we were all listening to Coach Hutch with serious faces(because we were understandably not the happiest team on the field right then), I happened to look up at the scoreboard, which was showing blips from the game and featured some people in the crowd.

Just in time to see Mom holding up our sign that says 'Sammi Jean loves the U of M Softball Team!'...looking all happy and proud....but the sign was upside down. I'm afraid that caused me to snort with laughter right in the middle of our somber gathering.

After Hutch finished the speech and I had resumed my appropriately serious face, we said good-bye for the night and went back to the hotel.

Trust Mom to make everything all better!

________________________________________
Saturday, June 6th, 2009

Abbey is still getting a little better. One thing I was relieved to see yesterday was that her eyes were returning to normal color. Two days ago, they were a shocking, unnerving, and bilateral yellow. Now they are more back to normal...one brownish-yellow and one yellowish-green!

So with that, let's move on!

DAY TWO OF THE OKLAHOMA CITY VENTURE(Thurs. May 28th).

Despite getting to OKC at two o' clock in the morning, we still woke up early at about nine. We ate breakfast and sat around for a while then we get an E-mail from Coach Hutch and find that apparently, we were going out to lunch with the team!

So we go out to eat at a very nice restaurant where we find out that people in OKC must eat four times the amount of food that people from Michigan do. Seriously, I was not only served my lunch, but also my dinner and the next day's breakfast! But it was very good so I'm not complaining.

After that, we left the restaurant to go back to the hotel...thinking we had about two or three hours before the game. WRONG. The whole eastern/central time switch got us mixed up so actually Mom had time for just a five-minute nap then we raced off to the game.

We got there and met Kris Herman who proceeded to tell me right then and there that I was being interviewed about Friends of Jaclyn later on during that very game. I have to admit, I wasn't all that thrilled and I WAS all that nervous but it was still May and we still had some awareness to raise!

So anyways, before the game I went down onto the field to do the usual relaxing.

This is Alycia, Marley, me, and Angela in the dugout.

Also, the usual goofing around.

Although, this could be a completely serious ritual to the team...

After all the pre-game stuff ended, I went up to my seat and proceeded to anxiously scan the crowd for a camera guy between every inning. All the while, we were running and scoring like crazy! Mom and I were even on TV a couple of times...every time the camera zoomed in on us, we'd get like 15 text messages apiece(We just saw u! DUDE U WERE ON TV! U ROCKED)telling us we were just on ESPN.

Then Holly(the interviewer)came up and introduced herself and started asking me about FOJ and how it has helped me. I answered as coherently as I could and actually, I felt pretty coherent! I haven't seen the interview yet because we were planning to go over to my Papa's house to watch it but of course, we don't want to leave Abbey alone for now. But anyway, here is a picture of the interview.

Then we won the game against Alabama 6-1! After the game ended, I went down with the team to a tent, listened to Hutch's after-game speech(and it's strictly confidential, I'll have you know), and then we said good bye and went back to the hotel to really catch up on our sleep!

P.S. To keep you occupied until Day Three, there is a new and very special W F R/K Story!

________________________________________
Thursday, June 4th, 2009

Abbey is doing better today. We've been force-feeding her and she's only thrown up a little bit of it. They gave her a shot of Reglan(shudder)yesterday and I think she's just starting to throw up now because it's wearing off. But things are looking up for her and we're a lot more hopeful today...those vets don't know how many people we have behind us here, obviously!

Riddle me this...Why is Mom always telling me to be more proactive in my care and then when I ask questions, the doctor and Mom always share a conspiratorial glance and then share a hearty chuckle at my expense?

Yesterday, when the Vet gave Abbey the shot of Reglan(shudder), I asked the Vet if we should watch out for a Dystonic Reaction. I was concerned because I have had one myself because of the Reglan...and let me tell you, it's not fun.

After I asked, the Vet looked blankly at me then looked bemusedly at Mom. Mom explained that I had had one a few years ago and for some reason, my question was deemed funny. He said no, there wasn't a very good chance though.

Teenagers get a very bad rap if you ask me...we do occasionally ask smart and sensible questions, you know.

Okay, well, I've decided to update about our trip on the way to OKC. Consider that Day One. So, if you figure we were on the trip for six days...this will be a six part saga.

Ahem, so...

DAY ONE OF THE OKLAHOMA CITY VENTURE.(Wed. May 27th)

Well, our trip started out with us getting in the car and about five minutes out, I asked Mom if she had her phone. Just a regular stock check, you understand. Well, Mom checked her pockets and her purse but nothing doing. So we drive home to get her phone. She goes into the apartment and looks for it. A couple seconds later I feel my butt vibrating. I was thinking about other mundane stuff and not really about the phone so without thinking, I pick up the vibrating thing and answer cheerfully,"Hello?".

Mom wasn't so cheery("Are you kidding me?", she said irritably). That's when I realize I had been sitting on her phone the entire time and we set off again. Thankfully, we get farther than five minutes. In fact, we had no more delays on the way there.

The rest of the trip pretty much consisted of a funnily named town called Effingham, that we found amusing and of course, the occasional gas stop, bathroom stop, and also Mom needed a couple of naps on the way. It was a lot quieter without Alec and Caitlin in the car.

Here is one picture I took on the way there. It doesn't exactly relate to us or softball but it represents a question I've always pondered.

Why would people just leave a perfectly good shoe in the parking lot of a gas station? I mean, if you dropped it, just go back for it! Wouldn't you notice if you were missing one of your shoes?

Now you know I have way too much time on my hands, if I have the free time to think about stupid topics like this.

Thursday, June 101h, 2009

I'm feeling pretty bad today because it's really rainy and yucky out but i wanted to update about Abbey real quick.

ME: Mom, look! Abbey's licking the carpet...she must be back to normal!

Yeppers...that's my good kitty! Actually, she was licking the carpet because I spilled some food on the floor while force-feeding her and instead of using the distraction to her advantage and running away, she started to lick it up.

After getting home last night after her seizure, she slept for a few hours then after a couple more doses of sugar/glucose she perked up and was actually cleaning herself with almost the same vigor as she would have before she got sick. In fact, today she's better than she was BEFORE the seizure yesterday. She's drinking on her own now, she's eating A LOT on her own now, she's cleaning herself, and she's doing that annoying thing where she keels over and butts against you so you pet her. I predict that by this time tomorrow, she will be poking at the guinea pigs and actually meowing for food and water again.

The vet said that she was a miracle cat and that he would never forget her! There was even some worry about permanent brain damage...indeed, I think she was blind for a couple hours after the seizure last night but she is perfectly fine now and pretty much back to her old self!

Yes, that includes carpet licking and extreme neediness.

________________________________________
Wednesday, June 10th, 2009

Well, today was not a good day for Abbey. She started out good...she was actually walking into the kitchen on her own and eating...which is why Mom and I decided to give her three units of Insulin instead of two. That was at ten. She seemed fine all morning, we gave her more Sub-Q fluids and that went fine. But at around 1:30, 2:00, I carried her out to her food bowl just to see if she would eat more. I went to the computer and was actually starting to update this site when I heard her scrabbling on the linoleum and when I went to see what was happening, Abbey was trying to walk but her hind legs weren't working. I carried her into the living room and I thought that it was just a minor setback, that maybe she was just experiencing some weakness because of being at death's door just a week ago.

That was about seven hours ago and I won't go into details but basically, she started twitching in weird ways that made me extremely uncomfortable and then she threw up and seemed better. But I called Mom because it seemed like a minor seizure and I didn't want to take chances. Mom came home and we took Abbey to the vet where she had a full-blown seizure, it looked like. The vet took her blood and it showed that her blood sugar was only 20, whereas it's supposed to be roughly the same as a human would be normally. The vet said he gave her some glucose intravenously and she immediately got better. It was scary as hell, seeing Abbey like that but we are home now and she's sleeping now but we've been giving her syrup and also regular cat food and she's been tolerating it well. The vet said that there was a strong chance of her decompensating overnight but the vet even said that he'd never ever before seen a cat bounce back so quickly and completely before, after just one shot of glucose.

Things are very serious for our Flabby Abbey but I think we have quite the fighter snoozing on our couch right now and by my calculations, she still has seven lives left!

________________________________________
Tuesday, June 9th, 2009

Today Abbey actually ate out of her food bowl on her own!! Granted, we have to carry her and plop her down in front of her food bowl in order for her to become interested but there was no syringe, wriggling, or splattering involved. She's still not eating quite enough on her own so we still have to force feed her a little. Also, we were given an IV for Abbey. Every other day, we(meaning I)have to stick a big needle in her back and give her fluids right under the skin.

Sounds like a job for...me! Honestly, it's not even that hard...she doesn't even feel it. It's a lot harder to feed her...we just had to give her medicine and it took about fifteen minuntes just to get her to swallow one measly pill!

But all in all she's doing much better...ten percent my butt! Mom and I also got some big news about my education...but I'll update about that later and most of you know it anyways because of Facebook.

For now, it's time for more important things!

DAY FOUR OF THE OKLAHOMA CITY VENTURE(Sat. May 30th)

The morning pretty much started out like every morning there...we woke up, ate, and Mom went back to sleep while I read.

On Saturday, we went out to eat at a place called Something Brewery(okay, not really but neither Mom nor I can quite remember the name!). That was pretty fun...they had TV's in there and they switched them to ESPN just for us so we got to make fun of the teams that were playing at the time. Also to pass the time, there was a lot of napkin-ball-throwing and putting-napkin-bits-into-people's-drinks-and-all-the-way-in-so-they-had-to-fish-it-out going on. I didn't personally engage in that(maybe next year...)but I had a lot of fun watching! I did, however, learn one very important tidbit of information concerning the U of M fake tattoos...

You see, at one of the U of M home games Lauren, one of the girls on the team, gave me a tattoo(and like I said, fake)and I proudly wore it for the game! However, when I took a shower, I scrubbed at it, used facewash on it, and even scratched it but when I looked in the mirror, I hadn't even put a dent(so to speak)in it! So I took a towel and rubbed my cheek till the darned thing came off. But then my face started burning so I put some Aloe Vera gel on it...and that made it worse!

Long story short, you shouldn't do that apparently. I just was doing my thing...listening to other people talk and occasionally butting in, when I heard Bree, another one of the team members, saying, "Yeah, you have to use ducktape to get the tattoos off...". I turned to look at her and tried to casually say, "Oh...really? Tape? Because I tried to take mine off...another way and it didn't work." So Bree said, "You didn't try to rub it, did you??".

"Maybe..."

So I learned the better and substantially less painful way of removing fake U of M tattoos. After we were done eating, we went back to their hotel and then we got in our car and went back to ours.

Then it was game time so we drove to the stadium...and I kid you not, it was the first trip all week that we didn't get lost.

I got to go out on the field of course.

This is the team being announced.

Then I went to my seat and we cheered, screamed, clapped, got mad at the ump, and corrected the guy who said the stuffed wolverine that was our mascot was a badger. But despite our cheering and the fact that the badger-guy went home a little wiser...we lost the game and it was the end of the World Series for us.

But I think that the fact that I started crying upon seeing some of the team crying vouches for the bond we have formed.

I mean, obviously, it would have been just that much more awesome if we had won the whole thing but I know that next year, I get to do it all over again! The fact that we lost doesn't change anything. That's one thing I appreciate...that just because something bad or hard happened, it doesn't have to be TOO hard or TOO bad. I've encountered that kind of thinking enough at school, thank you very much. I just can't wait for next season...we already have some plans for the summer too and I can't wait for that!

I'm sure people looking at me with my U of M shirt on and my red-rimmed eyes were probably thinking,"Geez, buck up. You lost, get over it!" but in my mind it was like this-

Do they personally know their team? Have they ever had the chance to eat a meal with them and just talk? Do they get to high five them and sing the National Anthem while holding hands with them?

No?

Well, in that case...

I win!

________________________________________
Sunday, June 7th, 2009

Because of the crazy busy week we've been having, the fact that I was running out of Desmo didn't crop up until I only just managed to squeeze out 30 units of it last night. In fact, because I had to poke the needle in the cartridge at so many different angles in order to get as much Desmo out as I possibly could...by the time I got around to injecting it in my stomach, the needle was so dull I couldn't even get it in. I had to push the Desmo in the dull needle into a spoon so I could get it into a fresh syringe.

That's one addict behavior I can check off my list. But all in all, I'm proud of my ability to be able to get everything I possibly can out of every Desmo bottle I get! Literally not ONE DROP left in it by the time I was through with it!

Anyway, what this is leading up to is that I had to go to the ER to get my Desmopressin. What a bother...we called every pharmacy and hospital in Southeast Michigan and either they didn't have it or they weren't even open. So we had to go to Childrens so they could give me enough to last till Tuesday when the pharmacies will have some in stock.

But anyway, now we're home and Abbey is still doing well with the force-feeding. The downside to that is that now she is getting stronger so she's fighting us a lot more but we're still able to get food and fluids in her.

All righty then...

DAY THREE OF THE OKLAHOMA CITY VENTURE(Fri. May 29th)

Well, we woke up again at about nine, ate breakfast(Mom had a normal biscuit and jelly, while I had leftover chicken from the day before), then Mom took a three hour nap while I read a book(this happened a lot during the course of the trip).

Then we really got down to business, got dressed, and headed out to meet the team for lunch again! This time we went to Chili's...and they didn't look too thrilled when they saw how many people they would be serving. At least, one guy in particular was rather standoffish...if not downright rude! I mean, come on, all I wanted was a bottle of ketchup and he acted like I asked him to go out back, pick the tomatoes, and make it himself... I said 'please' too!

But we had a lot of fun anyway and the food was pretty good. Once again, I was set for the rest of the day what with all the carry-out I...carried out.

This is Teddi and I at the Chili's restaurant...no crabby waiter is going to ruin our day!

After we were done eating I also had to do another interview...except this one was much less pressured!

This is Teddi and Nikki asking me mundane questions like 'What's your favorite color?' and 'What's your favorite movie?'...this I could handle!

After we were all done with that, we got on the bus and endured about an hour of rush hour traffic to get to the hotel that was only about 15 miles away. Once again, we only had a little while till the game so we went back to the hotel for just a little bit then went to the game.

Here's me standing with the girls during the National Anthem...actually, this is in Michigan but it's essentially the same here as in Oklahoma!

We were on TV a few more times as adoring fans cheering on their team(and we got more text messages saying so)but unfortunately, we lost to the Florida Gators...whatever, their school colors are tacky. Bright blue and orange? Puh-lease.

But I still went down on the field after the game...and I still had a lot of fun at the game! We huddled and Hutch made the after-game pep talk(and it's still strictly confidential).

While we were all listening to Coach Hutch with serious faces(because we were understandably not the happiest team on the field right then), I happened to look up at the scoreboard, which was showing blips from the game and featured some people in the crowd.

Just in time to see Mom holding up our sign that says 'Sammi Jean loves the U of M Softball Team!'...looking all happy and proud....but the sign was upside down. I'm afraid that caused me to snort with laughter right in the middle of our somber gathering.

After Hutch finished the speech and I had resumed my appropriately serious face, we said good-bye for the night and went back to the hotel.

Trust Mom to make everything all better!

________________________________________
Saturday, June 6th, 2009

Abbey is still getting a little better. One thing I was relieved to see yesterday was that her eyes were returning to normal color. Two days ago, they were a shocking, unnerving, and bilateral yellow. Now they are more back to normal...one brownish-yellow and one yellowish-green!

So with that, let's move on!

DAY TWO OF THE OKLAHOMA CITY VENTURE(Thurs. May 28th).

Despite getting to OKC at two o' clock in the morning, we still woke up early at about nine. We ate breakfast and sat around for a while then we get an E-mail from Coach Hutch and find that apparently, we were going out to lunch with the team!

So we go out to eat at a very nice restaurant where we find out that people in OKC must eat four times the amount of food that people from Michigan do. Seriously, I was not only served my lunch, but also my dinner and the next day's breakfast! But it was very good so I'm not complaining.

After that, we left the restaurant to go back to the hotel...thinking we had about two or three hours before the game. WRONG. The whole eastern/central time switch got us mixed up so actually Mom had time for just a five-minute nap then we raced off to the game.

We got there and met Kris Herman who proceeded to tell me right then and there that I was being interviewed about Friends of Jaclyn later on during that very game. I have to admit, I wasn't all that thrilled and I WAS all that nervous but it was still May and we still had some awareness to raise!

So anyways, before the game I went down onto the field to do the usual relaxing.

This is Alycia, Marley, me, and Angela in the dugout.

Also, the usual goofing around.

Although, this could be a completely serious ritual to the team...

After all the pre-game stuff ended, I went up to my seat and proceeded to anxiously scan the crowd for a camera guy between every inning. All the while, we were running and scoring like crazy! Mom and I were even on TV a couple of times...every time the camera zoomed in on us, we'd get like 15 text messages apiece(We just saw u! DUDE U WERE ON TV! U ROCKED)telling us we were just on ESPN.

Then Holly(the interviewer)came up and introduced herself and started asking me about FOJ and how it has helped me. I answered as coherently as I could and actually, I felt pretty coherent! I haven't seen the interview yet because we were planning to go over to my Papa's house to watch it but of course, we don't want to leave Abbey alone for now. But anyway, here is a picture of the interview.

Then we won the game against Alabama 6-1! After the game ended, I went down with the team to a tent, listened to Hutch's after-game speech(and it's strictly confidential, I'll have you know), and then we said good bye and went back to the hotel to really catch up on our sleep!

P.S. To keep you occupied until Day Three, there is a new and very special W F R/K Story!

________________________________________
Thursday, June 4th, 2009

Abbey is doing better today. We've been force-feeding her and she's only thrown up a little bit of it. They gave her a shot of Reglan(shudder)yesterday and I think she's just starting to throw up now because it's wearing off. But things are looking up for her and we're a lot more hopeful today...those vets don't know how many people we have behind us here, obviously!

Riddle me this...Why is Mom always telling me to be more proactive in my care and then when I ask questions, the doctor and Mom always share a conspiratorial glance and then share a hearty chuckle at my expense?

Yesterday, when the Vet gave Abbey the shot of Reglan(shudder), I asked the Vet if we should watch out for a Dystonic Reaction. I was concerned because I have had one myself because of the Reglan...and let me tell you, it's not fun.

After I asked, the Vet looked blankly at me then looked bemusedly at Mom. Mom explained that I had had one a few years ago and for some reason, my question was deemed funny. He said no, there wasn't a very good chance though.

Teenagers get a very bad rap if you ask me...we do occasionally ask smart and sensible questions, you know.

Okay, well, I've decided to update about our trip on the way to OKC. Consider that Day One. So, if you figure we were on the trip for six days...this will be a six part saga.

Ahem, so...

DAY ONE OF THE OKLAHOMA CITY VENTURE.(Wed. May 27th)

Well, our trip started out with us getting in the car and about five minutes out, I asked Mom if she had her phone. Just a regular stock check, you understand. Well, Mom checked her pockets and her purse but nothing doing. So we drive home to get her phone. She goes into the apartment and looks for it. A couple seconds later I feel my butt vibrating. I was thinking about other mundane stuff and not really about the phone so without thinking, I pick up the vibrating thing and answer cheerfully,"Hello?".

Mom wasn't so cheery("Are you kidding me?", she said irritably). That's when I realize I had been sitting on her phone the entire time and we set off again. Thankfully, we get farther than five minutes. In fact, we had no more delays on the way there.

The rest of the trip pretty much consisted of a funnily named town called Effingham, that we found amusing and of course, the occasional gas stop, bathroom stop, and also Mom needed a couple of naps on the way. It was a lot quieter without Alec and Caitlin in the car.

Here is one picture I took on the way there. It doesn't exactly relate to us or softball but it represents a question I've always pondered.

Why would people just leave a perfectly good shoe in the parking lot of a gas station? I mean, if you dropped it, just go back for it! Wouldn't you notice if you were missing one of your shoes?

Now you know I have way too much time on my hands, if I have the free time to think about stupid topics like this.

Wednesday, May 27th, 2009

Okay, we're leaving in about ten minutes!! Oklahoma City, watch out because a very crazy Mother/Daughter set is coming your way!

Because I only have ten minutes(actually, about three now, with all the reducing and copying and pasting)I'm going to borrow this catchy little rhyme from my Facebook page. I don't have time to make up another!

I scream,

Mom screams,

Alec screams(even with a severely sprained finger),

We all scream for the U of M Softball team!!

________________________________________
Monday, May 25th, 2009

I'm basing this update on the assumption that you know our big news...MOM AND I ARE HEADING TO OKLAHOMA CITY!!

Thanks to Friends of Jacln and Kris Herman for getting me involved with the team in the first place and for helping us set up the whole trip to the world series!

Of course, I would also like to thank the entire U of M Softball team, Coach Hutch, and the assistant coaches, trainers, and managers who accepted me into their midst and made me really feel like a part of the team!

Maybe you're wondering how we're getting there.

Take a wild guess.

We are driving, of course! It's what we do and it's apparently the only way to travel. You are probably all thinking we're insane but I'm not complaining....I can't sing out loud on a train and we all know what happened in March when we tried flying(Oy vey).

Plus, it's only going to be the two of us. That should calm things down a bit.

For example, you give Alec a bag of chips and half of it inevitably ends up...well, NOT in his stomach but instead all over the backseat or couch or whatever he's sitting on. Caitlin is just a bit on the hyper side and, like Mom, when she gets going, there is no stopping her. I just bury myself in books and annoy Mom by asking her complex questions and just being very talkative. Mom eventually gets so annoyed that she pulls into a random parking lot and complains of needing a nap to force us to be quiet for a while. Of course, it never works because Caitlin always laughs when she needs to be quiet, I always want the radio on or need to sing out loud if I'm listening to my iPod, and Alec is a very loud chewer. So that never works.

Okay, that last part isn't all true...Mom really does need a nap during long drives...but the part about Caitlin's laughter, my singing, and Alec's chewing is, unfortunately for Mom, all true. I think we'd be every Yoga teacher's worst nightmare.

But now, there will only be half the craziness! Just some high pitched singing(Mom likes Prince)and having to stop at rest stops every half hour and freaking out the locals by drinking from the water fountain for MINUTES at a time(with no breaks for air)while I'm breaking through.

You know, normal stuff.

________________________________________
Sunday, May 24th, 2009

Ooooooooooklahoma, where the wind comes sweepin' down the plain
And the wavin' wheat can sure smell sweet
When the wind comes right behind the rain.
Oklahoma, Ev'ry night my honey lamb and I
Sit alone and talk and watch a hawk
Makin' lazy circles in the sky.

We know we belong to the land
And the land we belong to is grand!
And when we say
Yeeow! Ayipioeeay!
We're only sayin'
You're doin' fine, Oklahoma!
Oklahoma O.K.

Okla-okla-Okla-Okla-Okla-Okla
Okla-okla-Okla-Okla-Okla-Okla...

We know we belong to the land
And the land we belong to is grand!
And when we say
Yeeow! Ayipioeeay!
We're only sayin'
You're doin' fine, Oklahoma!
Oklahoma O.K.
L - A - H - O - M - A
OKLAHOMA!
Yeeow!

It's really late(11:15 pm)so I'll update more tomorrow but I wanted to let everyone who may not have seen my ecstatic Facebook update that U of M whupped some Baylor Butt and made it to the World Series in Oklahoma City!

Let's Go Blue!!!

Saturday, May 23rd, 2009

I'm glad to say I've been having another good spell lately...I guess it's the Keppra but if it is, Keppra is a very lazy drug. I don't get why it only helps about five days a month! But I suppose it's better than nonstop-eight-out-of-ten-all-the-time headaches and hopefully, it'll help more as time goes by.

Today at 2:30, there's a softball game I gotta be at! There was one yesterday too and U of M won handily, 8-1 against Baylor! I think you can watch the game on ESPN...although people have told me that yesterdays game was cut off mid-way in favor of Arizona.

Well, I'll probably update real quick after the game to tell you how we did!

(You can see my head at the right hand side of the huddle...I'm the one a head shorter than everyone else)

________________________________________
Friday, May 22nd, 2009

I now see fit to tell you all the surprise.

http://freep.com/article/20090522/SPORTS06/905220397/1048/SPORTS/Ailing Westland teen adopted by U-M softball team

SURPRISE!!

(If you're not impressed by the code, try copying and pasting it...then the real surprise will be presented to you!)

________________________________________
Wednesday, May 20th, 2009

First off, I forgot to include a tiny little correction I found out about at the doctor's appointment yesterday...

I'm not 5'2...I'm 5'3! Yessiree, I am in truth at my full height of Five Feet and Three Inches tall! I am now...Average!

Ahem, anyway...Mom just called and the Cardiologist ended up calling Dr. Moltz(Endo)and they both agreed to put me on Fludrocortisone, a corticosteroid. I've looked it up(Of course, you know me!)and apparently it's used for Adrenal Insufficiency and all that fun stuff but it's also used simply for Orthastatic Intolerance(Which is basically what POTS is)so I think we're covered no matter what the real cause of the low blood pressure is. In fact, it could be both so hopefully, at least this annoying cluster of symptoms will be gone soon.

You know...the dizziness, low blood pressure, headache(or worse headache)upon standing, tripping, bumping into walls and doors...etc, etc. All that fun stuff.

I'm not worries about side-effects...I hardly had any problems with the Cortef and I had some initial minor problems with the switch over to Prednisone but all in all, I think I'm on too small of a dose of steroids to have a lot of problems. Unless they put me on a high dose of the Fludrocortisone but I don't think they will.

But I'm sure I will have to look for some SPF 100 Sunblock or something for the summer.

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Tuesday, May 19th, 2009

The appointment went pretty well. The doctor was pretty nice and he thinks it could be that my Adrenal Insufficiency is causing me to not have enough blood volume. I got my blood drawn and we're checking my electrolytes. I think we'll just go from there and see what the results say. He mentioned a medication that could help if the AI is indeed the problem. So I guess we'll see. But I actually felt good coming out of that doctor's office, which doesn't happen that often with me so I think this is one problem that we will be able to take care of...I sure hope so anyway!

Anyways...I have a surprise! But it being a surprise and all, I won't tell you until I see fit to do so! I know what you're all thinking(Oh no, not AGAIN)but I haven't been able to surprise anyone since 'Mission: Surprise the Heck out of Jaclyn' back in March and I am very excited about getting to do something of the sort again.

So stay tuned and I'll let you in on it as soon as I have the results of the surprise!

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Monday, May 18th, 2009

I've felt pretty crappy all day so far today...I am feeling the usual crappiness but I'm having problems with allergies too. The fact that a big great tree that has been molting it's flowers lately is right outside our patio door isn't helping anything, I suspect.

Anyways, my appointment with Cardiology is tomorrow morning at ten o' clock. I'm not sure what they will do. I don't know if they will even do any tests tomorrow or if they will want to follow up in a few weeks and do any tests they might deem informative then. But just in case they want to do an EKG or Echocardiogram , I'm bringing an extra shirt! I can't tell you how much I dislike ultrasounds! They always start with the gel being really cold in the first place and end with me irritably telling the technician, "I'll do it!" while I swipe the towel out of their hands because they didn't get it all off and if, God forbid, there's any gel whatsoever left and it gets on my shirt and I didn't bring any extras...well, we have a big problem.

Don't ask me why, I'm just touchy about stuff like that. But all my little neuroses would fill up an entire book so let's leave it alone for now, shall we?

Anyways, I'll update tomorrow if I have anything to update about!

Monday, May 18th, 2009

~The Wacky Family Robertson/Kirkpatrick Stories~ ~Section!~

For the week of 5-11-09.
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Setting: Mom and I were in Mom's bedroom watching a TV show.

Subjects: My future career as a human pH tester and a couple glasses of water at various intervals of their shelf life, so to speak.

Background: When I'm breaking through, water becomes my best friend. I've been breaking through at least twice a day since my craniotomy in 2004...so I consider myself an H2O expert.

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So there we were, watching TV. I was breaking through so I was very thirsty but I had forgotten my glass of water I had been drinking from in the living room.

So I looked around the room and found two cups of water right by the bed that were old but when you're breaking through, you'd drink from a toilet bowl(as Mom likes to, crassly, say). Naturally, I picked up the glass that had the most water in it and took a sip.
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ME:*sputter* Oh gross, that tastes weird!

MOM: It's water Sam.

ME: Yeah, but it's OLD. (Like, DUH)

MOM:*rolls eyes* Okay then.
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I put down that glass and picked up the other one. While I took a tentative sip, Mom watched me with her eyebrows raised, waiting for the verdict. I held up a finger while I sipped then...
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ME: *smacks lips* That glass was approximately 48 hours old...it's passable.
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Mom burst out laughing and proceeded to make fun of me.
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ME: What's so funny?

MOM: Just the way you did that whole routine with the water.

ME: But it's true! The first glass tasted stale. I should know! I can taste the difference in the water in different cities too...I like Plymouth and Northville water the best.

MOM: Sam, that's ridiculous.

ME: Nuh-uh-uh...even the water from the kitchen sink tastes different than the water from the bathroom sink.

MOM: Okay. (She was humoring me, I suspect) So what, you just stand in the shower and drink from the head while you're breaking through?

ME: Why yes, I do. (Hi it's Ellen, I usually don't involve myself (on purpose) in Sam's funny stories, but I have to inject here that all of the water in all of Southeastern Michigan comes from one place...the city of Detroit. The water in Northville comes from Detroit, the water in Plymouth comes from Detroit, the water in our bathroom and our kitchen come from the same place. Sam is loony when it comes to water. I suspect most people with DI are.)

Sunday May 17th, 2009

The weather did cooperate!! Actually, it was rather chilly but the game wasn't canceled or called. The downside was that there weren't any dancing/body sliding tarp college dudes but the fact that WE WON more than made up for that!

It was a little nerve-wracking the first five innings...then in the sixth inning, the score finally went from 0-0 to 1-0! Then we scored some more during the rest of the game for a final score of 4-0! Which all means, next weekend Mom and I are going to see the girls play in the Super Regionals!

Today, I did the usual...I participated in the pre-game huddle but I also got to stand with the team while the players were introduced and while the National Anthem played, which was a first for me and was very cool!

I'm feeling okay today but I'm beginning to feel the storm that's coming tonight. My head is a little worse and my neck is stiff too but I'm just glad I was able to make it to the game because it was a very exciting one!

Don't get me wrong...of course, I'm still upset and discouraged from the recent pain management appointment. But, like the old cliche, life has it's ups and downs...and now this is life. Dealing with the aftereffects of a brain tumor. It's MY life and it's to be expected that it's also MY job to deal with the downs and wait for my stomach to catch up with me and most importantly, have fun with the ups while they last. For now, I'm at the top of a hill.

I can't wait around for the next drop. That's no fun.

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Saturday May 16th, 2009

Well, the game was called on account of rain last night but it was resumed today at ten AM and we won 11 to 3! Nice job girls!

Mom and I are still going to tomorrow's game and hopefully the weather will cooperate. However, last night it was very entertaining watching the guys who pulled out the tarp dancing and body-sliding on it. I have pictures but you'll have to wait anywhere from two to 48 hours for them while my computer gets it's act together.

Speaking of all this softball stuff...there is an article about the reason behind it all, Friends of Jaclyn, in the New York Times today! Here is the address-

http://www.nytimes.com/2009/05/16/sports/othersports/16northwestern.html?_r=1&page

Just copy it, paste it, and read it!

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Friday May 15th, 2009

Well, I saw the pain specialist yesterday...

It was not a happy visit.
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PAIN SPECIALIST: Okay, I'm going to give you ten Tylenol 3's...only use them when your headache is bad.

ME: My headache is always bad.

PAIN SPECIALIST: Well, only if it gets up to, say, an eight or nine out of ten.

ME: It's usually an eight.

PAIN SPECIALIST: Well, only use them if they're really bad.

ME THINKING: Check please.

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I don't know how to explain. I'm not trying to bash the doctor but obviously, she doesn't understand chronic pain all that well. I suppose it's hard for anyone to understand that if they haven't experienced it but it's not conducive to empathy when you don't LISTEN.

Yesterday, I walked away from the doctor with a prescription for twenty minutes of walking and sunlight a day and some calcium and fish oil vitamins. That would be fine if it wasn't ALL the doctor had to offer. I'm all for getting healthy and I know sun and exercise can definitely help you feel better. What I rather resented was that the doctor was acting like this would be the solution to all my problems...and the implication that if it wasn't, either I wasn't trying hard enough or I was making a big deal out of nothing.

I had to go to the ER Tuesday night because the pain just got too severe. It was raining and a storm was coming through and I couldn't do anything about it...I couldn't do anything to help myself. Forgive me, but I'm not too keen on the idea that for the rest of my life, a rainstorm means a trip to the ER. Maybe my threshold for pain has heightened but I'm NEVER going to get used to this. I don't want to have to get used to it.

Well, that's all the ranting I'll do for now. Mom, Alec, and I are going to the Regionals for U of M tonight, so I'll update tomorrow about the results of that!

Speaking of which, I left my camera memory card in the computer tower...I just never removed it after my umpteenth time trying to get it to upload photos. After about 49 hours of it just sitting there, the computer suddenly decided to upload! So I got pictures! I'll just show a couple for now...I'm not feeling that great.

Me and the Team after the Big Ten Championship Win!

At the banquet!

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Wednesday May 13, 2009

Sam is not feeling well today at all. She has started on the adult steroids instead of the cortef and it's upsetting her GI tract. She also has a bad headache because it's raining and they won't give her anymore vicodin. We see the pain doctor tomorrow. She's pretty miserable. So we are going to meet the team at Buddy's Pizza tomorrow night instead of tonight. You know she's feeling poorly to put that off. She's pretty upset, poor thing. _

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Tuesday, May 12, 2009

The banquet was tons of fun! I even talked to the team a little bit beyond the usual "Good Game' and 'Thanks for having me!' that I usually settle with. Most of you know by now that when I am getting to know people, I like to just sit there and only speak when spoken to. But I'm definitely becoming more comfortable with the softball team...tomorrow we're all getting together for pizza so that'll be a lot of fun!

Anyways, the banquet was, as I said, a TON of fun and they had mashed potatoes in the buffet so that made my eyes light up. Lasagna and mashed potatoes...it works when you need to put on weight like I do! But the girls on the Softball team have been awesome and it will only get better as we get to know each other! The Regionals start on Friday...Mom and I are going to the games on Friday and Sunday.

Of course, I don't have pictures yet but I'll get that worked out as soon as possible!

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Monday, May 11th, 2009

Oh, did I forget to update about the U of M/Big Ten Championship Game? Silly me.

We won!!! The U of M Softball Team are officially The Big Ten Champs! Regionals and other games of the pre-championship variety start on Friday and, head willing, we will be there!

Tonight the team is having a banquet and Mom and I are going.
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MOM ABOUT A MONTH AGO: Awesome, Coach Hutch just invited us to the U of M end of year banquet!

ME: Ooh yay! What's going to happen there?

MOM: Well, it's just a banquet to celebrate the end of the softball year, see off the seniors, it's a formal dinner-

ME: Wait, formal? You mean I get to wear my pretty blue dress that I wore to the FOJ banquet again?!
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Since then, I've gotten excited for more than the fact that I get to dress up...obviously.

I'll take loads of pictures and post them...as soon as I convince Dad to let me borrow his computer again. I had it last night and this morning but I got caught up playing Sims 2 and didn't get around to uploading any photos...

Don't judge me.

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Sunday, May 10th, 2009 - Mother's Day

ME: Happy Mother's Day...

MOM: What?

ME: Happy Mother's Day.

MOM: What?

ME: HAPPY MOTHER'S DAY!!!!

MOM: Oh thanks...I forgot I even had any children...because none of them are here today. Except for you of course.

ME THINIKNG: Oh boy, here we go again.
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Most people observing Mom and I from the outside are probably under the impression that, at best, we are the poster kids for the 'Live and let live' relationship most teen girls and their moms seem to have. At worst, we ignore each other and speak in terse one word sentences or have conversations like the one above because we hate each other and want to interact as little as possible.

Nuh-uh-uh...Mom and I simply have our own unique brand of communication. We have hundreds, if not thousands, of inside jokes that we like to refer to that, naturally, no one else remembers or gets. Mom is used to my near muteness and can usually interpret my different types of shrugs, facial expressions, and inaudible mumbles. I’m used to Mom’s insane and kind of stupid jokes. In fact, I’d almost say they were hilarious. Like this conversation that took place in a Meijer Store near our house.
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ME: Mom, where’s the bathroom in this Meijer?

MOM: Why, are you dumping?

ME: SIGH...no, I’m BREAKING THROUGH, thank you very much. (You can probably guess why I prefer the term ‘Breaking Through’ when I need my Desmopressin. ‘Dumping‘ is a rather unfortunate turn of phrase, don‘t you think?)

MOM: Well, I don’t remember…I’m still used to the Meijer in Wyandotte.

So we walked around to the back but didn’t find it.

MOM: Hmmm...

ME: Ooh! Maybe it’s there, under the big neon ‘Plumbing’ sign.

MOM: *laugh* I get it, it’s a joke!

ME: I know...I made it.

MOM: I know.
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Yes, when I’ve just had my 13th brain surgery and not feeling up to my usual standard of humor and wittiness, Mom’s standard is a standard I can always fall back on.

Mom and I usually go crazy without each other because no one else thinks we’re funny! But to each other, we’re better than Jeff Dunham with our favorite puppet(Mom likes Achmed, I like Peanut). One word that has no meaning to other people and leaves them scratching their heads can have significant meaning to us that leaves us in stitches.
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MOM: Smile Sam, I want to take a picture!

ME: No! You never let me take a picture of you!

MOM: Smile.

ME: No.

MOM: Cheeeeese...

ME: Cream...

MOM: Seriously, smile Sam!

ME: NO!

MOM: Hogadog.

Wherein I immediately burst into a psychotic fit of laughter. Then this picture came to be.

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Anyways, you get the idea.

If you don’t, at least Mom and I do.

Other than all that….she’s a pretty cool Mom. She knows I’m joking when other moms would probably flip a lid or two.
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ME: My head hurts really bad…

MOM: When’s the last time you took a Vicodin?

ME: Ummm, five hours ago.

MOM: Okay, take another one if you want.

ME: But it hardly helps! I’ve built up too much of a tolerance…I only get, like, a two second buzz now.
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One thing really annoys me is when Mom says she’s NOT a good Mom. Although, I suppose that’s one of the good things about her. She apologizes for any mistakes she knows she’s made and she often does know when she’s made one. She thinks she isn’t perfect but I think she is. I think perfect isn’t about being without any faults…but making up for them. My Mom is perfect in the way that somehow, I don’t care about whatever might be not-so-great about her because she’s awesome in every other way. I suppose that’s unconditional love.

I love my mom too much NOT to think she’s perfect.

Friday, May 8, 2009

Sam is feeling really crappy today, she slept for about 5 hours this afternoon and is extremely crabby tonight. We had a great time at the game the other night, U of M beat Ohio State both games and they will at least share the Big Ten Title. Way to go girls!!!! We are going to relax this weekend and gear up for the U of M softball banquet on Monday and dinner with the team in Livonia on Wednesday. That will be fun!!!

We are asking for prayers for Alec, who is going thru a very tough time right now. He's ok but please just pray for him. We love you Alec!!!!
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First off, new W F R/K Story!

It's been a pretty good day today. I felt well enough to get out of the apartment for a while...Mom and I went to a specialty store that has U of M(YAY!)and Michigan State(Blah)stuff in order to stock up for the big game against Ohio State! This will be a pretty nerve-racking game, as it will determine who's the number one ranked team in the Big Ten Conference...right now U of M and Ohio State are tied!

I'll take pictures of course, but Mom's computer is still being stupid and won't let me upload any new ones. I had to use Dad's computer to upload the Spring Break ones but now I don't have access to his computer....grr. I'm also mad about it because of the newest surprise...

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ME: Hey Mom, where'd you put my growth hormone pen? I can't find it and now it's probably gone bad.

MOM: Oh, I put it in the cupboard...I decided that since we have more vials than we thought at first, we might as well just stop them now.

ME:(brief pause)And WHY didn't you tell me this??

MOM: Well...I didn't want to make a big deal out of it...

ME: HELLO??? This is what I've been dreaming about since early 2004!

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So yeppers, you read right....I am officially OFF growth hormone treatments! At least for six months and maybe forever!

So why am I mad? Well, I took my pen to Lily and Luke's house this weekend and we had a bunch of fun getting my revenge. I took some good pictures but of course, I can't upload them! Hopefully soon, I'll have access to Dad's computer again so I can get those on there....Lily and Luke really took to the challenge and the pictures turned out great!

As soon as I can...there will be a picture explosion! 'Cause when you're at home sitting on your butt all day you get bored...when I get bored, I take pictures! So there's a lot of funny stuff(usually to do with Abbey)that I've captured and want to share with the rest of the world.

Because I know you are all just dying for more pictures of my flabby and diabetic cat.

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Monday, May 4th, 2009

Well, my heart has been acting up today. Just thudding really hard...so hard in fact, that when I was laying on the couch with a blanket this morning, it was making the blanket move. I was extremely groggy all morning too. Not quite asleep but I was way too tired to move at all. I'm a little better now but I'm still fatigued. Mom called the Cardiology department at Childrens and I have an appointment on the 19th so hopefully, we can start treating the POTS soon. First, they have to verify I have it...that involves something called a 'Tilt-Table Test' which admittedly I'm not too keen on.

But we'll get to that when we get to that, I guess. I really am pretty tired so I'll write later...for now, let me just say that the U of M Softball game Mom and I went to on Saturday was AWESOME! GO BLUE!!!

Friday, May 2nd, 2009

So...new background, new music, and new pictures in the photo album! Feel free to take a gander.

Anyways, today I feel slightly better. Mom and I are going to a U of M game later on...it's against Iowa. Should be fun!

Back to my new layout though...well, you can probably all figure out why I picked gray as the new background. Grey is the awareness color for brain tumors. Also, the pictures in the album are pretty self-explanatory. The song, however, might not be so obvious.

Well, Mom heard it before I did. The first time I heard it, Mom and I were in the car together.
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The song was playing and within a couple notes into the chorus...

MOM: Oh! I love this song!

ME: Why, in particular?

MOM: I don't know, it's just cool.

ME(AFTER HEARING MORE OF IT): Hey! This reminds me of 813! (for those of you that don't know...813-8 letters-3 words-one meaning)

MOM: Yeah, I know...that's why I like it!

ME: You said you like it because it's cool. How come you didn't just tell me about the 813 connection?

MOM: Because you know you would've just said, "But it doesn't have the eight!", if I said it...obsessive perfectionist that you are.

ME: True...
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Anyway, 8 or no 8, the song immediately put One Meaning Couture(onemeaningcouture.com)into my mind.

So, there you have it. The meaning of this month's website design!

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Thursday, April 30th, 2009

I feel horrible today. My head is just hurting so bad today. Really, frankly, and seriously, I'm sick of it. People like to say that what doesn't kill you makes you stronger and I have seen that...I know having a brain tumor made me stronger. But I can't quite see the point in having such bad pain all the time. Because I've had a headache for a year and a half straight...literally, really, and seriously. I think I've toughened up all I can in respect to chronic pain and I don't see what other purpose can be served...I think I'd be stronger without the headaches now. I don't think they are helping me at all and if only I were having them for a reason, maybe I'd be willing to put up with them. But we don't even know exactly why I even have them in the first place. My headache doesn't make sense...in any sense.

Sorry for all the ranting. I don't feel like doing anything else today but I felt like maybe doing a short update...and this is what spewed out.

Tomorrow is my big Monthly Caringbridge Makeover...May is Brain Tumor Awareness Month so you can bet I'm going to squeeze all I can out of that. But you'll have to wait until tomorrow! But I am happy to announce that you don't have to wait till tomorrow to read our latest W F R/K Story...

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Monday, April 27th, 2009

Mom and I went to see Simonne yesterday...here are some pictures!

This is Simonne and I in the gift shop.

Okay, Mom and I went to CVS and looked around for about twenty minutes for a card but we couldn't find one we liked! So this is what we did. It says 'We could not find a card'...

'But Happy Birthday anyways!'

'Made by Ellen and Sammi'

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Then I wanted to take a trip down memory lane and then be able to share it with everyone!
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Almost three years ago...

And yesterday!

Almost three years ago...

And yesterday!

We'll be going to see Simonne again on Thursday!

Today, my good spell broke unfortunately...I was feeling good again this morning but now my head is hurting horribly again and I'm really tired. That's about it for now I suppose...I'll get around to this weeks W F R/K Story as soon as I can!

Oh, I almost forgot! Friends of Jaclyn was nominated for an Emmy!!!!!! The Award is being presented tonight...let's hope that The Murphys' and FOJ get all the attention and recognition they deserve! Also, on that track, the U of M Wolverines beat Winsconsin in two games on Saturday....GO BLUE!!!

Friday, April 24th, 2009

I'm still feeling pretty good. It's like back in March right before the banquet when I had that good spell. Hopefully, this one will last longer than a week! My head is better but the main thing I'm noticing is that I just have a lot more energy...a lot of the time, I'm just so fatigued I don't feel like doing ANYTHING. But this week, I haven't been that tired...far from it, I've actually been asking Mom if we can go places! Usually, Mom has to drag me out of the house.

Hopefully, this continues for a while!

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Thursday, April 23rd, 2009

First off, a very Happy Birthday to my awesome friend Simonne!! Please pray that she has a great day...she was admitted into Childrens yesterday for a tune-up. It's her Sweet Sixteen and Mom and I are going to visit her either tomorrow or Saturday. Can't wait to see you Simonne, HAVE A VERY SWEET SIXTEEN!!!

I've been feeling pretty good acually...the last couple days at least. I haven't been as tired or as headachey as usual.

One thing I didn't mention on Tuesday was that since we are pretty sure I'm not going to grow much taller, I will be switched from the Cortef to Prednisone. As soon as my current Cortef prescription runs out, we will fill the Prednisone prescription. We're not expecting any side-effects...one thing Dr. Moltz said to watch out for at first was a change in the amount of fluid stored in my body. This could also result from not taking the GH anymore so I just have to be extra careful not to drink too much or too little until we know how much I will be affected by the medication changes.

Well, that's pretty much it for today!

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Tuesday, April 21st, 2009

Today I went to school and I also had an Endocrinology appointment. I've felt better than yesterday at least but it has been raining, misting, hailing, and it's supposed to snow here tonight so I'm sure my ICP was all over the place today!

The Endo appointment went okay...took FOREVER though. I've grown one centimeter since last July...today, Dr. Moltz told us I've, in all likelyhood, reached 99.2 percent of my total height now. My bone age is now fifteen years and nine months, which is only eight months behind, versus the almost three years behind I was at diagnosis. I am now about five-foot-two-and-a-half.

Mom is more upset than I am. Apparently, it's okay if one of her daughters is born with two collar bones instead of one and the other is born with a brain tumor...but she will be darned if one of them ends up shorter than her lofty five foot seven!

But I don't really care...the GH shots hurt like heck! This was the best part of the appointment....Dr. Moltz told me I just have to finish out my current stock of Nutropin, then I can take a SIX MONTH BREAK!!! If, at the end of six months, I am making enough Growth Hormone on my own, then I don't ever have to take another GH shot again! However, there is the chance that I will need it for bone density and muscle mass as an adult. But it would only be a very small dose and the only reason I don't like Nutropin shots is because they sting! So, regardless of how the next six months go, I'm happy!

Plus, I have more pressing issues than being a tad short. I mean, it's not that short...put me in a room at Camp Sunshine and I'm one of the tallest Brain Tumor kids there! Now, my t-shirt bearing the message 'I'm not short...I'm fun-sized!' will never have to be thrown away because I will always be fun-sized! I'll have to get a picture of me in that shirt up on here...

And I mean...come on, how many people get to say, "Nah, I'm just short because I had a brain cyst growing off my pituitary stalk and as a result, I got Panhypoptituitarism."?

Most people just say, "Ah well, my mom was short too."

That's just boring.

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Monday, April 20th, 2009

First of all, Happy Birthday to my older sister, Caitlin!! Happy 21st Caitlin....have fun! I won't post any pictures or tell any embarassing stories since it's such a special day.

Well, I'm home from my crazy cousin's house so I'll have the time to update more! However, it was extremely fun over there and I got a bunch of great pictures! I'm stringing them all together to form a very special W F R/K Story for this week...they are pretty funny!

I feel really horrible today because it's rainy and really cloudy out...it's even supposed to SNOW tomorrow. The weather seems to affect my BP too...today, I took it while sitting-106 over 65 and my pulse was 93. I took it again after standing up-86 over 63 and my pulse jumped almost 50 beats per minute, to 150. So I'm really dizzy and out of breath today too.

Anyway, here are all of us cousin's last Saturday at an Easter Egg Hunt at a park...Alec came by later so he's not in the picture.

Here's Becca(Lily and Luke's cousin on their Mom's side and such a sweet and cool girl!), Luke, Lily, and me! See the W F R/K Story for a picturesque portrayal of our antics! I'll put it up later tonight...I can never sit at computers for too long, especially when the weather's bad...it hurts my back so look for the W F R/K Story later!

Friday, April 24th, 2009

Thursday, April 16th, 2009

Well, as all of my Camp Sunshine friends know....

Starting this year, CBTF has concluded that Brain Tumor sessions at Camp are to be a 'once in a lifetime' opportunity and a 'once in a liftime' opportunity only. All of us are crushed by this pronouncement and can't imagine not going to Camp this summer but we're doing all we can to correct the situation!

The day before yesterday, my aunt Ruth and I were talking about The Letter and The Camp Sunshine Dilemna. Ruth was saying how we should write to people and ask them to somehow sponsor some sort of get-together for all of us Brain Tumor Alumni....whether it's at Camp or not.

Like we have said the last two years at the very rainy Pumpkin Fests....We bring the Sunshine ourselves to wherever we go! We just have to make sure the people are added...

Anyways, later I was thinking it over and thought, "Hey, that's not a half-bad idea..."

Just before we got The Letter, I had been thinking about branching off in a new direction in respect to the Camp Sunshine Talent Show. As in....maybe reading an essay or story instead of a poem. I had an idea in my head about what sort of essay it was going to be when we got The Letter.

I've still been working on it here and there ever since, even though my chances of reading it at Camp had been substantially slimmed, and when Ruth put this new idea in my head...well, the two ideas sort of collided.

And turned into....

Mission: Snow Globe! I can't stress enough how much 'Still in the Works' this whole thing is...it's been two days and as of now, all I have is the idea, a little bit of the essay completed, and a bunch of my favorite people on Earth who like the sound of this idea and want to help!

But hey, I really think this could work.

You are probably wondering, 'What exactly IS this?'

Well, basically, when I finish my essay, I'm going to send it out to a bunch of people who might be able to help us out.

And, basically, what we need is a place to get together, the means to get everyone to that place, and a lot more.

I think you can all tell that there isn't much to this idea quite yet but that's where you guys come in! ANY ideas, ANY advice, or ANYthing at all would be appreciated.

_______________________________________Tuesday, April 14th, 2009Sorry for the serious lapse in updates....I've been at Lily and Luke's house and there simply isn't any down time over here! When(or if....)I get home, I'll do a proper update. I also have some awesome pictures from this weekend and I'm anticipating more as the week goes on....Anyway, today and yesterday is and was(respectively)bad because we're having crappy weather here in Michigan. Headache, nausea, dizziness....blah, blah, blah, same old, same old. However, somehow, I actually managed to sleep in until almost eleven am....something I haven't accomplished in months because of the POTS. I hardly had any palpitations last night and it was awesome! Be still my heart....with me, I mean that literally most of the time. Unfortunately, a lot of old sayings like that ring true for me, or at least have in the past. You know, like 'I feel like my head's gonna explode' or the fact that rainy weather always DOES put me in a bad mood.

Sunday, April 12th, 2009

Sam is at Ruthies, I've been working a lot and Alec is having fun at home, videoing and watching whatever he wants, sleeping a lot and babysitting Abbey. 2 more days and then I get a day off. Sam is probably coming home tomorrow. We had some good food at work today and had a lot of fun. We weren't too busy which was nice. Unfortunately I woke up late. I was sleeping on my phone and the alarm went off for an hour without me hearing it. When I woke up, it was bright and sunshiny out. That's not good. But it was fine. I think Sam is feeling not so hot but she is enjoying being with people other than her mother...and that's always a good thing. Today we have a little prayer list....Army, a brave boy who was just devastated by a horrible brain tumor passed away over the weekend CP: Armstrong. Mary Decker, a nurse at Childrens who knew more about shunts than anyone I've ever met, passed away from a brain tumor yesterday. She especially knew a lot about lumbar shunts and she will really be missed. And pray for Sam and Alec's dad. He is doing well but needs support. And one more little thing, pray that all the brain tumor alumni families will be together this summer, at Camp Sunshine, where we belong. Ellen out!!!

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Friday, April 10th, 2009
Well, I decided to update today. I'm not quite as tired so that's a relief. However, I had some horrible stomach pain this morning for some reason.

And of course, my over-analytical mind was going haywire. Here's a sample,

"Holy crap, this is the worst stomach pain I've EVER had in my life! Uh-oh...it's in the lower right quadrant, it could be appendicitis! Okay, don't panic....I'll just take some pain meds and if I get a fever or start to throw up I'll call Mom and she'll take me into the hospital. Yeah, that's it, and until I know for sure...I won't eat anything in case they have to operate! No big deal, what's an appendectomy next to a craniotomy? I just hope they have grape flavor chapstick. Oh, this hurts so bad!"

So yeah, pretty much. I feel a lot better now though, so my over-analytical-ness wasn't needed. I guess I'm allotted some regular old teenager stomach aches now and again.

I guess my point for today is when you have chronic conditions, it's a part of life to automatically plan ahead. Especially with a shunt...there are so many different things you have to look out for in respect to a malfuntion. It's not a matter of, "What, I have to have surgery??" anymore. It's just a matter of, "Okay, what can I do to make this whole shenanigan go quicker so I can get this stuff over with?".

When you do something over and over again for six years...it's inevitable that it becomes habitual.

The next step is figuring out how to deal with it and live anyway in spite of it.

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Thursday, April 9th, 2009

Sorry for the lack in updates...I've been really tired and just plain unmotivated lately.

Nothing new going on except Alec has an MRI tomorrow....he's still having bouts of horrible back pain and we're still trying to figure out what the heck is going on with that. It's at nine thirty at night at a local hospital so thank goodness he's not NPO! I'm still having headaches...this morning, my blood pressure was 91 over 64 and my heartrate jumped from 121 to 151 when I stood up. I have an Endo appointment on the 21st so we'll mention it to Dr. Moltz and see if she has any suggestions.

Anyway....I haven't posted any pictures in a while. So that's what I'm doing tonight!!

This was how Abbey was hanging out right before we left for DC last month. Now, doesn't she look great? You can almost see the pounds melting off in the picture(scoff).

Well, in the past I've posted a picture of Amber but this is my guinea pig, Amy!

This is Tonks.

Alec petting Abbey.

Well, that's it for now...Alec and I are going to spending Easter at Lily and Luke's house so I'm not sure when I'll update next....but it'll be a fun weekend!

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Monday, April 6th, 2009

Right, so I felt good enough to go to the game yesterday! So Mom took a half day off work and we were soon on our way to Ann Arbor!

The first minor, tiny blip was when Mom practically ripped off her front bumber(at least, that's what it sounded like)by bumping into a parking space divider. I looked at her exasperatedly and said, "Good thing no one's in the cars next to us...that would've been embarrassing."

Mom responded with, "Yeah, well, there's a dip in this spot that made my car fall forward!"

I opened my mouth to respond but Mom beat me to it,

"I know, that just makes ME the dip."

So, after that, we got out of the car and walked over to the softball arena and noticed that it was completely deserted.

Except for a family that had drove for about an hour and fifteen minutes to come to the game.

A family who, like us, had forgotten to check the online roster to make sure the game hadn't been cancelled.

Because it had.

Oops.

To make that shining moment even more...shining...Mom's phone rang and it was her work saying that her replacement never showed up.

MOM: Aw, now I have to go back to WORK?

ME: Aw, now *I* feel like a dip.

SOLUTION: Plan ahead more aquedately. More specifically, check to make sure the game is actually happening, be sure to pick a reliable person to take over your shift, and don't park in spaces with dips in them.

Well, anyway, after I got home I started to feel crappy. I feel really bad today because in True Michigan Fashion...it snowed last night. So I'm more fatigued, headachey, nauseous, and dizzy.

Good thing we didn't plant those tulip bulbs. But seriously, was it only a week ago that it was almost 60 degrees??

P.S. Check out the new W F R/K Story!

Saturday, April 4th, 2009

I'm feeling better today but tomorrow a low front is going to be coming through so I'm not sure what's going to happen then. I'm hoping to feel good enough tomorrow to attend the U of M softball game....but on the other hand, I was able to watch today's game and they won, 3 to 1 against Purdue! GO BLUE!!

I must say, I was MOST impressed when one of the girls hit a home run and that ball actually landed smack in a garbage bin! Very nice.

I'm still taking my blood pressure every so often and the results are always the same. One time, my heart rate was 102 sitting and when I stood up, it jumped to 135. My blood pressure doesn't jump around that much, but I think that's just because my heart is pumping hard enough to prevent it for the most part. But I still get dizzy, see spots, and occasionally bang into a wall or two.

I've been researching POTS more and it's a form of Dysautonomia, which is quote,

"Dysautonomia is a medical term often utilized for a group of complex conditions that are caused by a dysfunction of the autonomic nervous system (ANS)."

Basically, it can cause problems in every apsect of your body. It affects the brain and of course, that causes havoc with everything else. Basically, POTS just affects my ability to stand upright....when I do, unlike a normal person's system, I can't compensate for the change in position. My blood pressure takes a dip and my body immediately responds by speeding up my heart beat. Then because of the tachycardia, I get dizzy and I can feel pressure building up in my head, and so on and so forth.

So that's pretty much it. Also, when I'm sleeping, my blood pressure drops just because I'm lying down. The nurses at Childrens were always waking me up and making me sit up because while I was asleep, my BP would go ridiculously low. And you all know how I feel about nurses waking me up!

Also, the plain truth is, while I'm sleeping, I'm not drinking! So I get dehydrated and both those components are causing the early morning palpitations, I think. So, off to the Cardiologist we go!

By the by...does anyone out there know how to pronounce Dysautonomia? I can rattle off words like Oligodendroglioma, Postural Orthostatic Tachycardia Syndrome, and Levetiracetam without missing a syllable but THAT particular word confounds me!

It's maddening, although Mom thinks it's pretty funny.

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Friday, April 3rd, 2009

Oh my word....Caitlin actually LIKES my page this month AND she said the pictures were 'sweet'.

Yesssss.

Okay, so it's thunderstorming today and that's never good. My head's hurting a lot more than usual.

I also went to see my normal regular doctor yesterday because I was so out of breath from the low blood pressure, I couldn't go to school. It has definitely been getting worse, the whole POTS thing. Mom bought a blood pressure monitor two days ago and we've been having a lot of fun with it.

Yesterday, while I was out of breath, it wa showing that my heart rate was about 125 or so while I was just sitting. Then, when I stood up, it'd go up to almost 160! Not so good. Or normal.

At the doctors, they took my blood pressure and it was only about 85 over 65. My jaw dropped.

Not because it was so low....because I actually exhibited a symptom at the doctors! That hardly ever happens! I was fully expecting a healthy 120 over 60...even though at the best of times, my blood pressure is usually about 100 over 50.

However, yes, that low number did alarm us a little, so now, we're probably going to see a Cardiologist at Childrens. I think if we could just get my blood pressure up to a more normal number, it would stop the palpitations and dizziness and Mom would be sure to get the security deposit back on the apartment, as I wouldn't be denting the walls and scratching the paint off with my hard(metal)head.

Before I go, I have two things to say.

If you are having problems signing my guestbook, as I hear some people are with the old caringbridge pages, just write your message and try to save it. If it comes up with that annoying little yellow dude giving you a rasberry, just press go back and then try to save it again. It usually works and if it doesn't, just try it a couple more times and don't worry, you don't have to re type your message. Just click the enter button again.

I also would like to extend my deepest and most somber apologies to anyone who is in my cell phone's phone book. Mom wanted to use my phone to send a message to someone(don't ask me why because her own phone was right there)and I most unwisely handed that real live piece of technology to her.

Two minutes later, I hear her calling my name.

I walk in her room and she's laying in bed, wearing a most sheepish expression on her face.

She then proceeded to tell me that she had sent EVERYONE in my phonebook a text message with a mysterious and inexplicable numeric code. Actually, it was a phone number but moments later, I was getting a tirade of messages back. The messages ranged from 'Who is this?' to 'What is THAT??' to 'Who the heck is Pogo?' to 'What have you been smoking?'. Okay that last one wasn't true but it took me a very long time to reassure everyone that I would NEVER be so callous as to wake them up at ten thirty on a thursday night for no reason.

That would be my mother.

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Wednesday, April 1st, 2009

Part Two

All right...so....

Well, I picked the color pink because that's Caitlin's favorite color and her birthday is this month! I don't really like pink so I figured I'd use it this month for Caitlin!

I'd only put all pink on my caringbridge for you, Caitlin.

That's also to account for all the Caitlin related pictures...Zoe is Caitlin's cat and, considering Caitlin's trepidation every time I use a picture of her, I think the fact that I used her cat instead of her in the album constitutes as a present!

Now the song...since Camp last year, Heather and I had exchanged E-mails right up until she went into the hospital for her transplant. We'd ask each other questions to try and get to know each other better, like 'what are your favorite colors' and such. We talked about our favorite music at one point and Heather said that she liked Rascal Flatts, particularly this song.

I didn't actually hear this song though, until Friday. Mom said I could buy some music for my iPod as an anniversary gift(if you know me well, you know that new songs for my iPod make any day perfect!). I got down to my last song and was trying to figure out what I wanted to get....then I remembered that Heather had told me about a song she liked. I like Rascal Flatts too, so I went back to my E-mail and found the title of it, found it on iTunes, and clicked on that little 30 second demo you get of songs.

Well, right from the first sentence, I absolutely fell in love with it. I can only compare it to the reaction I had to my first Regina Spektor song! And if you guys have ever seen my facebook page, you know how much I LOVE her. Just from the first note, the first word, I knew I would love this song completely. And I do.

Pretty much, music is my life. I relate music to things like some people have sounds or smells that remind them of a certain place or person. I remember knowing all the words to songs and belting them out when I was just three. I've always loved music. When my headaches are horrible, music is the one thing that won't make them worse.

One time in seventh grade gym class, I completely flabbergasted everyone who thought they knew me by rapping all the words to an Eminem song.

But anyways...music, to me, is the ultimate way to connect with someone. I don't think I'd ever be able to live without it.

Because some things don't stay constant...really, most things don't.

But I can always sing, hum, or sound in my head a tune that I've memorized and I'll always have that.

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Part One

This is Ellen writing...Sam hit her head on the wall and has a mild concussion-

Ahaha, had you going, didn't I? I didn't want to put you on too long though 'cause I'm a nice person! Happy April Fools Day....anyways, it's not COMPLETELY a lie. I did hit my head on the wall again! Same place as last time but no bruise, thanks very much. But while my titanium plate was snapping back into place, I was thinking two things...

1: It's WAY too flippin' early in the morning for this!

2: Well, I can at least use this to play a minor prank on my readers....

So there ya go. I'm having another crappy day today so all I have the energy for is an E-Prank.

And here's the April Layout of my page...I'll explain everything later if I feel like it but I definitely will soon, whether today or tomorrow. I'm just really tired, headachey, and out of breath also because of the POTS.

So hopefully later, I'll feel like writing some more.

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Tuesday, March 31st, 2009

I have just learned that Russell's page is
www.carepages.com/carepages/CareForRussell

Please take a moment to stop by and offer his family some comfort. I never met Russell or Erin either, but as a lot of the adults from Camp have been saying this week, I've noticed....we are all family and the kids are all our kids too.

Well, it's the last day of March...suffice to say that this has very much been the most roller-coaster-istic four weeks of my life.

I was happy beyond belief at the FOJ banquet.

I went to my first U of M Softball game...that was fun, yet the thought that Jaclyn and Heather were supposed to be there with me was always in the back of my mind. That had been the plan since October at the Pumpkin Fest. It was precarious at best, considering that it had been about five months away but I was looking forward to more time with two of my best friends. But it allowed my mind not to focus on the fact that, just two days prior, Heather had died.

The day after I got back from the game was the worst day I've had so far, in contention with Heather's death...including the funeral. At the funeral I had my Camp Family with me. That day, for some reason, I just felt really alone. I had that Neuro Ophthalmology appointment and I had to get my eyes dilated. I guess the act of my eyes tearing up already from the drops let loose the real tears and I broke down right in front of the intern. He, the poor thing, of course was a little concerned and alarmed, asking if my eyes were hurting and Mom told him that I simply wasn't a morning person. True enough, but that made me a little mad. I understand that Mom was probably trying to give me and my grief some privacy but at that moment...all I wanted was for everyone to know. I wanted to just run to the middle of the hospital cafeteria and scream. Scream so loudly that everyone couldn't help but to feel what I was feeling. Because if they felt that, just for a moment even, surely, they would do more to help us. Kids with brain tumors. So that teenagers like Heather and Russell, a child like Erin, wouldn't have to die anymore. So that people wouldn't ever again have to feel what everyone who loves Heather, Russell, and Erin have been feeling. Surely, if they experienced it...they wouldn't want it to continue...everyone would want to help and stop it once and for all. That was my track of thinking that day, anyway.

Then at Heather's funeral, it was unbelievably sad...but so beautiful. It was a source of great closure and comfort to me, truly, but always marred by the ever present query....why the HELL did this happen? I know I wouldn't have been able to do this without being with everyone from camp that day. I don't think Mom or Alec could've done it either...we, The Camp Sunshine Family, all needed each other and thank God we were able to be there together.

All righty....well I guess I just inadvertently spewed out the update I said I was going to save for tomorrow...oh well, I guess today ended up being the right day. That's not the whole April Surprise though. Some things will still be happening tomorrow...new song, new pictures, and a new backround! Maybe a story or two explaining my choices.

So anyway, my new injector pen is working just fine, thanks for asking. In the injections department...I have very recently discovered that I can do my Desmopressin injection in my stomach now! You'll probably thinking, "And you're happy about this, WHY??" but I mean, it's Desmopressin. I sorta, kinda, just maybe need it and it doesn't sting like the growth hormone does.

I'm always perfectly happy to 'forget' to do my GH shot(oops, did I just add those "'s?)and I'm even more happy when I have a perfectly good excuse. Say, the people at Mom's work put it in the Freezer instead of the Fridge or the shipment was just plain late. Hey, don't look at me like that! I like the height I'm at anyways. I do it MOST of the time....

As I was saying, before, I never had enough fat on my stomach for it not to seriously hurt for the needle to go in, but apparently I'm putting on some body mass! Also, if I do my injections too much in one spot, it dissolves what little fat I DO have on my person and then the medication doesn't work as well.

And I get this weird looking little indent on my leg.....

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Monday, March 30th, 2009

All righty....a few exciting things happening here today.

1: I got a new Growth Hormone Injector Pen yesterday.

Okay, okay, I know that's not top news but the last one was going funny on me and I was more than a bit nervous about it....you wouldn't want something that's attached to a needle that you just poked into your leg and/or stomach to malfunction mid-injection!

2: I'm going to be watching one of my favorite shows on AN ACTUAL CABLE CHANNEL tonight! Sadly, I will be watching it alone, because I alone have taken the time to keep up with 24 on the Fox Channel website. Alec and Mom, you traitors.

Well, that's big for me! I think you guys will like the next one at least though....

3: There is a real live, bona fide, non-mini, new W F R/K Story up above!!!

Yeah, I thought you'd like that last one.

Well, anyways....I've been feeling really bad the last few days. Headache, nausea, dizziness. It's a bit worrisome because my back is all swollen and it feels like edema. The fluid that was on the back of my head after that ICP monitor in February of 08, previously gone, is now back as well.

You may call me Squishy.

But I know Neurosurgery won't do anything because I'm not puking my guts out or screaming my head off because of pain. I don't know what's going on exactly, but stay tuned.

Mom said I would update about Heather's funeral....I will, but on Wednesday, the first of April. I have some things planned for April and I want it to all be in one big update, not scattered all about. I know, I know, it's another surprise. Please keep the Oney's in your prayers. Also, Camp Sunshine lost two more kids in the last two days....please pray for Russell's family and also Erin's family. I don't know if Russel has a page but Erin's is www.caringbridge.org/visit/erinroderick

Also, please pray for Kara, who is in the ICU trying a new treatment because her headaches are so bad...she has Chiari Malformation, something I had a couple years ago but never had any problems with. Her page is www.caringbridge.org/oh/kara

I quote the penguins from 'Madagascar' when I say,

Well, this sucks.

Monday, April 6, 2009 4:05 PM CDT

***********************

Setting: Mom's living room(a lot of stories seem to take place here, don't they?). I was sitting on the couch(which also usually seems to be the case)and Alec was sitting in his gaming chair(which is nearly always the case).

Subjects: The crazy shouting guy, who either lives in our apartment building or just knows someone who does, and my contempt and extreme annoyance for said crazy shouting guy. And Alec's very amusing and quick, yet at times unintentional, wit. Seriously, if you laugh at him and he wasn't trying to be funny, he gets REALLY mad because he thinks you're teasing him. But the kid's just naturally funny!

Background: This guy was shouting, at one in the morning I might add, outside our building. I was mad because it's hard enough for me to sleep, what with the headaches and POTS, and I don't need this unknown man's woes to add to my insomnia! I also don't want to give the impression this happens a lot...it doesn't. It was obviously a friendly shouting match between two friends and it hasn't happened since.

*********************************
*********************************

The next day....

ME: Jeez, did you hear that guy last night?

ALEC: Yeah....what was that guys problem anyway?

ME: I don't know, he was shouting someone's name over and over. I think he was saying 'Rachel'...maybe 'Richard'.

ALEC: Maybe he was shouting,"SHARON!!!". ______________________________________

I burst out laughing and, because Alec was really trying to be funny, I wasn't killed for this could-have-been offense.
______________________________________

ME: So, you got that from that one episode of 'Hannah Montana' right?
______________________________________

Alec looked at me like I was stupid and also, he was resenting the implication that he watches Hannah Montana...we used to but we don't really like it anymore. We feel that Disney Channel is slowly but surely going down the same path as Cartoon Network.
______________________________________

ALEC: NO! I got it from...what's his name...Donny Osmond! ______________________________________
Okay, so when I started laughing at that, I admit, it was in a bit of a teasing way...but come on! The kid's just funny! For all you youngins out there who haven't watched that episode of Hannah Montana...who Alec meant was Ozzy Osbourne. I don't know what, when, who(well, obviously, it was someone named Sharon, but beyond that, search me!), or why he was compelled to yell "SHARON!!!" but apparently, the exclamation is sorta famous. Famous enough to be on an episode of Hannah Montana.

Saturday, April 4th, 2009

Saturday, March 28th, 2009

All righty, I know because of the fact we haven't had internet for two weeks, we haven't been able to post a new W F R/K Story....and I know how much everyone must be missing them! So I'm going to add one now but since it's almost Sunday, I'll just add this mini one and resume normal W F R/K activity on Monday.

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Setting: Mom's Living Room. Alec and I were sitting on the couch watching the Kids Choice Awards for the first time.

Subjects: One of Alec's and my favorite bands of all time and the fact that they lost to a band we don't like all that much, contrary to popular belief.

Backround: Alec, Mom, and I all LOVE Linkin Park. Always have, always will. And while Alec and I allow that some of the Jonas Brother's songs are catchy, the plain truth is we like Linkin Park better!

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ME: What?? The Jonas Brothers?? Over Linkin Park??

ALEC: I know! America is crazy!

ME: Seriously, how does that work? Linkin Park has been popular for almost twenty years...where will the Jonas Brothers be in TWO years?

ALEC: On an episode of Ugly Betty.
________________________________________

Later, we were also outraged to find that, in the end, Harry Potter lost to Twilight.

What is the world coming to??

________________________________________

Unfortunately, we didn't get to go to the games today. They won both handily so maybe it was a good thing (they lost last weekend when we were there). Sam has been feeling really bad. Not sure if it's the cold front going thru or something else, her back is still really swollen. I suppose if it's still swollen on Wednesday I'll take her down. I have to work the next 3 days. (Thank you Kim for working for me on Wednesday so we could go to Heather's funeral). Sam wanted me to say a little bit about Heather's funeral. I'm sure what she'll write about it will be much more eloquent but we were all touched by it. Alec and Sam both got up to speak about Heather at her service. Sam even danced a little bit, to demonstrate a dance that Heather taught everyone. Alec spoke about how nice Heather was to him and how she was the only one playing archery to get a bullseye. I will say as a Camp Sunshine parent that our Camp Sunshine family is amazing and we appreciate them more than they'll ever ever know.
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Well, as most of you know....today marks six years since they found an unknown mass on my Pituitary Gland during a CAT scan. I was ten years old and in my wildest dreams, I would never had imagined that what has happened in the last six years...would happen. Ten year olds don't worry about that stuff. You don't worry about getting cancer until you are an adult...that's what you hear about. Old people get cancer...get brain tumors. Not kids.

But I was born with a cyst deep in my brain that steadily filled with fluid until it couldn't hold anymore. It burst and changed my life forever. What was probably only a couple of teaspoons of crap at the most sent me into a world where kids do get sick. Children suffer horribly. Your friends die. A place where kids also make big comebacks. Children fight bravely through the pain. Your friends become soul mates for life because of what you share.

I first got The Headache March 24th, 2003. I was playing outside. I don't really remember the pain per se, but I remember going up to Mom and telling her about it.

March 25th...still having the headache but it wasn't any worse or better.

March 26th...it was a lot worse that day. I got in trouble for not paying attention in school that day. Friends noticed that I had my head down on my desk when I wasn't working. Mom came to the school by chance to eat lunch with my class and I went home early with her. She took me to the doctors but they didn't diagnose anything. The doctor said only to worry if I started vomiting.

I recall now that a few months before I was diagnosed, I had an extremely severe GI bug. This was during that heavy outbreak of Meningitis in 2002. I remember my dad asking if it was the 'M Word', not wanting to scare me. Even then, I wanted to be a doctor...I knew what Meningitis was because I had looked it up in this medical book I had when the Meningitis outbreak occurred and it was in the news everyday.

Later that night....well really, it was early in the morning...about four in the morning, I threw up. I remember crying out to Dad, "The doctor said if I throw up, it could be Meningitis!". That's when Dad got me up and drove me to the hospital. I couldn't move my neck and my head was hurting so bad. Luckily we lived, literally, only a block from the hospital. As soon as they got me into a wheelchair, I vomited again. I don't remember if we went straight to CT or if we were put into a room. I vaguely remember the scan...my first IV is more vivid. They described it as a shot and I cried and I was scared but I kept still. When the nurse poked me I begged her to take it back out...that's when she told me it wasn't coming out. I had never heard of that and it frightened me....I didn't care that it was "only the straw", that the needle itself was out. It hurt. I settled down though and they gave me Reglan(which I would later develop a horrible allergy to)for the nausea and, though I'm not sure, I imagine something for the pain. After that I was really tired.

Eventually, Mom arrived. She had been spending the night at her sister's house and had to drive up from Ohio, about three hours away. She came about the same time the paramedics who were to transfer me to Children's Hospital of Michigan did. They were both really nice, one of them gave me a calico beanie babie cat on the way.

At Children's, I underwent a spinal tap as soon as I arrived. I remember them giving me a mask but it didn't smell like anything so I'm not sure how they sedated me. It must've been through the IV. I remember waking up in a recovery room and there was a little girl fretting in another bed. I remember being upset about that. I don't remember going up to a room. I don't recall much of the next two days, actually. I remember the Husky that visited me in the picture, Nanook. I remember Mom crying when the Husky came in because I wasn't acting at all excited about it. Like I said in the photo album, I have always loved dogs and at that present time, Huskies were my favorite breed. I always jumped at the chance to interact with dogs whenever I got the chance. But not that time.

I started to feel better by the third day. Between that day and the fifth when I was discharged, I needed three more new IVs. My veins have never been that great.

Everything pretty much went back to normal when we got home. Truthfully, it wasn't until after my craniotomy a year and a half later that I started realizing how serious it was and how much worse it could've been. Mom and Dad never really sat me down and told me, "You have a brain tumor". We discussed it, like when it grew on my second post-diagnosis MRI, but it wasn't like I needed chemo or radiation so I didn't think about it much.

But on March 24th and March 25th...I never could've imagined that six years later, on those days, I'd be attending the funeral of one of my best friends and fellow brain tumor fighters. How many headaches lead to a brain tumor...lead to that way of life? Sure, I was into looking up my every ailment and symptom in that big red medical encyclopedia, but what ten year old considers that one headache could in fact lead to the one thing that the book says is so rare and most likely isn't the case?

Even before I was diagnosed, there's a lot of evidence that the cyst was making it's appearance. I used to get so many colds and they would be so severe and last so long, I was tested for Cystic Fibrosis when I was five. Now I suspect it was a little bit of Adrenal Insufficiency causing that. I remember in first grade going through a sudden bout of bed wetting and sometimes even having problems during the day....having to go to the bathroom very suddenly and not making it. I had problems with that when I was three too. What appeared to be normal young kid stuff was probably a mild and non-permanent case of Diabetes Insipidus. In just the months coming up to my diagnosis, there were little things going on. In a eye check up in November of 2002, I had completely normal 20/20 vision. By February of 2003, I was having problems and it turned out my vision was now 20/60. I know Pituitary Tumors only cause problems chiefly with peripheral vision but sometimes I wonder if maybe the cyst got so big before it burst, that it was obstructing my CSF flow and as a result, my eyes got worse...especially as it was so much in so little time.

Now, six years later, I can't do a lot of the things I used to be able to. I can't do gymnastics...the sport I was involved in when my shunt was placed. I can't put my hair in a half ponytail because most of the hair in the front-right side of my head is permanently gone because of scar tissue. I can't give piggy back rides...both because of my shunt and the fact that getting down on the floor and holding my head in that position gives me a pressure headache. And I don't like adding on to my ever present headache if I can help it!

I can do some new stuff though. I can swallow seven pills all at once every morning and night with only a sip of water. I can put mascara on even with chronically and severely shaky hands. I can look at life and see all the wonder and sacredness of it. As I've said before...now I can make it. I know I can no matter what.

Because, with the help of family and friends, I went from this

To this.

and I think I've come a long way....in every way possible. Mentally, emotionally, spiritually, and physically....exponentially!

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Monday, March 23, 2009

Thanks to a generous offer from a friend, we are going to be able to go to Heathers funeral in New York. We are leaving tomorrow morning and will be back on Wednesday night. Once again, our BT family will come together, and celebrate the life of a wonderful, special beautiful child. We will laugh and cry together and become stronger, together. Always together. We couldn't do this any other way.

Happy Birthday to Papa who is 75 years young today!!!! And congrats to my niece Jennifer who bought her first car in Michigan yesterday and she, my sister Mary and other niece Janet are driving a Sebring convertible back to Texas today. Not too shabby!!!

We are still reeling from Heathers passing. Sam is doing better today. She is at Aunt Ruthies, wathing the U of M game on tv. We were supposed to go but with Heather and Alec's kidney thing we decided not too. Well, I decided that we're going to drive to Evanston tomorrow morning and go to the game tomorrow. It's only going to cost 2 tanks of gas and it'll be fun. Every time something happens in the game, she texts me. She's so excited, I think it'll be good to go and once again, we'll be surprising someone....Alec doesn't have school on Monday but Sam does have an early eye appointment on Monday. Don't forget we are still wondering whats going on with her peripheral vision. Hopefully it's just a temporary thing or something that's not going to get worse. We are throwing caution to the wind going, but we're going nonetheless. Sometimes in this brain tumor life, you just have to live in the moment, play in the moment. That's what we're going to do.

p.s. Nikolaas I love you!!!

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Friday, March 20th, 2009

Heather passed away this morning. I am heartbroken. Please pray for her family and now more than ever, let them know you are thinking of them.

All my Love and Prayers Oney Family!

I'll love you forever Heather. Thank you for everthing you gave to me since we met last summer at the Best Place in the World. I will never forget you.

Thursday. March 19th. 2009

To quote my mother....first. the mundane stuff.

I'm very sorry you had to endure her crassness with that last entry. (Crass is Mom's word of the week)

But most importantly tonight.

Please. Please pray for Heather tonight. She isn't doing well but I know that if anyone can beat this. It's Heather Oney! Just pray for her and her family and leave them a message saying you're thinking of them. I know they'd appreciate it. Love you Heather! Love you Oney family!

Tues March 17, 2009

Sam's shunt was fine, I'm not going to write a nicely worded letter, however next time we go to the airport I will INSIST on a patdown. We have learned our lesson. They think her head is hurting due to the airplane rides and a cold front that came thru. I am hoping that the wonderful weather we have now will restore her to the way she was about 10 days ago.

All righty, we're on our way down. As I said, we don't have internet at Mom's house so most likely, I'll just have Mom update from her workplace if she has time, saying how it went and all that.

Wish me luck, if you please!

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Sunday, March 15th, 2009 --- Some new pictures!

Yep, so most likely tomorrow, I'm going in to get a shunt survey at Chlidrens. Still really tired, headachy, and nauseous.

Anyways, here are some more pictures from the Banquet! I might not be able to update for a few days because the company that was suppose to(Finally!)install our cable ended up somehow cutting off our internet instead. So now we have no cable OR interent. Seriously though, how does THAT work?

Thomas, John, Emily, Lexie, me, Jaclyn, Bayly, Tessa, Taryn, and Shelby!

Okay, I know it's really blurry, but this is Danny Lam and I after his moving speech!

This is Mom, Vido(my generous bike benefactor!), me, Denis, and Sarah.

And here are some pictures we took during our tour of DC!

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Saturday, March 14th, 2009

Well, thanks to that Charming Customs Lady I am right back to where I was two weeks ago.

You know, two or three naps a day, lots of nausea, and of course, my headaches are back full force.

So most likely, I am going in for a shunt survey on Monday...which always entails twenty or so x-rays and a couple hour long delay causing mix-ups.

I'm just a little ticked off.

Well, anyways, that's what's going on. We are definitely writing a letter!

P.S. I changed the main picture on my website because if you take a look, I'm wearing all turtle jewelry! Turtle necklace, turtle earings(four of them!), and I wore green bracelets too. When Mom and I went shopping for the banquet, I was looking for a pair of earrings and we both thought it'd be really cool to build on my new turtle fascination!

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Friday, March 13th, 2009 --- PICTURES!!!

Okay....

I

HAVE

PICTURES!!!!

FROM DC!!!

HERE THEY ARE!!

Here is everyone after I popped out of that little alcove and 'Surpised the Heck out of Jaclyn!'.

Emily, Lexie, and Lily while we were waiting to go out on the field during half-time at the Lacrosse Game.

From left to right - Lily, Jaclyn, Lexie, Me, Allie, Taryn, and Emily! Most of us are wearing our Team Logos.

Lexie and I at the Banquet!

The Murphy Family!!

Emily and Lily.

It still makes me nervous to look at this picture!!

It was just so cool getting to hang out with everyone. And okay, I know it's not the best picture. I'm still getting the hang of my camera!

This is me and Mom!

See, I told you we were parked in Guatemala!

Okay, well, that's it for now...I'm not feeling well today. Actually, it would appear that, in fact, some harm WAS done when That Charming Customs Lady put me, a small human magent, through that air port industry metal detector. I've been having worse headaches and nausea so I'm going downtown sometimes next week to get my valve checked.

So, rest assured, the Metro Airport will be getting either an angry but patient and rational phone call or a very strongly worded letter.

'Cause this sucks. I was feeling great then, BAM, I was directed through a big huge valve resetting magnet.

Keep praying for Heather! Also, Lexie had surgery today to get her port taken out and we are texting right now ad she is eating ice cream at home! YAY LEXIE!!!

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Wednesday, March 11th, 2009 --- Day Three.....unfortunately, all the surprising parts of the trip are over.

So, on Sunday, I woke up a little late-that is to say, 9:30 am. To my dismay, the Williams' had just gotten into their car to leave but I caught Lexie on her phone and we texted all through breakfast anyway!

We ate breakfast and talked and socialized for a long while....then we had to say good-bye. Which was of course, really hard but hopefully, we'll all see each other at camp this year! So everyone hugged everyone about five times and then went their separate ways.

I know I've said this a lot, but it really was an amazing weekend. We got to catch up with one another and some of us also met each other for the first time. It's always so magical when we get together...we always fall right into place, like we've just been next door all these months. There aren't really any words to describe the relationship you form with people who know what you are going through....especially when it's something like a pediatric brain tumor. You share everything....this weekend-

We laughed,
We cried,
We screamed(well, everyone who got surprised did, anyway),
We cheered,
We clapped,

and the most important,

We understood each other. We never really need words....we know each other so well and we are just so content on BEING. It's just more fun to laugh, and cry, and scream.

Well, then Mom and I left the hotel and our first destination was the Holocaust Museum, which I've wanted to go to for a really long time. It was really powerful...it's things like that that need to be remembered. So it never happens again and hopefully, we can learn from it.

From the museum, we walked around a bit and ended up at the World War II, Vietnam, and The Law Enforcement Memorials. We also went to the Lincoln Memorial.

The weather, the scenery....all perfect.

Then-

We got on the plane. Turbulence. Pressure Headache. Sore Back.

At least it was on time!

But then-

We landed in Michigan. Mom dropped and tipped over the suitcase no less than four times, all just seconds after getting it off the luggage carriage.

But at least we had gotten some neat little knapsacks at the Banquet and the suitcase didn't burst open this way home!

But then-

We stepped outside. 40 flippin' degrees. Windy. Stupid Michiganders just walking around....and none of them know how to navigate a subway. Most depressing.

But at least Dad was on time picking us up!

But then-

That Mcdonalds totally screwed up our order. We were starving. It was eleven at night. I was beginning to break through my Desmopressin and was really thirsty and a bit grumpy. Mom had forgotten her Topamax in Michigan to begin with and had an insane migraine coming on.

But at least we didn't get into a car accident or anything!

(This was the second mishap....basically, a bunch of baby mishaps lumped together...and it was all in Michigan....DC, however, was perfect!)

So there you have it. The whole Super Special Secret.

I've been feeling a tiny bit better today but we still have that cold-front going through so my head is still bad. I don't feel nauseous like I did yesterday though.

Please go and wish Heather a Happy Sweet Sixteen today! HAPPY BIRTHDAY HEATHER!!!

Also, please pray for my Dad, who is going in for some tests tomorrow at the doctors.

Hope you enjoyed!

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Tuesday, March 10th, 2009 --- Day Two of the Unveiling of the Super Special Secret.

Okay, so on Saturday morning, I woke up at the usual Six-Thirtyish and Mom woke up at an unusual(except when she's working)Sevenish. So we went down to breakfast early and Lily came to sit with us, as the Langbeins' were already up too! Lily told us all about her plans to visit 'A Rock Obama's' house and then the Murphy's came down and Lily told Jaclyn and Taryn how she ate approximately six school kids that morning(Don't ask).

After breakfast, Jaclyn, Mom, and I went back to our room so Mom could accomplish one of her Top Life-Aspirations--

To watch 'Twilight'.

Mission accomplished.

After that, Mom took a nap and Jaclyn and I hung out a bit and when Taryn and Lily got back from the hotel pool, we played a little bit of Toss the Penguin with one of Taryn's stuffed animals, whom Lily aptly named 'Poodie' the Penguin. And again, Lily had no inhibitions when it came to pelting the stuffed bird full force at Jaclyn and I!

Now let's fastfoward to the Lacrosse game! It was at Georgetown University and the two teams were, of course, Georgetown and also Northwestern. We walked there, with Taryn yelling hello to every stranger she saw, and we then waited for the Williams'!

Mom and I had this whole elaborate plan set up on how we were going to surprise them....I was going to simply walk up and offer Lexie a can of pop(see the W F R/K Story from two weeks ago)and say, 'Don't you know, there is actually POP in these drinks?" but I got so excited upon seeing them that I just ran forward and squeaked out,"Want some pop??" while hugging Lexie, which wasn't the plan obviously, but Emily, Lexie, and Alice were still surprised!

Then the game started and long story short....Northwestern scored A LOT. And ended up winning....

But at half-time, Denis came up to where Lexie, Emily, Lily, and I were sitting and told us we were going on the field! So we, and Taryn, Jaclyn, and Allie, all filed onto the field and Denis explained to the crowd about Friends of Jaclyn and introduced us all by name and by which team had adopted us all. Dave and Shelby Taylor were also there for the game! I'd post pictures but of course, Mom's computer still isn't allowing that!

So, the game ended and we all went back to the hotel and got ready for the banquet. Mom and I rode with the Taylors' to The Organization of American States and we parked in Guatemala. You see, every parking space was named for a country and that's the one we ended up in!

We then also got to surprise Tessa, Joan, and Allen Kerpan, which was also a surprise for us! We also were able to see Bayly and her family, which was really cool!

Now, let's just fast forward to the speeches. There were a number of people who got up to speak about their experiences with FOJ...one of them was Devon's dad, Danny. He talked about how much the Temple University Lacrosse team meant to Devon and how much love, support, and fun they added to her life. Danny also read my poem 'D-Day' and I have to say, even if that poem was to become a national bestseller or whatever...hearing him read my poem in benefit of FOJ will always be the best possible way I can think of for one of my poems to be shared. Of course, by this time, I was bawling and so was everyone else, I'm sure. I couldn't see very well though.

After the dinner was done, we all gathered for picture taking and congratulating and talking about what an amazing night it was.

I also ended up walking away with a bike! Vito Germinario, who helped a lot with getting the banquet ready and all set up, had bid on the bicycle and decided to give it away. I was so surprised and it is a really cool bike! There's a lot of trails and parks around here at my new apartment so I think I'll be using it a lot. It was so nice of him and I'm so grateful!

After a while, everyone started leaving and Mom went back to the hotel with Shelby and Dave and I rode back with the Williams', who were parked in Jamaica.

We wanted to have more ice cream when we got home but apparently, to adults, midnight is much too late for ice cream. Apparently, eleven p.m. is fine, but midnight is just plain ridiculous!

And after we tried, again unsuccessfully, to procure some ice cream, we finally had to concede defeat and go to bed.

So, there you have Day Two of the Unveiling of the Super Special Secret! Which was totally the best and most amazing day out of the whole weekend.

Tune back in tomorrow for Part Three...which will detail all the sad goodbyes we had to say that morning, my first visit to Washington DC, and our triumphant(psh, yeah right)return to Michigan. By 'Psh, yeah right', I don't mean anything was wrong with the trip home or anything like that. I just mean that as soon as we stepped foot on Michiganian soil, things started to go downhill fast! As I told you, all the mishaps in the trip happened in Michigan but Washington DC was absolutely spectacular! Amazingly and breath-taking-ly fantastic.

Just a quick update on me....there is a major cold-front going through so I'm feeling pretty crappy today but hopefully when it passes, I'll go back to feeling like I did this weekend! Also, tomorrow is Heather's sixteenth birthday so please stop by her site, leave a note, and pray for her!

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Monday, March 9th, 2009 --- The Super
Special Secret is unveiled!

All right.

I don't want a repeat of the whole 'Thankful Saga' fiasco. You know, how back in November I wrote out this whole big update and just as I was going to paste the very last picture into the update----WHOOSH, the whole thing disappeared. I just about committed suicide so I'm going to split this into a couple updates as well, in order to avoid that. Also, my computer is flipping out again and won't let me upload pictures again, which annoys me to NO end but as soon as it starts cooperating again, I will post the pictures from this weekend.

Okay. So....Part One. Titled-

'The Super Special Secret is Unveiled!'

Okay, first off. This weekend was absolutely amazing and I would never nor could ever forget it. There were only two annoying happenings during the whole trip. I am going to get the first out of the way now, both because I don't want the rest of my update tainted and secondly, because it was very funny and I'm sure you will all enjoy reading about it. (Oh, people from Michigan can be so stupid!! I can hear it now...)Just so you all know, we went to Washington DC for a fundraiser dinner for Friends of Jaclyn.

So, the first annoying thing happened in Michigan at the airport. Mom and I checked in our bags and stood in line and waited to go through customs. All the while, we were thinking about how to phrase the fact that I ABSOLUTELY CANNOT go through metal detectors. You see, we didn't want to raise the alarm because a few 200 pound guys tackling me would probably be even more dangerous to my shunt than one measly metal detector.

I can't go through metal detectors because of my Medos Valve. It's controlled by magnets, it's how you change the setting. So walking through a big airport quality metal detector can be dangerous and could very well reset my valve to any setting and we can't control it. Which could potentially lead to life-threatening ICP's and would certainly lead to a trip down to Childrens for re-adjustment.

So, naturally, I didn't want to chance all that. Neither did Mom. Which is why we told that charming customs officer that I NEEDED A PAT DOWN. She asked why, we told her, and she said I would be fine. We told her no, I wouldn't because it's magnetic. She said OK, we'll put you through this new X-ray thingy. She told me to go through to the X-ray thingy and I walked through this archway that I assumed was just a barrier.

Then that charming custom officer said,"Oh, well the metal detector didn't go off so you'll be okay."

WAIT, WHAT???

Apparently, she thought it would be okay, even after we told her it wouldn't, for me to go through that seemingly inconspicuous archway. Or maybe she wasn't allowed to eat dirt and never got the chance to experiment with hot pans as a child....therefore, she just HAD to see what would happen.

Either way, I don't understand it. But so far, I don't seem to be developing either high or low pressures so no harm done.

But still, Mom's writing a letter because it was ridiculous.

Okay, so now that that's out of the way....

I'll have you know that all of our traveling problems took place in MICHIGAN. Washington DC, however, was perfect!

After we landed, Mom and I got our luggage, then we had to run in order to catch a bus that would take us to a train station. After a brief period of getting lost in that train station we caught a train, which took us to a subway. After a brief period of not knowing which line to take, which left that one subway security guy thinking we were complete idiots, we got on the subway then got off and got on another one! We are from Michigan after all....NO subways or public transportation to speak of! Except buses.

Then we caught a Taxi, even though the hotel was only three blocks away-but we figured it'd be safer.

Then we checked in and at this point, we realized our suitcase zipper had broken so Mom was cradling it in her arms. Making our ungainly way to the elevators, the first person we saw was Dennis, Lily's dad! Of course, he didn't know we were going to be there so we sorta froze in mid-step, wondering whether we should back up around the corner again! But our sudden motion caught his attention and he turned to us...and saw us. I'm sure we looked rather comical...Mom with our bursting suitcase in her arms and both of us with a Deer-Caught-In-The-Headlights look on our faces.

So we rode up the elevator together and exchanged room numbers. Then we got off on our floor and put our stuff away and proceeded to Lily's hotel room to surprise Lily and Olivia!

Then while Mom caught up with Olivia and Dennis, Lily and I had a pillow fight...which I think she won. Lily had no qualms about clobbering me full force with her pillow! But eventually Lily had to go to bed, so Mom and I left and got ready for Phase Two....Surprise the Heck Out of Jaclyn.

Dennis then called us and told us to come down to the lobby so we did. Conveniently enough, I got the whole thing on video! Unconveniently enough, I can't download that video yet!

But anyway, we got down to the lobby and it turns out Jaclyn had gone upstairs! So we said hi to everyone down in the lobby and then, while I hid, Taryn, Jaclyn's sister, texted her and told her to come down quick! So, Jaclyn came down, I popped out, Jaclyn screamed a little, and then we sat down and talked and caught up.

We were waiting for other people to show up. While we were doing that, we had ice cream(at eleven o' clock at night)and plotted how to best surprise the Lams', who were to be the next people to arrive who didn't have a clue I'd be there!

Then, Danny and Angela arrived, I ran out from behind a pillar and Danny accused me of lying to him after we hugged. I countered by saying,"No, I just said 'It was a little far...'"! Which is what I told everyone! I'm very good at lying by omission. Then everyone was introduced again and we talked again for a little while, and then, even though half of us were hopped up on ice cream, we went to bed.

I think I literally fell asleep smiling that night!

Okay, so that's part one. Tune back in tomorrow for my recap of Saturday, which was the most incredible night by far of the whole weekend! Part Two will include surprising the Williams', an extremely well-played Lacrosse game, and a dinner that left EVERYONE laughing and crying.

BEST VACATION/WEEKEND/REUNION EVER!!

By the way, Jaclyn's MRI today was CLEAR! GO JACLYN! Please keep praying for Heather and her family. We love you Oney Family!

Monday, March 9th, 2009

I am working on my big beginning of the week update as of this moment....bear with me and check back later!

~The Wacky Family Robertson/Kirkpatrick Stories Section!~

For the week of 3-2-09.
***********************

Setting: I was in Dad's kitchen looking for a usable fork. Dad was sitting on the couch in the living room but could see me and my search for the perfect utensil.

Subjects: One parents incredulous reaction to their child's apparent laziness and the said child's dislike for tarnished forks.

Background: I don't like tarnished forks, they make food taste weird! And at the time, we didn't have any other conventional forks...so I was forced to improvise.

**************************************

ME: Dad, is the dishwasher clean?

DAD: No, but there are forks in the drawer, right?

ME: Yes, but they are the kind that make your food taste....METALLY.

(shudder)

DAD: (rolling his eyes)Well, just take out a fork from the dishwasher and clean it then!
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But then my eyes alighted on something in the drawer and I snatched it up and proceeded to walk back to the couch to eat whatever it was that I was going to eat. Dad looks at the selected utensil with aforementioned incredulity. It was one of those big huge salad serving forks but it was, however, untarnished!
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DAD: Um, that is a very large fork.

ME: Yeah, but it's usable and my food will taste good!

DAD: It would've taken you about five seconds to take a regular fork out of the dishwasher and clean it.
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I thought about this for a second and replied very matter-of-factly.
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ME: Yeah...but it only took me two seconds to get this fork out of the drawer!

Sunday, March 8th, 2009

Okay, so A). It's really late and B). this weekend The Super Special Secret was carried out rather professionally and worked out beautifully!

C:) I'll tell you all about it tomorrow.

Yes, I know, I'm a awful tease...but I, unlike my Mom, can keep a secret.

Although admittedly, she did about Seventy-Five Percent of a good job on this particular Super Special Secret.

Please, please, PLEASE pray for Heather and her family tonight...or send a positive vibe or even just sign her guestbook and let her know that you are thinking of her. LOVE YOU ONEY FAMILY! Please pray for Jaclyn too, who is getting an MRI tomorrow. LOVE YOU MURPHY FAMILY!

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Friday, March 6th, 2009

My head's hurting a little worse today but it's still loads better! It's a bit windy and cloudy out so that's probably why. Unfortunately, I will most likely always have the ability to guess the weather without having to look out the window or flip on the Weather Channel.

It is sooo nice here in Michigan! It's in the 60's!! We have our windows and doors open even!

Maybe we'll actually get out and do something....outside....and only wear a sweater!

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Thursday, March 5th, 2009

Still feeling great!! I think I have an idea what's going on but before I go into it, let me take a moment for myself.............

Okay, sorry, I was just knocking on...all right pounding-Okay, okay! So I was demolishing the wooden table here next to the computer! I really don't wanna jinx myself and as a precaution, I'm doing more than *just* knocking on wood! But, ahem, here is my theory-

I think the Keppra might just be MAYBE perhaps....working! All the sudden I'm not that tired anymore(NO naps today!)and my head is better than it has been in ages. Of course, it still hurts. I don't think the headaches will ever go away THAT fast, if they ever do. But hopefully this is a step in the right direction! As it's only been two days, I'm trying not to get too up about it....but I'm definitely enjoying it while it lasts for now. Please pray that this is a turning point for me!

I did have a more severe headache after I went to school today but it's better now and I think I just need to get new lenses for my glasses and that will at least get better. I'm still having vision issues. I think we go to see a Neuro-Opthalmologist soon.

So. Mom and I do have some really exciting stuff coming up. I can't go into details quite yet but as soon as I can, I'll let you all in on it! It's to do with that 'Super Special Secret' I mentioned back in January. I'm not giving a time-frame or place so don't ask...it could be a week or about a month or, heck, a year till I fill you in so don't knock yourselves out trying to guess! I promise though, as soon as it's not a secret anymore.....I can tell you alllll about it! But *it* will be fun.....

Please keep up the prayers and positive thoughts for Heather and Jaclyn....and all the great and amazing families from camp who take the 'Slow Road' with me!

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Wednesday, March 4th, 2009

Wooooowee.

I had a great day today. My head hasn't been this good in, well, I don't even remember the last time I felt this good! I only had to take one nap in the morning and I wasn't nauseous or really tired and I didn't even crash into any displays when we went to the mall today! We didn't have to leave the mall early because my head was starting to hurt bad and I was able to go to 'Connect' today too! I don't know what caused this sudden turn of events but I'll take it!!

I haven't felt feverish anymore either and my throat isn't hurting so hopefully we caught the bug before it could take hold and the antibiotics will do all the work for me without my having to go in for an emergency dose of SaluCortef!

One thing that's been going on lately is my hand tremors have been rather severe and just plain noticeable. It's annoying but I'd rather hand tremors than bad headaches any day.

It was a great day! I just wanted to reiterate that.

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Tuesday, March 3rd, 2009

Well, I'm going on antibiotics today because this morning I'm pretty sure I had a fever. I say pretty sure because whenever it's a bacterial infection I'm dealing with, my fevers tend to just...act weird! I always get it around five or six in the morning and I can just tell I'm getting a fever. However, when I take my temperature, it's normal! But I usually take some Advil anyways and then...a couple hours later my temperature actually is high. Then it goes away and I never hear from it again...at least not until I get sick again. It's weird but then I've never exactly been a textbook case on anything! Hopefully with the medication being started today, we can just wipe this out before it gets too bad.

I got places to be and people to see!

My head is still a little worse today but it could just be because I'm getting sick. I've been stress dosing with the Cortef since the fever this morning. I really, REALLY, re-HEALLY, don't wanna end up in the hospital at this present time!

I never really want to be in the hospital, as it is. But I digress.

Please keep Heather and Jaclyn in your prayers!

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Monday, March 2nd, 2009

I rather think I am getting Alec's bacterial upper respiratory infection....which bothers me as much as the name of the illness is long! So far, my throat's just hurting but because of my Adrenal Insufficiency and the fact that a bacterial infection in my throat and chest could easily travel to my shunt, I think I'll probably go on antibiotics if I don't feel better tomorrow, just to be safe. I don't know what they would put me on, seeing as I'm "allergic to all the good meds"....but whatever. My head is a little worse today but not too bad.

Anyway...I wanted to explain this month's background because it might seem a bit random...the turtles, that is.

Actually, I was rather flummoxed as to what I was going to pick for this month. I didn't really see any graphics that caught the feeling March holds for me. I was just going to do the plain white, but then I saw the turtle background and BAM, it hit me....

In a lot of ways, the last six years could be summed up like that one story. You know, about the turtle and the hare who raced each other.

When I saw the turtles, I thought about how before I was diagnosed, in fourth grade, my classmates and I were on the same point...the starting line, so to speak. But then I got sick and while my classmates were able to zoom on ahead, I was left behind...forced to take it slow and go at it my own pace.

Then, as they realized what was happening, they started feeling sorry for me and yet, drifted even farther away. I suppose they sorta figured I would never be able to catch up when they were looking to go so fast and so far. Or maybe they just didn't want to stay behind with me and see what would happen. At first, this hurt more than I could ever say. It still stings. I suppose it always will twinge a little, the friends I could still have...the life I could be leading right now.

But now I see that I like the slow road better. I've been able to just slow down and see what really matters and what really counts. I've learned who were my real friends...who was willing to take the less traveled road with me in order to stay with me and I've met some great friends who were forced to slow down, the same as I was, and yet, who also understand how much more enjoyable life is once you see how much better it is to stop and take a look around at what you have to be thankful for.

I'm not blaming anyone...it was obviously awkward for them and when I was hardly ever there and they could continue to lead normal childhoods and adolescences, they could hardly be counted upon to respond the way I so desperately wanted them to for the longest time. It was unrealistic. But really, I'm over it now. I've realized in the grand scheme of things, I've pushed passed them and moved on. While they felt sorry for me and never knew how it can be a good thing, to have a brain tumor....I do. I would truly never give it up. I don't believe I was 'chosen' for this because I was strong enough or because I'm better than anyone else...not at all. I don't buy into the theory, per se, that this was a gift. I can't return it and I would never wish this on anyone. But now I know that I was strong enough to get through what life has thrown at me. I know that I'm happier and more self-assured than I was. I know I can make it.

Even if it takes me a bit longer than most.

Monday, March 2, 2009 6:04 PM CST

~The Wacky Friends of the Wacky Family Robertson/Kirkpatrick Stories Section!~

For the week of 2-23-09.
***********************

Setting: I was sitting on the couch at Dad's house(in Michigan)and Lexie was, I believe, doing a puzzle in her living room(in Massachusetts).

Subjects: The disadvantages of communicating long-distance and the misunderstandings it can bring about. Also, my clumsiness resulting from the POTS and my decreased vision!

Background: I am going to try and keep to the exact spelling because that is crucial to the whole story! I will include a glossary at the bottom of the story BUT DON'T READ IT TILL YOU'VE READ THE WHOLE STORY!

Ahem, so the whole conversation went like this, and I quote-

**************************************

ME: Jeesh i just spilled a cup of pop! What a bother sol.

(Okay, this won't ruin anything so I'll tell you now-SOL is mine and Lexie's abbreviation for Smile Out Loud. We came up with it so we can reserve LOL for when we are actually laughing! Turns out, by the end of our conversation we would be using LOL a LOT more than SOL!)

LEXIE: y did you have a cup of pop i want to know.

ME: I was drinking it...my doctors say that caffeine helps low blood pressure so I usually drink some every day. I don't really drink coffee sol!

LEXIE: wait theres caffine in pop?

ME: Yeah a little bit. You know, in coke cola and sprite and stuff.

LEXIE: theres pop in those drinks?
______________________________________
This is the point where I become slightly bemused...but I just figured Lexie wasn't much of a soda drinker!
______________________________________

ME: Um those drinks are pop. Um, you are talking about soda right?

LEXIE: ya that is very gross but how do they make it into that?

ME: Um i dont know...i think its just you know, carbonated water and the flavors and stuff.

LEXIE: huh ok how does pop have flavor well it does but i bet it would be gross though.

ME: SOL it tastes good to me! I take it you dont drink a lot of pop?

LEXIE: U LIKE POP? i dont know anybody except you and my dogs who like pop.
______________________________________
At this point, I graduated from bemused to confused! But still, I just figured Lexie just doesn't drink pop, although I thought it was weird that she gave pop to her dogs!
______________________________________

ME: Hmm thats kinda weird sol. No one? I thought everyone liked soda sol!

LEXIE: i dont get how they make it though and who do they get it from?

ME: Um i think its made pretty much like every other drink...and in the USA im pretty sure.

LEXIE: then how do you make it? i only know it comes out of humans and animals i never knew you could make it.
______________________________________
At this point, I burst out laughing because I had thought I might just have an idea of what's going on!
______________________________________

ME: Wait what?? Lol, what do you mean?

LEXIE: i mean pop when you go 2 the bathroom dont you sometimes do it?
______________________________________
And at THIS point, I knew I had previously been right and I pretty much fell off the couch in paroxysms of laughter.
______________________________________

ME: Lol! No, im talking about soda...not poop! You know, coke, mountain dew, seven up, stuff like that!

LEXIE: lol i thought we were talking about poop lol.

ME: Lol no!! Oh my gosh, lol, i had no idea what we were talking about for a second! Wow. So your dogs eat poop huh?

LEXIE: ya its really gross.

ME: Oh my gosh thats funny. Yeah, for the record i dont eat poop! ;0P oh okay ttyl and lulas!
______________________________________
Lexie had to leave for a little while but later we got back to texting...after I had done some serious thinking...and more laughing.
_____________________________________

LEXIE: im back!

ME: Hi! Lol im still laughing!

LEXIE: ya it took me a while 2 stop laughing 2...lol!
______________________________________
Then I seized my chance!
______________________________________

ME: Lol that was so crazy! Hey, and if this isnt okay i totally understand, but would it be okay if i use that for my funny story of the week on my caringbridge?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Well...there you have it! For maximum enjoyment however, I strongly urge you to re-read the whole thing and replace the words soda and pop with poop and you'll get an idea of just how funny the whole thing was! The moral of the story? Always make sure you and your friends are talking about the same thing when texting and using text lingo!

**************************************
Glossary:

Pop: Apparently, to some people it can be an abbreviation for poop!

SOL: Smile Out Loud

LOL: Laugh Out Loud

y: why

ttyl: Talk to you Later

lulas!: Love you like a Sister!

2: to, too, or two

;0P-This is just a face sticking it's tongue out and winking.

Monday, March 2nd, 2009

I rather think I am getting Alec's bacterial upper respiratory infection....which bothers me as much as the name is long! So far, my throat's just hurting but because of my Adrenal Insufficiency and the fact that a bacterial infection in my throat and chest could easily travel to my shunt, I think I'll probably go on antibiotics if I don't feel better tomorrow, just to be safe. I don't know what they would put me on, seeing as I'm "allergic to all the good meds"....but whatever. My head is a little worse today but not too bad.

Anyway...I wanted to explain this month's background because it might seem a bit random...the turtles, that is.

Actually, I was rather flummoxed as to what I was going to pick for this month. I didn't really see any graphics that caught the feeling March holds for me. I was just going to do the plain white, but then I saw the turtle background and BAM, it hit me....

In a lot of ways, the last six years could be summed up like that one story. You know, about the turtle and the hare who raced each other.

When I saw the turtles, I thought about how before I was diagnosed, in fourth grade, my classmates and I were on the same point...the starting line, so to speak. But then I got sick and while my classmates were able to zoom on ahead, I was left behind...forced to take it slow and go at it my own pace.

Then, as they realized what was happening, they started feeling sorry for me and yet, drifted even farther away. I suppose they sorta figured I would never be able to catch up when they were looking to go so fast and so far. At first, this hurt more than I could ever say. It still stings. I suppose it always will twinge a little, the friends I could still have...the life I could be leading right now.

But now I see that I like the slow road better. I've been able to just slow down and see what really matters and what really counts. I've learned who were my real friends...who was willing to take the less traveled road with me in order to stay with me and I've met some great friends who were forced to slow down, the same as I was, and who also understand how much more enjoyable life is once you see how much better it is to stop and take a look around at what you have to be thankful for.

I'm not blaming anyone...it was obviously awkward for them and when I was hardly ever there and they could continue to lead normal childhoods and adolescences, they could hardly be counted upon to respond the way I so desperately wanted them to for the longest time. It was unrealistic. But really, I'm over it now. I've realized in the grand scheme of things, I've pushed passed them and moved on. While they felt sorry for me and never knew how it can be a good thing, to have a brain tumor....I have. I would truly never give it up. I don't believe I was 'chosen' for this because I was strong enough or because I'm better than anyone else...not at all. I don't buy into the theory, per se, that this was a gift. I can't return it and I would never wish this on anyone. But now I know that I was strong enough to get through what life has thrown at me. I know that I'm happier and more self-assured than I was. I know I can make it.

Even if it takes me a bit longer than most.

Sunday, March 1st, 2009

Well, it's late in the day and I feel sorta nauseous so I'll leave the big update concerning the webpage change and what the month of March means to me for tomorrow! Check back then! Until then though....new pictures in the album and a new poem(well, not exactly newly written but you can still read it if you want!)on my page!

________________________________________
Saturday, February 28th, 2009

My head's been pretty good today(That makes it sound like a sometimes naughty child, doesn't it?)but again, I am so tired! I really hope this stops soon...it just comes on so suddenly and it's not just simple fatigue...I feel ready to take a nap most of the day and more often than not, I end up doing just that!

I am definitely ready to make over my page as well....there was some question as to whether all the pictures I needed would be in on time but nope, it's all set! So check back tomorrow for new material!

Alec's cough is definitely better, not so junky. Thank Goodness, 'cause it was driving ME up the wall! Abbey is still doing well with her shots and, unbelievably enough, is actually OK with the whole 'Scheduled-two-meals-a-day' bit! Except there's the ever-present danger of being bowled completely over by her if you happen to be the unlucky one who has to set down her food bowl at these scheduled-only-twice-a-day times!

And when you have all of THIS charging full speed at the back of your knees(wih precisely this look on her face, I might add)because you're in the way...it's hard to stay on your feet.

Especially at six in the morning.

And DEFINITELY if you have trouble keeping your balance as it is!

_______________________________________
Friday, February 27th, 2009

I can't believe it's almost March! As most of you know, March was the month I was diagnosed with a Brain Tumor...this year it will be six years. Of course, this means new pictures and a new song on my webpage on Sunday!

I haven't updated that much because, well, there's not much to say. My head was better yesterday but then it was raining today so it was bad again...hopefully, I'll be able to go to school next week. I'm still horribly fatigued, which is a real downer...even when my head isn't too bad, I'm just way too tired and don't feel like doing anything. I think the fatigue is partly the POTS but also, I'm still adjusting to the Keppra.

Well, I don't know when I'll update next, but I'll probably update on Sunday when I make over my page. Keep praying for Heather and also Jaclyn, who has an MRI coming up in March....LOVE YOU GUYS!

________________________________________
Tuesday, February 24th, 2009

My headache has been a little better today. It was still bad this morning but it was better later on in the day. We didn't go to the clinic but if it doesn't get better, I guess we'll have to.

In other news...

I CAN HEAR AGAIN!!!!!! There I was minding my own business, and all the sudden....my ear popped and I could hear!

But now I can hear the full capacity of Alec's incessant coughing at full volume...not so cool.

________________________________________
Monday, February 23rd, 2009

***Also, I didn't mention earlier, but Heather is doing a lot better and is back on her regular floor! GO HEATHER!!

My headaches are still horrible. I need to come up with some new adjectives....'cause horrible just doesn't cut it. Neither does the 10 Face on the Wong Scale! Mom said she is going to take me downtown tomorrow if I don't feel better because I haven't been to a school session with Mrs. Baker in three weeks. Part of the problem is I am so drowzy and tired all the time because of the Keppra, hopefully that'll let up real soon. But most of the problem is just these headaches. It's been snowing non-stop all the last week and especially when the weather doesn't let up like this, it really affects me.

I hate going to the hospital though. I know it's not anyone's fault....but the truth is they won't be able to help me. They can't even give me new pain meds or even just a booster shot of something to get me through. I don't like pain meds anyway, they make me groggy and grumpy so everyone else around me gets grumpy too! But when you are in so much pain all the time, you start to get desperate for relief. So even though I don't like the way I feel when I'm on them....if there is the faintest chance they will help me feel the tiniest bit better, I take the pain medication. Sometimes it helps and sometimes it doesn't.

And I find pressure headaches are really hard to control. I guess because when your brain is being either drowned or dehydrated by too much or too little(respectively)CSF, you can't help that too much. You have to wait for the snow or rain to pass. For the sun to come out again.

So anyway, most likely, Mom will be taking me downtown tomorrow.

Alec's cough is a lot better now, he went to school today. They had to switch his antibiotic to Bactrim(another good antibiotic I'm allergic to!)and that seems to be working a lot better.

Abbey is doing good too! Unfortunately, that means her appetite is coming back. And, as I predicted, she is not taking kindly to only two scheduled meals a day! We keep having to stop her from eating chip crumbs off the floor and stale mashed potatoes that we forgot to put in the fridge last night off the table. Apparently, carbohydrates are very bad for diabetic kitties! But, unfortunately, we are 'Bread People'. Alec loves chips...I like to eat plain bread straight from the package...Mom likes toast a lot lately....and you all know how I feel about mashed potatoes! Abbey...well, she just likes food.

OK, so anyways....NEW W F R/K STORY! But, this week only, I'm changing that to W F W R/K F....in other words, keep most of the acronym but change it to Wacky Friends and the Wacky Robertson/Kirkpatrick Family! It features a very interesting Texting Conversation between Lexie and I that happened yesterday!

I will never be able to drink pop again without some of it coming out my nose.

Monday, February 23, 2009 2:05 PM CST

The Wacky Family Robertson/Kirkpatrick Stories Section!~

For the week of 2-16-09.
***********************

Setting: Alec and I were in the living room and Mom was in the kitchen. Still, we were only about five feet away from each other!

Subjects: The mystery and miscommunication surrounding 'Felony Day'.

Background: Most of you know this, but for those of you who don't...Mom is a dispatcher(she answers 911 calls) for Redford Township, Michigan.
______________________________________

MOM: Okay, guys...I have to work tomorrow and I'll be really busy so if you call me and I pick up, don't be offended if I promptly hang up on you when I hear your voice...I'll get back to you eventually.

ALEC: Why will you be really busy tomorrow?

MOM: It's Felony Day.
______________________________________
At this point, I was trying to absorb this statement. Then I got indignant...Seriously?? They have FELONY DAY but they never call attention to Brain Tumor Awareness Month(in May)or Childhood Cancer Awareness Month(in September)??
______________________________________

ME: Felony Day? Is that a new national rallying day for all the criminals in our country or something? Is this the low to which humanity has stooped??

MOM:(pause)No, Sam, it means all of the felons in Redford, Michigan come to our courthouse and while they're there, we have to hold them.

ME:(opens mouth...closes it again...)

ME(scoffs)Psh...I knew that.

Monday, February 23, 2009

My headaches are still horrible. I need to come up with some new adjectives....'cause horrible just doesn't cut it. Neither does the 10 Face on the Wong Scale! Mom said she is going to take me downtown tomorrow if I don't feel better because I haven't been to a school session with Mrs. baker in three weeks. Part of the problem is I am so drowzy and tired all the time because of the Keppra, hopefully that'll let up real soon. But most of the problem is just these headaches. It's been snowing non-stop all the last week and especially when the weather doesn't let up like this, it really affects me.

I hate going to the hospital though. I know it's not anyone's fault....but the truth is they won't be able to help me. They can't even give me new pain meds or even just a booster shot of something to get me through. I don't like pain meds anyway, they make me groggy and grumpy so everyone else around me gets grumpy too! But when you are in so much pain all the time, you start to get desperate for relief. So even though I don't like the way I feel when I'm on them....if there is the faintest chance they will help me feel the tiniest bit better, I take the pain medication. Sometimes it helps and sometimes it doesn't.

And I find pressure headaches are really hard to control. I guess because when your brain is being either drowned or dehydrated by too much or too little(respectively)CSF, you can't help that too much. You have to wait for the snow or rain to pass. For the sun to come out again.

So anyway, most likely, Mom will be taking me downtown tomorrow.

Alec's cough is a lot better now, he went to school today. They had to switch his antibiotic to Bactrim(another good antibiotic I'm allergic to!)and that seems to be working a lot better.

Abbey is doing good too! Unfortunately, that means her appetite is coming back. And, as I predicted, she is not taking kindly to only two scheduled meals a day! We keep having to stop her from eating chip crumbs off the floor and stale mashed potatoes that we forgot to put in the fridge last night off the table. Apparently, carbohydrates are very bad for diabetic kitties! But, unfortunately, we are 'Bread People'. Alec loves chips...I like to eat plain bread straight from the package...Mom likes toast a lot lately....and you all know how I feel about mashed potatoes! Abbey...well, she just likes food.

OK, so anyways....NEW W F R/K STORY! But, this week only, I'm changing that to W F W R/K F....in other words, keep most of the acronym but change it to Wacky Friends and the Wacky Robertson/Kirkpatrick Family! It features a very interesting Texting Conversation between Lexie and I that happened yesterday!

I will never be able to drink pop again without some of it coming out my nose.

Friday, February 20th, 2009

Happy Friday! I'm feeling up to updating at the moment...so I'll go ahead and do that!

I'm not feeling quite as bad today as I have the last two days....BUT...we are getting about 5 to 8 inches of snow tomorrow so it's probably not going to last!

Alec still has the horrible and junky cough but his fever is gone and he only has two days left of his antibiotic.

I personally think that's incredible....only six doses of an antibiotic and that's it?? Sheesh. Too bad I'm allergic to this antibiotic! The doctors always say,"Wow, you're allergic to all the good medicines!" whenever we have to rattle off all my allergies. I'm allergic to all the good tapes too!

Also, Abbey is doing well with her shots. She didn't even flinch or 'MRWAH!' this morning! I am scared though because, even though at the moment she doesn't have much of an appetite, she's probably not going to like it when she figures out she can only eat twice a day now!

Please keep praying for Heather, the prayers seem to be working!

________________________________________
Thursday, February 19th, 2009

This is going to be short because, once again, my head is absolutely horrible today. But I'm online right now anyways so I thought I'd update.

Alec is feeling better, at least his fever is better. His cough sounds awful but he seems to be feeling better.

Abbey had her first shots(at least the first ones done by us!)last night and this morning. She's doing well with it...she squirmed and did her customary 'MRWAH!' that she does when she's unhappy but she didn't put up too much of a struggle. I think we just need to get used to giving the injection to her. I'm accustomed to giving myself shots, but as you can imagine, Abbey(being a cat)requires a bit of a different dance. But she's always fine two seconds after the fact! As long as we pet her, she doesn't care what we do to her!

________________________________________
Wednesday, February 18th, 2009

Well, it hasn't been much of a day here in the Robertson Apartmenthold! Alec has a fairly severe respiratory infection(he is now on Zithromax)and I have a fairly severe headache.

In other news, Abbey is now taking three units of Insulin every twelve hours. She was at the Vet's today, getting a 'glucose curve' test done. So far, from just one dose of Insulin, her sugar levels have gone from about 420 to 300, so she obviously is going to benefit from Insulin therapy for the time being! I'm going to do her morning shots because I am pretty much always home in the mornings and either Alec or Mom will do her night ones. Although, since I have no problem handling needles, I suspect I'll be doing a lot of the night doses too!

Well, I'm going to sign off, like I said I'm feeling horrendous today but please keep praying for Heather and Luke! Also, Lexie just had a stable MRI so please stop by her site and say congrats!!

Also, Happy Birthday to my uncle Bill today!

________________________________________
Tuesday, February 17th, 2009

Alec is sick today with a cough and fever and I have a headache of course, so it's pretty low key at the Robertson Residence today. Hopefully, I don't catch Alec's virus/bacteria/whatever-it-is 'cause even colds are never good for me!

But-good news! The computer lives!! I mean, it's still acting funny but it allowed me to download some pictures so I'll just leave you guys to it!

This is Lily and me!

Rachel and me!

This is Alec!

OK, now that we're done with the intro....

What can I say that I haven't said before? I'm obsessed! Larry and Sally are now the proud grandparents of about 15 new Spoons.

This is one of the Spoons I made. On the back is the inscription,"The dog I'll never have...".

OK, actually we didn't take too many pictures because obviously, we couldn't take pictures in the theatre and we couldn't take pictures at 'The Lord of the Dance' either.....ah well.

Also, it turns out that Abbey is, in fact, diabetic. She is going in for some testing tomorrow and they are testing her to see how big of a dose of Insulin she needs. They said she has to lose seven more pounds(OH MY GOSH....a ten pound Abbey?? That'll send the space/time continuum careening out of control!!)and hopefully, once that is accomplished, the Diabetes will recede.

(oh yeah, she looks real motivated....)

________________________________________
Monday, February 16th, 2009

I'm really tired today and just all around icked out(does that make sense?)so this might be kinda short.

I had a great time this weekend! Rachel and Lily came over Saturday afternoon and we went to see 'Confessions of a Shopaholic'. FYI, though, it's a bad idea to go see a movie like that on Valentines Day!! We were squashed smack in the middle of two couples, one of whom apparently thought Lily's snorting/laughing and my having to whisper explanations about the movie to Lily was too obnoxious for their liking and subsequently, they got up and moved to another part of the theatre. The couple on the other side consisted of a girl who kept burping(VERY loudly)and a guy who kept sniggering at his dates unseemly noises.

Oy vey.

Anyway, after the movie, we went home and watched three Jeff Dunham movies and made a new generation of Spoons! I took pictures but unfortunately, Mom's computer is continuing to lose functions so I can't upload them at the moment! We'll be taking it in to be looked at soon so until then, if I don't update for a while, it's because the computer up and died on me. It's sorta weird. At first, we couldn't upload photos, then it stopped not accepting my iPod, now we're having trouble with E-mail and stuff...something's wrong!

So yeah, anyway, yesterday, Rachel had to leave early and Mom had to take a nap so Alec and Lily played Head-touch(or was it Touch-head?)with my birthday balloon(it mainly consisted of batting the balloon around and annoying the downstairs neighbors). While they were doing this, I, of course, took pictures and even some videos with my new camera!

Then, after Mom woke up from her nap, we got dressed and went to see 'The Lord of the Dance', which was amazing! It was absolutely breathtaking and I enjoyed it immensely. Enjoy isn't a strong enough word though! Thanks so much to Rainbow Connection for giving us the tickets!

OK, if you're reading this after 10:30 Monday night, then the new W F R/K Family Story is up!!

Wahahahaha.

Monday, February 9th, 2009

~The Wacky Family Robertson/Kirkpatrick Stories Section!~

For the week of 2-9-09.
***********************

Setting: A patient room in the Endocrinology/Teen Medicine department at CHM.

Subjects: Annoying word emphasis, an episode of Mom's Giddiness, and the extreme boredness that insured I caught the unfortunate ailment too.

Backround: The Wong Scale is that pain scale that medical professionals use to pinpoint what 'number' of pain you're in. It's the one with the faces though, instead of numbers. Also, waiting for my Endo Doc can sometimes take HOURS. Mom and I were desperately bored and this is the lowness to which we were stooped.
______________________________________
NURSE: Are you in any pain?

WHAT I WANTED TO SAY: Well, Duh!

WHAT I DID SAY: Yeah, my head.

NURSE: Okay...on a scale of one to ten, one being NO PAIN WHATSOEVER and ten being the WORST PAIN you can POSSIBLY EVER imagine-

ME: Seven.

(Seriously, this is how they always say it! I know their routine by heart, and when I'm particularly annoyed or in particular pain, I'm prone to get snappy and prone to interrupting people, in order to get them to get on with it!)

NURSE: *Pregnant pause* Okay.

Then back in the room...

ME: *still chortling over the clinic nurse's bravado* Why do they always say it like that? The SAME EXACT WAY every single time!

MOM: Maybe that's how they teach it in medical/nursing school.

ME: It's sorta annoying.

Then we just kept at this for a while and pretty soon we were laughing hysterically at the most stupid jokes ever made in Wong Scale Humor History...I don't even remember most of what we said. Undoubtedly because they weren't worth remembrance. The worst joke was, however, my doing--

ME: So, it's called the Wong Scale?

MOM: Yeah.

ME: That's kinda weird...is it, like, an honor to have made up a scale that consists of a bunch of faces that range from Happy to Sad to Mad, or something? I mean, it's not exactly Nobel material.

MOM: I dunno.

Pondering Silence for a few moments.

Then, I sat straight up and started laughing and crying so hard I was gasping for breath. Mom asked what was so funny, but a couple minutes passed before I was in any condition to speak. Seriously, you'd think a really good joke was bound to follow all this drama...but, this was all I had--

ME: Hey! Hey, Mom! WHY THE 'WONG' FACE??

______________________________________

There is no reason why that should've sent Mom and I into rib-racking convulsions, but it did. I guess, in the medical world, when most of it is hours of waiting, worrying, and hurting, anything goes. And I mean ANYTHING. Even if it's the WORST POSSIBLE pun you have EVER heard in your WHOLE ENTIRE life.

Monday, February 16th, 2009

I'm really tired today and just all around icked out(does that make sense?)so this might be kinda short.

I had a great time this weekend! Rachel and Lily came over Saturday afternoon and we went to see 'Confessions of a Shopaholic'. FWI, though, it's a bad idea to go see a movie like that on Valentines Day!! We were squashed smack in the middle of two couples, one of whom apparently thought Lily's snorting/laughing and my having to whisper explanations about the movie to Lily was too obnoxious for their liking and subsequently, they got up and moved to another part of the theatre. The couple on the other side consisted of a girl who kept burping(VERY loudly)and a guy who kept sniggering at his dates unseemly noises.

Oy vey.

Anyway, after the movie, we went home and watched three Jeff Dunham movies and made a new generation of Spoons! I took pictures but unfortunately, Mom's computer is continuing to lose functions so I can't upload them at the moment! We'll be taking it in to be looked at soon so until then, if I don't update for a while, it's because the computer up and died on me. It's sorta weird. At first, we couldn't upload photos, then it stopped not accepting my iPod, now we're having trouble with E-mail and stuff...something's wrong!

So yeah, anyway, yesterday, Rachel had to leave early and Mom had to take a nap so Alec and Lily played Head-touch(or was it Touch-head?)with my birthday balloon(it mainly consisted of batting the balloon around and annoying the downstairs neighbors). While they were doing this, I, of course, took pictures and even some videos with my new camera!

Then, after Mom woke up from her nap, we got dressed and went to see 'The Lord of the Dance', which was amazing! It was absolutely breathtaking and I enjoyed it immensely. Enjoy isn't a strong enough word though! Thanks so much to Rainbow Connection for giving us the tickets!

My necks hurting really bad, so I'll add the new W F R/K Story later on! Don't worry, it'll be up all week, you'll have plenty of time to read it! I know how much enjoyment you guys get out of reading about my crazy family's antics...I know how much joy I get out of recalling and writing about them! Wahahaha.

Sunday, February 15th, 2009

Well, it's late but I really wanted to wish Lexie and Kristen a very Happy Birthday!!! Happy Birthday guys!

I also went to see 'The Lord of the Dance' today and that was spectacular. Absolutely breathtaking.

Well, like I said it's late but I will update tomorrow more about the weekend!

________________________________________
Saturday, February 14th, 2009

Happy Valentines Day everyone! Please keep praying for Heather! She's stable but she still needs all your love and prayers!

We have a few things going on today...

My friend Rachel and my cousin Lily are coming over for a little birthday sleepover! We are going bowling later and then after that, we'll improvise! But I predict that a little bit of Jeff Dunham and lots of pictures are in our future.

Unfortunately, because of Mom's propensity to break all electronic devices that come into her grasp, our computer isn't accepting our camera memory cards for some reason. Looks like we'll have to get it taken in to be looked at. When it's fixed, I promise...a picture explosion will take place!

Also, poor little Flabby Abbey had to go to the Vet today. And yes, I said 'little' because the little tyke only weighs 17 lbs now!! But we are concerned that she may have diabetes because she has been drinking and peeing a lot! Hooo boy....and we all know that I'm going to have to be the one to give her the shots! Like Alec said, "Awww, you'll be shot buddies!".

Hmmph.

Anyway, I had a bad morning today, but I'm feeling better now. I started getting a bad headache(oh, you know what I mean...by bad, I mean worse than usual)last night. I asked Mom if a cold front was going through...and she said,"Nope, no snow or anything is planned.".

What do we wake up too? Three brand new inches of snow!

Ahaha, told you so! Seriously, I have like a super power!

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Friday, February 13th, 2009

Well, today is a bit better concerning my head.

But first, please go to Heather's site and leave her a message and please PLEASE pray for her and her family!

I mean it! Before you read my update, you have to say a prayer for Heather and/or sign her guestbook!

Love you Oney Family!

OK...so here's the low-down on my birthday.

I woke up about four hours before Mom so I had to wait FOREVER for my birthday presents! When she did wake up, I got to open my first present-

(OK, OK, our bathroom mirror is just a little smudged)

Then we went to the Mall to buy some sweaters for ourselves...all the while Mom was strongly emphasizing that we HAD to be in the car by 12:50. Why? 'Cause Mom had arranged for a birthday announcement on a local radio station!

But there was a bit of a problem with this present...you see, Mom had the radio on low so we didn't catch her Sweet Sixteen Shout-Out till it was about three quarters of the way done. And I didn't know WHAT the heck Mom was going on about because I didn't recognize her voice! She had to tell me that it was her saying happy birthday. But she also requested a song so I at least got to listen to that!

After that, we went to pick up Alec from school early and we went to the University of Michigan!! When we got there, we watched the team practice for a while and then they took me to the locker room. Upon entering the locker room, this is what I saw!

The softball team had decorated my locker! Some of the girls told me to open the locker so I did....

But it was empty!! For those of you who know me in person, you know that I have a rather conflicting personality. I have a very sarcastic/sadistic streak in me but I also don't like to seriously hurt people's feelings(Can you say Oxymoron?)! So there I was standing in front of my locker thinking, Aw snap, should I act like it's no big deal or should I joke with the team and laugh it off?? I settled for a perfect medium...I turned to Mom and said,"At least I got ONE surprise today!".

It was funny! I think there must have been a miscommunication between the ones who jazzed up my locker and the ones who told me to open it! But anyway, it was hilarious and my locker looked sweet!

Then Coach Hutch brought the cake in and everyone sang 'Happy Birthday' and I blew out the candles...

Then we took the cake into the common room and....we ate it! It was really good! Then we all sat and talked and joked around, it was so cool!

I just want to say thank you to the U of M softball team(who won their first games in Florida and also just won a game in Las Vegas, yahoo!)and also the Friends of Jaclyn Foundation!!

Well, eventually we had to leave so we said good-bye to everyone...we plan on going to most of their home-games and we are going to a few of the away-from-home games as well! But I had a fantastic time there and I can't wait to visit them again!

From there, we went to Great Lakes Crossing Mall and we ate at the Rainfrest Cafe because I had a coupon for a free Volcano!

Boy, did I regret it! Just kidding...it's just I'm not completely into total strangers singing to me in the middle of a very crowded restaurant! But we had a lot of fun there too!

This is me and Mom sitting outside the Cafe waiting to be seated. We ate our food and then....

The singing started! So did the staring and pointing and...OK, OK, I'm getting a little paranoid here. By the way, this cake is what they call a Volcano at the Rainforest Cafe.

Anyway, I had a lot of fun and I daresay it was my best Birthday ever! I got two cakes AND I wasn't even in the hospital!! Here are some more pictures!

In front of my decorated locker.

Alec and I.

This is the ceiling of the Rainforest Cafe. I thought it looked cool!

I was thinking,"Man oh man, Mom you better sleep with your eyes open tonight!"

Ah well, it worked out in the end!

Again, let me reiterate this....BEST BIRTHDAY EVER!!! Thanks to everyone who made it so!

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Thursday, February 12, 2009

Huge, urgent, emergency prayer request. One of Sammi's best friends, Heather Oney, is on a ventilator tonight. We're not exactly sure what the problem is but this girl, who has more fight in her than most people, needs prayers now. Please take 10 seconds and ask God to help save her life. She is funny and sweet and kind and she makes everyone happy to be around her. Please sign her guest book. The link is above. We love you Heather....

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Wednesday, February 11th, 2009

We have a huge cold front coming thru, the same one I would assume that made tornados tear thru Oklahoma. Sam's head is KILLING her so I don't think she'll be updating til tomorrow or maybe even Friday. But she had a fantastic birthday. We all had a great time. So hopefully you'll hear from her soon. Poor thing just keeps looking at me and saying, "My head hurts". I don't know what to say to her.

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Tuesday, February 10, 2009
Today was the best Birthday ever!!! I had lots of fun and, believe it or not, there were actually some surprises in spite of Mom's inability to keep a secret!

But it's late and I'm really tired...But I REALLY want to give this birthday justice, so I'm going to update tomorrow and tell you all about it then, when I'm in tip-top writing/describing shape. There is a picture of me and the Softball Team though, up above!

Please pray very hard for Luke and Heather.

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Monday, February 9th, 2009

Today has been a really bad day so far....still, I'm holding out hope that all this crappiness is just my body eeking out some extra crap so I, in turn, feel extra good tomorrow! I was up all night with palpitations, then when I woke up for the day(at 7:30am)I had a bad headache, then I started to get nauseous. I took a Zofran for the nausea, and when that didn't work, I took a Benyadryl. I also took a Lortab for the headache...so between all that I feel asleep at about 12:00pm and didn't wake up till about 2:00pm. Needless to say, I slept right through my school meeting which was supposed to be at 12:45...I guess I'll see Mrs. Baker on Thursday.

I am ready to turn sixteen!! I've read and watched 'Harry Potter and the Order of the Phoenix' for the last time as a fifteen year old. I'm now writing my last caringbridge journal entry as a fifteen year old. Later, I will write in my regular journal for the last time as a fifteen year old. As per the R/K family tradition, Mom has revealed at least 15 supposed Birthday 'secrets'.

I think I'm all set.

I'd like to thank everyone that I got a present or card in the mail from today! I loved all of them! Thank you everyone!

Never mind that Mom pretty much killed herself walking up the stairs with all the packaging and envelopes.

Right. Well, I'll update tomorrow of course, after all the festivities are over! I'll be sure to take pictures with my Surprise Birthday Camera.

Please, PLEASE, pray for Luke who is having his surgery tomorrow and for Heather, who is still in the hospital...Love you Ronco and Oney Family!! I'd also like to wish my Uncle Mark a happy birthday today!

P.S. And of course, there is a new W F R/K Story posted!

P.S.S Whoever is the 130,000th visitor, please sign the guestbook and let me know!! Thanks!

Sunday, February 8th, 2009

Only two more days of being 15!!

Mom ruined yet another surprise though...

MOM: Hey, Sam, we're getting a bunch of needles in the mail on Tuesday.

ME: MOM! I'll just bet those needles were supposed to be a surprise Birthday gift from someone! Way to go.

MOM: Yeah, when I told the delivery guy that Tuesday was your Birthday...he said to have a nice day.

The whole Mom-not-being-able-to-keep-a-secret has sort of become a running joke, as you can see.

Anyway, today has been a pretty sucky day. I've just been feeling really run down and tired for some reason. My head's been sorta bad on and off, but not too worse than usual. It of course might be the Keppra. I'm supposed to go up on the dose again tonight but I'm going to wait till after my Birthday. It'd probably put a damper on the festivities if I acted like a Narcoleptic all day.

Personally, I'm hoping my head is getting some extra pain out of it's system today...and therefore, gearing up to NOT hurt too bad on Tuesday! Fingers crossed.

I have school tomorrow at 12:45. It's been going pretty good. My teacher, Mrs. Baker, is really nice and she's really fun.

Please keep up the prayers for Luke and Heather!

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Friday, February 6th, 2009

I've been feeling OK today...I think the Keppra is sorta working. It's just that I started it after my headaches got really bad in early January, so now you could say that I'm back at square one and the headaches are just at the level it was before they got really bad. But Dr. Smietana wants to go up on the dose at least once more, so hopefully....the higher we go on the dose, the lower we go on the Wong Scale.

Speaking of the Wong Scale....I think I have next week's W F R/K story!! Yes, that's right, you have to wait until Monday to read about it!

Only four days to go! I'm really looking forward to this Birthday! Even if about two-thirds of it, thanks to Mom, is no longer a surprise. Seriously, it's not like I tortured her! I'd just say in passing...something like, "I wish we were going to see the Softball Team on my Birthday!". Then Mom would say, with all the reluctance and guilt of a person you'd think was, like I said, tortured into revealing this information,"Wellll, we are.". Of course, by then, it's too late to cover my ears. Also, my temporary leftness deafness(Hey...I like that, Leftness Deafness!)didn't do anything to diffuse the situation, which figures. I'd then cry out,"MOM! Stop telling me stuff!". But it was always too late. The damage was done.

That's how I found out I'm getting a camera and a jewelry box for my birthday. And that Dad's taking me to buy a guitar tomorrow. And that I'm going to see the U of M Women's Softball Team on Tuesday.

Sigh. Oh well. Mom says I still don't know everything...so...I'm prepared to be pleasantly surprised in at least some respects on Tuesday! And I know it'll still be fun, I can't wait!

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Thursday, February 5th, 2009

Okay, finally found another music video that I can use on the website and as an added bonus, I also found that nifty little heart that show the lyrics!

Coolio.

Only five days to go! Unfortunately, my Mother sucks at keeping secrets so I know all my birthday presents and plans. All I want for my Birthday is a surprise, is that too much to ask?

Anyway, I'm feeling better today, at least tiredness wise. My headache has been bad on and off but the barometric pressure has been going down today so that's why. We went to the doctors yesterday and all Alec's bloodwork was normal so we still don't know exactly what's up with that kid. On the other hand, I have to go see an ENT for my ear. All I want is to be able to hear, is THAT too much to ask? Ah well.

So, that's pretty much it. Please keep praying for Heather, Kasey's Family, and also, Luke, whose link is under camp friends...he is having a very important surgery on the tenth and could use some good strong prayers too!

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Wednesday, February 4th, 2009

Can someone do me a favor and just let me know in my guestbook if the music video is working? It isn't on my computer and for some reason, the website where I get my videos from isn't working either. Thanks!

I had school today. It went OK. I'm pretty tired today, but my headache isn't as bad as it has been the last few days.

Alec and I are going to see our regular doctor today. Alec is getting some blood drawn to see if we can figure out why he has been feeling so crappy lately. I'm going to get my ear looked at and hopefully, that'll be resolved once and for all!

Ok, like I said, I'm really tired so I'm gonna go for now...but please pray for Kasey ,who passed away, and my friend Heather.

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Tuesday, February 3rd, 2009

We're supposed to get a load of snow tonight, and actually it's snowing a bit now, so today is another crappy day. Only six weeks left of winter...but I've always been curious....has there EVER been an instance when Phil DIDN'T see his shadow??

Beth from Neurosurgery called us yesterday though, and Dr. Sood thinks that, most likely, the Hydrocephalus is causing the vision loss. Apparently, steady vision deterioration is common with long-term Hydrocephalus. Which is a little concerning, counting the fact that just seven months after my last eye exam and new glasses prescription, both my peripheral vision and my near-sightedness has decreased enough that I need another new pair of glasses. And, as you probably know, the Peripheral Vision loss is also a completely new development. They want me to see a Neuro-Ophthalmologist and they also said that, hopefully, the Neuro-Ophthalmologist can, hopefully, recover some of my vision. I'm not sure how they'd go about doing that but I guess we'll make the appointment and see. At the very least, I hope they can, at the very least, keep my vision from getting any worse. Cause the way things are going with the Hydrocephalus, I'll have the Hydrocephalus for the rest of my life. And the way things are going with my vision, if my vision were to keep going downhill, that wouldn't leave me in a very good spot.

It wouldn't leave the walls and doorways in very good condition either. The titanium plate in my head could start leaving paint chips(in the wall)and(more)dents(in my head)if I'm not more careful.

Please keep Heather in your prayers and please take a moment to leave her a message in her guestbook! I know she and her family would appreciate it!

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Monday, February 2nd, 2009

Hmmmm. Not really much to write about today either...

Why, you ask?

Cause Mom's at work.

Anyway, I've been just feeling overall blucky(is that a word? Ah, well, I like it!)today. Tired(from the Keppra), nauseous(from the weather), and of course, headachey(and who knows the reason for those??).

Only eight days till my Birthday though! In case, you haven't deduced that from all the excitement on my page...But I have an interesting topic for today.

For those of you who have any sort of disease or ailment of any kind...Do you ever notice how everything can be taken and turned into SOMETHING to do with the medical world? Ever since about December of 2003(when I really started realizing how serious my tumor was)I find that happening all the time! Like, take the state I live in...Michigan. It's initials are MI. I can't look at those initials without always thinking,"Oh great, I live in Myocardial Infarction, USA!". But it's kinda true, with Michigan's roads and Michigan's economy!!

Even more funny...there is a city in Myocardial Infarction, USA called Saline. I always pronounce it like the IV flush Saline and not like it's supposed to be pronounced...actually, I really don't know how it's pronounced!

Also, there's all those BP Gas Stations...every time Mom and I pass one, I think, "Oh look, it's the Blood Pressure Place.".

I remember one time when Mom and I were visiting Simonne at the hospital. We were talking about something...I don't remember what, but it was an exasperating and tiresome topic...one that made Mom say,"Oy, I need a drink!". I, on the other hand, was breaking through at the time...which means my Desmo had run out and subsequently, I was very VERY thirsty. So, without stopping to work out what sort of liquid Mom meant, I said very matter-of-factly, "Me too!!".

There are lots more examples I could write about...the most notorious of course being the CVS fiasco I just wrote about!

But when you have to turn your life around because of life-altering medical circumstances(and you happen to like playing with words like I do)this sort of thing tends to happen. You make the best of it. You adapt. You learn to live with it...and crazy as this sounds, you almost learn to love it! Love your new take on life, your new take on love, and your new take on...well, everything. If you don't do that, you end up pretty miserable.

If I hadn't spent my 13th Birthday in the hospital, I wouldn't have gotten two cakes to myself! If I wasn't a patient at Childrens Hospital of Michigan, I would never have gotten the opportunity to ride in a blimp or be a special guest at a Piston's Game. If I hadn't been diagnosed with a brain tumor, odds are I would never have discovered how much I like writing poetry nor would I have met all the amazing people at CHM, on Caringbridge, or at Camp Sunshine. They were all life-changing experiences(Yes, even the extra cake!). I'm glad I was able to be a part of all that, all because of a brain tumor.

And, come on....what's more liberating than eating popcorn out of an emesis basin because the hospital doesn't have bowls?

Sunday, February 1st, 2009

All right, it's now almost twenty after SEVEN and I have a W F R/K story!(finally!) Mom would just like me to say that her head is killing her and she is just...well....tired. That's why the following story happened. I believe her...as of right now, she's just sitting here laughing about nothing. It's part of the Annoying Giddiness Disorder that's so prevalent in our family, unfortunately.

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Setting: Mom and I were just sitting on the living room couch.

Subjects: Mom, her fatigue, and her tendency to get annoyingly giddy when she's fatigued.

MOM: Oh no, watch out!

ME:(I looked at her and braced myself for a sneeze, 'cause that's what usually happens...and mom's sneezes are fairly alarming!)

MOM: Burrrrp.

ME: (I just looked at her again, then said...) Oh, that's it? I thought you were going to sneeze!

MOM: Nope, I burped, I love to burp!

ME: You're tired, aren't you?
(then, at the same time, Mom was saying...)
MOM: Yeah, I'm a little tired, you see.
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Well, here is my page for February! I'll start the special section for our W F R/K Stories tomorrow, when I start a brand new journal entry. But there are all the new pictures...there's some in the album too! And the new music.

I think Alec and Mom are going to a movie later(Paul Blart: Mall Cop)but I don't think I feel like it today. The Keppra is making me tired and the weather is making my head and back hurt extra soo....It'd be kinda embarrassing if I fell asleep in the theatre. Which I could very well do, the Keppra Induced Sleepiness hits without ANY warning. Anyway, so I'll probably just stay home.

Well, there's not much to write about today...(Gasp! What?? No stories?)but I assure you, if anything comes around to happening, I'll post it! It's only twenty after one...

Please keep praying for Heather, Zoe, and Kacey! Heather and Zoe's pages are under(respectively)Camp Friends and Links, and Kasey's is below under the January 30th part of the post.

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Saturday, January 31th, 2009

Well, take a good long look at my page 'cause tomorrow, it will be completely different! As a sneak peek, I'll just say, Get ready for some cute past birthday photos, a new section dedicated solely to The Wacky Family Robertson/Kirkpatrick Stories, and some Regina Spektor! Just so you know, the song I'm picking for my website for the month of February doesn't exactly have a MESSAGE but since it's my birthday in TEN DAYS, I figure I should be able to pick any song I like! Plus, it sorta pertains to Valentines Day so that part fits too....anyway.

I forgot to say yesterday, that Dr. Smietana did have some insight on my ear problems. I was thinking that maybe since my decreased vision could be caused by the Hydrocephalus, that maybe a particularly drastic change in pressure damaged my eardrum or something, so I decided to ask her to take a look. She did say that it DID look like the ear passage in my afflicted ear look much smaller, like I mentioned before when this all started. However, she then said that there may just be a build-up of fluid back behind my ear that could be causing the deafness.

She THEN asked if I was taking any, say, antihistamines or anything.

I cleared my throat nervously.

"Um, well...only a benyadryl every night..."

"And sometimes during the day, if I need it...ahem."

She then said with a small laugh, "That'll do it".

She didn't really give any advice on what you do to get rid of the fluid though....I guess when Alec goes to see our normal doctor, we'll have to ask her. I can't really stop the benyadryl because if I don't take some before bed, I erupt(and I mean ERUPT)in hives. Mom washes the sheets at least once a week but it seems I'm really sensitive to whatever is making me break out in hives. I am allergic to dust and there isn't much you can do about that stuff, unfortunately. And for some odd reason, sometimes during the day, I get a cluster of hives all around my scars...I think it's because the skin around my scars are just more sensitive. But sometimes they are so big and there are so many, I seriously have to consider the possibility that I'm allergic to my shunt! Wouldn't that be just dandy? Most of us know what happened when they took my shunt out in 2006! Not good.

Just in case you didn't know, 57 is a VERY HIGH ICP reading.

So, back to the point. My ear. My stupid, good-for-nothing-at-the-moment ear. Hopefully, it'll go back to normal soon! I am getting really good at reading lips though.

Well, I realize that my last attempt to put myself in a bad light in a W F R/K story went a little off. But hey, it's not my fault Mom decided to break the sink during my update! That's fixed, by the way. But as it is(were?), Mom isn't here right now, so I think we're safe! And even better, neither is Cailtin or Alec...or Nik. It's just me and my embarrassing story.

Anyway, this story is sure to put me in a bad(and ALMOST criminal)light! Is it crazy that I sound so happy about it? Also, I would like to advise you all NOT to call child services or the police until you've read the story in it's entirety! Thanks very much.

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Setting: A suburban CVS in Hopewell Junction, New York. This is when Caitlin, Rachel, Mom, and I were staying at the Murphy's house for the Pumpkin Fest!

Subjects: Caitlin's forwardness and my un-thinking-ly-ness. And my considerable stock of pharmaceuticals.

Backround: We(Jaclyn, Caitlin, Rachel, and I)were at the pharmacy because Rachel had a canker sore and we were getting some stuff for that. But also, Rachel had hurt her knee rather badly some years ago and that was hurting her too. That's why Caitlin asked this question,

CAITLIN: Hey Sam, do you have anything stronger than Tylenol in your bag?

(this is where I plead with you not to make any hasty decisions...I did NOT end up giving her any of my meds...cause that's illegal! And don't get the impression that Cailtin does this a lot, it's just that Rachel's knee was hurting a lot and she didn't have anything herself to take. Thanks for understanding!)

Anyway, I then fixed her with an incredulous look and from *half-way* across the store....

ME: Psh, yeah!(like, duh!)

I then become uncomfortably aware that several of the customers that stood between Caitlin and I, turned slowly to goggle at what they obviously thought was a bona-fide drug-dealer, right here in their CVS. I tried, in vain I'm afraid, to correct the situation.

ME: Umm, but only what the doctor prescribes me!(like, duh!)
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I could practically read their minds.(Peeshaw, who does she think she's kidding?)

You see, here's the problem. I've been doing this for so long, that what seems normal to me is ghastly and unheard of to other people. I've been a walking-talking Pharmacist ever since I started losing Pituitary Function, and needed to, at the very least, carry around a vial of emergency SaluCortef and an IM syringe. So it didn't sound weird to me, in my head, to blurt out to everyone in that CVS that I regularly carry around a bottle of Vicodin with me! Of course, I realized the error of this when it came out of my mouth but that's just normal everyday life for me! Like this summer at Camp Westminster, I hit my head on a low branch. I then proceeded to say, 'OUCH! I think I hit a screw!". As you can imagine, people didn't know what the flip I was talking about. My counselor, Grace, said, "Well, that sounds weird." I proceeded to explain the scenario and she said,"Well, yes, now I get it...but it's funny the way you sound so blase about these things!".

As you probably already know...my family's and my sense of normalcy isn't...well...normal.

Ooh, shoot, I'd better go. Mom and Alec just got home and I should log off before something 'wacky' happens and I simply HAVE TO post the latest W F R/K story.

Keep praying for Heather, Kasey, and Zoe! Also, you should read a post written by Julianne...she made a very good and uplifting point about NOT letting pain stop you from living! Her webpage is

www.caringbridge.org/visit/julianne

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Friday, January 30th, 2009

Uh-kay....well, my head feels a bit better BUT it turns out....there WAS a cold-front going through. My head is always right!! That'll teach me....

Anyway, Dr. Smietana said we should see a Neuro-Opthalmologist again to see what the HECK is going on with my vision. Also, she didn't really have any suggestions for the POTS. But apparently, it is really amusing to adults when a normal teenager(like myself)chooses to say 'Postural Orthostatic Tachycardia Syndrome' rather than the simpler 'POTS'. Really, I don't see what's so darned amusing! I prefer to look at it as 'Well-Informed'.

Anyway, guess what? I got another W F R/K story for you!! You know, I might just cordon off a whole section of my webpage where I can just add a new Wacky Family Robertson/Kirkpatrick Story as soon as it happens! Mom gave me the idea, though I don't think it was on purpose....she looked rather horrified when I got all excited about it.

Anyway,

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Setting(s): At first, it was the kitchen table. Then, it was at the computer table.

Subjects:A very hot hotdog(I know, right? Who woulda thunk it?), and Mom's temporary slowness-on-the-uptakeness, and my undetailed-ness.

ME:(I chew a few bites, then I say....)It's too hot.

I then leave the table on that abrupt and, I admit it, undetailed note. I sit at the computer table and do some stuff on Facebook and Caringbridge.

Then, exactly FIVE MINUTES later, and I am NOT kidding...

MOM: OH! You're talking about the hotdog!

ME: Yeah....?
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You see, this is what went on in the mind of my mom. I sort of baffled her when I didn't specify on what it was that was too hot.

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MOM THINKING: Huh, that was weird. If she's too hot then why doesn't she take off her sweater? Or turn down the heat? Or put on a pair of shorts? Why did she go sit at the computer? Is it cooler over there or something? Is her shunt malfunctioning?? Oh, I bet that's it, aw crap!

Then, CLICK.

MOM THNKING: Ohhhhh, I'll bet she's talking about the HOTDOG, not the room temperature....
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So, there it is. Your W F R/K story for the day!

Keep praying for Heather and Zoe, please! Also, I would like to post an urgent prayer request for Kasey...his website is

www.caringbridge.org/visit/kaseyradford

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Thursday, January 29th, 2009

I'd like to ask you all to stop by Heather's site and leave her a quick note! She's getting her transplant today and I know she'd appreciate hearing from you and would love any prayers said for her! Love ya Heather, you're going to do great!!

I'm bored. I've watched a lifetime's worth of Youtube videos(Thanks for the suggestions Jaclyn!!)and I've ate a whole days worth of food already...I've discovered that I don't like whatever kind of pudding it is in the fridge(it tastes like oreo's or something like that)and that it's unwise to tip more than a quarter teaspoon of lemon juice left over from a salad into your mouth at one time(that tasted a bit like vomit for some odd reason).

And I think I've probably just grossed all of you out.

So I'm updating. I like this new journal system...I can update as much as I want and I never have to feel bad that some people could be missing some journals if I post too much. All you gotta do is look down and you'll see allllll the posts from this week!

If only I HAD A CAMERA! But noooo, Mom's stupid, dumb-bunny, frick-fracking camera had to kick it in December. Before that, whenever I got bored, I just took pictures of Abbey!! Drove Mom nuts but whatever. It's not even like that camera worked that hard! It was just a lazy and red-eye inducing old thing. It probably died because it wanted to rub in my face the fact that now...I'd gladly take it back in spite of it's ornery-ness for days like this!

Can you tell I don't have anything to do? It's one of those snowy/crappy/headachy days where I'm bored but don't feel like doing anything!

Oooh, hey I got an idea! I remember promising you guys like two years ago(yeah, I'm a little slow to keep my promises sometimes)that I would post the lyrics to a song that Mom, Alec, and I made up. If you were at Camp Sunshine in 2007, then you've already heard it, but I'll just post it now, shall I?

But first, some backround history. You may recall a song that came out in like 2005 called 'My Humps' by the Black-Eyed Peas. Well, after hearing that song, I went ahead and bought the CD that had it, and subsequently...Alec and Mom now love the Black-Eyed Peas more than I do! But anyway, one night we were listening to 'My Humps' and it just popped into my head....'My Shunt'!! So then, I put my iTunes on repeat so it would play the song over and over and during the course of the next couple hours, Mom and Alec and I made up our own lyrics to it. I don't quite recall all of it but it'll probably come floating back to me as I type the words!

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Ellen, Alec, and Samantha Robertson came up with the idea in 2006. Lyrics were presided over and improved on by the Teen Group at Camp Sunshine in 2007. All rights reserved.

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'My Shunt'(sung in the beat and melody of 'My Humps').

Watcha gonna do with all that shunt, all that shunt inside your trunk?

I'm gonna get, get, get, get you drunk
get you love drunk on my shunt!

My shunt, my shunt, my shunt, my shunt.
My shunt, my shunt, my shunt...

My lovely lumbar(or ventricular, whichever applies to you)shunt...Check it out!

I drive these doctors crazy, I do it on the daily.
They treat me really nice then they poke me with all these I.V.s!

Cortef then Dilaudud,
Benyadryl and then Toradol.

Caring, and they be sharing,
all their money got me wearing scrubs.

Doctor, I ain't asking,
but they like to give me Aspirin.

Topamax, Desmopressin,
I say no, but they keep pressing
so I keep on taking, and no, I ain't faking.

You can keep on giving,
but I'll just keep on living

with my shunt, my shunt, my shunt, my shunt. My shunt, my shunt, my shunt...

My lovely Lumbar shunt....Check it out!!

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So there you have it. The Teen Group sang this song in the Celebration Show at the end of the week. Here's a picture!

I can't tell whether most of us look proud...or a tad sheepish! But it was funny!

I'd give anything for a picture of Mom's face when she found out we were singing that song!

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Wednesday, January 28th, 2009

My head's pretty bad today because we got a snowstorm last night/this morning. We got the official report on the Vision-Field Test back from the Optometrist today, he said that it was pretty much the same but my right eye might have been a little worse...So I suppose Dr. Sood will just look at the report himself and get back to us when he decides what he wants to do.

But before I go back to laying on the couch....

Apparently my Wacky Family Robertson/Kirkpatrick Stories have been offensive to some members of my family because they 'don't show them in the best light'. So, to mollify them, I'll post a short little story today that doesn't show ME as being the sharpest needle in the Sharps-Container.(Do you think I'm in the hospital too much?)

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Setting: A 'Bath and Body Works' store in our old mall. This was a few months ago.

Subjects: My confusion pertaining to all the different meanings of the word 'Portable' and the un-specific-ness of the Bath and Body Works business.

Okay, Mom and I walked up to the counter with Mom's purchases(the guys at her work have a strange propensity for scented Anti-Bacterial hand soap and Mom is always the person that buys them and brings them to work). While she was paying, I was examining all the 'last-second' products stores like to flash at check-out aisles at you just when you think you've spent all the money you can. In particular, this large and round white thingy caught my eye for some reason. Upon looking at the package, I read "Portable Air Freshener" or something in that range. For a few moments, I pondered the ridiculousness of such a product...but it turns out I didn't really know what it was for. But before I found out the purpose of these THINGS, I turned to Mom after my pondering.

ME: What, do people just clip these on their shirts and go??

MOM: Chuckle...snigger...(then, eventually)LAUGHING UPROARIOUSLY AT MY EXPENSE.

Yeah, turns out those large, round, white air fresheners were for your CAR.

I knew that.

But for the people who don't know...they should specify what the thingies go on, on the packaging.
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OKAY OKAY!! I can't resist...this JUST HAPPENED A FEW SECONDS AGO!!

Setting: The kitchen.

Subjects: Mom and the kitchen sink and Mom's surprising physical strength.

Okay, so I didn't really see what happened because I'm sitting at the computer. But I heard it.

THE GARBAGE DISPOSAL: GRRRRRRRRRRR.

MOM:AHHHHHHH!!

ME:What???

Then I look around and what do I see? I thought maybe the disposal threw up on mom or something. But instead, I see Mom standing there at the sink...WITH THE SINK NOZZLE IN HER HAND!! I'm still laughing(and crying). A couple minutes later...

MOM: Jeez, I'm home ten minutes and you already have another story to post!

ME: GASP. You're right...I SHOULD post this!

Then,

ME: And Mom...I told you that's how you get the water. But I didn't mean for you to turn the nozzle THAT hard.

(If you don't understand that last referance, read the very last W F R/K Story.)

And now, if you'll excuse me, I have to go help Alec fill up the Humidifier in the BATHTUB because SOMEONE broke our faucet. But strangely, my head feels a lot better! But I feel a little dizzy from all the laughing.

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Please stop by Zoe Bergen's site and pray very hard for her and her family! Her link is below the journal, under Links.

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Tuesday, January 27th, 2009

FUNNY F R/K STORY.
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Setting: Mom and I were sitting on the couch in the living room. Alec was at the computer desk, which is right next to the couch.

Subjects: Mom's aversion to listening to two people talking at once, Alec's impatience, and my curiosity.

ALEC: When are you guys going to be finished with your show?(We were watching 'Friends')

MOM: Hold on, let me check.

(Mom is now checking)

(It is taking a long time)

A few seconds later...

ME: Mom, what IS the difference between Deficiency and Insufficiency?
(and then, at the same time)
ALEC: MOM! When...Is...The...Show...Going...To...Be...Finished???

MOM:(looking bewildered and over-whelmed)I don't know!!

(A couple seconds later)

ME: Mom, whose question are you answering?

MOM:....I don't know!!

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OK, this motion of having to change the symbols around my name is annoying so from now on, I'm just going to keep all the posts from each week up and then start a whole new journal the following week. Thanks for your patience!

And JEESH, one day into this new school thing and I already have two paper-cuts!! Owowowowow. But it went well, I've already got a lot of work done, and I can do it all at my own pace. My new teacher is extremely nice.

OK, well, we don't exactly know how today's eye exam went, but we got to look at the print-out and if anything, it looks worse today. Dr. Sood wants to look at this test too, and I guess we'll take it from there. From what Dr. Sood said yesterday though, it sounds like he thinks the Hydrocephalus might be the cause of my vision loss.

Today is cloudy and we're getting a snow storm later so my fatigue is a little worse and my back and head pain...more than a little worse. So I'll leave you for now and if you didn't read my update yesterday...don't worry, it's right below! Now isn't this working out great?

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Monday, January 26th, 2009

Weelll.....

I have to go back to the Optometrist tomorrow because quote,"There is enough consistency for this to be noticeable.". What the doctor meant was...

I bombed this vision test too!

I took a vision-field test today and it would appear that the vision in the upper/outer quadrants in both of my eyes is...less than satisfactory. A few years ago, and for some reason neither Mom nor I can remember the exact time period of my last test, I had a vision-field test, because of my tumor location, and since then, my vision has almost definitely decreased. I say almost only because the doctor said that they like to make sure there is a consistent pattern, hence the return to the Optometrist tomorrow-

Oh-my-lord, WHY IS MOM LOOKING OVER MY SHOULDER??? Yes, I'm writing to you mom....Thank You VERY much.

OK, she's gone. Anyway, the Optometrist talked as if he was pretty sure there is, in fact, a problem so I guess an MRI is in the near future. There is of course, the concern that the new onset of the deteriorating vision could be due to a recurrence and in any event, it's just weird that all of the sudden, this has come on. Of course, I'm all about the weird. It hasn't been at all rare for me to have a 'rare' reaction to something or for something weirdly rare and unexplainable to happen to me in the last six years!

So, I guess we're just going to follow up on this vision thing and see if we can find out what's causing it.

And the impaired vision certainly isn't helping with my magnetic personality...Doors and Walls love me! So between being almost drunkenly dizzy from the POTS at times and now the fact that now I have four blind spots, I'm seriously considering wearing a helmet and shoulder-pads around the house. My head and shoulders are the areas that I catch in doorways and high furniture the most.

But enough of all that...

Mom and I are very excited to announce that we received our One Meaning Couture today! The necklaces are absolutely beautiful and the 'Urbanites' are very cute...so if you haven't ordered yours, I suggest you do so now!! Spread the love, spread the meaning, and spread the word!

The website is www.onemeaningcouture.com

The tiredness from the Keppra is pretty much gone, although because I sleep so crappy because of the headaches and POTS induced palpitations, I still need at least one nap a day normally. I guess now all we have to do is wait and see if the Keppra helps.

Please keep praying for Heather, whose link is above, and also stop by Care Pages.com and wish Lexie's sister a happy birthday. Her page is EmilysEdition.... Happy Birthday, Emily!

One last thing...this is just in. The part you've all been waiting for. Another moment brought to you by the Wacky Family R/K! Seriously, this moment happened as I was typing this update so it's fresh!
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ME: Mom, could you make me some Ramon Soup, please?

MOM: But I want to look at the One Meaning jewelry!

ME: Well, just put the water on to boil, THEN look at the jewelry!

MOM: (exasperated sigh) Where is it?!

(My brain is now trying to figure out whether she's talking about the water or the jewelry. I figured she was talking about the jewelry but I decided to have a little fun and play it like she was talking about the water.)

ME: Umm, well, I can't explain exactly...but it's in the sink. Just turn the nozzle.

MOM: NO, THE JEWELRY!

ME: (laughing) Yeah, I know. I just wanted to see how you'd react.

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Sunday, January 25th, 2009

Well, I got to meet baby Micah and also see my cousin Lisa and my Aunt Ann, which was really fun! Of course, as Mom's All-Evil Camera broke before Christmas, I don't have any pictures I can post any time soon...but Dad took some with his regular old-timer camera so when he gets the film developed, I can have the pictures scanned...whenever that may be.

Tomorrow, I have an Opthamologist appointment to see if my peripheral vision has really deteriorated. You may recall that at Dr. Smietana's appointment earlier this month, I pretty much bombed the test for my left eye. But since it's been almost five years since my craniotomy, yet no one has noticed this before, it's a little alarming. Either no one has picked it up(which is unlikely since I've been to see Opthamologists, Optometrists, and Neuro-Opthamologist and every other Eye-Ologist because of the location of my tumor)or it's a new development...in which case, Dr. Sood wants to do another MRI soon. And now that it's been brought to the surface, I think the peripheral vision in my left eye is, in fact, just slightly worse.

So between that and my temporary deafness in my left ear, I'm not at all satisfied with the left side of my head at the moment. If it was only the left side of my head that was hurting all the time, I'd probably just say,"Screw it!" and lop the whole left side of my head off!!

OK, no, not really.

Alec is feeling a little better today though, I think. He's probably going to see our regular Doc soon though.

And I wanted to clear a little something omething up...You can all say I'm nuts all you want in my guestbook! I don't get offended by it(unless you happen to be a doctor or Truancy Officer who happens to think I'm 'exaggerating my symptoms'...GR!)and in fact, we all get a laugh out of it...let's face it, Us Robertson/Kirkpatricks wouldn't be The Wacky Family Robertson/Kirkpatrick if we weren't all barking mad!

Plus, you wouldn't get any of my Wacky Family R/K Stories...and admit it, that's the main appeal of my website!

Saturday, January 24th, 2009

I am going to Nana's in just a little while so this will be short! Alec is still feeling really crappy today...his head hurts and he's extremely nauseous....hmmm, it seems everyone with the last name Robertson or Kirkpatrick is forever doomed to have headaches! Hope not though, it's quite annoying.

Know what else is annoying? This stupid ear thing I have going on!! I'm still deaf and I'm still regularly making a fool of myself. Like Mom was talking about softball last night and something she said(I still don't know what it was that she did say!)sounded like,"Later, I'll have her get hit in the head by a softball...". I put on a wounded face and turned around. "Umm, excuse me? Mom's don't go around and order hits on their children...plus, it wouldn't do any good-my head's as hard as the Titanium Plate inside it, aha!" Mom just looked at me like I had gone insane...that's when I realized that I made a fool of myself for the first, or second, or eighth time that day.

It comes in useful when I want to pretend I can't hear Mom asking me to empty the dishwasher though.

Today at Nana's I get to meet my new cousin though, Micah! I'm excited about that!

Yesterday, I had a pretty bad Barometric Headache...Mom said there wasn't a low-pressure front going through the night before when I said my head was starting to hurt worse. Next thing you know, Friday Afternoon, the winds are going about 20 miles per hour. That'll teach anyone to EVER doubt my head. Sammi's head is always right! Except, I don't see why it has to hurt all the time...that doesn't make much sense.

Thursday, January 22, 2009

**Later Friday Night**Alec and Mom are on the way home...they did a CAT scan and it was normal. So Mom is going to talk to our regular doctor. It might just be that Alec is starting to get Migraines...Nik, Caitlin, and Mom all had or have them so that's completely possible. And hey, like I said to him last night when his head was really bad...

"You are officially part of the family now, kid."

**Friday** Alec and Mom just left for the ER because Alec has continued to have headaches and intermittent vomiting, now his neck's hurting. Please pray that they will find out the reason and that the reason isn't anything serious!**

Peeshaw, forget about February 17th...January 22nd, 2009 is the most important day of the year!!! Well, at least until July 5th, 6th, 7th, 8th, 9th, 10th, and 11th, 2009!!!

Why, you ask?

The applications for Camp Sunshine came out today!! Mom is filling them out right now!! Like Lexie said yesterday,"Wow, you guys are really obsessed if you know the dates the first day they come out!". I think that's putting it in a nutshell personally but yes, you could call us obsessed. Infatuated or stalker-material would work too. So from July 5th to the 11th, we will be at Camp Sunshine, if we get accepted, of course.

Also, today was the Connect meeting. It went great. All the paper-work is filled out and signed and shuffled away, and I see my teacher next week on Monday and Tuesday. Now, I can actually start earning credit towards my High School Diploma or GED, we still have to decide which goal would be best in that aspect. This is going to work out really well, I think.

Also, just to clear things up, I am not certifiably nuts! Apart from the diagnoses of 'Teenage Adaption Disorder' which was given to me by a doctor I DID NOT like at all. Said doctor gave me this diagnosis because quote,"I rarely smiled during their appointments and seemed 'down'.".

Like mom said, "EVERY teenager has that!!' and like I said,"I don't smile during the appointments 'cause that doctor ISN'T that funny!!'.

Also, the reason I might have seemed a little down at this doctor's appointment was because I had a horrible headache and the doctor was basically telling me to suck it up and resume life as normal anyway. So yeah.

But when you lump my family together, yeah, we could equal one certified crazy person.

There's OCD.

There's Paranoia.

There's Spontaneous Dance Disorder...which is especially annoying when you know you're going to be stuck with the person with this disorder for five more hours in Mom's five-person Chevy Malibu.

Perhaps most prominent...There's Manic Laughter and Annoying Giddiness.

And of course, the new development. Obsession. These are only a couple of the things we Robertson/Kirkpatricks are obsessed with. Camp Sunshine, Spoons, and The Flabbster. Also, Jeff Dunham, but I don't have a picture of him.

But when we are together in a crowded and public mall...that's just a recipe for disaster. But a good, fun disaster.

Until the Annoying Giddiness kicks in or the Obsession or Spontaneous Dance Disorder starts to freak people out.

Wednesday, January 21st, 2009

Well, first off, Heather is officially starting her Pre-Transplant treatments today, so please stop by her website, sign her guestbook, and pray for her! LOVE LOVE LOVE LOVE YOU, HEATHER!!

Only 20 more days till my birthday! In February, my page will be all about past Birthdays so if you want to see some extremely cute baby pictures, stop by February 1st!!

I'm still feeling the same, but thankfully the Keppra Fog has lifted...only one nap today! I'm still deaf in my left ear though...here's some proof!

Setting: 12 Oaks Mall in Novi, Michigan. I was buying a new coat because of a certain Six-Flabb in the house who decided she was too good for the litter box.

Subjects: My temporary deafness, meatballs, and a poor bewildered fast-food server person.

ME: Ummm, Mom, I think you'll need to order for me, 'cause I won't be able to hear the cashier person!

MOM: Fine.

So, I'm walking down the line and Mom tells the fast-food server person what I want. I admit, I was taking advantage of the situation, because I ABSOLUTELY HATE ordering food. Unlike when I write, people can never seem to catch what I'm saying and it's just painful for me because I'm so shy in person! But then...I was forced to talk.

THIS IS WHAT THE FAST-FOOD SERVER PERSON ACTUALLY SAID: One or two meatballs?

ME...VERY RELUCTANTLY: Four, please.

Yeah, this is what I heard..."Do you want two or four?".

Seriously, that's what I thought she said! So Mom took this opportunity to laugh herself silly at me, and told the poor bewildered Fast-Food Sever Person that really, I wanted two.

Several things contributed to this...First, because of previously mentioned deafness in my left ear, I couldn't hear! Second, because of previously mentioned shyness, I wasn't making eye-contact so lip-reading was out of the question. Third, I had a hat on, so I couldn't really hear out of my good ear either.

Add that to the fact that Mom was driving down all the parking aisles the wrong way and Alec was suffering from an insane bout of the hiccups that almost made him crash into a mannequin and a color-coordinated tie display on the way out, I think we attracted a lot of attention and everyone was quite glad to see us go!

But hey, this happens every time we go out in public. Yeah, not kidding.

Monday, January 19th, 2009

Well, when I didn't get the fatigue I experienced during my introduction to Keppra within a couple days of upping the dose, I thought I was home-free...nope, yesterday, I took two naps...so far today, I've taken three and it's only twenty to five! It's annoying. Also, this time, it's making me grumpy. I don't know if it's a side-effect of the Keppra or a side-side-effect of the tiredness. Hopefully, it'll stop really soon. I don't think falling asleep during my 'Connect' meeting would be all that conducive, although maybe it wouldn't hurt to illustrate the point of how much I need this particular type of program!

My hand-tremors are also really bad today...my hands are just going nuts! I was trying to paint my nails today because I was bored and I had to stop because more paint was getting on my fingers and hands then my nails! But also, I had to stop to take a nap so now three of my fingernails are normal and the other seven are dark gray with white tips...I'll have to get around to finishing them before I go out in public. The hand tremors also make it really hard to write and type, which is utterly maddening. It's like when I try to use them, they get all spastic and jumpy so it's hard to use them. I don't know if something about today is causing them to be bad, or if it's the Keppra too.

Hopefully, as soon as the side-effects lessen, the Keppra will start helping my headaches...it hasn't helped so far but I just started the regular dose a week ago, so I just have to wait.

Please pray for my friend Heather, who is going into the hospital tomorrow to start her Stem-Cell Transplant. Her link is under my camp friends above.

LOVE YOU AND MISS YOU AND PRAYING FOR YOU HEATHER!!!:0)(0:

Saturday, January 17th, 2009

OK, I'm bored so even though I updated yesterday, I'm updating again! It's MY website, anyway. If you want to, you can just go to Journal History.

Plus, I have another Funny Story that I just HAD to share!

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Setting: Mom and I are laying on opposite ends of the couch in the living room.

Subjects: My clogged up ear and my love for teasing Mom when she's just worked for more than a few hours and is tired.

MOM- Sam, how's your ear feeling?

ME, THINKING I COULD TAKE THIS OPPORTUNITY TO HAVE A LITTLE FUN- What???

MOM- I said,"HOW'S YOUR--???'

Then realizing I pretty much already answered her question, she assumed a 'You're so immature!' look at me and went back to her reading.

Me, very pleased with my work and laughing, went back to MY reading.

Then, this morning at 6:00 am...

Setting: I was up because of heart palpitations as usual and Mom was getting up for work in her bedroom.

Subjects: My still-clogged-up ear and my continued love for teasing Mom when she's tired because she had to get up early.(Mom's a TON of fun when she's tired...except when she gets a little giddy, then it's just annoying)

MOM- How's your ear Sam?

ME, DECIDING I HAD TO GET MY DAILY FIX RIGHT NOW!!- WHAT??

MOM- HOW...IS...YOUR--!!

When I start laughing again, she assumes a 'Just shut up and go back to sleep' look and resumes her getting-ready-for-work routine.
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Allrighty, so if you've read my 'Info you might need to know' paragraph recently, then you know I've added a new part. When I went to Dr. Smietana, the new Neurologist, she said most likely I have POTS or Postural Orthostatic Tachycardia Syndrome. It would account for why I'm so dizzy when I stand up and why my pulse gets faster and stronger at night when I've been laying down flat for hours. I've read up on it and a lot of the facts make sense and apply to me. It can also cause nausea, which I've been getting a lot more since around the time the extreme dizziness started.

One thing that really jumped out at me was that POTS can cause over-stimulation problems, which I have problems with on and off. If two people are talking at once or if the TV and the Radio are going at the same time, it bothers me A LOT. Sometimes, I get so irritated and overwhelmed, I'm reduced to tears. Also, POTS is a day-to-day thing and the symptoms vary widely everyday. So sometimes, I'm literally bouncing off the walls and doorframes and other days, I don't even notice it. I'm hoping to be able to talk to Dr. Smietana about ways to reduce the symptoms...just so I'm not a hazard to myself and our poor apartment!

I've also added a permanent link to Cole's Foundation, so if you get the inclination to check it out, go ahead! And if you can, please sign up to be a part of what this foundation is about.

Another website that you should all take a look at is www.onemeaningcouture.com It is a website featuring absolutely beautiful jewelry and 8.13�f the profits go to a different charity or foundation each month. The jewelry also has a very special and touching message....EIGHT letters, THREE words, ONE meaning! And if you are that curious, well then just go to the website and see for yourself! I dare ya! The foundation this month is Friends of Jaclyn so it would be great if you could help out! This is the websites first month of marketing and it was inspired by Angel Devon.

And of course, only about three more weeks till my birthday! I'm sooo excited! I don't know exactly what I'll be doing...I really wish I could go see all my friends from Camp!(hint, hint Mom!!!!)

Oh, I love this woman!(And NO, I'm not trying to bribe her...peeshaw. I don't think tonight's story would've been the best route, do you?)

Friday, January 16th, 2009

Well, in case you didn't read my update yesterday, let me reiterate that I have a brand new second cousin!! Micah Daniel was born on January 14th, 2009 to my cousin Lisa and her husband, Mark! Congratulations!

Also, mom called our normal doctor today, and I'm going to get some antibiotic drops for my ear. The canal is all swollen so she thinks it's just an infection. It doesn't hurt, it just rings and I can't really hear out of it. Mom said she can barely see into it because it's so swollen and narrowed. I don't know why it's infected either. I haven't had a cold or anything recently but hopefully the drops will help! Alec is feeling OK so far today, but he has taken two naps which is very weird for him. He's going to the doctor on Monday because he has been throwing up at night, only once or twice, for the last couple weeks and has been getting bad headaches. He was pretty miserable last night, so please pray for it not to be anything serious and for whatever it is to go away soon. I'm only a little more tired with the new Keppra dose so that's good. I'm not sleeping 30 or 40 hours a day like I was when I started it!

Also, something new has come up with my schooling. And it's a VERY good thing. My homebound teacher, Ms. Lennox, talked with her boss and they found a program that would be perfect. It's called 'Connect' and it's the same as homeschooling and homebound except I'll actually earn credit for my work and I have to meet the teacher outside of my house, like at a restaurant or something. But it's perfect and Mom and I are both very happy with this idea. We are going to a meeting this Wednesday to set it up and learn more about it. There's going to be a lot of paper work and stuff to fill out but it'll be worth it, I think.

One last thing...I've recently found a website called Cole's Foundation that pairs up people with kids and adults alike who have Carepages and Caringbridge websites. I've been paired with a very cute and sweet little girl named Alexa. Her page is www.caringbridge.org/visit/alexafelix so if you get a chance, visit her and sign her guestbook!

All you have to do is sign their guestbook a minimum of two times a week, but of course you can do more and send them gifts and stuff. As a proud caringbridge page owner, I know how much guestbook signing's mean to me so please sign up for this foundation! It doesn't take a lot of effort but it gives a lot to the person you're assigned to and their families. The website is www.colesfoundation.com

Here are a couple pictures...I know I haven't posted that many in the last couple weeks! As I'm tired, I'll just go back to the basics!

This Abbey begging for some treats! She didn't actually sit on command, she just got tired from bearing her weight for too long.

Abbey doing her third favorite thing. Number one is eating and number two is being petted.

This is her lazy face, which she affects about 80 percent of the time.

At the Robertson/Kirkpatrick Apartmenthold, it's all about The Flabbster!

Thursday, January 15th, 2009

Please pray for Zachary's family today, as Zachary died earlier today. His website is www.caringbridge.org/fl/zacharyfinestone

I'm going to make my New Years post a permanent part of my website, so that anyone who comes to my site in the future will see it and read it. And if we can keep one less child from dying from cancer as a result, then that would be miraculous and wonderful.

Also, Lily Langbein(link above)turned five today! And that's a miracle and it's wonderful. Happy Birthday Lily!

I am still feeling the same. A bit more tired today though, because I had to adjust the Keppra dose up by 50 percent Tuesday night. The tiredness will probably wear off in a couple days like it did when I started it. So nothing new really.

Except I am now coatless because a certain Flabby cat that resides in our apartment decided that she was too good for the litter box and decided to permanently(and I MEAN permanently, that coat is forever smelly and ruined)mark my coat. Just because I was going to buy a new one anyway...I still need a coat to go to the store in!! It's been 20 below here the last couple days! And now, like I mentioned, I have been rendered coatless. Thanks a lot, Flabby.

Ooh, ooh, this just in! I now have a new baby second cousin! My cousin Lisa gave birth to little Micah late last night! 7 lbs 6 ounces and 20 inches long! Conratulations Lisa and Mark!

This paragraph was added later Thursday night. It seems this week is "Acute Week" here in the Robertson Apartmenthold. Alec has been throwing up and getting severe headaches at night almost every night for the past couple weeks and my left ear canal has freakishly narrowed dramatically and has been ringing rather insistently and annoyingly. I can't hear at all out of my left side and Alec is in quite a bit of misery so please pray for him, that it's nothing serious and will go away soon! I'm not even sure what's going on with my ear but Alec and I are going to our regular doctor Monday, so I guess we'll see then. Thanks everyone!

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OK, also I can't actually find an 'Update Alert' system so here's how it's gonna work. Every time I update, I will change the symbols around my name at the top of the page. Like last time I put those parentheses by my name. Today, I replaced them with hyphens. Next time, who knows? But it'll be something different, so all you have to do, is come to my page and if the symbols are different from the last time I updated, you won't waste your time by scrolling to the bottom of the page, because there will be a new update!! Dilemma solved!

But also, Lexie's family could use some prayers! The link is up above, under my camp friends. Please visit her site, leave a guestbook entry, and pray!

Thursday, January 8, 2009 11:52 AM CST

Sam is coming home today. She still feels like crud but there's really nothing more they can do for her. They're going to give her some dilaudid pills, just a few to get her over the hump until the Keppra starts working. (If it does). She's sleeping about 20 hours a day, Keppra will do that the first few weeks. We'll just see how things go. We'll be home later, Alec has an appointment here at 4 so we'll do his appointment and then go home after that. That's it. Nothing learned, gained. Blah.

****We're home....She instantly fell asleep but she'll be awake in a few hours, she'll need to do her shot of desmopressin and take her pills, then I'm sure she'll be back to sleep. I called in sick for tomorrow. We're supposed to get 8 inches of snow tomorrow but it's not supposed to start until afternoon so Alec's forecast of a snow day is probably not going to come to fruition. He will be wishing I'm sure. Ok I'm going to be going to bed soon, take care all and thanks for thinking of our Sammi. She's such a special girl and this all just seems like a waste.

Wednesday, January 7, 2009 10:06 AM CST

They admitted Sam last night and this morning they tapped her shunt, took some fluid for infection studies and cell count. I came home to be with Alec. He was still awake when I got home. He had convinced himself it was his fault she was sick. I had told him that she was better in the morning, that she was talking to me etc. By the time we got home, she was non-communicado again therefore, it must be his fault (in his mind). I explained to him that it's not his fault, her headaches have nothing to do with him, in fact they've been getting along fabulously and have been having a lot of fun together, when she's feeling well. I'm not sure if he believes me.

Chris is with her now and I'll be going, with Alec, after school. She'll be alone at night, which is ok. She's almost 16 now and as long as she's able to get around by herself, she's ok with it too. Simonne is there so she has someone to talk to if need be. Her nurse last night was new but was really really nice. Last night there was a freezing rain storm, many freeways and roads were closed but by the Grace of God I made it home ok. The township I work in had a 40 car pileup on an overpass. Before I left the hospital I called work to see how the roads were. Albert suggested I take a helicopter. That's how bad it was. Ok, I have some housework to catch up on before I go, so I'll update later...Take care all...

Tuesday, January 6, 2009 10:55 AM EST

We ended up downtown again last night, same drill, dilaudid and send us home. Only last night, they wouldn't call neurosurgery. They did a CT scan, said her ventricles were fine, there was no need to call them. Follow up with neurology and if you want you can spend the night in the ER, they're full upstairs, no beds available. We said no thx and ran out the door. I understand being full. I don't understand not calling us back yesterday and not calling neurosurgery when Dr Ham was the one that told us to come down there in the first place. I'm really not happy with the way she's been treated. The first night, they said they were going to admit her. So we sat and waited. Then they came in and said we were going home. Now keep in mind that every other time she's had dilaudid they said it's their policy not to send the kid home. Too dangerous!! Then they said they'd send us home with a script for a few dilaudid pills to get her through the night. Then they said neurosurgery said no. Then they unceremoniously kicked us out.

I wasn't going to write about all this because normally we're really happy with Children's but when your child is in extreme pain like she has been and it feels like you're swimming in the middle of the ocean with no raft and everyone is swimming around you and not helping you, it's a bit frustrating. That's what we've felt like the last couple of days. We'll just wait and see if the Keppra helps, I guess it can take up to a few weeks. Our plan for school is that she starts going to school on the 26th of January. Maybe the Keppra will start working by then.

She is feeling better today, she's talking to me, making eye contact and eating. So things are better. And she asked me to change the color of the background back to yellow! Yes ma'am!!

*****Sam has gone downhill during the day. Dr Sood is on call tonight so she's debating whether we should call. I hate seeing her like this. Discouraged, disgusted and downtrodden. Mostly disgusted at this point I think. And yes Mary Pat, she'll be 16 on February 10th. Hard to believe....

*********Just talked to Dr Sood. He seemed perturbed that they didn't call him last night from the ER. In fact, I don't think he believed me at first. He told me to bring her down and they'll admit her. I love Dr Sood. Ok we're off......

Sunday, January 4, 2009 10:00 AM CST

Sam's head is killing her. She saw the new neurologist on Friday and she suggested Keppra and some otc vitamins. One side effect of Keppra is grouchiness for the first couple of weeks. I giggled just a bit when I heard that, then Sam bit my head off then I stopped giggling, as I was driving and didn't want to get into a car accident as it was clear her next step was assault and battery. Obviously, she's not feeling well. The doctor noticed her peripheral vision is deteriorated which concerns me because no one has ever said that before and that's one of the side effects of tumors in this area so I'm not sure if no one noticed, if it's new or maybe the doctor is mistaken but it's just weird. I'm going to take her in to get her eyes checked again, just to make sure.

We had a nice visit with Simonne and her brother Chase yesterday down at Children's. Maybe Sam can add the photos later when she's feeling better. My computer skills are going downhill fast.

We are getting excited about the upcoming U of M softball season. It looks like we're going to get to go to a lot of games.

Dave Bergen called last night, he's Zoe Bergens dad. Sam has been invited to partake in the 3rd annual Red Wings Alumni game. Ck out www.caringbridge.org/mi/4theloveofzoe and click on the link (below) for the Childhood cancer foundation. It's a great cause and we'll be there!!!

*****We are on the way downtown, Sam's head is killing her, so they'll probably give her dilaudid and keep her overnight. I'll have to come back and stay with Alec, he has his first day of school tomorrow. Please say a little prayer for all of us.

****Monday am.....They gave her the dilaudid but sent us home. I just took Alec to school. He was nervous but went in by himself. She's really not feeling any better, we'll see how today goes.

Wednesday, December 31st, 2008 New Years Eve

Happy New Years Eve everyone! I'm working on a big Hail-in-the-New-Year update that I'll post tomorrow. Also, I'll be doing my monthly page makeover tomorrow so you can look for new pictures and a new song! Unfortunately, because Mom's camera is still dead(it died simply to spite me, I know it), I don't have any new pictures really and I have to have Mom take some regular old paper pictures to work to get them scanned. BUT, because her Scan-TO guy isn't there until Friday, I have to wait! But I'll think of something. You wouldn't believe how bored I get during the day! Okay, maybe some(or most)of you could, as you know what I'm going through.

Anyway, to fill in this sorta short entry, I will document what happened to our dinner last night. I don't have a picture because of previously mentioned evil camera, but I do have an old one that depicts a different meal. But I believe it gets the point across.

OK.

Setting-The Kitchen at Mom's house.

Subjects-Mom, dinner, and a temperamental can of Pillsbury Biscuit Dough.

So....Mom was opening the can of dough and, I grant you, a couple times in the past, the cans have erupted with a sort of loud 'pop!' but little were we prepared for the violent outburst this little can would bestow on us. So....Mom was opening the can and Alec and I turned to watch from the living room because we were anticipating the customary 'pop!'. BUT. So....Mom opened the can and...

'POP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!'
No, 'POP/BOOM!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!'

Alec, Mom, and I all jumped about a foot in the air and the next thing we knew-

The dinner rolls we were about to dig into(and at the Robertson household, or apartment-hold, the rolls are THE most important part of our dinner)jumped too, and I mean jumped, OUT OF MOM'S HANDS and went

'SPLAT!!!!'.

There, on the floor, were our beloved biscuits. White, puffy, and bursting half-way out of the can.

But Mom is a quick thinker. With a bend at the waist and a cry of "Five second rule!!", she saved our biscuits from the kitchen floor and popped them into the oven. YAY MOM!!!

After all this, the biscuits still tasted DELICIOUS!! Again, YAY MOM!

Seriously, I am not making any of these stories up. They're too stupid to make up! And they just seem to happen one after the other!

And seriously, you all should have seen Mom's face!! I'm laughing right now just writing about it. Hee-larious!

Okay, like I said, this picture is from another meal from long ago. But I think it illustrates the 'SPLAT!!!!' rather well.

Yes, there you go! The 'SPLAT!!!!' effect. But now, I know I need to explain THIS picture too.

Setting-Comerica Park, Detroit, Michigan. Mom, Alec, his friend DJ, and Dad were at a baseball game there.

Subjects-Mom, a hot dog, and a lame jokester that used the oldest and lamest(but it is funny...because it happened to Mom!)trick in the book.

This UNSUB(The legal term for an Unknown Subject)screwed loose the cap of a mustard bottle. My unaware Mother, who only wanted to spice up her ball-park frank, went to squirt on a modest amount of mustard from THE SAME mustard bottle. But, she ended up with this amount instead.

Just in case you didn't notice it the first time.

So there's The Wacky Family Robertson/Kirkpatrick story for New Years Eve!!

I love my family!!!!

Monday, December 29th, 2008

Please pray for Zachary , Baylie , and Kara .

Well, it's 10:45 and I'm the only one up! As a matter of fact, I've been up for three hours and 45 minutes. Those heart palpitations are really bothersome and the lack of sleep is really affecting me. I've been taking more Cortef just because I'm so tired all the time. And getting no sleep can't be helping with the whole headache deal. My head has been just horrible the last month or so. My hand tremors have been worse too. The Percocet I was prescribed doesn't work any better than the Vicodin so that was a dead-end. I see that new Neurologist in early January but I'm not optimistic.

Right, so I'm going to close with another funny story that happened before we left for Chicago last week.

OK, so I don't remember exactly what led up to this but Alec asked me what bubbles are. He was joking around and I took it in stride and answered,

"Bubbles are pockets of air surrounded by liquid or pockets of liquid surrounded by air....."

Then I went chattering on and on jokingly, well I don't really remember what I said but eventually I noticed Alec looking at me with a bemused and Are-you-insane?look on his face so I paused then said, "But I digress.".

Alec paused too, then said,"Um, is that bad?".

My family is just chock-a-block full of funny stories!

Gee, would ya look at that? It's the Wacky Family Robertson! Or Robertson/Kirkpatrick.

I love my family!!

****December 30*****Sam is feeling really crappy. Her friend Simonne is inpatient at Children's and she didn't want to go visit, that's how bad she's feeling. We're supposed to get a snow storm tonight, I suppose that could be why. This winter has been horrendous. It's just one cold front after another. There's just no break for her.

Saturday, December 27th, 2008

OK, Christmas is over. Now we're just in the limbo between Christmas and New Years. But I do have a funny Christmas Story that will hopefully make you look back on your own fond Christmas Memories. And who knows, I could easily become disowned from certain members of my family for disclosing this tale.

Right, so on the 22nd, the day before Mom and Alec left Chicago, Caitlin, Rachel, Alec, Mom, and I had our Christmas Gift Give-Away. I got two cute covers for my iPod. Rachel got some 'Mighty-Mend-It'(a super super glue for fabrics)and Caitlin got a giftcard for her favorite cooking gear store. Mom got a binder that organizes pretty much every paper that attains to her life. And Alec? Well, first let me document the events leading up to the unveiling...

CAITLIN: I hope you like your present!

ALEC: Well, I'm glad it's not pajamas!!

(Can you see where this is going?)

Upon those words, Caitlin looked back and Mom and I, and assumed a face rather like the face she makes in this picture.

Then Alec opened his present and what do you know! Pajamas. They were a rather cute pair of pajamas. I don't mean cute like bugs bunny flannel; I mean they were cool. They were a size(or three)too big so Alec had to return them anyway!

Anyway, I thought that was priceless!! Even though Alec will yell at me for telling this story and Caitlin will undoubtedly leave an angry guestbook message because I used that picture of her again!

So, for Christmas I also got(from Caitlin and Rachel)a cute stuffed owl that I got to sew myself, a emergency charger for my iPod, a cute hat and pair of earings, and Caitlin also took me shopping at American Girl(the new store is Hee-Yuge!)and I got a new outfit for my doll Kit. When I got home Dad gave me my presents from him...pretty much all the American Girl Doll Samantha stuff I didn't have before! To my outrage and bafflement American Girl is 'Putting Samantha in their Historical Archives'. Hmph. So after January 1st, they won't be selling her stuff anymore! Again, hmph. My Nana also have me a hat from American Girl and an outfit for my dolls that came with the same hat. Thanks Caitlin, Rachel, Dad, and Nana!

I decided to use the money that Mom would've spent on me to buy things for other people or maybe donate it to a charity or foundation. I haven't really decided exactly what I'm going to do with it yet. Thanks for supporting me in this Mom!

Well, it's late and I'm tired so bye for now!

Wednesday, December 25th, 2008 Christmas Day

This is how the Robertson's and Kirkpatrick's say Merry Christmas!

Thank you all for another year of support and encouragement. And to all my Camp friends and Michigan friends, thank you so much for your friendship. It means more to me than I could ever hope to fully express! It means everything to me. Merry Christmas and Happy Holidays!

Firstly, please pray for Baylie(tx/baylieo)and Zachary(fl/zacharyfinestone). Please take a minute to wish them a Merry Christmas. Also keep Devon's parents in your prayers(ny/devonlam), and Payton's family(visit/paytoncram). Also, please visit all my camp friends and Alec's site. And just pray for everyone to have a lovely Christmas. To be able to look forward to the new year with hope, and face it with courage, no matter their situation is.

Okay, so just in case you didn’t notice the date….Today is my Favorite Day of the year! Merry Christmas Eve to everyone! If you don’t celebrate Christmas, then Happy Chanukah, Happy Kwanza, or Happy Holidays!

Right now I’m at Caitlin and Rachel’s apartment in Chicago! Mom and Alec left yesterday for the train station at like, four o’ clock but didn’t get to Michigan till 14 hours later. The delay was apparently caused by a six hour snow-in delay, seat-hoggers, and an irate conductor with ‘Migrate-o-phobia’ who almost confiscated their tickets for roaming around trying to find better seats. Glad I wasn’t there!

Right now, Caitlin and Rachel are at work, so it’s just me and Zoe. Zoe, you might be interested to know, is Abbey’s sister! Abbey and Zoe were Rachel’s cats then they had to go because Rachel’s dad was allergic. So Rachel took Zoe when she moved out and we got Abbey! They are nothing alike! Zoe is all black(except for one whisker—extremely weird)and meows non-stop. And she is TINY. Abbey is every color and is basically mute except when she wants food, water, or entertainment. And she is HUGE.

I can do a more detailed comparison later. Mom’s frickin camera went on the frackin fritz so I can’t take anymore pictures! I'll borrow Caitlin's nice well-behaved camera for Christmas though.

I HATE that camera!!

P.S. look tomorrow for a little Christmas number brought to you by one of THE Robertson Family Christmas movies...The Musical Scrooge!

Sunday, December 21st, 2008

We're here!! Yesterday we went out to eat at the Grand Lux cafe and today we just hung out at Caitlin and Rachel's apartment. I'm just updating real quick because we have to leave and go back to our hotel now, but I'll update again when I come to stay at Caitlin's for Christmas !

Friday, December 19th, 2008

Oooookay, so the whole 125,000th visitor signing in thing didn't exactly work out! Oh well.

I'm feeling better today than I did yesterday, but we got a boat, no a plane, no a really big mansion...Ok, well, we just got A LOT of snow. It's craziness. It gave me a bigfoot monster of a headache(No, a yeti, no the abominable snowman!)while it was moving in but after the pressure leveled out, it got better.

But who cares about the weather here? We're gonna be in Chicago by this time tomorrow! Heck, we'll be in Chicago hours before this time tomorrow! I probably just jinxed myself and every other unaware soul on that train....

So, I'll update next from Caitlin and Rachel's computer in Chicago!! I'm really excited because I haven't seen the new American Girl store in Chicago yet...it's supposed to be HUGE, no wait, GINORMIC, no HUGANTIC!!

Mom, Alec, and I will be staying until Tuesday, I think, then Mom and Alec will go home and I'll spend Christmas with Caitlin and Rachel! Nik will leave for Michigan on Christmas Eve so he won't be there but I'll be able to spend time with him still this weekend and Monday and Tuesday! This is so keuool!!

No, awesome...No, Astronomically Spectacular!!

Thursday, December 18th, 2008

~~About quarter to five~~I'm home. They did a CATscan and a shunt survey, all of which was normal. Beth, he Neuro-Nurse, prescribed me Percoset though, to get me through until I see that new Neurologist next month. Sooo, yeah, that's pretty much it. I'm tired and a tad crabby so I'll leave you all to it and probably will update tomorrow. Remember, 125,000 visitor! Read the entry below!

I'm going Downtown today because my headaches are basically out of control. They won't prescribe me new pain medication without seeing me...I'm not exactly sure what(and if)they will do to help but they want to see me. I am NOT going to let them readjust my shunt, however. We all know how THAT worked back in October. I don't need my shunt falling apart at the seams again all the way in Chicago. Plus my shunt is as high as it can go, so any adjustment made would have to go lower and that would just exacerbate the problem because my pressures are already low most of the time with all these Low Fronts and Cold Fronts going through. I'd rather just stay the way I am than take the risk of feeling even worse, at least until after Christmas.

I really don't feel like going though. I don't need 20-30 x-rays and five attempts at adjusting my shunt and the adjustment period that follows. I don't need to explain, yet again, exactly where my headaches are and what kind of pain it is. It's always the same, except for the level of pain. I'm sick of it. It's not like they will be able to do anything to help my headaches. Except give me different pain medication, and I'm not even entirely sure they will. So we could be going down there for nothing because again, I'm not letting them anywhere NEAR my Medos valve. I'll update after we get home if I feel like it.

It seems like a lot of caringbridge kids and people I know who have Chiari Malformation and the like are all suffering from severely worse headaches. Please pray for them.

Kara

Julianne

Baylie

Also, real quick, again if you are the 125,000 person to come to my page, please sign the guestbook and just let me know! I don't know if I'll be able to reimburse you in any way, but I'll definitely make an announcement in my update! Also, I've added a couple things to the body of my page here and there so if you want some new, and relatively interesting, info, you can read it.

Tuesday, December 16th, 2008

A couple minutes ago, Alec and I watching 'Bridge to Terabithia' and during the part where Jess gives PT to Leslie, Alec said...

"We should name our dog PT when we get one."

ME: "Well, *we'll* never get because we'll only get a dog when each of us moves out."

ALEC: "No, we'll just have to get rid of--I mean, convince Mom."

*Insert the sound a record makes when it skips*

I just thought that was pretty funny, and it had to be documented! No, we're not planning to Get Rid of our Mother...that was a total slip-up, at least I think it was.....

I'm still extremely tired but my head is slightly better today. Truthfully, I was bracing myself for a far worse day yesterday than I had, so I'm thankful that it wasn't quite as bad as it could easily have been. But it was still a really low day...both for the barometric pressures and for me!

Since this weekend, I've been getting out of breath and dizzy sometimes when I stand up...almost like I'm about to faint. Not really, but I just feel 'not quite all there' and a little nauseous and all that. It gets better as soon as I sit down but it doesn't go away on it's own. Usually when I get dizzy, I can just pause and hold onto something till it passes but these little episodes haven't been cooperating. As a result, I've been running into more things...and it's not like I'm tripping over toys on the floor that aren't meant to be there. I ricochet off door frames and Abbey's big recliner chair all the time. Even when I know it's there and I make a conscious effort NOT to run into them, it's like my body just can't move fast enough to dodge them. And the dizzy spells don't come on all the time and they come on rapidly so it makes it all the more difficult to 'prepare'. Most of the time it's funny, but sometimes it really hurts! Like that time in, October was it?, when I just sort of fell into the wall and got a big bruise right smack in the middle of my forehead. I think it's partly the Orthostatic Hypotension, but it's definitely worse on days when my ICP would be low too, because of the weather. But it's been worse this year, most definitely.

And as Mom, updated yesterday, I don't have Scoliosis...I'm just plain crooked and flat-footed. It looks like my left hip and shoulder are simply higher placed. Maybe I should start doing my growth-hormone shot in my right leg more often. Alec on the other hand...crooked as a politician, to quote 'Forest Gump'. It's not quite THAT bad, but when they first brought it up on the computer, our mouths just went 'O'. We were totally expecting me to have the worst case, yet my back was completely straight. Just a little tilted, up in the higher part where my neck is. But Alec has a nice little curve in his Lumbar region and a cute little hump up by his neck. It's like Dad's Scoliosis branched off and we each got hit with half of it! But the Dr. Zaltz said clinically because Alec's curve is only 8 degrees, it's not really Scoliosis...yet. And like I said, I'm just crooked. And flat-footed. No wonder Rachel's Wii said my balance was off!

Aw snap it, I can't get into photobucket cause I don't know Mom's new password...I'll get it when she wakes up(she worked an all-nighter last night)then post pictures from this weekend. Dad and I went to Nana's house and Lily and Luke came over for a while! Fun!

OK, here are the pictures....

This is Lily, voluntarily posing for a picture taking.

This is Lily, trying to run away from my picture taking.

This is Luke trying to block out my picture taking.

Lily, Luke, and I laughing at Dad's attempts at picture taking.

It all depends on their mood, sometimes I just have to wait and snap a picture when they start laughing to get a good one.

Seriously? Is this not the most ridicurous(yes, I meant to type 'ridicurous', it's a saying of mine.)picture you have ever seen in your whole life? And she stayed that way for a good half-hour so you know she's comfortable sitting like that.

Oh, Abbey...sometimes there are no words.

Monday, December 15, 2008 10:13 AM CST

Well, it's Ellen updating, so you know Sam's not feeling well. She just asked me to call downtown and tell them her pain meds aren't touching the headache. I thought today might be bad, there's a wicked cold front going thru today (wicked is my adjective of choice in honor of all our New England friends). We have to see the scoliosis doctor today tho so if I take her downtown, it'll be tomorrow. Alec has an appointment downtown tomorrow morning anyway, she'll just tag along. We'll update after the scoliosis appointment.

*****Well for once it was all good news at the doctor. Sam's spine is fine. Well except for the shunt sticking out of it. She's just crooked and has just about the flattest feet Dr Zaltz has ever seen. Alec's spine looks crooked as heck on the xray but outwardly it looked good, only 8 degrees of whatever so it doesn't even qualify as "poliosis" (watch Jeff Dunham, Christmas special Achmed segment). So we just have to keep an eye on Alec's pre-poliosis.

Sam's headache is still pretty bad and she's breaking out in hives by her shunt tubing in her chest. So I'll take her downtown tomorrow. I left a message for them to call me and they never did. That's pretty frustrating. I'm just asking for a quick phone call to make sure I shouldn't bring her right down. I'm working some overtime tonight. I know at about 4am I'll regret it but the money is hard to turn down this time of year.

Ok, time for dinner. Cheese ravioli (everyone that went to dinner at Sambuca's knows it's my favorite) and garlic bread.

Please pray for Hadley Fox (cb/ca/hadleyfox) who passed away over the weekend. She fought her brain tumor for a long time and was one of the first kids we met when we started. Her mom Angela has always been very honest when writing about Hadley and I think very brave. We love you Foxes and will be praying for you this week.

Thursday, December 11th, 2008

This is going to be the best Christmas ever!!! I found out today that I'll get to stay with my favorite sister and favorite older brother for Christmas....IN CHICAGO!!! I loooove Chicago! Mom, Alec, and I are staying there from next Saturday till next Tuesday, then Mom and Alec are leaving to spend Christmas with Dad, and I get to stay with Caitlin and Nik!! EEEEEEE! Then I'll come home with Nik the day after Christmas and he's going to stay with us for a few days!!! EEEEEEE! I can't wait! Christmas in Chicago!

OK enough of that...(ha, yeah right, this is a big deal!)

I'm still feeling really crappy today...I've taken a grand total of four vicodin and two naps and neither helped one smidgen. I didn't even feel up to meeting with my home-bound teacher for the first time...she just came over to touch base and then she left.

I have an appointment again with a new Neurologist that Neurosurg recommended...I couldn't make the first appointment back in October because my shunt got disconnected the night before the appointment. Just my luck, huh? Soo, yeah I think the appointment is now for January 5th or something like that. Also on the 15th of this month, Alec and I have our Orthopedist appointment to get our Scoliosis assessed. To see just how crooked we really are!

OK, here are your daily dose of Pictures. Most of them are animal pictures...very cute ones too!

I found this picture today, and didn't know what the flip it was from! Turns out, Mom took this at the Ronald McDonald House...she said the squirrel was following her. I find this most amusing because most likely, Mom was freaking out before she recovered enough to snap the picture...and Mom freaking out is something extremely amusing to watch.

Awww, Abbey just learned her first word! Seriously, Alec and I were experimenting about five minutes ago and we saw that every time you say "treat" Abbey either comes running over or she raises her head excitedly and looks all around! That's my good kitty! So smart...or just when it comes to food anyway. This is a picture of her hunting for table scraps...oh look, she found one.

This is my Papa's dog, Lucy...she is so cute!

Ladies and Gentlemen...I present to you tonight...PROOF THAT MY EYES ARE REALLY GREEN-BROWN AND NOT RED!! I conquer you, O Evil Camera! Although, I guess you all are now wondering whether my pupils are really black or red...Dang.

Aww, now Alec and I are siting at opposite ends of the living room and taking turns saying "Treat!". Abbey head keeps whipping back and forth between us every time one of us says it! OK, now we're stopping because, pretty soon, she'll probably jump us and find the invisible treats we're torturing her with!

I wouldn't put it past her...

Wednesday, December 10th, 2008

My ticker is coming up to the 125,000 mark....I'd like to ask that whoever lands on that number to please sign my guestbook and let me know! Thank you everyone for all the support and prayers and messages that have meant everything to me, especially because I've been so cut off socially for the better part of five years. Thank you so much!

Well, I'm really bored right now, so despite the fact I just updated about 14 hours ago...I'm gonna update again! You can go to Journal History if you really really want to, but I'll warn you if you haven't read my last entry yet....it wasn't exactly my usual bucket 'o laughs. There are some good pictures though.

Still feeling pretty crappy. We've just been getting snow storm after snow storm here in Westland, Michigan and that always effects my headaches. It's like getting hit with multiple dodge balls in the same place - my head...I don't even have enough time to get my thoughts together and DUCK before the next ball hits me, and then the next one and then the next one. And every time another ball hits the same spot, I get a bigger and more painful bruise. And I still have a 'squishy' edemic(is that a word?)head so we can make this analogy even more realistic.

Ahem, anyway, like I said, I'm bored so there might be a fair amount more pictures than usual.

Aw, who doesn't like a good baby picture once in a while? I think this is when we lived waaaay up north in Petoskey. Believe it or not, I remember that house a little, even though I was only one and a half. I just remember Alec and I rocking on two rocking horses in a very white living room with that kind of warped glass in front of the door and I was talking. Although, looking back on it now and considering my age, I was probably the only one who knew what I was babbling about!

This is in the house at Wyandotte, earlier this year. I think it was in the middle of my awkward-gained-30-pounds-in-three-months-stage. I look just a little chubbier in this picture! Most of you are probably like, "Chubby?? Is she crazy?" but compared to how underweight I was before, I look positively hefty!

This is Alec up at a little place called Houghton Lake. I told you, we go there a lot.

We play a lot of Badminton up north...I told you, I rock at the leisure sports!

Me on the beach at the same resort. I think all these pictures were from 2006.

This is at Childrens...I think it was after that 'irrigation and debridement' I had last year when an ICP monitor got infected. As you can see, there is Betadine all over my head(Ugh, I HATE that stuff) but there isn't any monitor.

Me, Emily, and Lexie(see link above)at the American Girl Store in New York city. This was in 2007 after the Pumpkin Festival.

And last but certainly not least, we have our favorite cat, Flabby Abbey! In all her usual glory.

Here are some kids who need prayers.

Sydney

Zachary

Baylie

Hadley

Tuesday, December 9th, 2008

Today's been a rather worse day than usual...I was up at 7:00 because of heart palpitations, then I slept from 9 to 11:30, and I'm still really fatigued and my headache is really bad. I feel like there's nothing to help me. At least in the medical sense.

The shunt isn't helping, I mean it's doing it's job but most likely, the headaches are all down to the shunt and all the surgeries I've had because of it.

None of my doctors can help me, a lot of the time I get the feeling that some of them, not Doctor Sood or Dr. Moltz, but some of the others hate seeing me and try to keep the apppointments short because they don't know what to do with me. Luckily, my two main doctors, Dr. Sood(Neurosurgery)and Dr. Moltz(Endocrinology)don't send off that particular aura but there's not much more they can do for me either.

Even the narcotic pain medicine I'm on isn't helping because I've built up an immunity. The doctors seem reluctant to prescribe another type of narcotic, which I understand but at the same time, I would give anything for the pain to just let up, to just turn bearable, even for just one day. If I could just get a break once in a while, it would make it so much more bearable but I haven't gotten a break since October 2007. Not one pain-free second. The only time I've ever gotten close was the time I went to the ER and they found out my tubing was too short last summer. The ER physician gave me nearly three times the amount of Dilaudid he was supposed to on accident. I would've gotten up and danced around the hall, my head was so much better, except I probably would've crashed into the nurses station in my stoned-out-of-my-skull daze. I wasn't in danger or anything, the nurse just came in and strapped on some extra pulse-ox's just in case. I remember not wanting to fall asleep because I knew that when I woke up, the drug would have worn off and my headache would be back and I didn't want to miss one second of not having a bad headache for once.

I can't even escape the headache when I'm sleeping. It wakes me up every night, and more often than not, keeps me awake. Or even when I'm sleeping, I dream about having headaches!

But really, I'm not complaining...I'm simply reporting. I think of all the kids I know who have died in the short nine days we've been in December and I feel bad writing about my headaches, when so many families are in worse pain than I am and so many kids who are fighting are in worse pain than I'm in.

It's just that I am so tired and I never get to rest. Sorry this post is so grim and gloom and doom. Here are some pictures to maybe lighten up the site a bit.

This is Alec at the cottage we rented this summer up on a lake. And believe it or not, it wasn't Houghton Lake! It was called Little Island Lake.

This is me at the cottage as well. This was easily the biggest fish I had ever caught in my whole life - until....

I caught this fine specimen...seriously, it was huge! It was completely dark out side but Mom could even tell how big it was from the door of our cottage...all of the sudden, you could hear her exclamation of "HOLY $#!?!" ringing through the air, so surprised was she. I didn't even have to wait, literally seconds after the line hit the water, this sucker was stuck on the hook! Dad's just a tad sunburned from driving his boat around the lake all day!

Flash forward to the present...this is Abbey playing with the bead garland....until she got scared of the noise it was making, that is, and high-tailed it out of there.

This is Abbey and I sleeping and reading, respectively, on the couch yesterday.

Please pray for all the kids and families that are hurting, especially during the holidays.

Monday, December 8th, 2008

Mom and I were discussing some movies I'd heard of and wanted to see the other day...this is what was said,

(Me) "I want to get that movie 'Hound dog' with Dakota Fanning in it."

(Mom)"What's it about?"

Then Mom thinks about that for a second,

"And DON'T say hound dogs!!"

That's an annoying little habit of mine, to assume the duty of Captain Obvious. But in this next part of the conversation, I feel it couldn't be helped.

(Me)"I also want to see 'Girl with a Pearl Earring'.

(Mom)(Thinking)"Oh! Is that about Marie Antoinette?"

(Crickets chirping in the background)

I thought about how to phrase this nicely...Alas! It's too good an opportunity!! I can't resist!

"No Mom, I think it's about that one girl with, you know, the pearl earring..."

She was thinking of another movie and sorta spaced out there, which I understand...but I thought the whole debate was pretty funny, nevertheless.

Anyway, in answer to another obvious question, I'm still feeling crappy. But we got our tree decorations out last night so we had a lot of fun doing that. I got to string the tree aaallllllll by myself!! Except for when Mom had to tilt the tree down so I could reach the top, as seen in the picture above. Here are some pictures of the completely finished(and completely fake!)tree.

This is what it looked like after all the lights were on.

And this is the finished(and fake)tree. I know the picture's not that good but I'll probably be taking more, so when I get a good one I'll put it up.

This is pretty much all we saw of Abbey during the whole proceeding. And yes, she's still playing with those talking Mcdonalds Madagascar toys...

Likewise, this is all we saw of Alec during the whole proceeding...he's still protesting the whole 'fake tree' thing. He did help put on the ornaments at least!

And these are my favorite ornaments, at least on Mom's tree...

They are washed out because when you don't use the flash on Mom's possessed and evil camera, then the picture takes a few seconds to take. And when I have to hold the camera up that much longer, my hand tremors make the picture come out all blurry so I just used the flash so you could at least see the general idea of the ornaments. You can probably tell the first one is a Pug(LOVE PUGS!!) and the second and third are ballerinas. The fourth is this Santa figurine that's hanging from a parachute that I just like for some reason.

So, there you have it! Keep praying for
Payton's Family , Devon's Family , Hadley , and Baylie and also all my Camp and caringbridge friends who have links above and below.

As for me, I'm going to watch 'The Queen with the Pearl Earring'....

Oh crap, now I'M confused!

Saturday, December 6th, 2008

Later Saturday night

^^Payton passed away earlier tonight...please visit her page and offer some comfort to her family and pray for them.

Please continue to pray for Devon's Family , Payton , Hadley , and Baylie .

I've still been feeling the same...I feel like a broken record, but that's just how I feel all the time-headachy. Especially, with winter weather hitting full force here in Michigan.

Some of you might remember that I made a speech in Detroit(in one of the few NICE parts)for Childrens Hospital of Michigan's 120th anniversary last year. One of the other people speaking there was a radio host, Lisa, for 96.3 fm, which is a popular radio station in the Detroit Area. She had a kidney transplant years ago at Childrens. Well, Mom heard that she is hosting a fundraiser to get toys together for Christmas, and we are going to the mall she is going to be at and we're going to surprise her! So that will be cool.

I also put a newer picture in the Photo Album, since the other didn't really have much to do with the holidays!

Last night, Mom finally bought a tree so we could decorate her house as well. But yes, to Alec's disgust and to my relative distaste, our apartment building doesn't allow real trees, I would hazard a guess that the reason is the risk of fires. I think it's preposterous but there you go. Anyway, we(we meaning I)actually managed to get it put together in a reasonable amount of time. Mom has been known to put entertainment center cabinet doors on upside down and the like, so I took the liberty of...taking over. Anyway, here are some pictures depicting the whole event. We haven't found our ornaments though, so we still have some decorating to do.(I call changing out the lights!!)

The box(shudder)our Christmas Tree came in.

Bohold, the latest in Christmas Trees...Box O' Fake Pine!

Well, I mean, you can just tell....what a glorious breathtaking beauty this will turn out to be.

This is Mom having fun with the 'Section D' part of our tree.

I think the factory messed up...we asked for a fake PINE TREE not a fake PALM TREE....

This is me plumping up the palm tree branches. Oy vey.

At least someone is having fun!

I think it's safe to say Abbey likes our new tree...she was nibbling on it a bit. But with Abbey, you never know. She could have just been hungry and desperate...and too lazy to get up and waddle over to her food bowl.

Fake X-mas Trees - you get none of the pine fresh smell...but all of the pine fresh mess!

I have to admit...it does look nice.

Even if the fake pine cones are kind of tacky.......

Thursday, December 4, 2008

^^Friday, December 5th- Please pray for Angela and Danny, Devon's parents. Devon passed away early this morning. Please visit her site and sign her guestbook, and just pray for all the many people who loved, and always will love, Devon. I put this song on my website because it is one of my favorites and I think it pretty much covers what all of us from Camp Sunshine and anyone else who cherished Devon is feeling. I remember hearing it twice at Jaclyn's house while we were in New York, which is where I first met sweet Devon and her family.

Pray, Pray, Pray!

www.caringbridge.org/ny/devonlam
www.caringbridge.org/pa/lukeronco
www.caringbridge.org/visit/chaytonwilliamson
www.caringbridge.org/visit/alexafelix

Also, all the links are now working, I believe! If you could take a moment to sign my guestbook and let me know whether they are working for everyone, that would be great! I'm working on a schedule. I"m only going to update the pictures on my website once a month...now I'm on track! So this is my webpage for December...and you can look for a new design in January! I've also finally figured out how to resize photos so they are new photos in my album!

All right, I think it's high time I get around to the last installment in my Thankful Saga.

Firstly though, thankfully I haven't thrown up anymore. I pretty much felt OK(you know, at least normal...for me)after I vomited. I think maybe it was just a combination of things...like I didn't take my morning pills with food, and I woke up pretty early yesterday because of palpitations-like 5:30. Grr, I also woke up today at 10 to seven. I'm feeling OK today, but I think unfortunately, the worse headaches I've been having are my new normal. Like I've said before, this happens every couple months, where my headaches just get worse and stay that way. And it could be just winter too, I guess.

The new picture at the top is one I found going through picture piles a couple weeks ago, and I really liked it. This was taken by Dad while we were Tree hunting last year. Who knew my Dad could be such a good picture taker, it looks almost professional! In my opinion anyway.

OK, here we go...

Thankful Saga; Part Three-Camp Sunshine

This is Alec and I at the Camp Sunshine sign, our first year. Quite simply, I am thankful for Camp Sunshine.

I am thankful for the chance to be able to share my poetry at camp. Camp is the only place I've really shared my poems with people at and I am thankful for the opportunity to help people with them.

I am thankful for the entire teen group. It is such a fun group of people and I've made so many friends! This is the teen group singing an ode of love to the parents during karaoke night, two years ago.(now Mom's camera is giving everyone white irises...it's mad I tell you, mad!)

I am thankful for the volunteers. They don't really get anything out of it, except to experience that enchantment of camp, but they make sure the camp goes round. They help the parents to be able to relax and they make sure the kids can have fun and be kids while they are at camp. All the volunteers are truly amazing people! And they aren't afraid of making fools of themselves up on stage, as long as they get the chance to make camp that much more fun!

I'm so very thankful for all the true and awesome friends I've made at camp. That's the bast part of camp, not the beautiful lake it's by or the mini golf course or the high ropes course, but the people you forge a bond with and replenish that bond whenever you meet up again and the bond you keep all through the year and all through the rest of your life.

So again, I'm quite simply just thankful for Camp Sunshine. Camp Sunshine is simply and undeniably an amazing, amazing place. We've all been brought together because we have something in common-Brain Tumors have impacted our life somehow, whether we are a patient, sibling, or caregiver, we've been torn apart, then made stronger by a Brain Tumor. Something you have to go through to understand. That's the magic, we can EMPATHIZE, not just sympathize. When we gather around the tree that was planted in our friends memory...no words are needed. All the feelings at camp are unspoken but instinctually understood. But we do talk and share because we can do it at camp, when we can do it nowhere else.

We are all family at camp, and camp is home.

Monday, December 1, 2008

******This is another mini-update for December 3rd...I just threw up this morning, bleagh. Just please pray that I don't throw up again, because that would put me at risk for Adrenal Crisis and would also put me unquestionably in the hospital. I'm feeling lots better now though. Please continue to pray for Devon, and also another friend from camp, Luke, who has recently had tumor progression. Luke's site is www.caringbridge.org/pa/lukeronco. This really sucks...If I weren't so 'refined' and 'polite', I'd say it was something else.

~~~~~I thought I would do a mini-update real quick because some of you have raised the question, How can I smile when I'm in so much pain? Well, there is a lot to that, the first is simply that mostly, you guys see me in pictures. I have this OCD like tendency to smile when my pictures being taken. And most of the pictures I choose to be put on my site, I want to be 'smiley' because, duh, they're pictures! Mom has called me an 'Automatic Smiler' before on this site. And unfortunately for me, it's extremely easy to make me laugh so if someone wanted to take my picture, and I was unwilling or not feeling well, all they'd have to do was quote Jeff Dunham or say 'Hogadog'. Don't ask. Interestingly, that's how the second picture from the top of this page came about. Mom just cracked a joke and snapped my picture. But actually, I grudgingly like that picture. Grrr.

But the big reasons are that, I don't like to be seen in pain. It's embarrassing to me. I let my guard down sometimes at Camp where I know people will understand, but usually if you start crying at the mall or walk around school with a grimace on your face, people will either assume you're having a bad day or you are just an extremely unhappy and grumpy person whose being bratty. I know most people can't see someone being in pain ~24/7~ so I couldn't ask them to be understanding or sympathetic...especially if they are strangers and don't know what it's like to be sick. That's why I'm usually happy at camp. I don't have to put on an act so ironically I'm more happy there anyway. But really, almost all the time, I look like this.(and just so you know, these were absolutely the ONLY 4 pictures I could find that haven't been used on this site before, so strong are my OCD induced smiles and laughs)

This last one is a sketch that was done in the hospital in July 2004, right after my craniotomy. Actually, I think this is the best one to show how I usually look. Somehow the volunteer seems to capture what I'm feeling, no matter how much I TRY to look happy while he's drawing. He has done two drawings for me, and they both turned out rather like this!

So in truth, I don't make headaches look good....I just don't like THEM making ME look bad in public. But I think my family can attest to the fact that my moodiness, both from the pain and the pain meds, isn't that attractive! Also, I sound more happy when I'm writing on this site because I can take as long as I want to get the words out and people don't have to strain to hear me when I write. I also make more of an effort to sound coherent and un-shy when I'm talking to other people besides my family. My family can also testify that usually, a phone conversation with me consists of the other party asking the questions, while I grunt and say 'I don't know' or 'I don't feel good', in an annoyingly soft and mumbly soprano. I just don't like to seem sick, or maybe the more correct term is, more vulnerable.

So, I hope this helps everyone to understand.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The last two days have been pretty bad, unfortunately. It's been snowing and windy and all that headache-inducing stuff. I feel especially bad tonight, so I'm not going to install Thankful Saga, Part Three until I do feel good enough to give it justice. I don't want to take to writing down my gratitude for Camp Sunshine lightly.

Well, Alec also needs the computer for homework so I'm going to just post some pictures from this Thanksgiving. But also keep praying for Devon(ny/devonlam)and her family, and a very brave girl named Baylie(tx/baylieo)who goes through a lot of the same headache issues as me, but multiplied by ten. Her mom wrote a very eye-opening update that I found to be inspiring and something that needs to be said.

This is just a cute stuffed turkey that was on our table.

Oh my gosh, I love this picture! Luke looks so happy, doesn't he?

I took the liberty of teaching everyone who wanted to learn about spoons! This is us playing it. It wasn't quite as uncivilized as at camp....at the very least, no one was growling!

All the spoons we were playing with.

This is Larry the Canadian Shorts-wearing Cucumber playing the guitar.

Lily and I.

Luke and I.

Also, this weekend, I spent the night at Rachel's house! We went to see 'The Secret Life of Bees' and it was extremely good. I really want to read the book. We had tons of fun! This is a picture of us waiting for our turn on her Wii. I waited for an hour, only to be told my balance was way off and I must trip over my feet a lot. Obviously, it didn't take into account that I have Scoliosis(off-balance??? Puh-lease!)and I'm pigeon-toed! It's very easy to be walking and all the sudden, your foot gets caught in the cuff of your jeans when you're pigeon footed....NOT that I've ever done that...

*cough*

Friday, November 28th, 2008

First, please pray for a very sweet and very brave girl from camp named Devon. Her website is www.caringbridge.org/ny/devonlam

Second, I realize that most of the links on my page aren't working. I'll get around to that.

And third, I believe that there will be three parts to my Thankful Saga. Part three will be solely dedicated to 'The Best Place on Earth' and all the amazing friends and people I've met there!

I am thankful for my cousin Lily. We've pretty much been like this(pretend I'm pinching my fingers together)since she was born. So we have a lot of history and inside jokes that only we would understand, like 'Benadryl Boy' and 'Domonic the Christmas Donkey'. Don't ask. But we always have buckets o' fun when we get together!

I am thankful or my cousin Luke. He is Lily's younger brother, so we have played together since he was born too. Apart from the fact that whenever he eats too much sugar, he bounces off the walls(sometimes literally)for about a half hour then he sort of crashes and gets really grumpy, he's a pretty cool kid. Incidentally, Luke is 'Benadryl Boy'. Now when a kid earns a name like that, you know he has to be a lot of fun to be around!

I am thankful for my friends Simonne and Rachel. Simonne has been my friend since about two weeks before my craniotomy, when we were both in the hospital. Nurses have been known to duck and cover whenever we get together! No, not really, but Simonne has been known to squeeze lotion bottles just a mite too hard and I’ve been known to drop cups full of water and creating a huge mess of water/bits of Styrofoam. Simonne has seen me in excruciating pain, like when they took my shunt out, and she was also with us the night I was awarded the Michigan Hero Award, which was an extremely happy occasion. So, we’ve been through a lot together. Rachel and I have been friends for years, since I was six and she was four, I think. I don’t think Mom has ever quite forgiven us for April-Fooling her into believing my Fire-Bellied Toad escaped from his cage a couple years ago….. And Rachel is the only, and I repeat only, friend I had before I was diagnosed that has stuck with me the entire time. And that means the world to me. Because when a whole school full of friends couldn’t handle it, she apparently could.

And lastly(at least for tonight), I am thankful for my new friends, The Women’s Softball Team at the University of Michigan, and Friends of Jaclyn for arranging it! They are all so nice, and Coach Hutch has already done so much for us. Like the Football Game tickets in the press box, and giving me my own locker in the locker room!!! I know I’ve said this a couple times before, but I can’t wait until the season starts and I can watch them play!

Today was one of my OK days. I always have a bad headache but fortunately, I felt OK enough to get our Christmas Tree for dad’s house. That is my favorite part of the holidays….picking and decorating your tree! I like checking and changing the lights, especially. Here is a picture of our tree and some of Alec, Dad, and I at Greenfield Village(a historical outdoor/indoor museum opened by Henry Ford)where we picked out our tree.

Dad and I at the tree lot, picking out the tree…..

This is Alec, helping dad keep the tree straight while he screws it to the base…..

This is the string of lights I was getting ready for the tree……

This is me, hanging up ornaments……

And the finished product!

Friday, November 28th, 2008

OK, well I was going to continue my Thankful Saga but now my dad's computer is whacking out on me....I think the universe is strongly against this Thankful Saga! But I am not giving up!

Thursday, November 27, 2008

HAPPY THANKSGIVING!

Change of plan...there will be three, possible four sagas. What? I'm feeling Thankful! I'm feeling a lot better than I was yesterday, that's definitely something to be thankful for! I'm going over to my Uncle Eddy's house today. The things that I want to say I'm thankful for I will list after the dinner because I need some current pictures!

But I do want to say that I'm thankful for all of you faithful readers! I wouldn't be anything without you guys! Thanks for all the messages and support!

Remember today to stop and smell the turkey!

Wednesday, November 26, 2008

Ahem, as I was saying.....

You know, I'm all for getting excited for Christmas but I'm starting to feel like Charlie Brown(Ugh! Even my DOG has gone commercial!)...whatever happened to Thanksgiving?? It's a pretty cool Holiday, yet all the Department Stores choose to coast on through November without dedicating any shelve space to Thanksgiving...while all the while there has been Christmas stuff on the shelves since before the 4th of July! It makes me wanna make up posters saying "Remember the Turkey Day!" and post them in all the store windows! If everyone could know how precious every day is, then they wouldn't be so keen to overlook such an important day!!

OK, I'm done ranting. Thanks for lending an ear...or eye...or two eyes...oh you know what I mean!

Anyway, like I said in my post earlier today, I've been feeling horrible today. My headache is even worse than it has been all week, and so is my back. Hopefully I'll feel better tomorrow! I am going to my Aunt's house...on my dad's side of the family. So I'll be able to play with Lily and Luke!

I'd like to dedicate the pictures in this entry to the things I am thankful for. But I'm going to split it into two posts so look for the rest of my list sometime either tomorrow or Monday when I get back to Mom's house. If you come to the page and you think the post ended weirdly, it's because I am saving this post every couple paragraphs so yesterday's incident doesn't repeat itself. If you don't know what I'm talking about, you can go to journal history and read the previous post.

I am thankful for my Mom. She has always been there for me while I was sick and she appreciates the lost art of Subtle Humor. Which is why we both find each other so funny, even when other people might gaze at us completely dumbfounded. I love her, even if she just broke the number 2 rule-NEVER READ OVER MY SHOULDER AS I'M WRITING!!!! Rule number 1 is of course, DON'T WAKE ME UP IN THE HOSPITAL TO TAKE MY VITALS WHEN IT IS JUST AS EFFECTIVE AND DEFINITELY LESS BOTHERSOME TO LET ME SLEEP!!!! Ahem, anyway...

I am thankful for my brother Nik, who can always make me laugh with his cynical and hysterical ways. He is also a stickler for proper grammar, even while texting and it is fun to tease him about that while a safe distance away!

I am thankful for my sister Caitlin. She is a highly entertaining human being to watch. From the time she got lost in our five room apartment and couldn't find the bathroom to the time she was dancing in the car on the way home from New York last month. Now I'm just making an educated guess, but I'll bet that the face she is making as she reads this is also funny. As will be the angry guestbook entry she will leave for me.

I am thankful for my brother Alec. We both share an undying and unshakable love for Jeff Dunham and the one and only Flabby Abbey. Which brings me to my next point...

I am thankful for Abbey! From her two different colored eyes to her pidgeon toes and all 21 pounds in between...she is the perfect cat!

I have a lot more that I am thankful for, so like I said, I am going to split this into two sagas....tune back in for part two! And remember....Once in a while, you should always stop and smell the turkey!

Wednesday, November 26, 2008-Noon

I was working on a very long and detailed update yesterday when it idiopathically and rudely vanished without trace nor reason. So, look for an update later today. Today's been an extremely bad day so far, Neurosurgery has agreed to at least up my Vicodin dose by 50%. But as soon as I feel up to it, I will try to reconstruct the journal entry I SPENT AN HOUR-AND-A-HALF WORKING ON!!!!!

I'm seriously considering sueing someone for Undue Emotional Distress and The Wasting of My Time.

Sunday, November 23rd, 2008

I got some Madagascar 2 toys from Mcdonalds last week, and Abbey has taken a liking to them...every so often she'll start playing with them so out of the blue, you hear a "I know that's right!" or a "Let's go wild!". It's funny most of the time. Except in the morning, when all is quiet and peaceful-

Until all the sudden this electronic voice rings through the room saying "Allrighty boys!". It makes Alec and I jump out of our skin!

This is Abbey sleeping with the toy Alex. I wonder if she likes him because she somehow knows it's another type of cat...but I personally think she has more in common with Gloria the Hippo!

And this is another sign of the weather we have been having in Michigan! Yesterday, Alec and I looked on our little balcony and this is what we saw! The ice in the vase expanded and made the vase explode! You can see the pieces of the vase, and you can see the shape of the ice made from the vase!!

I've been feeling better this weekend, but honestly my headaches, and my backaches too, are still just horrible. They keep waking me up, I've been getting up at like 7:00am lately. So I've been really tired too.

Devon(ny/devonlam)still needs your prayers! And please sign her guestbook, it is really helping her and her parents, it only takes about 30 seconds! Heather(go to the links above)has started her new chemo treatment as well, so please pray for her!

Here are some pictures from this year at Camp Sunshine!

This is me in mom's car, right before we started driving!

A group of the teens playing the Wii that was in the new Teen Headquarters this year.

This is my friend and one of the counselors at camp, Mary Pat, attempting to play pool! It was so cool talking to you this morning Mary Pat! For those of you who have had the displeasure of trying to wheedle just one word out of me during a phone call...sorry! So, Mary Pat, you should congratulate yourself for keeping me on the phone for more than 14 minutes!!

This is Ann, Heather, and Mary Pat playing a card game...they are taking a break from the nail-biting terror that is a spoon game at Camp Sunshine.

The teen group all painted some rocks to place near the tree we planted in Jonathan's, Lee's, Eric's, and Kyle's(pa/kyledkerpan)memory in 2007. This is some of us placing them by the pathway.

It's true!

And this is probably what Abbey did the whole time we were gone.

That and eating of course.

Friday, November 21st, 2008

I'm still having extremely bad headaches. We have no idea why they have gotten so much worse all the sudden. Or why they are staying. Mom and I went out to eat at our favorite place and then we picked up Alec from school and went to the mall. We didn't stay that long though, because my back was hurting.

I'm not feeling up to finding a bunch of different pictures today and uploading them, so I'm going to fall back on Abbey for this one.

I guess the flash was too bright....

I love how her paws are crossed in this one! Abbey-So-Flabby is so refined.

Sleepy Flabby Abbey.

I love my kitty.......(can you tell??)

Wednesday, November 19, 2008 9:11 AM CST

Sam is feeling seriously cruddy but she doesn't want to go downtown. Her teacher is coming over at 1:30 today. I have a headache. Alec is at school. I had to take him to the ER last night because of his back pain but since he didn't have any blood in his urine, they wouldn't run any tests, so it was a total waste of time and money. I guess I'll have to talk to his pediatrician and see if I can talk her into a ct scan. There's something going on, it's not normal back pain. It's not muscular, it comes and goes and it's very intense. My test came out fine yesterday, so it was a big relief to the kids.

Please continue to pray for Devon (cb/ny/devonlam) and Hadley (cb/ca/hadleyfox) and Kasey (cb/visit/kaseyradford. And also a new friend who is getting some star treatment in Chicago this weekend thanks to our very own Caitlin (cb/visit/paytoncram) These kids all need lots of prayers.

Monday, November 17th, 2008

**Later on November 18th**Mom had to take Alec to the ER because of the back pain he has been having. Please say a little prayer for Alec.

**November 18th** Check out the new links I've put on the site. I'm probably going to put more, but for now I want to go and lay down for a while. Today has been a really bad day so far. I woke up around, I guess 8:45, because of palpitations then fell back asleep for an hour and a half soon after. Now I'm just reading and watching 'Love Actually'. I just wanted to update real quick. I think I'm just recovering from all the low fronts and everything...you could say I'm hung over...except it's just my brain that's dehydrated! I think it's not really the low pressures that give me worse headaches, it's the *changing* pressures that accompany bad weather, because even though the Barometric Pressures are good today, I'm feeling worse than I did all weekend. I think just the pressure changes makes my ICP go up and down, and I've always been sensitive to ICP changes. Like I said, we need to move to Hawaii.

Yeah, remember how I said it was raining last Friday? Well, Saturday it was both raining AND snowing. Thank the Lord for Press Boxes! Then Sunday, it was just snowing and today-Ewwww! Mom just killed one of those weird icky bugs with the million legs! Not a centipede, one of those bugs that no one knows its name! I hate those things!!

*Deep Breath*

Right, where was I? Ah yes-Today it was raining again, and now it's snowing!!! And it's giving me a major headache...blah. But I went to the U of M football game on Saturday and it was a lot of fun! You know, except for the fact that our team lost....and against Jaclyn's team, The Northwestern Wildcats, how embarrassing! We were winning until Half-Time then Northwestern started scoring a bunch of touchdowns! But as I said, it was a lot of fun and I can't wait till Softball Season starts!!

Here are some pictures from Saturday.

This is a picture of the band playing....We were able to go right down to the sidelines to watch!

This is a picture of Northwestern's band.

This is Coach Hutch and I down on the field! And yes, I realize I could be tried for treason for wearing a purple coat.(for those of you who don't know, purple is Northwestern's color!)

Alec, in the press box.

This is part of what went on at Half-Time.

Ha, I love this picture! We weren't allowed to cheer in the press box, so Alec and I had resort to sign language! This is our reaction to a touchdown made by Northwestern...the hand on the left is mine and the one on the right is Alec's.

Well, that's about all the pictures I took, at least all the good ones. It's almost 10:00 so I'm going to sign off but first please pray for a little girl named Devon. Her doctors have discovered a new, and inoperable, tumor in her brain and she is in the hospital. I met her and her family at the pumpkin festival this year, and Devon is such a cutie! Her website is caringbridge.org/ny/devonlam...please visit her page and leave a guestbook entry! Also, Mom is having her yearly mammogram tomorrow so please pray for good results from that!

OK, signing off now.....

Friday, November 14th, 2008

Seriously, who's in charge of the weather in Michigan?! Less than a week ago it snowed for about an hour(ouch, my head)now it's been raining steadily for like 14 hours(owowowowowow, my head!)! It's like the state of Michigan has ADD or something! Anyway, suffice it to say, today's NOT that good of a day. Really headachy(yes, that is a word as of now)and nauseous, which is hard to deal with when your seriously demented 21 pound cat wants to bat around your Zofran pill bottle and when she's done, would prefer to sit on it rather than let you return it to your medicine bag. At least it's not a needle!

Hopefully, our house(or apartment building, whichever you prefer)won't look like this come the next snowfall.

Yes, you are looking at Wyandotte...the city that got THE MOST INCHES out of this particular snowstorm...it was like 12 inches or something.

Yeah, this is the part where I stick my head out the door, whip it back in--then put the shovel in Alec's hand, and shove him out the door!

And if figuring out your way out from under this craziness doesn't raise your IQ to at least 165, nothing will.

Could this possibly be the same state?? We have to move to Hawaii....they say there are no barometric pressure changes there....also, we could go to San Diego.

That's all I'm saying.....

Wednesday, November 12th, 2008

Feeling about the same as I did yesterday. My homebound teacher, Ms. Lennox, came over today. She really has been very helpful. She's been able to answer all my questions concerning assignments, and she has been advocating for me at school, when it comes to getting my work from all of my teachers.

I'm still really excited about the football game on Saturday! It starts at noon. I've never been to a football game. I've played a few games of tackle football(this was all before I got my shunt of course!)but I don't really know the rules or anything, so hopefully Dad will be able to explain what the flip is going on!

But I have been to a basketball game! Here are a couple pictures from the Pistons game I went to last year with Simonne, Alec, and Mom.

Alec, Simmone and Me. We were laughing because mom's camera was going haywire and was flashing twice so that mom would put the camera down after the first flash, THEN it would take the picture! I tell you, that camera is possessed! This is at the game where I got the Michigan Hero Award last January.

I'm making this exasperated-smiley face because once again, the camera didn't want to work, and was taking FOREVER to take pictures!

And here are some more pictures, that all have to do with....whatever.

Alec and I playing Shuffleboard on(where else?)Houghton Lake. I have to admit, I have some maaaaaaad skills when it comes to this game! BUT IT'S HARD TO STAY AHEAD WHEN YOUR PARTNER IS CAILTIN AND SHE KEEPS LANDING IN THE -10 BLOCK!!

The whole Cailtin-Sabotage-Shuffleboard fiasco happened in Camp Sunshine by the way. This is a picture of me, Rachel, Mom, and Justin the last day of camp this year.

I thought since you've all seen so many pictures of Abbey, I'd treat you to some pictures of the other animals that live with me! This is Amber, Alec's guinea pig.

Well, that's it for today! Keep praying for my friend Heather!(visit/honey) And watch the Charlie Brown video up above, it's so funny! Even Mom LOVES to watch it....

Aw man...I can't do it!

Couldn't resist!

Tuesday, November 11th, 2008

YOU KNOW SOMETHING IS WRONG WHEN YOUR CAT FINDS SUB-Q SYRINGES MORE FUN THAN A GOOD LENGTH OF YARN.....

Now, don't go calling the ASPCA or something on me. The little(wait, did I just say little??)furball climbed up on the table this morning and knocked the syringe off the table so she could play with it. Pretty sneaky. I took it away after I snapped this picture...that's pretty much what I do all day at home...take pictures of Abbey. There are currently no less than 85 pictures of Abbey-So-Flabby(that's the name I like)on my phone. Mom tried counting them once, but she got so disgusted, she couldn't look at one more picture of Abbey.

I'm feeling a tiny bit better than I did this weekend, headache-wise but I still feel really tired and nauseous on and off. It might've had something to do with the snow fall, and accompanying low/cold front...but I guess we'll see how my head is tomorrow. My homebound teacher is coming over tomorrow. So far, I haven't been having too much trouble with the work. I've been trying to do at least one assignment per night. Even on the weekends!

This weekend however, I'm going to be at a Wolverines Football game! Coach Hutch got us Press Box tickets! I believe the Press Box is a box where the press sit but you can never be too sure about these things...but I'm really excited! I'll be sure to take pictures.

Until then, here are some old ones.

We're not sure why, but Abbey has been having a little too much fun with this blanket...she's been rolling around on it and licking, yes I wrote licking, it. I think it must be infused with some old catnip or something.

Well....you know what they say, when you gotta go, you gotta go!

I'm not sure why I'm sticking my tongue out. I think mom must be making the same face, but unfortunately, that ill-placed cookie is blocking her face! This is at my Nana's old house...she lived in it for the first 14 years of my life. And I didn't pick out that nightgown! I've never liked The Simpsons....I especially didn't watch it when I was one-and-a-half.

This is Nana and me using my metal detector Memorial Day 2007. We were up on Houghton Lake(yes, THAT place again)for my cousin Lisa's wedding.

This is me at said wedding...incidentally, because Lisa used to work at Camp Westminster, my summer camp for the last nine summers, her wedding was held in the outdoor chapel there. This is in the dining hall.

And this is Alec and I with our Papa's dog, Lucy.

Now, this is weird...We've all seen the Red-Eyed Syndrome that mom's camera invariably gives Humans. Apparently, with dogs...it's Green-and-Glowing-Scary-Pupil-Syndrome.

Seriously, even when I click, and I quote, the FIX RED EYE button...people come through looking like she and he-devils and dogs come looking like...I don't even know! He and she-demons or something! Every single time! All I want is some normal looking irises and pupils...is that too much to ask??

Mom needs to get her camera looked at...I think it's sporting some mortal grudge against me.

Sunday, November 9, 2008

I've been really tired this weekend, and my head has just been hurting more. So, there's not really much to report that would count as "news".

So, to make-up for my un-news-worthiness, here are some pictures....

My friend Simonne and I standing in the entrance hall at Childrens Hospital of Michigan. We're being iPodicals in this picture, which is the art of two people listening to one iPod, while trying not to be constantly yanking one ear phone out of the other person's ear!

This is my favorite picture of Simonne and I for some strange reason....

This is me at our family's little vacation spot we go to every summer...Houghton Lake, Michigan. I think this was two years ago, maybe closer to three. Hmmm, I've just realized, you can see the asymmetrical-ness of my shoulders even in this picture.....By the by, Alec's and my appointment with the Orthopedist is December 15th.

I'm posting this to make up for all the unflattering pictures I've posted of Caitlin the last couple weeks...at least Caitlin thought they were unflattering! Is this one OK?? Besides the red-eye we all know mom's camera is infamous for, that is.

Alec and I standing in front of the tree Camp Sunshine planted in 2007 to honor Jonathan, Kyle(pa/kyledkerpan), Eric, and this year, Greg.

And what would this post be without a couple pictures of our favorite flabby kitty?

This is how Six-Pack(that's Caitlin's name for her...we all have different names for Abbey...all adhering to her main attribute)sleeps a lot of the time...incidentally, this is the chair I was talking about, the one that Abbey has commandeered for her own personal use.(By personal, I mean exclusive...Abbey has been known to snap at you when you annoy her...and pushing her off the chair would count as an annoyance.)

This is The Flabbster's(mom came up with that one)usual stance when she is lying on the floor. Seriously, sometimes she falls asleep like this.

Please keep up the prayers for Heather(visit/honey). Also, Lily(visit/sweetlily)just had an MRI done...it was stable! Yeah Lily!

Well, that's it for today...hopefully my Photo Journalistic talent surpassed my Writing Journalistic talent today.

P.S. this is the backround I'm sticking with! All the others were merely experimental color testings...they failed.

Friday, November 7, 2008

My head pain is still pretty severe...and it's even worse today than it's been. The headache does this a lot...every couple months, it gets a little worse. Neuro wouldn't approve for anything else for the pain, so for now I'm still taking vicodin but honestly, it just doesn't even touch the head pain anymore. They said to make an appointment with the Pain Specialist, Dr. Sawni, so I guess that's what we'll do but she didn't really help....I guess we'll see.

My homebound teacher, Ms. Lennox, is coming over today. I've already been able to get some assignments done this week, and turned in so that's good. I think as soon as we get the ball rolling, I'll be able to catch up on this year. And unlike in Wyandotte, Ms. Lennox will actually be able to help me with my work, instead of me having to write down questions for her to deliver to my teachers and me having to wait for the answers before I can do any work. Ms. Lennox seems really nice so far, and she has been really helpful.

Well, my heads really hurting so I'll post just a couple pictures.

This is at Greenfield Village...for all you non-michiganders out there, Greenfield Village was founded by Henry Ford(the car-guy)and basically you go there and take a little detour to the 16oos to the 1900s. There's a bunch of houses with historical significance and you can ride in a Model-T and a bunch of cool stuff. If you're ever in Dearborn, Michigan...you have to check it out! And geez, was I tiny back then!

This is a fountain from an even cooler place! This is the pond that we launch our wishboats every year at Camp Sunshine.

And this is Nik, Alec, Mom, and me at Red Lobster! We were there for a little belated X-mas present giving last year. (Note from my mother....she's lost weight in the last year and her double chin is almost gone. Thank you from the peanut gallery)

Also, Heather(visit/honey)is OUT OF THE HOSPITAL! Yeahyuh! You are awesome Heather!

Love, Sammi

Wednesday, November 5, 2008

My headaches have been pretty severe the last couple days...mom is calling Neuro today to see if they can prescribe me a different pain med, because the Vicodin isn't working anymore. My cold is better though, pretty much gone except for a tickly throat. Also, my Orthostatic Hypotension is getting pretty troublesome, so hopefully we can talk to a doctor about that soon. And as the final coup de grace, Alec has Scoliosis, and I'm pretty sure I have it too so we're both going to see an Orthopedist. Our dad has Scoliosis sooo, yeah. I noticed it this year at ballet...in the wall-to-wall mirror, you can tell my hands are at rather uneven lengths and when I showed it to mom, she said my shoulders were uneven! And Alec went to see Dr. Moltz yesterday and she found it. Please say a little prayer for Alec...that it's not so bad, and they can do something about the bad back pain he's been having.

Here are the miscellaneous pictures for the day...just some day to day pictures of my family!

This is Alec and I, at a park we used to go to a lot called Elizabeth Park.

(I'm going to get a very angry phone call and/or guest book entry from a certain someone for posting this picture, but it's worth it!) This is pretty much what the three eldest Robertson/Kirkpatrick siblings act like most of the time. Nik, the cynical but hilarious I-Don't-Want-To-Look-Like-A-Tourist...guy, Caitlin the hilarious I'm-Making-This-Face-So-I-Can-Ruin-Mom's-Picture...girl, and me, the I'm-Smiling-My-Absolute-Best-Because-I-Know-Mom's-Going-To-Put-This-picture-On-Caringbridge-No-Matter-What...person.

And perhaps the most spoiled and unconditionally loved member of our household....Abbey Eggenberger(ha, that's moms maiden name but I think the sound of it suits Abbey better than Robertson...Egg-n-Burger...get it?). I think this picture shows how ridiculously chubby she is! Abbey is the hilarious I-Know-I'm-Flabby-But-Seriously-I-Don't-Give-A-Crap-Go-Ahead-And-Take-The-Picture....cat. Or maybe she's just in denial.

Love, Sammi

P.S. Heather(visit/honey)is probably getting out of the hospital today so, WHOOHOO! We love you Heather! And Jaclyn(ny/jaclyn)is feeling a lot better this week so, WHOOHOO! Love you Jaclyn!

Love, Sammi GO BLUE!!!!! The new color scheme is in honor of the U of M Womens Softball Team!!!!

Sunday, November 2, 2008

Well, this has been an interesting Halloween! Between a bunch of eight year olds dancing to "Cotton-Eyed Joe" for about 48 hours straight to Larry the Canadian Shorts-Wearing Cucumber(He lost his basketball jersey in New York)being forced to work by a three-year old! Jeez, you look away for one second, next thing you know, your spoon is being dunked in Chocolate Cake! For those of you who have no flippin' idea what I'm talking about...This is Larry.

He's the one on the left. If you really want to know what I'm going on about a spoon for, go to Journal History and find the October 20th, 2008 update.

I sort of decided at the last minute to go trick or treating...So I just put on one of my new U of M softball shirts, a pair of gym shorts, and I put some eyeliner on my cheeks! I did get some extra candy because of my costume though! Here's some pictures!

This is my costume! Grr, the computer won't let me rotate the pic so either you'll have to put up with a crick in your neck or get someone to rotate your computer...

This is my stash of candy!

Alec and my cousin Lily...I think they were doing the ChaCha Slide. Lily had some make-up on, which is why she has those big shadows under her eyes!

This is Abbey, pretending to be a PlayStation 3...

And this is Abbey, pretending to be a chair...

So, that's pretty much it! I've had a pretty bad cold the last couple days, now I just have a really bothersome cough. I have an appointment with Doctor Sood, not really sure what to expect...it's just a Post OP check but, you know, I'd like the headaches to be GONE!! So we'll probably ask questions and see if there really is nothing to be done.

Well, that really is pretty much it, except keep praying for Heather(visit/honey)and Jaclyn hasn't been feeling that well lately also(ny/jaclyn), so please pray that she'll feel better soon! LOVE YOU GUYS!

That's it,

Love, Sammi

Sunday, November 2, 2008 11:54 AM CST

Sam has a really bad, horrible nasty cold. Ear infection, chest congestion, runny nose, sneezing. Lord have mercy. I think she's finally turning a corner tho. She's on antibiotics. Tomorrow we have an appointment with Dr Sood for a followup. She's decided not to take vidodin anymore. Maybe that will help her headaches, there's always been the train of thought that it could be rebound headaches. So we'll see what happens. Maybe it will help?!?!

Continue to pray for Heather and Jaclyn and all our friends out there who are not feeling well. We love you all!! GO BLUE!!!!

Wednesday, October 29, 2008 9:03 PM CDT

First and most importantly, we are asking everyone to please pray for Heather Oney tomorrow, as she undergoes surgery for a recurrance of the nasty medulloblastoma tumor. We love you Heather and will be thinking of and praying for you all day!! Please sign her guestbook also, cb/visit/honey!!!

Sam was adopted today by the University of Michigan Wolverines Womens Softball Team. It was way cool. She has her own locker in the locker room with her name on it. We met the coaches, trainers and players. We all introduced ourselves and I told them a bit of Sam's story. We didn't get to take as many pictures as I would have liked to but we'll have lots of time for that. We took a tour of their facility and then watched them in some of their conditioning training. Here are some pics....

This is Sam's very own locker. The strange thing is, the locker next to it, the girls last name is Kirkpatrick, same as Nikolaas and Caitlin. Next to that one, last name is Taylor, same as Caitlins middle name. Next to that one, Ryan, same as Alec's middle name. Weird!!! Like we were meant to be there!!

This is Sammi with the head coach, Coach Hutchinson, or as we've been told "Hutch". Everyone was really nice and they seemed really excited to meet us. Alec went with us and he did really well. He was excited to be there too and got a t-shirt. Inside Sam's locker were 3 new t-shirts. So it was great and we already have an event planned. Tickets to the U of M football game against Northwestern on Nov 15 inside the press box where it's nice and warm!!!! Special thanks to FriendsofJaclyn.org for organizing this and for all the great work they do. You guys rule!!!

Ok, we're going to bed, it's been a long day and Sam is fighting a cold so we're going to get a good nights sleep. Take care all and GO BLUE!!!!!

Tuesday, October 28, 2008

If you didn't catch yesterdays update, go to journal history for some pictures and the narrative of the weekend!

This is actually one of the few pictures I took at the actual Festival...we weren't there that long because we got there kinda late and we left kinda early because of the weather. And mom had the camera, and as she was late I couldn't take pictures until she got there

This is Heather and me! The image is sorta out of proportion because I was sitting in the chair closest to Jaclyn, who was taking the picture...oh well, it's still a keeper!

This is Caitlin and her girlfriend Rachel!

Awwww, I love this picture! This is Taryn and Lily, Lily has a caringbridge page you can visit at caringbridge.org/visit/sweetlily.

This is Lexie and Baylie...Lexie also has a caringbridge page...www.caringbridge.org/visit/lexiewilliams.

And this is almost everyone that was sitting at our table! Jaclyn, Me, Lexie, Kelsey, Baylie, Devin, Taryn, you can see a bit of Lily's head there, and Tess. Her mom, Joan, keeps a caringbridge page...caringbridge.org/pa/kyledkerpan.

And this is a picture of the Delaware River...considering I took this picture in a moving vehicle, it came out pretty good! This is on the way home, right before we got into Pennsylvania.

Soooo, that's about it.

Tomorrow, I get adopted! I'm sooo excited!! If you haven't been to the website for the Friends of Jaclyn foundation, you should really check it out at friendsofjaclyn.org....LOVE YOU MURPHY FAMILY!

Well, my neck has started to hurt from sitting at the computer so I'm going to go for now. Please continue to pray for Heather(visit/honey)! LOVE YOU HEATHER!

Love, Sammi

Monday, October 27, 2008

This weekend was absolutely amazing! It was wonderful, seeing friends from camp and getting closer to them.

On Friday, it took about 10 hours to get to Jaclyn's house, but it didn't take nearly as long as we thought it would, thank goodness! We left around seven in the morning, got there around five PM.

This is a picture of a Semi-Truck I took on the way to New York...since my favorite colors are blue and purple, I thought this was pretty cool!

Then the fun began!! We made a whole new generation of spoons, played spoons, played a couple of other games, and just talked and joked around until 1:00 in the morning!

This is Jaclyn and I.

All the supplies we used to make the spoons!

This is Caitlin and Taryn, Jaclyn's sister, making muffins!

This says it all!

Then on Saturday Mom, Caitlin, and Rachel went to the city and looked around a bit since this was Caitlin and Rachel's first time to NYC, then they went to drop off our stuff at the hotel in Connecticut we were going to stay at that night. I stayed with the Murphys and first we went to an adoption. Denis, Jaclyn's dad, started an awesome foundation called Friends of Jaclyn, where athletic teams at colleges and even some high schools adopt kids with brain tumors. You can check it out at www.friendsofjaclyn.org! So we went to an adoption, and it looked so cool, and you could tell, it meant so much to the girl and her family being adopted. Also, On Friday night, Denis handed me his cell phone and it was the coach of the Womens Softball team at The University of Michigan! So, this wednesday, I'm going to meet the team! We still have to set up the "official" adoption ceremony but the team has even started signing my guestbook! Thanks guys! That really helped when I was in the hospital last time, and I can't wait till I meet you all! I am extremely excited, and I can't thank the Murphy family enough for doing this for me, and for almost 70 other kids with brain tumors. Apparently, this is a very good team, and in the words of one Neurosurgical Nurse,"A very fun team". So they sound pretty darn sweet!

Hee,hee, I drew this on the table at Sambucas. It's the team's name for U of M. NO, don't look at me like that, the waiters gave us kids a paper table cloth to write on! GO WOLVERINES! MAIZE AND BLUE! See mom, I said MAIZE not YELLOW...sheesh, ya happy? The women had a heart attack last night when I said yellow and blue.

Then after that, we left for the pumpkin festival! The weather was pretty much the same as last year, but the rain was really only like a drizzle so on we walked! We got there about ten or fifteen minutes before the walk for brain tumor awareness. Caitlin, Rachel, and Mom got there and met us about half way through the walk! Their train had had some trouble so they were late. Then because of the weather, we left early for Sambucas...boy, was that fun! Here are some pictures from the resturaunt...

This is Baylie, a counselor from camp, Jaclyn and me.

These are some more of my friends from camp! Heather, Kelsey, and Taryn. Love you guys!

These are all the spoons we made, spread out on the table at the resturaunt!

Well, I'm getting tired but there are more pictures so either I'll update tomorrow, or I'll add in more pics later.

Love, Sammi

P.S. please pray for my friend Heather (caringbridgevisit/honey)...she is having surgery on her spine in just a couple days to try and remove a new tumor. LOVE YOU HEATHER!! I can't wait to see you again!

Thursday, October 23, 2008-EEEEEEE!

OH MY GOSH, I can't wait! In twelve hours I will be on my way to New York! It'll take about 10 to 12 hours to get there, and tomorrow night we are staying at our friends, the Murphys. LOVE YOU GUYS!! Then on Saturday we are going to the pumpkin festival, which is pretty much an all day thing. It includes pumpkins, seeing friends, carving pumpkins, some carnival games, stacking pumpkins, a walk for Brain Tumor Awareness, lighting pumpkins, and then we get to look at some pumpkins. But hey, it's a pumpkin festival! After the festival, a bunch of us are going out to eat at a resturaunt called Sambukas. Mom has made that my new nickname! I don't really like it but whatever. Then we have to drive home on Sunday but enough of that dismal business. Here are some pictures from last years pumpkin festival!

This is the Pumpkin Tower. It was so pretty once it got really dark!

There were also a ton of pumpkins along the path at Central Park.

Some of the group from Camp Sunshine!

More Pumpkins.....

This is me, my first time to Central Park. This is also my hair at it's curliest! It was rather rainy that day, and whoopdy doo, it looks like it's going to rain this year too.

This is what the path looked like in the dark-awesome!

And this is me on the train home, sorry that it's all over! But, as you can see, the humidity is gone and my hair is back to normal!

And hopefully, mom won't forget her camera so we'll take LOTS of pictures this weekend!

My back has been better today but I've been just feeling vaguely nauseous and a little more headachy than normal the last three days. Maybe I just need to recuperate from the last few weeks and get used to having normal pressures again.

OK, it's late so I'm going for now...I don't know if I'll have access to a computer over the weekend so if not, I'll update when I get back!

Love, Sammi

Wednesday, October 22, 2008

Still feeling the same....no excess draining, regular old headache...BUT TOTALLY STOKED FOR THIS WEEKEND!!!!! EEEEEE!!!

!!!!!!!!!!!

But my back has been hurting kinda bad since yesterday when I have to sit in places like the car, or like yesterday, mom and I went out to eat and the booth was killing me!

But anyway...the pictures I'm including in this journal entry all have to do with one subject and one subject only....

ABBEY SO FLABBY!

(Mom, I know what you're thinking....Oh my god, the girl is NOT taking more pictures of that dratted cat!)

Awwww, isn't she precious?

But seriously, I think Abbey just might be the most perfect cat in the history of the world. And I know you're probably thinking, it's the whole,"My dog is the smartest dog ever" thing but really! She is always ready to be petted, and she is just funny. She doesn't mean to be funny, I'm sure, it's just because of the combination of her unladylike "MRWAH!" that she calls a meow, that she only utters when she's hungry for food, water, or attention, and the fact that she can't lick herself without falling over(you think I'm kidding?). I guess all the blubber tips her center of gravity or something.

See? Abbey is the Feline Ruler of the world! Actually, it's kinda maddening....every time we whip out a board game, she insist on making the board her new bed. Abbey never sleeps on regular old cat beds...nope, from Alec's PS3 suitcase to fleece blankets to our only recliner chair, she has to use anything we need on a daily basis. That recliner chair is now unofficially Abbey's because she sleeps on it so much...I don't think any of us have ever actually used it! As a matter of fact, that chair is where she is right now!

Another cool thing about Abbey is she has two different colored eyes...one light yellowish-green and one is yellowish-brown. She is also slightly pigeon-toed...like me! We also recently got her one of those laser light thingies...she loves it! I've never ever ever ever ever seen her run around this much! I've never seen her run period...except when she's running FROM something! Abby is one of those cats that is extremely lazy then all of a sudden....she'll start playing with some odd-and-end piece of junk on the ground for 5 minutes, then she's done for the week. Along with never sleeping on traditional beds, Abbey never plays with regular cat toys either! Some of her favorites are my injection needle caps(the CAPS, not the actual syringes!), and pieces of paper, stuff like that.

Haha, I just think this picture looks cute! Abbey liked watching birds at our old house but since we didn't have a full length door or anything, she'd have to settle for this technique, or if the window was open and she could fit, she'd sit against the screen. Now we have a full length door!

Well, my back is hurting from sitting at the computer, so I'll go for now but here is one last picture of my first but favorite cat ever!

Abbey-21 Pounds of happy, needy, drooling, snoring, lazy, sporadic, annoying, perfect kitty!(and so much more!)

Love, Sammi

Please pray for Sydney(fl/sydneysims)who is going through some treatments for her cancer, and having horrible side-effects from it.

Monday, October 20, 2008

Well, still having the bad headaches but my back is no longer bulging with all the fluid that should be staying inside my cranium!! And I'm just glad I can go to New York....I am sooo excited!! Caitlin and her friend Rachel are coming up from Chicago Thursday and we leave on Friday. We are staying at my friend Jaclyn's house Friday night and I'll drive with them to the Pumpkin Festival! Jaclyn is one of my best friends from Camp Sunshine. I'm going to be seeing a lot of friends from camp and I can't wait!

This is during the Camp Sunshine Wish Boat launch. From left to right...Alec, well half of him anyway-mom took this picture!, Caitlin(not sure why she's making this face!), one of my favorite counselors ever!, Mary Pat, Me, and Jaclyn is on the far right.

Huh...now that I know how to do this photobucket thingy, I'm going to try and include at least one photo in every entry.

Every year on the last night at Camp Sunshine we have the wish boat launch. Every kid who made a boat lights a candle on their boat and all at once everyone makes a wish. My wish boat is the one third from the left, with the spoon sitting on it! The spoon's name is Larry the Canadian basket-ball playing Cucumber. The story behind THAT is kind of a long one...

One of the counselors at camp introduced the card game "spoons" to some of the teens and it kind of snowballed into a phenomenon...no, an obsession with at least half of the Teen Group.

It's a simple game. Basically, everyone playing gets four cards and the rest of the deck is put aside and passed from one person, one card at a time. The goal is to get four cards of a kind.

Before the game is started, a pile of Spoons are placed in the middle of the playing area...but there has to be one less spoon than there are players. Now you see the brilliance!

When someone gets four of a kind, they are supposed to discreetly take a spoon from the pile so that no one notices. But usually someone does, and the highly uncivilized rush for a spoon of your own that follows is inevitable! Whoever is left without a spoon is out. One spoon is removed from the pile and the whole process begins again.

Every time the teen group met in the Teen Room, a bunch of us would whip out the spoons and deck of cards we kept stashed under the table and start playing! Seriously, this game is probably,like, the mascot of Camp Sunshine 2008. 2008 will forever be known as the Year of the Spoons. You had to be there to know the tension and adrenaline surrounding the coffee table in the Teen Room!

Anyway, one day, we just started...naming the spoons. Among the first were Larry and Sally which were mine, although I think both Jaclyn and I had spoons named Sally. I can't really remember the names of the other spoons. Then, one day while I was in the craft room, I put a face on my spoon...which was Larry the Canadian basket-ball playing Cucumber. The only stickers I could find resembling a human form were some Vegitales stickers! I also put on one of those canadian ranger hats and a basket ball uniform...hence the name. Later I showed Jaclyn, and one of my other camp friends, Justin, and the next time all of us Spoon Junkies got together, most of us were working on our spoons. Here's a picture of all of our finished spoons!

Many spoons were broken and wounded during our frenzied grabs for the hallowed utensils and the perpetrator was usually gruesomely punished!(just kidding)But it was just so much fun and we are probably definitely going to be playing next year! Maybe we can even play it at the Pumpkin Festival....

Love, Sammi

Sunday, October 19, 2008 12:38 AM CDT

We're home!!!! Sam is feeling better, not great, but better. Her tubing had become disconnected from the catheter so every time she sat up, it just started draining like crazy. And that's why her back was swelling too. So they fixed her up and we came home today.

But this means we will be in New York on Friday. We're so excited and thankful that it worked out. I tend to freak out when it looks like Sam will have something else taken away from her because of all of this nonsense. She has lost so much. But also gained a lot. It's just the difference between Holland and Italy. So New York, here we come!!!!

Thank you to everyone for prayers, and guestbook signings, it means the world to us!!!!

Most important of all, yesterday was Alec's 14th birthday....If you get a chance go to www.caringbridge.org/visit/alecrc and wish him a happy birthday. He had a great time at Castaway Bay in Ohio with his dad and buddy DJ. Alec, we love you!!!!!

Friday, October 17, 2008 9:50 AM CDT

Well, we're still not sure whats going on. Dr Sood can't do her surgery today and he's not on this weekend. He doesn't do surgery on Mondays either. So we're waiting for something, just not sure what. This is the part of being a parent of a sick child that is really not fun. Your whole life is just put on hold. What about work? Tomorrow is Alec's birthday. When am I going to be able to buy him birthday presents? I already bought them a night at Castaway Bay, a waterpark in Ohio so they'll enjoy that but I want him to be able to open something. So we're waiting. Sam has been given the go ahead to eat but she wants to wait until the other neurosurgeon comes in in case he wants to surgerize her (new word). Did I mention we're waiting??? OY

****Literally 10 seconds later.....Wendy, our awesome nurse came in and said they're boarding her for some sort of surgery, we don't know what, today. Weird. But good.

Thursday, October 16, 2008 6:56 AM CDT

They decided yesterday to treat Sam with a binder, like a girdle I guess to see if they can stop the leak. They said she'd have to wear it for up to 2 weeks. She can't go home til she can be up and around and not puking. Well she starting puking again this morning. The first time was after getting up to go to the bathroom, the second time was just from laying in bed, she wasn't even up. They're getting her a stress dose of cortef, she's getting some zofran for nausea and I have no idea why she's puking. Her back get noticebly more swollen when she's up even for 3 minutes. It's like the spinal leak she had about 4 years ago, but it's on the side.

All we want is to be able to go to New York next weekend. We've raised money for Camp Sunshine, we have a free place to stay both nights (Thank you Murphys and Holiday Inn points) Rachel and Caitlin are helping to pay for gas, all we're paying for is food and maybe a quick trip to the American Girl store. This trip is something we've been looking forward to ever since we left NYC last year. I made the reservations last year when we got back. You would have to be a Camp Sunshine family to understand. She needs this. Seriously....

****Added a bit later...I tracked (Stalked) down Dr Sood and he looked at her back after she sat up for five torturous minutes and said he'll look at her x-rays and maybe have to go in and surgically fix the leak. Not that you ever want your child to have surgery but sometimes you just know it's probably necessary. This is one of those times.

I was looking at Sam last night, she was sleeping. I was thinking about all the nights I've spent in this hospital with her, just staring at her...rubbing her legs, being there for her. It's something I wouldn't trade for the world. And in a weird way, something I wish I had had with all my children. I have tried since she got sick, to have special relationships with all of them. Nik was kind of hard, he was 17 when all this started, but I will say that he will still hug and kiss me every time he sees me and we end every conversation with I love you. Not too shabby for a 23 year old. Caitlin and I are really close, she called me last night with parenting questions (she's a nanny) it was very sweet. And Alec, I can't help but be close to. Except he's an almost 14 year old boy and he's not remotely interested in hugging me anymore which makes me sad. Nik wasn't like that at all. He'll come back to the hug zone, someday, I just know it!!! I don't know why I'm talking about this except that I love my children more than I could have ever imagined and I'm so grateful that they're mine and that they're so awesome and that they're all Democrats!! (hahahahaha)

****6:15pm Well it's not a pseudocyst, which would be bad, but it is fluid, so Dr Sood is going to meet with the radiologist tomorrow and decide the best course of action. They're also going to talk about her MRI and make sure it's still "better picture quality" and not recurrance. She's NPO after midnight, just in case they can do surgery. If it had been a pseudocyst, it would have been at least another 9 days here and no New York. So it looks like there's a good chance we can still go. All the prayers out there seem to be working so Thank you!!!

Thank you to everyone signing Sam's guestbook, especially the University of Michigan softball team. We can't wait to meet you either, as soon as Sam gets better, we're going to talk to Friends of Jaclyn and get it arranged. We're really really excited!!! Thank you everyone!!!

Wednesday, October 15, 2008 11:06 AM CDT

Sam's back is still swelling when she stands up and she said her head fills with a sound like a tornado and she can't hear anything due to the sound. They're going to wait another day and see what happens but I can't imagine this is just going to go away. But I've been wrong a number of times, we'll just have to see.

P.S. Mary Alice, your guest book entry says it all...It made me laugh out loud. Sam didn't quite get it tho.

Tuesday, October 14, 2008 4:45 AM CDT

We're on our way downtown, I think her valve broke, her back is all swollen...I'll update later. Love, Ellen and Sammi

****She's flat on her back, if she sits up, she vomits. They changed her valve to 200. I have no idea what they're going to do and why her back is swollen. I guess we'll see tomorrow.

Monday, October 13, 2008 7:33 PM CDT

The MRI results are in, a little more confusing than last year, it says there is nothing to worry about, it just says it more confusing than last year.

"There is increased T2 signal in the region of the patients prior surgery, associated with gliosis and there are findings suggesting hemosiderin deposition in this region. (that's new) There is also increased T2 signal over the right centrum semiovale, also likely related to prior instrumentation". (also new).

"Nonenhancing subtle region in the posterior pituitary again seen and not significantly changed when compared to the prior study. There has been no interval increase in size and may appear less distinct on the current study. This could be on the basis of postsurgical change and is less likely related to a Rathke's Cleft occurrence.

MRI Diagnostic ICD-9 Code Abnormal 194.3 (Neoplasm)"

Sam has an appointment with a new neurologist tomorrow, she's going to take the report, last 2 mri's and see what she thinks. I have a class to go to so her dad is going to take her. She's feeling worse than ever. We just have no idea whats going on now. She can't even sit up now. She's going back on homebound study, I have to stop and pick up the paperwork tomorrow after my class. The suckfest continues, excuse my French.....

Friday, October 10, 2008 9:08 PM EDT

The MRI is over with. I got a copy but since I'm not a radiologist or neurosurgeon, I have no idea what I'm looking at. I'll try and get a copy of the report on Monday. It was a long day but we got to meet CJ Shaw and his mom and Grandma. Carepages (CJShaw). So that was really cool. He was getting a bone marrow aspiration and Lumbar puncture. Please pray that all his stuff comes back normal. He's really cute and his mom and grandma were so nice. It was really nice to meet them.

It was a long day. We forgot Sams desmopressin, I thought she grabbed it, she thought I did. So she started dumping urine about 2 hours before we got home. By the time we got home she was crying in pain because dehydration can cause horrible headaches. But she did her shot, drank a bunch of water, and we took a nap. She's feeling a lot better now.

Alec hurt his foot today, but an xray later, was determined to be fine. I picked him up a few hours ago, and he's fine. We've been having fun watching Abbey be flabby and just goofing around. I think we'll all be going to bed early tonight. Take care all....

Wednesday, October 8, 2008 9:01 PM CDT

Sam had a pretty bad day today, it rained all day. Now her back has started hurting.

Her MRI is Friday, please say a little prayer that they don't find anything this time. Well, I mean it's ok if they find a normal brain in there....

Please pray for cb/visit/kaseyradford.....He got some really bad news today.

Tuesday, October 7, 2008

This will be a short journal but I wanted to write real quick to let you all know how I'm doing. My headache is pretty severe today, I think it is going to rain later, so I'm pretty nauseous too.

I have my MRI on Friday...I'm going to be put under anesthesia because apparently, they weren't satisfied with the sedation drug last time. The MRI scheduling people told mom on the phone a couple weeks ago that I had to be given too much or something so I have to have anesthesia this time. For those of you new to the website, I can't lie flat because CSF builds up in my head and causes an excruciating headache, and the loudness aggravates my current one, but since I don't have much choice in the matter when it comes to MRI's, I have to be sedated. This MRI will hopefully show 100 percent whether or not if the tumor-mass-cyst-thingy is back or not. For those of you who were here last October, you'll recall the radiologists saw some enhancement on my last MRI, but they weren't sure if it was a better picture showing artifacts from the craniotomy or recurrence. They were pretty sure it was the former, but they told Dr. Sood to do a follow-up MRI in six months to a year.

They are going to set up my shunt a bit more on Friday also.

Today is the fourth anniversary of my friend Daniel's death. He was in my grade at school and had Mylodysplastic Syndrome and died from complications arising from a bone marrow transplant. Please say a prayer for his family today.

Love, Sammi

Monday, October 6, 2008 9:08 PM EDT

I took Sam downtown today, and due to a whole bunch of mix ups and miscommunications, and the fact that they still can't read her valve, we were down there for 4.5 hours instead of 2. We missed her psych appointment and were late picking Alec up. I know they didn't do it on purpose but when you have a kid who gets sick sitting up and then has to sit up for 4 hours because they "didn't know we were there", it's a bit frustrating. They reset her valve, it's at 140 now, we think. Found out that they changed her brown valve to a green one. Not sure why or what it means but that's what they did. They told us she didn't have outside stitches but....she does. Her back incision is a little bit open so she put some more steri strips on it. Today was just a study in frustration. We passed I think. I didn't yell at anyone, I wasn't snooty or snotty. Sam cried a little bit. I didn't. So I guess we passed. But it really seemed unnecessary.

Please pray for Mitchell Butler and his family. He was 14, riding his bike on Saturday in Redford and he got hit by a car. It was no one's fault, just a terrible accident. He was on life support and they pulled that on Sunday morning and I believe his family made the brave decision to donate his organs. That part of my job sux. If your child is riding a bike, please make sure they wear a helmet. It could save their life. It saved Alec's life once. And please pray for the lady who hit him. I'm sure this will affect her terribly for the rest of her life. And for the officers and fire fighters who were there and even for us dispatchers who took the calls and got everyone on the way. We all tried.

P.S. Lizzie's friend Steven who relapsed after 6 years with medulloblastoma his website is caringbridge.org/ne/steven

Saturday, October 4, 2008 9:09 PM EDT

Sam has sounded pretty miserable all day. The incision on her tummy is open a little bit and her head is hurting so I'm sure we'll be going downtown on Monday.

I met Jenni and Calvin for dinner then we went to WalMart. Caitlin called me. She was shoe shopping at Nordstroms in Chicago. What is wrong with this picture? She is 20. I am 45. I should be shoe shopping at Nordstroms in Chicago and she should be shopping at Walmart in Livonia. Ridiculous.

Friday, October 3, 2008 9:34 AM EDT

They're going to adjust her shunt up to 110 and send us home. I have to go back to work tomorrow so Sam is going to Chris'.

We had to move in the middle of the night, our room starting raining on us. It was interesting. Thanks to everyone for signing her guestbook, it's been fun reading all the messages!!!!

Love, Ellen and Sammi

Thursday, October 2, 2008 9:23 AM CDT

Sam is doing pretty well...They replaced both her valves so she has incisions on her abdomen and back. He decided not to put in an ICP monitor. Why risk infection, I'm sure his thinking is. He set the medos valve at 100, we'll just see how she does. If we need to reset it, they will. First I'll give the good news. Thanks to our awesome friends, the Murphy's from Camp Sunshine, Samantha has been adopted by the women's softball team from the University of Michigan. They are an amazing softball team from what I've heard and read and one of the nurses yesterday told us that they're a lot of fun. Check out FriendsofJaclyn.org for all the good this organization does. Thank you to the coaches and players for signing Sam's guestbook, it made the morning of her surgery much more pleasant and she was really excited to have a team choose her. We can't wait to meet them and have Sam become part of this great team.

Now for the not so good news. There are lots of kids out there who have relapsed or been hospitalized this week. It sux. Heather has a new tumor in her spine cb/visit/honey.
Sterling, from Camp Sunshine, is definately one of the stars at Camp. He lights up a room. He has tumor progression. I don't think he has a website but please pray for him. Christopher, another star from Camp Sunshine has the most amazing family. He has neurofibramatosis and he now has a recurrance. I don't know of a website for him but please pray. Neal O'Brien Jr is in ICU because of the flu, his family is like the First Family at brain tumor week and his website is cb/visit/nealobrienjr. Winter Gilland, a little cutie we've never met, except online, has shunt and peripheral line infections and is having a hard time, cb/nc/wintergilland. And Lizzie's friend Steven has had a recurrance of medulloblastoma after 6 years and is at St Jude. I don't know if he has a website but will try to find out. As usual, please pray for Hadley cb/ca/hadleyfox.

It's just a bad week this week in the BT world. There was a girl who's family was in the waiting room with us having a brain tumor removed. It's an epidemic. The numbers don't mean anything. If it hits you, it's an epidemic and it changes everything about your life.

**** Well, Sam got up to walk around a bit and got really nauseated. She also is bleeding a little from her incisions. I'll update later if anything changes. We have the computer all night.

Tuesday, September 30, 2008

~~A few hours after I posted this!!~~ If you scroll to the bottom of this journal entry, you can see a picture of our family at Chili's.

***About five minutes after this entry was posted!!** Anesthesia just called and now I have to be there at 12:30 pm, but I can still drink until 11:00 am. So that's a lot better, and now there's less of a chance of me breaking through before I can drink again.

Children's just called with my Pre-OP instructions....I don't have to be down there until 2:30 pm tomorrow which kinda sucks but they said I can drink until 12:30 so I guess that helps. I told them how the last two times I had surgery, I had problems with urine retention so hopefully they'll be able to do something to prevent that this time. It's extremely frustrating when you REALLY HAVE TO GO but for some reason, you can't!!

I also hope I don't break through my Desmo after 12:30...my schedule lately has been,

I usually take 30 units between one and four o' clock

Then I'm good until bedtime(between ten and eleven)when I usually just inject five units.

Then I usually get up in the middle of the night between two and six in the morning to take twenty-five.

Rinse, Repeat.

I'm only to take 60 mls a day at the most and I'm still breaking through the required 3-4 hours a day. My endocrinologist likes me to cleanse my kidneys of the medication, and she wants to make sure I'm not getting over-hydrated. This schedule has been working for a couple weeks and it's pretty constant so I think this is the long-awaited, much-coveted schedule Mom and I have been searching for for four years, ever since I got the DI!

But tomorrow, I might take a few units of Desmo before I have to jump off the wagon tomorrow at 12:30 so I don't break through while I'm not allowed to drink. I get very cranky when I'm thirsty!

Dr. Sood is going to replace my Medos valve(again)and set it to....actually, I'm not exactly sure. I don't think he can set me back up to where I was before right away because I think that could cause a kind of shock if my dehydrated brain was all of the sudden flooded with CSF! In other words....BIG HEADACHE! And we're still not even sure where my Medos valve is set at. Dr. Sood is also going to place an ICP monitor so he can monitor my pressures while he fiddles around with the valve and gets the valve set right. I'm not exactly sure how long I'll be staying, probably 3 or 4 days.

So anyway, Chili's was so much fun! We were there for like two hours just because there was only one cook! But it was cool. It was Mom, Alec, Dad, Papa, Grandma Diane, Uncle Joe, and Aunt Pam. And me. Mom and I each colored a chili pepper and donated five dollars. We took some pictures but mom is downtown today testifying for a trial because she answered a 911 call concerning the case(mom says it's not as exciting as it sounds). So when she gets home, we'll probably put it on the website then.

I'm feeling OK so far today, but it's supposed to be stormy and my specially attuned keeping-a-weather-eye-out brain is probably going to start protesting later....

Love, Sammi

Please continue to pray for my friend Heather(visit/honey)and Hadley(ca/hadleyfox).

Here is the promised picture. Papa and Diane, Sammi, and Aunt Pam and Uncle Joe. Aunt Pam and Uncle Joe came all the way from Canada!! We call Uncle Joe and Aunt Pam "The Canadian's" because the live in(duh)Canada. They call us "The American's" and they also call my mom's sister's family who used to live in Mexico but now lives in Texas "The Mexican's"!! So if you live in Europe or Asia and you want to refer to my family, you can just call us all "The North American's"!! We had a great time. Dad and Alec had to leave a bit earlier because Alec had a ton of homework.

Sunday, September 28, 2008

Well, yesterday was just horrible! It was cloudy out so I had to assume my duty as Human Barometer and it wasn’t pretty. I feel better at least on the storm front….front. I’m really nauseous today though.

I can really tell my shunt is malfunctioning now. My burr hole(the hole in my skull by which I can make a rough guess as to whether my pressure is high or low)is all over the place. Also, I’ve been sleeping with two pillows ever since I got the shunt because when I sleep too flat, CSF builds up and usually one side of my head ends up going numb and the other half is hurting really bad. But the last week or so, I’ve been more comfortable sleeping with one pillow because obviously low most of the time. And I’m tripping more. This morning I almost killed Alec getting up, because he’s been sleeping on a mattress on the floor at mom’s until we can get a bed for him. We’re thinking of getting a trundle bed or something like that soon. I knew he was there but I got dizzy and I had to step more quickly to keep my balance but I ended up nose to nose on the mattress with Alec anyway! He didn’t wake up though. I can tell my blood pressure has been really low lately also. I’m beginning think that was what was causing all the palpitations back in May because I’m having them again but not just in the morning. It’s not that my heart’s beating fast, just really hard, but it makes it really hard to sleep and it makes me really out of breath. Low vitals are another sign of shunt malfunction. But after Wednesday, the pressure headache(and the nausea and the persistant nap needing) will be gone at least. It’s just that the regular headache was getting a lot worse too.

It’s supposed to be sunny tomorrow so I will be at Chili’s! I can’t wait! So far it’s Mom, Dad, Alec, Papa, and me. It’ll be a lot of fun!

I hope you guys like the new pictures! The topmost one is from this year's family vacation at Little Island Lake.(Guess what the town's main feature was, yep, A tiny Island smack in the middle of the lake) The bottom one of mom and I is one I found last weekend in a photo album at dad's. I just love this picture for some reason!

Also, today is Jaclyn's(ny/jaclyn)birthday! She's one of my friends from camp sunshine and I love her so much! Happy Birthday Jaclyn!!! I miss you and I can't wait till October!

Love, Sammi

Please pray for Heather ( cb/visit/honey ). Her MRI on Friday showed a tumor in her spine. We met her and her family for the first time at Camp Sunshine this summer and they are fun and awesome and Heather has come so far in her recovery. Stay strong Oneys!!!!!

Friday, September 26, 2008 10:52 AM EDT

Well, on Tuesday they're going to do an ICP monitor and a revision. They'll put in a new medos valve and keep the monitor in to see where her pressures are and get her pressures to the best level possible. They couldn't do it today and Monday is Dr Soods clinic day. The only problem with Tuesday is I have trial downtown but the detective handling it said he'd talk to the prosecutor and hopefully get me on the stand early or get me excused early or whatever they do down there. I've never had to testify downtown before so I'm a bit nervous.

She's basically confined to the couch. When she gets up her head hurts really bad and she gets nauseous. But we're going to make dinner at Chili's on Monday Sept 29 to help raise money for St Jude. On Plymouth Road just west of Middlebelt in Livonia MI at 6pm. Please join us. RSVP in the guestbook email scanmom@hotmail.com or cell 734 934 7908. Thanks!!!

***They're revising her on Wednesday. They called a couple of hours ago. If you can make the dinner on Monday, please let us know. She's bummed out that no one has said they can go yet. I told her probably over the weekend when people get their plans ready for next week someone will!!! Take care all and hug your kids. Pray for cb/ca/hadleyfox.

Tuesday, September 23, 2008 4:40 PM CDT

Sam is feeling a little bit worse than yesterday, Dr Sood said it can take up to 3-4 days to get to the point where she needs surgery, so I guess we'll just wait.

Everyone is invited to Chili's on Monday, Sept 29 at 6pm. It's on Plymouth Rd, just west of Middlebelt in Livonia, Michigan. They are raising money for St Judes. Sam is really excited and anyone who reads this is invited. We are hoping for a big group. Please let me know if you can attend, via guestbook, email or cell 734 934 7908.

Take care all...Alec's renal ultrasound is Friday at 6pm. He has some blood in his urine, he's been having some bad back pain. Hopefully it's nothing big.

Monday, September 22, 2008

Well, they did adjust my shunt.....

But they have absolutely, positively, NO idea what it is set at. The doctors wanted to set it up a little more from 150 to 160 and after five or six tries they decided to just send me home and see how I do. So here's a little math problem:

There's 20 settings on my medos valve-
If you're going by tens from 10 to 200 that gives you 20 settings. They wanted to set me at 160. What's the chance I won't end up in the ER puking my guts out tonight or tomorrow?

1 in 20.

And we know it didn't work because you can tell by how many beeps the machine emits after if it worked or not. If it only beeps once, it worked. And the stupid thing wouldn't shut up! But there is a chance my shunt is set at like 170 or something, but then, like I said last time I updated, I'm just back to square one. And like I said, that chance is only 1 in 20.

I've always hated math.

The way Dr. Sood was talking today when the nurse brought him in, it sounds like if this doesn't end up working, he'll want to do a revision. Mom and I are not sure exactly what he'd do, or if he would even do one, but that's the way it sounded. I hope I'm not in the hospital on the 29th, cause I really, really, want to go to a Chile's Resturaunt with mom! Childhood Cancer needs awareness and mom's going to invite a bunch of people to come with us, and I think it'll be really fun.

I'm still dizzy too, I made a couple of new friends(dad's stairs, dad's entertainment center)over the weekend. I think it's because of low blood pressure but I'm not sure why I'm having low blood pressure. I've also been having weird hot and cold flashes where I'm putting on and taking off layers of sweatshirts and blankets every ten minutes and all night. Mom keeps checking me for fevers, because sometimes I'm freezing but hot to the touch. I'm just not sure what's going on, and if the shunts causing all this or what.

Love, Sammi

Monday, September 22, 2008 11:01 AM EDT

Sam is still having a lot of problems so we're going back downtown today. She's been sleeping since 9:30 last night, she's dizzy, nauseated, very headachy and crabby, which I don't blame her for. We really need to get her back in school. This sux.

Thursday, September 18, 2008

I just woke up from a tiny nap so while I feel the slightest bit better, I'm going to update!

Well, I don't think I've ever felt this crappy...ever! At least not for no apparent reason. When my shunts malfunctioning, sure, I feel worse then I do right now but then they could fix it. Right now I'd take the haywire shunt as opposed to the idiopathic painful menenges.

The doctors set about setting my shunt back up yesterday and when the valve is back to where it originally was...I'm back to square one except it'll be "same as the first, but a little bit worse!". Today I got up off the couch and as I got to the hallway I got dizzy and I side-stepped---right into the wall! I've gotten dizzy lots of times before...I've had close calls with my good friend(the wall)but this is the first time we've made contact I'm happy and sad to say. I hit the corner too, and now I've got the cutest little shiner right smack in the middle of my forehead. I hope no one in the apartment building heard my little outburst....it wasn't anything too vulgar but it could very well have been fairly alarming to anyone in the vicinity! But anyway, I guess my body is still catching up with the new shunt setting. I don't feel quite so nauseous today, at least.

Soo, the website might take awhile because there are only a few times a day where I feel like sitting at the computer and a lot of the time I just check caringbridge sites and my E-mail. Usually sitting at the computer for too long hurts my neck so I sit down, either check a few sites, check my E-mail, or respond to an E-mail I saw earlier, then go lay down again.

Also, mom and I plan to go to Chili's on the 29th to benefit kids with cancer. I've just ordered a new brain tumor Zazzle shirt for the occasion! Don't worry mom'll probably take loads of pictures...she's just forgotten how to load them on the computer, that's the problem! But she can just ask Caitlin. Then I can start adding a couple photos on the page again. But I promise not too many so people don't encounter the same problem loading my page!

Love, Sammi(known exclusively today as "Shiny Sammi, haha)

P.S. Please visit Hadley's site and pray very hard for her and her family! Hadley is coming to the end of her journey with a Brain Tumor, she has been fighting this for a very long time and she is such a sweet girl. www.caringbridge.org/ca/hadleyfox

Monday, September 15, 2008 9:29 AM CDT

Sam was admitted last night for bad headache. They are going to adjust her shunt again and then I don't know if they're sending us home or going to wait it out here and see how she does. We're in room 553-2 phone number is 313 745 5978. Feel free to call, she's sleeping and I'm bored.

********We're home. They adjusted her again and we're home, and hoping this works. Please pray for Cameron who passed away yesterday from his brain tumor... cb/visit/cameron. He was a great kid.

************I'm not sure if Sam is any better, she's been sleeping a lot which is really unusual for her. I called in sick to work, I'm really not comfortable leaving her home by herself. We'll see how she does tomorrow. Excessive sleeping is one sign of pressures that are too low so we'll just see how tomorrow goes. I hate this.

Saturday, September 13, 2008 9:53 AM CDT

I took Sam down on Thursday, they set her shunt down 10 points, and did the usual 12-15 x rays. She's really not feeling any better but it's been raining here for 3 days so it's hard to tell if it's the weather or her shunt. That's all from here...

Thursday, September 11, 2008 9:40 AM CDT

Well, Sam fell asleep right after she woke up. She had horrible horrible headache yesterday but wouldn't let me take her downtown. I think I'm going to take her today tho because she shouldn't be sleeping this much and the bad headaches usually don't last this long. I really don't think it's school, she was doing well, making plans etc. So I'm not sure whats going on. She wants her MRI now but it's not until Oct 10. She missed ballet yesterday too. God, I just hate getting on this rollercoaster. Maybe we never got off. I just don't know.

Monday, September 8, 2008 4:24 PM CDT

Sam went to school today!!! She did really well. Right now she's going to 3 classes a day but I'm pushing for a 4th, it's just like a study period but she'll get credit for it.

I'm just happy she went to school.

Friday, September 5, 2008 8:09 PM EDT

Please pray for Hadley Fox. Her website is cb/ca/hadleyfox.

Tuesday, September 2, 2008 9:51 PM EDT

Sam is feeling much better about school. Unfortunately this high school appears to be pretty popular because you have to make an appointment to register. Our appointment is Friday morning at 7am. So she can't start til Friday. Kind of a disappointment, but I'm glad to say she's disappointed. That's a good thing. She starts ballet tomorrow too. She's really excited about that. So things are starting to look up for her. I hope it stays this way. I think half of her battle is going to be her attitude and if she can get half a break in this whole thing, that will be a great gift. She's still having bad headaches but that's just going to be part of her life right now and we'll just have to learn to deal with it. We have lots to look forward to. School, ballet, life.... Bye all....

Saturday, August 30, 2008 9:46 PM CDT

Sammi needs urgent prayers. She is so worried about starting school next week. I've never seen her this upset or worried. Which then leads into I'm sick of all this medicine, why did this have to happen etc... But the main problem is her worry and anxiety over school. She's sooo worried. I've been sitting with her and listening and just being with her all day. She starts on Wednesday.

****Update Sunday....Sam is feeling much better today. We went shopping, she had shoe therapy which seems to have worked. We're getting ready to have her favorite, lemon herb chicken and mashed potatoes. Thank you God. My Sam is back. I missed her.

Tuesday, August 26, 2008 10:24 PM EDT

Chris and I met and did the kid exchange. It's kind of weird doing that. Before we only lived a mile apart and it wasn't a big deal. Now we're "those parents". Oh well.

We had fun. We watched an entire season of 24. Season 4. 44 minutes times 24 episodes equals lots of laziness and time spent together. We went for a walk, went to the mall, went to Papa and Diane's, went grocery shopping, cleaned but strangely enough didn't empty any boxes while they were here. Maybe this weekend. Sam's room is full of boxes.

I'll pick them up Friday morning. I have to work 16 hours tomorrow and 12 on Thursday so I'll just pick them up then. Lily and Luke are spending part of the weekend with us and we'll be going swimming and having lots of fun cousin time. It'll be a great weekend. I can't wait!!!

Friday, August 22, 2008 7:23 PM CDT

Sam and Alec are with Chris and I have to work all weekend so I'll get them on Sunday. Sam is feeling about the same. Headachy a lot. Her desmo shots are going ok. She starts school on September 3rd. I'm sure I'm more excited than she is but I'll think she'll like it once she starts.

We're working on scheduling her MRI in the next couple of weeks. I'm really not too worried but there's always that little niggle of worry in the back of our minds. Dr Sood isn't worried so I'm just a teeny tinsy bit worried. We're luckier than most come MRI time.

Ok, I'm going to bed. Notice how early it is. I'm tired. Good night.

Friday, August 15, 2008 4:30 PM CDT

Sam is finally home. She loves our new apartment. Abbey is happy to have her home but seems to have gotten some kind of eye infection so I suppose I'll be taking her to the vet one day next week except I work the next 8 or 9 days in a row so I'm not sure where I'm going to fit that in.

Sam had fun at camp but had some bad headaches. Then I met them up north at the cottage for a week and we had a really good time. Fishing, Alec drove the boat, Sam went tubing. Chris cooked and I cleaned. We watched the Olympics and went into town a few times. A few days it rained all day and Sam was just in horrible pain. Boy do we have some work to do here. Boxes and bags and suitcases to put away. I'm tired today tho. We'll start tomorrow I think.

Sam got a package from Lauren Loose cb/visit/laurenloose. She has a group called laurensfirstandgoal.org that raises money for brain tumor research. She sent us some really cool t-shirts that we will proudly wear to spread the word in the midwest. Thank you Lauren for thinking of us and we sooo look forward to seeing you next summer at Camp Sunshine!!!

I will try and post some pictures tomorrow. We took some good ones. Sam felt good last night about 9pm so she decided to go fishing and caught a huge bass right off the shore. Talk to you soon!!!!

Ellen and Sammi

Monday, August 4, 2008 5:44 PM CDT

Sam is at Camp Westminster and Alec and I are chilling in our new apartment with central air. I've never had central air before, I absolutely love it. We checked out the mall today, Walmart and just drove around a bit to see what we could see. I grew up about 4 miles from here so it's pretty familiar but things change a lot. Abbey did great with the move, no unnecessary urination, no puking or anything. She was hiding for the most part until Alec got home. Now she's ruling the roost again.

Prayers for Katie Krize and Jordyn Laura who passed this week. So unnecessary and sad. Love, Ellen and Alec

Thursday, July 31, 2008 8:10 PM CDT

We ended up coming home on Sunday night. They gave her Motrin!! Seriously? By the time they offered her dilaudid it was 3:30 and we just wanted to come home. She is leaving for Camp Westminster tomorrow and then we go up north for a vacation with Chris for a week. A cottage on a lake. Sounds like heaven. I don't have to work til Aug 22 but I'll prob cancel a few of those days and go back on the 18th. Alec and I get to spend a week together at our new apartment. We have a lot of fun together, so I'm pretty excited. And Sam is really excited about camp.

Take care all....Love, Ellen, Sam and Alec

Sunday, July 27, 2008 8:50 PM EDT

Sam never really got the cold but her headache is really bad today so we're going downtown. I'm sure they'll just give her iv pain meds, admit her for the night and we'll come home tomorrow.

She's going to Camp Westminster next weekend so we need to get her feeling better. Take care all... Ellen and Sammi

Monday, July 21, 2008 8:31 AM CDT

Sam had a pretty high fever last night, but she's better today so I'm going into work a little late. She's getting a cold but has been Zicamming herself every 4 hours. I have to save my sick time for when I really need it. Ok, take care all.

Saturday, July 19, 2008 8:43 PM EDT

HAPPY BIRTHDAY NIKOLAAS DAVID BOOTZ KIRKPATRICK!!!! WE LOVE YOU!!

Yup, it's Nik's birthday today. He's the big 23. We just talked to him. He sounds happy.

We had a good day today. We went to the apartment building so I could show Sam the exact building we'll be in and how close it is to her school. Then we went to a graduation party for the son of one of my co-workers. Then we went to the mall where we ran into 2 people we kind of know. Chris and Alec. So we walked around with them. And Alec found what he wants for his birthday. An electronic book downloader/reader thing. We saw it at Borders. It looks really cool. He said he wants it more than a Wii. So that's pretty impressive. Sam has taken a couple of vicodin but she seems pretty good today. We were gone for almost the whole day and she did well. She is doing pretty well with her ddavp injections. It's kind of a pain because she has to "breakthrough" with her urine for an hour in the morning and 2 hours at night. So for 3 hours a day she's kind of tied to a toilet. The times will have to be adjusted when she starts school.

She goes to Camp Westminster in a couple of weeks, she's uber excited about that. The day after we move. We're nervous but really excited. It'll be good but a big adjustment for all of us. Change is usually good, right?

Monday, July 14, 2008 7:49 AM CDT

We made it home Saturday by about 4:00pm. It was a great trip. Camp Sunshine is amazing. Thank you to the Children's Brain Tumor Foundation and Jenna's Rainbow Foundation for sponsoring our week. Thank you to Nancy Cincotta and Tracey Moore for being amazing. To all the families we've known for years and to all the new families, bravely hanging out for the week with all the craziness, bravo. And finally, to all the volunteers who come there for no other reason than they love brain tumor week. People actually try really hard to get into our session. It's one of the most popular at Camp Sunshine. The volunteers, cook, clean, paint, do one on ones with kids who need help getting around, each group has a number of volunteers. I thought the teen volunteers this year were really good. Mary Pat and Danyell, thank you so much for making each one of my children feel special and amazing this week. Caitlin had a great time, she wants to come back next year and volunteer. She wants to come with us to New York in October for Pumpkin Festival.

Sam is doing better with her ddavp injections. It's finally leveling off for her. I think we're on a path to a schedule, which we've never had for her DI, so that's pretty cool. We have an appointment with Dr Sood today, just a follow up appointment to her last revision. That's about it from here. Take care all and please pray for Lauren, Marissa, ElizabethAnne, Katherine, Zaida, Sydney, and Lucas Moore and all the other kids out there fighting and struggling. Special prayers for cb/visit/katiekrize. Please sign her guestbook.

Tuesday, July 8, 2008 1:25 PM CDT

We made it to Camp Sunshine with no fights, only a bit of grumpiness on the second day. The first day was really long. I actually had to stop and take a nap I was so tired. If you have to drive to Maine from Michigan, always go thru Canada. Don't assume Ohio will be "about the same". It was about a 10 hour day to get to Albany. Any way, we're here. Caitlin is loving it and wants to volunteer next year. We're fudging around with Sam's ddavp injections but we're getting there. Alec is doing ok, little stresses here and there and I'm enjoying the non stressful life that is Camp Sunshine. The kids are enjoying the teen group a lot this year. It helps that Caitlin is here and that Alec is in that group and that Lizzie cb/va/lizzie is here and that cb/ny/jaclyn is here and just lots of new interactions and kids this year.
July 16th, 2004

It was early in the morning,
about 7:30 am
when they wheeled me down to surgery
Then I was born again.

The time had finally come
I just wanted it out and gone
I wanted to defeat the tumor
that had been draining me for so long

I was about to go back to the OR
when my mom said to me I love you
and after weeks of feeling too sick to answer her,
I said, Mom, I love you too.

I laid down on the table
and put the mask over my face.
As I started to go under
I gave the doctors my trust and faith.

I woke up in the ICU
and the first thing that they said
was that the tumor was finally and forever,
gone from my head.

I was in the hospital for a month
for half my summer break
I missed out and riding on a parade float
and going to summer camp on a lake

But a month and five days later
I was back at school
There was one thing that was different, however
it was everything that I knew.

The scar was 6 inches long
on the top of my head, on the right
but the most unnerving and significant change
was the one taking place inside.

I had learned how precious life is
but also how fragile it can be.
In just one summer I had changed
physically, mentally, emotionally
expotentially.

It was early in the morning
the day my life forever changed.
I'm so grateful for the second chance I got
the morning I was born again.

This is the poem Sam read at the talent show last night. The talent show last night was amazing. It's hard to describe. I will try at a later time. We are here, happy and healthy. Healing.

Thursday, July 3, 2008-Oh my Gosh!!

Ahhhhhh! I can't believe we leave TOMORROW for Camp Sunshine! Seriously, Camp Sunshine is now not only the single most anticipated event of my year, but it's pretty much THE anticipated single event of the year. I'm so sick of not having anyone(except my family)to talk to face to face about things you can only understand if you've been through them. Camp Sunshine is like a second home, where I feel loved and understood and I can totally be myself. I don't have to hide my scars, I can use as many "big medical words" as I please and I don't have to be embarrassed if I can't do something because, as terrible as it is, there is probably someone else who can't do it either. I say the word Neurosurgeon at school and all I hear are the crickets rubbing their legs together....Anyway, it's nice to be around other people who aren't freaked out by the fact that I've had 35 surgeries in 5 years or by the fact I can spell Oligodendroglioma and the like. The kids and parents there don't display sympathy, they actually can empathize with my plight. The people there are all so amazing, the kids, the volunteers, and the parents. It's everything to most, if not all, of us. I know it's everything to me to be there.

I changed the song to something from the new Narnia movie, which is my new favorite movie now. Yes, it tops off The Best Of Will Ferral, Saturday Night Live now. To me it talks about remembering what it is like to be completely healthy but obviously I can never get back to that place of ignorant bliss. I've seen and I know too much now. But somehow I feel more at home with myself and at places like Camp Sunshine now then I ever felt with anything I did before I got sick. I can't go back, but I can remember and see how much better it is now.

I did my first Desmopressin shot a little while ago. It's working and it didn't hurt too much, not as much as the growth hormone stings when it goes in. It's just kinda scary to think about what happens in another four years if the shot stops working too. I'd be screwed, unless they come up with another medication for DI. The goal is to only have to do the shot once a day. Well, that would be GREAT but I've never been on a schedule for my Desmo. Other people take it at a certain time during the day from diagnoses but I've never been able to do that for some reason. I guess we'll see.

Well, mom is going to be home soon with Caitlin, whose coming with us(EEEEEEEE!), and I still have to clean off the couch like mom asked.

To all my fellow Camp Sunshine Comrades....CAN'T WAIT TO SEE YOU!!!!!

Love,(AAHH!)Sammi Jean

Tuesday, July 1, 2008 8:24 PM EDT

Sam is feeling so so. We found an apartment, just waiting for the final paperwork to go thru. Hopefully there will not be any problems. So I have started cleaning and Thursday I will be packing and we leave Friday morning for Camp Sunshine.

Please pray for caringbridge.org visit laurenloose She just found out she cannot go to camp because of some problems she is having.

This is about an hour later, Sam is having a Diabetes Insipidus Emergency. She is taking too much desmopressin. The liquid stuff is not working anymore and they say she is taking too much of the pill form. I have left an email for her doc and a phone call earlier today. I ended up paging the doctor on call. He called in 10 pills for her but the insurance would not cover it. $50 for 10 pills. Sheesh. I do not know what we are going to do. I cannot miss work the next few days. Everyone is being ordered in to work and we got a brand new computer system installed today. I guess when it rains it pours. Oh and my lawn mower will not start. Ok, time for Hells Kitchen.

Sunday, June 29, 2008 8:27 PM CDT

Well, Sam is at Aunt Ruthie's, Alec is there too. On Friday night, they went to their dads to sit on the roof and watch the fireworks. Then he picked them up yesterday and they spent the night at Nana's and tonight they'll stay at Ruthie's. I think they're coming home tomorrow. We're going apartment hunting. And we have to get ready for Camp Sunshine. Sam is feeling better. All the storms we were supposed to get, did not materialize, Thank you God. So we have a real busy week. Work is going to be crazy this week and trying to get ready and getting a new apartment. Sheesh. I may just go crazy!! OK I'm going to bed. My cold is still hanging out. I've been coughing and wheezing a bit so I might go to the doctor tomorrow. All right, good night all!!

Please pray for ca/hadleyfox visit/lucasmoore visit/katherinebarnard visit/katiekrize

Sunday, June 22, 2008 2:52 PM CDT June 26 below

I updated yesterday but it looks like it didn't appear. I took Sam downtown on Friday night, per her request for a really bad headache. They gave her some dilaudid and she was feeling better. They were going to send us home. They checked the x-rays and saw that the tubing in her heart needed to be lengthened but it was up to us when to do it. We both immediately said tomorrow (Saturday). We don't want anything to interfere with Camp Sunshine. So they did that early Saturday morning. She had sodium problems again and then the bladder problems she had last time, only this time it lasted about 24 hours. She couldn't empty her bladder. She was so frustrated. She heard the word catheter and got very upset. I think the anesthesia is causing this. Next time we'll have to mention it and see if there's anything they can give her to prevent it. Finally this morning it emptied. But we're home and she's feeling ok. Some pain near her collar bone where the incision is. But there are no stitches so that's a good thing.

We got home and of course the house is a wreck, the grass needs to be cut, I got no sleep and I have a headache. So I went shopping, I'm going to take a nap, cut the grass and drink some water. Not quite in that order but it'll get done. I have to work the next few days. Please pray for Simonne and her little brother Chase who are both in the hospital and were right next and across the hall from us. Simonne had blebs in her lungs and Chase is just plain having a hard time breathing. He's so dang cute. And for my co-worker Boomer, whose father passed away this morning. He was a retired police officer, a lieutenant I believe, from our department and it was totally unexpected. They have a very close family.

June 26...Sam had to be admitted again last night for a bad headache. The weather got crappy and her head got really bad. They gave her dilaudid, she fell asleep and then we came home. They did give us the bigger dose of vicodin to bring home to get us through Camp Sunshine and then we have an appointment to see Dr Sood the day after we get back. We have to figure something out. We're aren't getting much sleep and I haven't seen Alec for more than 10 minutes in about a week. I asked him today if I could attend his graduation, kiddingly. He said he'd think about it. We were supposed to go look at apartments today but we're going to go on Monday instead. Ok, I have to work the weekend so hopefully she'll make it ok through the weekend. Please pray that she feels some comfort. I'm not expecting any miracles, just some comfort. She's sleeping now. I'm looking at her and feeling like we're turning some kind of corner. I don't know if it's bad or good. I hate the unknown. Everything is up in the air. There are going to be some changes in our family. I am going to be moving and taking Sam with me. Alec might stay with Chris or he might go with me. It's only 25 miles apart. We're trying to do whats best for both. But in the meantime I feel like there's something going on with her. I just don't know what it is. All I ask is that we are able to go to Camp Sunshine and enjoy it. I don't think it's too much to ask.

Thursday, June 19, 2008 7:34 PM CDT

Well, I guess it's time to get over myself and take my ODE TO MOMMY off the front page. Sam has had a rough day. We're having a problem getting her pain meds renewed by the docs. I understand where they're coming from but I also know neurology told us they can't help her so what else are we supposed to do. (Don't tell anyone, the pharmacist gave us 2 pills to get her thru the night, I love our pharmacy). So hopefully tomorrow we can get it straightened out. She doesn't take more than she's supposed to, she's not hooked or anything, we don't prescription shop...she's just a kid in pain. It's amazing how much the peripheral people in this journey help out. The PCP's, the pharmacy, the nurses, secretarys, appointment makers, most of them are amazing.

We've had some good news. Mary Alice and cb/va/lizzie are going to Camp Sunshine. OHMIGOSH, this is such great news. Sam and Liz are going to be instant best friends, I just know it. They have all the same hormonal issues and it's going to be great. Sam and I are very excited. 2 weeks from tomorrow we leave.

We also have a prayer list tonight and I hope I don't leave anyone off. cb/visit/lucasmoore has a recurrance and it's devastating his family. cb/visit/katherinebarnard is doing ok but having trouble with her pain meds. I know there are more out there, but I'm so tired and Sam is tired and we had such a busy day at work. People were just going crazy today. In 2 weeks I'll be off for 2 weeks. Can't wait.

Thursday, June 19, 2008 7:34 PM CDT

Friday, June 13, 2008-Happy Birthday Mom. Check a bit lower for June 16

Well, Happy Birthday Mom! As your first present I won't disclose how old you are, you can do that later if you want. As anyone who's talked to me knows, I'm a better writer than I am a speaker...so I'm writing out my Birthday Ode to you on this page.

I know everyone says this about their mom to make them feel good, but you really have always been there for me. You're almost always with me in the hospital even if you have no sick time left and you've taken me to almost all my doctors appointments. You understand my love of Harry Potter, 24, and America's Next Top Model because you love all those things too. Even though I'm 15, I'm not annoyed or embarrassed when I have to spend time with you, and contrary to what you tell everyone, I'm not sick of being with you all the time, the last three, four, five years. You always say sorry when you know you've done something wrong and if we fight sometimes, it's because I know you'll always love me no matter what I say.

Well, Happy Birthday Mom! This update was your Birthday present and I hope you liked it. I love you Mom.

Love, Sammi Jean

**I love my birthday present so I'm leaving it up there. My cold is getting better but jeez, apparently if you only get a cold every 3 years you get it bad!!! Right now I'm on the phone with LaGuardia Airport trying to find all of Sam's summer clothes and her journal and her poem for Camp Sunshine's Talent Show. She's not happy to say the least.

The first day was too hot to go to the city, it was over 100 degrees. So we hung around the hotel. On Tuesday we went to the appointment. Tania, the NP there talked to us about IEP's for school and said that we definitely need to get one for her. The school district we're in now always argued with me about it and I was always too wimpy to fight them. Dr Abbott and his staff were great. It seems like a really nice personable place to go. He looked at her MRI, said he sees the enhancement on her pituitary gland but he wants to see a previous MRI so I'm going to track one down and mail them back to him. He also saw enhancement on her meninges which he says happens to a lot of kids that have chronic headaches. So that answers the questions that anyone might have as to if her headaches are stress or physical. They are mostly physical. I'm sure there's some stress component but they're caused by remnants of meningitis and the hydrocephalus and they're not going anywhere. He said he might think about putting her shunt in her head but I'm sure Dr Sood has already thought of that and he must have good reasons for not doing that and I am not going to even ask him about it. We trust him completely. We just thought another doctor might have a different idea. So I'll mail Dr Abbott the MRI's and see what he thinks about possible recurrance. Other than that we'll go on with our summer and see what happens.

After the appointment, we went to the Metro Museum of Art. To get there, we walked thru the Bronx which was surprisingly unscary and cool. Lots of people walking around shopping, buying fruit and living life. It was really cool. Then we got on the subway and went to the museum. Now Sam and I are big lovers of Monet. Well, Sam has always loved Monet. They had a ton of them. We were just in awe. They only have one in Detroit and maybe 3-4 in Chicago. So we took tons of pictures, on camera and my cell phone. After that, we went to the American Girl store then back to the hotel. It was still really hot that day so we were wiped out. Then on Wednesday we got up and took the Metro North from Connecticut into the city. We went to AG store, then to the Children's Brain Tumor Foundation to give Tracy Moore Sam's card for Senator Kennedy. She also printed off a few of her poems. Tracy also talked to us about getting Sam some neuropsych testing to make sure we're doing all we can to make sure she's successful in school. We may be moving this summer, she's not remotely interested in returning to her high school. No one ever called her to see how she was. It really sucked so she wants to start over. I don't blame her at all. She has to repeat the 9th grade anyway so why not start over somewhere new. We went to look at a really nice apartment complex today. We'll see what happens. Anywho, back to our trip. After visiting with Tracy, we took a taxi to visit with cb/visit/sweetlily and her amazing parents Olivia and Dennis. They live in Tompkins Square, a really diverse active neighborhood. Their apartment has an amazing view of the Empire State Building and the Chrysler Building and some river, I'm not sure which one. Lily and Sam played frisbee and had a blast. We were going to go out to eat at the restaurant that Dennis works at but Lily was really tired so Sam and I went back to the hotel and went to bed. Then we flew home the next day. All in all I'm glad we went. Less than 3 weeks til Camp Sunshine!!! p.s. I'm 45 and I don't care who knows!!!!

Thursday, June 12, 2008 7:28 PM CDT

We had quite a trip. We met Dr Abbott, Tania, who wrote a great wonderful book on pediatric brain tumors, and we saw Tracy Moore from CBTF and The Langbein Family (cb/visit/sweetlily) I am too tired to update fully tonight as I've acquired my first cold in 3 years and came home to a lawn that desperately needed to be cut. It was a good trip. We didn't really hear anything helpful medically but it's not really surprising. He had a couple of ideas so we'll see. I love New York City. Ok, I will probably update more tomorrow. I'm going to bed. Sam says HI....

I have to say a special thank you to Dr Abbott, Tania and their secretary Wilma who were all so helpful and gracious. And to Tracy and the staff at Children's Pediatric Brain Tumor Foundation for being so welcoming and encouraging and to the Langbein family for being so cool and having such a great apartment with the fantastic view. Ok, I'm correcting more typing than I'm typing so I'm going to bed. Night!

Monday, June 9, 2008 4:22 PM CDT

Happy Birthday to my sister Mary in Texas. I'll try and call you tonight. My phone died yesterday on the train. She and I are actually the same age for the next 4 days.

Well, we are here. And it's too hot to go into the city so we're just hanging out at the hotel today. It's very nice. We're in Connecticut. We went thru 8 states just to get here and we went into Maryland 3 different times. I don't know how that's possible. We were in Ohio, Pennsylvania, Maryland, West Virginia, Delaware, New York, New Jersey and Connecticut. Pa twice and Md thrice.

Sam has not been feeling well. So it's ok that we're just hanging out. Ok gotta get back up to the room. We'll update tomorrow after the appointment. Pray that we get some answers or at least ideas!!! Take care all and also pray for some heat relief. Sheesh!!

Saturday, June 9, 2008 12:53 PM EDT

Well, We'll be on our way in about 11 hours. The air conditioning in my car went out yesterday. Ohmigosh, you don't know what you have until it's gone. Luckily today has been cloudy so it hasn't reached 93 degrees like they said. We are packing and getting ready. We are going to meet our friends Olivia, Dennis and Lily (caringbridge.org/visit/sweetlily) on Wednesday. Check out her page, she the cutest thing ever. We met them last summer at Camp Sunshine. If we can update from New York we will. Ok talk to you all later!!! Ellen and Sammi

Monday, June 2, 2008 8:22 AM CDT

Well, I feel like I'm singing the same tune but Sam's not feeling well. The only thing that's going well is she and Alec have discovered a DS game they can play together and it's so good to hear them laughing together.

We have our plans all set. We leave late Saturday night from Toledo and arrive in Washington DC the next afternoon. We have a 2.5 hour layover and then we arrive in Ct around 9ish. The hotel is only about 2 miles from the train station. We got a great deal on a 4 star Hyatt hotel from Hotwire.com. Only 99 bucks a night. We'll take the train into NYC everyday, about a 45 minute ride. Monday is a free day. Tuesday we have our appointment at 2pm. Wednesday is a free day. And Thursday we fly home from LaGuardia. I want to go to the Empire State Building at night and to the Metropolitan Museum of Art. Sam wants to go to the American Girl Store. That's all we have set in stone.

Tuesday, May 27, 2008 8:45 PM CDT

Sam has felt really bad today. She spent the night at Aunt Ruthies. When I got home she was sleeping. She never sleeps during the day. I am finalizing our plans for New York. We are praying that he can help. We are taking the train there and flying home. It was the cheapest way to go. The train goes from Toledo to Washington DC. We lay over for 2.5 hours. Not sure how close the train is to downtown. I've always wanted to go to DC. Then we go to Connecticut. It's not far from the city and much cheaper to stay.

I hope she feels better tomorrow. I'm really tired today. We're going to bed. Thank you to all the people who signed her book and for all the cards from Audreys Umbrella. You guys rule!!!

Saturday, May 24, 2008 3:53 PM CDT

Sam is not feeling well today. We were supposed to go to a mall about 50 miles from here to eat at the Rain Forest Cafe' but she doesn't feel well enough. Last night we went out to eat with Chris and Alec and then went to see Narnia...again.. Sam really liked it. It is really good. We have our appointment to see Dr Abbott. It's June 10th at 2pm. I got one day off work and one trade day. We'll come back on Thursday. She's excited. She just wants to feel better. I just want her to feel better. *****Sam is feeling very sad today. She's been crying. She hardly ever cries. Please leave her a message if you read this. I'm not sure if it's the not feeling well or if it's the she's lonely and sick of mom thing (I can't blame her for that :( ).

Wednesday, May 21, 2008 5:28 PM CDT

Sam is feeling ok. We got a new script for new dose of Vicodin so she's happy about that. We increased it at home and it did help so they wrote us one. We are working on getting her an appointment to see Dr Rick Abbott, a neurosurgeon in the Bronx, he studied under the esteemed Fred Epstein. I have to refinance my car but who cares. It's just money.

They sent her home on a 30 day heart monitor. When she feels the palpitations, she wakes me up, I hand her the monitor, she puts it on her chest and hits record. Then when it's done, I call the company and they record the recorder. We did it 3 times last night. It has to be from a land line, so she'll be at my house for the next 28 days. Chris only has a cell phone. Who cares, it's only sleep. If she has to wake up, then I feel like I should too. Ok, we all went to see Narnia last night, it was amazing. I work the next few days so I'll update on Saturday. Take care all...

Monday, May 19, 2008 12:37 AM CDT

Well, they haven't found anything wrong with her heart which is good news. So they're going to send us home with a 30 day monitor. She's feeling pretty crappy today. Nauseated and headachy. But she doesn't feel like dealing with the shunt resetting nightmare so I will probably bring her back tomorrow or Wednesday. I don't have to work til Thursday and I'm working overtime on Friday so it should be a good week. We're going to go try and see Narnia tonight. We had the roommate from hell so neither of us got a lot of sleep. It was horrible. 'Nuff said. We just saw one of the NP's from neurosurgery about Sam's squishy head. He says it's definately fluid, since her thyroid is fine. But it's nothing to worry about and nothing to cause symptoms. Now why the left side of her face is all swollen, he has no idea. Ok, we'll update tomorrow.

Sunday, May 18, 2008 2:27 PM CDT

Sam's been admitted to the hospital...she's been having problems with heart palpitations. They've been keeping her awake at night. So Chris took her in this morning. The admitted her and they will put her on a monitor tonight and we will see what happens. I'm at work right now, I'll be leaving in a few hours, go home, get some stuff, pick up Alec and go down there and trade places with Chris. I'll update tomorrow. Take care all. Ellen and Sammi

Friday, May 16, 2008 5:28 PM EDT

Hi all....Sam's had a pretty painful week. We're waiting for neurosurgery to call. But now it's 5:30 on Friday which means no call. She and Alec are spending the night at Nik's house. They are so freaking excited. I dropped them off around 3. I'll pick them up tomorrow night around 7:30pm, after work. They are going to Eastern Market tomorrow. It's the big farm market in Detroit and it should be pretty cool. I've never been there so I'm kinda jealous but I sent the camera with them so hopefully I'll get an idea of what they'll be up to.

I ended up working a crap load of over time yesterday so I'm pretty wiped out. I'm going to make some banana bread and then go to bed. It's just too early to go to bed. It's so nice out today. I wish I weren't so tired. Ok, off to the kitchen. Take care all....Please pray for Declan, Katherine, Lauren, Marissa and all the other fighters out there.

Sunday, May 11, 2008 8:38 PM EDT

First and most importantly, Happy Mothers Day to all Moms out there. But especially to the moms who take such good care of sick kids. It is by far the toughest thing in the world. I have learned so much about my children and myself. I feel blessed to have my children.

We had a good day. We had really low barometric pressure today and Sam has felt really crappy. I had to work for a few hours this morning and then we went to Nik's house and met his girlfriends mom. We had a good time, Veronica is quite the hostess. Sam left me a "top ten" list. I'll give you a few examples.

9. When you're super tired, you get goofy, not grumpy.
8. You understand my "hospital based" jokes.
7. You laugh at all my jokes.
5. You realize, acknowledge and apologize for your mistakes.
4. You never let me feel guilty for being sick.
3. You found Camp Sunshine and take me there every year.
2. You always make sure I'm comfortable.
1. and the number 1 reason you're the best? I always feel safe, loved and secure with you.

I can't say it any better than that. Thank you to each of my children. Nikolaas for always making me laugh, no matter what and for being so interesting to talk to. Caitlin for being my friend and for being such an important person in my day to day life. Samantha for teaching me the importance of being there for my kids 100�nd for teaching me the meaning of bravery. And Alec for teaching me patience, true understanding and true love for a child who needs me.

I kind of hate Mothers Day. Not having my mom here to celebrate with me puts a damper on the day, even tho it's been 15 Mothers Days since she left. She really fought. Going thru that whole experience, watching her fight and then finally accept, was very hard. And beautiful. And scary. Mom, I love and miss you and I can't wait to see you again. In the meantime, take care of all the beautiful children who are in heaven way too early.

Monday, May 5, 2008 8:23 PM CDT

Today is National Brain Tumor Awareness Day!!! Take a moment to think of all the survivors out here.....and a moment for all the Angels.

Sam is still feeling crappy. Nauseated all the time. We are having a problem getting her enough Zofran. Apparently most insurance companies will only pay for 18 a month. I don't understand it. For some reason, there's a limit on this drug. It's weird. It's generic and doesn't cost anywhere near what her other stuff costs. So I'll be calling downtown tomorrow to find out if they can get prior authorization for it. Her head is still squishy, her face is still swollen and she still feels crappy. I have a class tomorrow morning so I might take her downtown tomorrow after that.

Caitlin is home. Til Wednesday. Tomorrow we're all going out to dinner. Ellen and all the kids. Nik, Cait, Sam and Alec. Woo Hoo!! Early mothers day for me. I'm so excited. It's been about 18 months since we were all together. Too long.

Friday, May 2, 2008 5:50 PM EDT

Sam is ok today, I didn't feel well so I didn't go to work but we had a lot of fun after my nap. My sleep has been really messed up lately so it's been kind of rough.

The kids are at Chris' house so I'm all by myself. I'm going to watch Golden Compass. Alec and I saw it 3 times at the theatre I think. It's a really good movie. You should rent it!!!

Love, Ellen and Sammi

Thursday, May 1, 2008 7:08 PM EDT

Today has been a yucky day around here. Both Sam and Alec were feeling really nauseated. Alec has had an upset tummy. So we've been laying low.

Chris came over here and got my lawn mower working for me. Thank You Chris!! What a huge relief, the kids thought we were living in the jungle!

Sam didn't feel well enough to go downtown, maybe on Monday. We'll see how she does. I'm going to call the doctors office, the one in the Bronx on Monday. I hope they can help us.

Wednesday, April 30, 2008 9:04 PM CDT

I picked Sam up today, she's feeling really crappy. Not sure if it's the weather or not, today is the worst I've seen her in a while. I am hoping it's just the weather. She is just laying on the couch holding her head. She can't have any more vicodin for about an hour. It'll be a long hour.

Sunday, April 27, 2008 7:41 PM EDT

Sam and Alec went to Aunt Ruthie's for a couple days. They're off school and I have to work so off they go. I'll pick up Alec on Tuesday night after work and his buddy DJ is going to spend a couple days with us. No appointments this week, although we are supposed to have psych appointments but I don't think they've been scheduled yet. I have training on Wednesday morning but it's luckily about 2 miles from my house.

It's kind of weird to be home by myself. I took a nap and I'm going to color my hair and vacuum my room and that's about it. I was supposed to cut the grass but I guess I'll wait. Maybe tomorrow, we'll see.

Ok, I'm off to the kitchen....Please pray for Katherine, Lauren, Marissa and all the other kids out there...Way too many.

Friday, April 25, 2008 4:22 PM EDT

Hi all....today is cloudy and windy so Sam's headache is a bit worse than usual but she seems ok. We didn't go downtown to adjust her shunt because she felt pretty crappy this morning. It didn't really help that I slept til noon!!!! I took Alec to school this morning, went back to bed and boom....it's noon! Sheesh....So I picked up Alec, went shopping and we're going to have a quiet night at home...

I had another dream about Camp Sunshine last night. I dreamt, once again, that I got lost in the new building..We are so excited about camp. It's only about 9 weeks away. I am saving my pennies to pay for gas to get there. I can't even imagine how much it's going to cost by July.

Ok, time to put the groceries away. Please pray for visit/katherinebarnard and visit/austinmelgar.

Tuesday, April 22, 2008 7:45 AM EDT

Sorry for the delay in updating, but I had to work over the weekend and had a bad headache yesterday. Sam has a cold now, so of course she's having trouble taking her ddavp so I'm going to get a prescription filled for ddavp pills. They don't work as well for her but better than trying to inhale liquid when your nose is stuffed. She's just miserable when she has a cold.

Yesterday she helped me with some yard work and we went for a walk. She's been sewing a lot and reading, working on homework. That's about it. She wants to go on Friday and get her shunt adjusted. Today she's still not feeling well. She's started a headache log. Sunday was a nine, out of ten. Yesterday was a seven.

Ok, I'm going back to bed, we were up all night with her nose issues. I'll try and update again later.

It's so nice out. Alec and I were outside playing catch and Sam decided to join us. Then she asked Alec to climb the tree. She is definitely more active the last couple of days. Which is only good for her. Getting her out in the sun and moving is a big part of our plan. So we're moving in the right direction. Ok, time for more board games. We've had a lot of fun today.

Wednesday, April 16, 2008 1:42 PM CDT

Well, just as I suspected.....Sam's thyroid is working just fine. So we're back to no idea why she's gained so much weight and why her hair is falling out.

She did get her shunt adjusted back up this morning and she's going to her cousins for the weekend so she's pretty happy today. We'll probably go in for one more adjustment on Monday. We have more appointments downtown today for her and Alec so we're about to go back down. Gosh, I hate driving, I hate construction and I hate not having answers.

On a good note, it's beeeeautiful outside and no one can take that away.....So we might go down to the river and walk around, get some sun and have a good time.

Tuesday, April 15, 2008 8:28 PM EDT

Well Sam is still not feeling any better, so I'm going to take her downtown to start having her shunt set back up. Still no results from Endo, which I'm kind of frustrated about. But we can get them tomorrow. She said she's been really nauseated today and every time I talk to her I can tell her head is killing her. So tomorrow we have 4 appointments downtown, then on Thursday we have to drive 30 miles to see the pain specialist. Those are my days off this week. I'm not bitching, I'm just saying. When I have a Sunday off, I try to not do anything. Every other Sunday, I can relax. That's really not enough.

Ok I'm done. We'll update tomorrow. Love, Ellen and Sammi

Sunday, April 13, 2008 7:40 PM EDT

Hi all from beautiful Michigan. It's a little cool out but very sunny and the barometric pressure is really good. Of course, Sam has had a bad day. She wants to get her shunt set back up. I have to work tomorrow and Tuesday but I might have to call in to take her. Probably on Tuesday. She wants to wait and see how she feels tomorrow. She has taken 4 vicodin today. We never heard about her thyroid levels, and Dr Moltz said that we would only hear if there's a problem but I always verify results and will do that tomorrow.

There is a neurosurgeon in New York that we've been told about, Rick Abbott and his nurse Tania who co-authored the "Bible" on pediatric brain tumors. As soon as I hear about Sam's thyroid I'm going to call and talk to her. Thank you Janet, for the information....I hope it'll be helpful. Sam needs something. It's just horrible. OK I'm done crabbing.. I'll update tomorrow.

Friday, April 11, 2008 5:53 PM CDT

Sam is not doing well today. We have some bad storms coming thru and it really makes her head hurt.

Caitlin came home for a day cuz she missed her Mama. She went back last night. She'll be home in about 3 weeks, her friend Jen is going to have a baby in a few weeks. I love you Caitlin, I was glad I could help.

We'll update more on Sunday. Sam's hanging in there.

Tuesday, April 8, 2008 4:17 PM EDT

Well, after a long day, we are back. We drove 40 miles to see the neurologist and they told us they had called us and cancelled the appointment. HMMMMM....So then we went to a used book sale, dropped in at the PD and then went to the endo appointment. Alec has gained over 10 lbs and 4 cms. Sam has gained TOO much and not gotten too much taller, maybe another 1/2 cm or something. Dr Moltz thinks her thyroid is not working or slowed down. So they drew lots of blood and she'll call if there's any problem. But she really thinks it is the thyroid. They've increased the growth hormone again and her bone age is between 13-14.

We're going to be getting some bad storms here the next few days so I'm anticipating bad headache days for Sam. Yuck.

Monday, April 7, 2008 4:03 PM CDT

We saw Dr Sood today. Thank God for Dr Sood. He took one look at Sam and said Wow she's gained a lot of weight. I told him she's gained about 26 lbs since November. He felt the swelling on the back of her head and and said it wasn't fluid it's fat. He said she's probably on too much cortef, which would cause the weight gain, the swelling on her head, neck and face and possibly headaches.... Also, she's losing a lot of hair and he said that maybe, finally, her thyroid gave out. Remember her endo has always been amazed that it works at all.

So for the first time in a long time, I'm a little bit hopeful. Just a little bit, I don't want to set myself or her up for a big disappointment. We see her neurologist and endo tomorrow so we should get some more answers.

I'll update more tomorrow. In the meantime, please pray that we get some answers. All we want is Sam to be able to return to school and a more normal life.

Alec came home puking from school today so he's quarantined to the bedroom until tomorrow. I don't want Sam getting sick. I think he's feeling better. I forgot to take my phone to the doctors appointment this morning so when we got home I had frantic messages from the wonderful secretary at Wilson (Alec's school) telling me he had puked in the hall and was puking all over school (that might be a bit of an exaggeration) but I could tell it was a desperate situation. He looked pretty happy to see me. He (and I) took a long nap when we got home. We all had trouble sleeping last night.

Congratulations to visit/katherinebarnard on her liver results... What a brave strong girl. Ok Alec and I are going to play Risk. I hate Risk.

Thursday, April 3, 2008 7:07 PM CDT

Sam has had a pretty rough day. She has had to take her desmopressin 4 times and vicodin 3 times. She wants another one but I told her no. We see Dr Sood (neurosurgeon) on Monday and Dr Moltz (endocrinologist) on Tuesday, so we are really trying to make it thru the weekend. I am not sure what is going on with her. Ok, I gotta go vacuum and straighten up before I go to work tomorrow. Blah. I hate working weekends. 36 hours in 3 days. Hopefully I will not get forced over for overtime.

Oh and thank you to "Patchwork Prayer". They sent Sam a beautiful quilt with strings on it to tie for prayers. We are going to do one tonight. So thank you to Becki and Belvia. What a great surprise!!!

Wednesday, April 2, 2008 10:50 AM CDT

Sam is feeling cruddy today. Headache, swelling is worse today, nausea, the usual. I am taking her downtown for a psychology appointment but can't take her to neurosurgery because we have to pick up Alec at 3. So if she's still feeling like this tomorrow, I'll take her down at 10am. We are supposed to see Dr Sood on Monday, but I don't know if I want to wait. We might just wait, I guess it depends on how she feels. I have to work this weekend. Blah...Ok I have a headache too (sympathy pain).

HAPPY BIRTHDAY VERONICA!!!!

Monday, March 31, 2008 6:45 PM CDT

Sam is doing ok, sorry for not updating but we actually had a busy weekend. Sam wasn't feeling well on Friday and Alec got sick so we had to quarantine them. Sam was with me, Alec with his dad. On Saturday we went shopping and to a movie. And we had lunch with Calvin and my sister Jenni. Since Sam has gained all this weight, she has outgrown all of her pants and a lot of shirts. So we went to Old Navy. Then we saw "The Other Boleyn Girl". We are huge Elizabeth, etc fans so it was a really good movie. On Sunday we ended up visiting Nikolaas and Veronica at their new house. It was really cute and we had a good time. Nik was sitting next to Sam, kind of leaning on her. They really miss each other.

Sam is having trouble sleeping, says she is getting short of breath when she's laying down. I have also noticed her use of DDAVP has increased. She used to go thru 3 boxes a month, now it's about 3 boxes in 2-3 weeks. I'm not sure what that's about. We see her endo next week so I'm sure she'll notice. The weight gain (30 lbs) in 3 months etc....She has a weird rash on her chest right now too. Head is still squishy, still nauseated and very headachy. I will take her back on Wednesday if she's still feeling bad.

Ok, I'm tired, going to go to bed, I have to work another 12 hours tomorrow. 12 hour shifts are great in theory but in reality it's a long day. But it's nice when I only have to work 2 days. This week is my 5 days. Yuck.

Prayers are needed for Marissa, Lauren and lots of other kids....These kids are out there fighting everyday. They are amazing....

Thursday, March 27, 2008- 5 years

About 5 years and 12 hours ago, I woke and I felt so weird. I couldn't place what was making me feel odd, until I threw up and dad got me up to take me to the hospital. That's when I noticed my neck was as stiff as a board and the slightest movement sent waves of extreme pain down my back. It started as a slight headache and 5 years...60 months...34 surgeries...4 valves...7 new drug and tape allergies and 1 metal plate later, the headache is still taking up residence somewhere for some reason in my brain. Tuesday was honestly the worst day of my life, including the diagnoses and the time they took my shunt out.

I've lost a lot of things the last 5 years, some permanently, like 3 hormones, a quarter of the hair on my head, and some things that are hopefully not so permanent, like a pain free day. It is so very tiring to be in pain all the time, to never get a break.

>

But thankfully I've gained a lot too. I never knew how truly kind people can be...I never knew about that sick-kid world where everyone is the family you never met. I never would have discovered poetry or feel the joy that comes from writing a poem for someone who needs the support from someone who understands, or from just doing anything to truly help someone. I never would have been able to go to Camp Sunshine, which has been such a life-saver, I never would have made speeches on behalf of my hospital, or get an award during a pistons game.

I never would have met Simonne, or Samantha, or all the awesome people at Camp Sunshine.

And for all that, I'm truly thankful and wouldn't give up any of it.

Mom is coming home late tonight and when she gets home, she'll have more pictures for me to post...just some pictures depicting different stages of my little brain tumor journey.

Love, Sammi

Here is a new montage of Sammi.

Tuesday, March 25, 2008 5:41 PM CDT

WE are on our way back down town cept this time Sam's in an ambulance and I'm driving like a madwoman...Please pray for her.....

****Wednesday...we are home. But what a disaster yesterday turned out to be. We went downtown, they tapped her shunt. They wanted her to lay down for 30 minutes so they could get an accurate reading. It turned out to be about an hour because they had a patient have a seizure in CT. By the time they got in there, she was crying because laying flat really hurts her head. So they tapped her, the pressure was about 15, which is high but not as high as it was last time. Then they had her sit up and her pressure went negative. She said she could hear the fluid gurgling as it went back in. Then they reset her shunt to 180. It only took about 4 x-rays. They have a "Project Samantha" team there for her x-rays. The head x-ray tech and Beth are determined that it not take 20 x-rays to get her picture. So anyway, after they determined her shunt was set correctly, we left. I had to run to work to get something and I could just tell she was feeling worse than usual after an adjustment. We got home, I dropped her off because I had to go get her Vicodin prescription refilled. I've been losing my signal in my cell phone recently and didn't check it while I was gone. When I got back, she was on the couch, screaming that she needed to go to the hospital. She started dry heaving so I wasn't comfortable driving her downtown because if she started vomiting and we were stuck somewhere we'd be in big trouble. So I took her to our local hospital. They took real good care of her and within about 30 minutes she was on her way downtown in an ambulance. She was freezing, her head was killing her and her pulse was about 145. I think she was going into adrenal crisis but they gave her some solumedral. I came home to pack up some things real quick. I actually beat the ambulance there. ( I was probably driving too fast ). They called Dr Sood and he said to set her shunt back to 160. I asked the doctor what good that was going to do in the big picture, forgetting she was in the ER and their focus is getting her home that night. She did start feeling better, probably because of the solumedrol. They also had given her some oxygen in the ambulance and that helped her headache. Right now she's sleeping, she was up all night with headache. She never ate anything yesterday and is still refusing food. So after all that, we're right back where we were yesterday. And for that matter 5 years ago. Five years ago today I took her to the doctors for a bad headache. Who knew that this was just the beginning? Beginning of a nightmare.

So I have a call into neurosurgery and I'm waiting for them to call back. The story of my life.

****Beth just called back. She said Dr Sood, who's on vacation this week, came in to review charts since he was on call last night. He saw that Sam had been in, looked out the window and said "Sam's going to have trouble today". It was cloudy and windy etc... I have known that she has problems with the weather. There's nothing we can do about the weather. She's going to talk to him today and call us back. He is going to want to wait. This is just hopeless.

***We've had a little better day. My sisters are in from out of town, one from Texas and one from Indiana, with their boys. So Sam and I spent the evening with them. She still feels like crud. Please look for a big update from her tomorrow. She's been writing all day. Tomorrow is the 5th anniversary of everything....

Monday, March 24, 2008 7:50 AM CDT

Hi all....hope you all had a nice Easter. I had to work but it was really really quiet. I got to go on the road for a couple of hours and it was really nice to get out of the "office" for a few. And I got to leave early, it was a great work day.

Unfortunately, the awesome day didn't go home with me. Sam's head is swollen again. Her headaches are just horrible. Alec is major stressed out. I'm going to call downtown and see if there's anything they can do. She wants her shunt turned back up but I don't think they will if she's leaking again. Hopefully they'll tap it today and see where her pressures are. Then we can get an idea of where we are and where we need to go. Plus Dr Sood has his office hours today. We were supposed to go see him but they cancelled his appointments. Don't know if he had a big surgery scheduled or if something else happened. I'll update later.

*****Well no one ever called me back, I called at 1:30 and they said to bring her down. Of course, it is too late today so we have to wait until tomorrow. Which means I will be driving downtown tomorrow twice. I should have just brought her down this morning. Last time I did that tho, they said they could not do anything because she was still constipated. We are sick of this. All of it. Everything.

Saturday, March 22, 2008 7:58 PM CDT

Sam and Alec are at Nana's. I'm actually home by myself tonight. Feeling kind of sad and lonely without the kids. But I'm sure I'll be fine tomorrow when they get home. Please pray for Marissa and Lauren and all the other kids out there that we know who are fighting and struggling and living and inspiring us. And for the parents who are left dealing with feelings that no one should have to experience. This is just a nightmare for everyone involved. It's no way to live. And on the other hand, it's made life amazing and beautiful and better. It's twisted, you'd have to be here to believe it.

Wednesday, March 19, 2008 7:26 PM CDT

Today has been an ok day. It's been raining forever it seems. Kinda cold, crappy. We've been real quiet, watching movies, reading etc.... We were going to go to the Detroit Science Museum but they're only open til 3pm and by the time we realized it, it was too late. Plus Sam has not felt well today so we probably wouldn't have gone. Tomorrow Sam sees the pain specialist. I'm going to ask about acupuncture.

I'm really missing Camp Sunshine today. It's just such a great group of people to be with and they sooooo understand where we are and what we deal with. There's really no one to talk to outside of that. I think we should move to Maine!!! Even Alec was saying today that he missed it. Caitlin is going with us this year. It will be great. To spend a week with her?!?!?! Priceless.

Sam and Alec by the tree we planted in memory of the kids who had passed in the prior year. What a great tribute.

We can't wait to go back.

Sam has been very uncomfortable today. Really nauseated earlier, and horrible headache all day. I'm sure it's because her shunt is set too low but the squishy head seems to be resolving. I'm afraid if they turn it back up, it'll get squishy again. So like I said before. It's either squishy and leaking, which isn't good or nauseated and pain, which isn't good either. We have to resolve the leak so I guess we'll wait.

*****We saw the pain specialist today. She needs to talk to Dr Sood before we talk about anything new i.e. acupuncture. She mentioned some kind of energy healing. Not sure what that is but she wanted to check with him first. We see her again in a month. She said Sam is a natural at the relaxation and imagination exercises.

I think her swelling is GONE!! Which is awesome. I guess I'll take her downtown on Monday and see about getting her shunt set back up so she's not so nauseated all the time. Well, I have to work next 3 days (Blah). I think we're supposed to get 4 inches of snow tomorrow. WELCOME SPRING!!

Sunday, March 16, 2008 10:19 AM CDT

We've had a fun weekend. Kind of boring but fun. We went to a cystic fibrosis fundraiser last night. A girl who is now treated at U of M, Emily, has been friends with Simonne forever. She's in a rock band called, of all things, Hellen. That's my nickname at work. It's even spelled with 2 L's. Anywho, we went to see her perform. She's a drummer. It was really cool. They had a girl named Rose Harting perform. She's from San Francisco and has CF. She was amazing. It's very inspirational to see these people going on with life and even celebrating with all they go thru on a daily basis.

This is Emily, Sammi, Simonne and Julia. They all have CF (except Sammi). If anyone from Children's sees these pictures, please don't report Simonne for being close to other CF patients. Apparently they all have little germs that can pass back and forth and wreak havoc. So they're supposed to stay away from each other. Can you imagine if you had to stay away from the only people in the world who totally understand what you go thru on a regular basis? Horrible...but we're a bit sneaky. Don't tell!!!

Sammi and Simonne. I forgot to take fun pictures at the hospital....

Sam's shoe fiasco...amusing...

Last but not least, the snow I had to shovel to get out of the driveway to take Sam to the hospital.

Today we're going to Papa and Diane's to visit, since they just returned from Florida. We also get to see Lucy, their favorite dog in the world!!

Sam is feeling pretty crappy today. When is this swelling going to go away? Apparently never.

Alec is doing well. Weight is stable, eating is backsliding but that's pretty normal. He's just a work in progress. We all are...

Friday, March 14, 2008 4:35 PM CDT

Took Sam to see neurosurgery today. Her swelling seems to be resolving and her tummy issues are getting better. She's still not feeling great but maybe when the leaking stops they can reset her valve up to where it should be. Kids are off school next week for Winter Break (whatever that is) and so we should have lots of time together. Unfortunately I have to work Mon, Tues and Fri. But that's ok.

Our family crisis has settled down a bit but has not resolved. We are doing the best we can under the circumstances. So your continued prayers would be greatly appreciated... Sam seems like she's been feeling better, she's smiling and laughing a lot more. In fact, today when we got to the hospital, she noticed that she had 2 completely different shoes on. I did tell Beth (the ns nurse) that it appeared she had altered mental status!! Beth said she's done the same thing before. Then we got to see Simonne and we are taking Simonne out of the hospital tomorrow for a field trip!!!! I'll report more tomorrow!

Wednesday, March 12, 2008 5:23 PM CDT

Sam is ok. Lots of nausea but she's taking benadryl for it. She tried compazine but that gave her shaky legs and after the dystonic reaction to reglan a few years ago, we said no more. She still has swelling but it seems stable.

We are undergoing somewhat of a family crisis right now and would appreciate prayers. God knows what we need. But the kids are ok, that's the important thing.

Monday, March 10, 2008 2:59 PM CDT

Well her swelling has gone down, since they lowered her medos valve setting but that is giving her low pressure headaches. So they lowered it even more, hoping the leak will close by itself. I feel like we're damned if we do, damned if we don't. On one hand if it's lower, she won't leak as much. But she feels pretty crappy. If it's higher, she's leaking but not so nauseated.

She's pretty crabby right now, so I'll end for now. Take care. Ellen, Sammi and Alec

Friday, March 7, 2008 5:23 PM CST

Well, things seem better today. They really aren't but maybe a good nights sleep helped. Sam's head is still leaking so if she's still having problems on Monday, I'll take her back down and they'll adjust her shunt down to 160. If anything, her swelling is worse. I called down there today and they didn't seem too concerned so I guess I won't be (riiiiight). She's going to Nana's tomorrow so she's happy.

Wednesday, March 5, 2008 9:27 PM CST

OHMIGOD. Today was the day from hell. It started with 10.2 inches of snow. We got the most in the entire state. Mapquest Wyandotte Michigan and see how small it is. So I went outside to shovel and it was just impossible. They had plowed our street twice and the snow was packed and frozen and about 2 feet high. I shoveled a trail from the porch to the end of the driveway and finally got the car out. In between crying and cursing and asking a guy across the street if he would snowblow my driveway for $20 so I could get my sick daughter to the hospital. He said no. Are you frigging kidding me? God, I was so disheartened. I don't think I've ever been so sad, mad and pissed in my entire life. So we drive down town. We get there at 12:30. We sit for 2 hours. The nurse had another patient. That's fine, that's been us before. We get back there and Beth takes her time, feels her head and calls it occipital edema. We prefer squishy head. The left side of her face is swollen also. Says something is definitely going on. So they tap her shunt. Her pressure is usually under 5. It was 25. That's pretty high. No wonder her head has been killing her. So Beth drains about 2 teaspoons and takes her pressure down to 15. And they decide to set her medos valve a little lower, down to 180. They also are going to draw blood to make sure there's no infection and send csf studies for cultures. So we head over to x-ray. Now it's 3:30. We wait for a few minutes and they take us in. Now keep in mind, her valve is facing heaven. So it's hard to x-ray. So 19 x-rays later, I ask what time does the lab close. I have a class 50 miles from home Thursday and Friday and there's no way I can miss it. So they said it closed at 4:30. It's now 4:30. They try to get a few more pics, the x-ray lady says Ok we're good, I got it, and we ran down to the lab. And then we came home. Then the phone rang. It was Beth. She asked me how I was, I said, "You tell me!". She told me they had never got a good reading on her valve so we could either come back tonight or wait til tomorrow and hope that her valve wasn't set so low that she started puking and then we'd have to take her to our local hospital and then they'd ambulate her to Childrens. Sheesh. So we got back in the car and drove down. We had to page neurosurgery when we got there. She didn't call the front desk so we headed up to Five West, where we figured she'd probably be. And she was there. Her name is Cheri, she's a nurse practitioner. We also noticed Simonne's name up on the board so we went down, said hi and might be going back tomorrow to see her.

Anywho, Cheri said we had to go thru the ER. ARGH>>> So we went to the ER. They laid her on her stomach, put something under her right hip and 3 x-rays later said yup she's at 180. Now keep in mind that when Beth had reset her earlier, unbeknownst to us, it had gone down to 80. So if we hadn't gone in tonight, we would have ended up in the ER. So it worked out. Needless to say, I have a shit load of shoveling to do tomorrow after my class which is 50 miles away. Awesome, I can't wait. It's all frozen and packed. It's going to be great. This is just an average day in our lives. It kinda sux that it's my only day off this week. Oh well...I think she's actually feeling better, she's giggling, humming and we're watching the finale of Project Runway!!! Oh and she weighs 108 lbs and has grown 1/2 an inch in the last 3 weeks. We saw Dr Moltz, her endocrinologist, in the gift shop and said that Sam looked fantastic, weight wise. Her little tummy (not so little) is appropriate for her to grow and grow up. So we tease her about it, since she's always been so skinny. I think she likes it!!

Ok going to bed, we'll update tomorrow and let you know how she's feeling. Love, Ellen and Sammi

******Thursday, Sam really not feeling any better and in my opinion her swelling is worse. But I know we have to give it a few days. She is looking forward to going to Nanas house on Saturday. So hopefully she will be able to enjoy that. I have to work. And shovel. Possibly 8 more inches tomorrow night. I have not even finished from the other day. I hope I do not get a ticket. I just do not have the energy to shovel anymore. Things seems pretty bleak this week for us. There are just a lot of things going on that I cannot do anything about. That is very frustrating. Hopefully Sam will start feeling better. That will help. A lot.

Tuesday, March 4, 2008 7:58 PM CST

Well, we're going back down town tomorrow, after getting 7 inches of snow tonight. Hopefully the trip down won't be too bad. Her head is still retaining fluid, as well as her neck. So they'll draw some blood to check her CBC and CRP and draw some fluid from her new resevoir to make sure there's no csf infection. I think there's something going on, she's never had swelling like this before and it's been almost 3 weeks since the surgery. It really should be gone by now, if it's just post-surgical swelling.

We'll update when we get home.

Monday, March 3, 2008 8:30 PM CST

So what are we supposed to do? Her headaches are unrelenting. It is not her shunt but she still has swelling in her skull and neck. So if her head is still hurting her tomorrow, which I am sure it will be, I will leave work and take her down. I called the Cleveland Clinic today but even if they can help her, my insurance will not pay for it. She asked me how much it would cost. I have no idea but I am sure it is way more than I can afford. It seems like they have some kind of headache clinic there. I might find out more tomorrow. I am about at my wits end. We have no where to turn. I do not know what to do about school. I am putting off calling them. They do not understand. I do not know what to tell them anyway. Her head hurts, she cannot go to school.

p.s. Jodi, I will probably call you tomorrow, I am too tired from work to do it tonight. Thanks

Saturday, March 1, 2008 7:35 PM EST

Well, Sam is not feeling well at all. We very well could be going downtown tonight but we are trying to hold off. She is eating ok and not nauseated so the only concern is her headache is about a 10. She still has some swelling on the back of her head and her neck. It has been over 2 weeks. She is really sick of being sick.

I have been on the internet all day trying to find a good neurologist. One that stands out is Roger Packer at Childrens in Washington DC. So I am going to call on Monday and see what they say. Who knows!!! I will update tomorrow. Blah

PS.....Thanks to Suzie and Jeff Ott who sent Sam another cool package. Included were new scrubs for her scrub missions and an Indian dream catcher. And a beautiful card....THANK YOU!!!

********Well we didn't go downtown. We made it thru another night. She had a better morning, she was laughing and we went to the Detroit Dog Kennel show, thanks to Kathy at Children's who gave us some free tickets. Sam loves pugs and Alec liked the beagles. She's going to try and go to school tomorrow.

Wednesday, February 27, 2008 7:49 PM CST

I ended up not taking Sam downtown. There's really no point. Her headaches are not caused by her shunt. She has an appointment to see the pain specialist on March 18 or something and one to see neurology the same week. Neurology will tell us to stop taking the vicodin for pain. Then the pain specialist will tell her how to relax, meditate and that stuff. She's starting PT again this week and we're having trouble scheduling her psychologist appointment. The man and I keep missing each other, it's just another facet of the frustration that is SammiJean.

I am frustrated beyond belief today. We don't know what to do. Where to turn, who to call...we're wandering around without a GPS. The big problem this week is that she's up all night with her headaches and unable to go to school. If anyone has any suggestions whatsoever, please feel free to let me know.

Tuesday, February 26, 2008 7:35 AM CST

Well they took out Sam's stitches yesterday. They didn't seem too concerned about her "10" headache or swelling. It seems like the skin around her neck is retaining fluid now too. So I guess I'll be calling. She's awake already and is very nauseated. So I gave her a Tigon and we're waiting for 10 am so we can call. We're really not having any fun right now. She's the worst I've seen in a couple years. But because her shunt is working, neurosurgery is not very interested. In my opinion, the swelling should make them a little interested. I don't know.

We ran into our roommates from last time and had a nice little chat. Rebecca had a ganglioglioma removed on the 13th. She was in a regular room the next day. She did great!! She was really nervous about getting her ICP monitor out so she got to watch Sam get hers out and did fine later, so Sam was a great help!!

Ok, I'll update later. We got about 4 inches of snow and it's still snowing so if we go downtown it should be a bit of an adventure.

Monday, February 25, 2008 7:28 AM CST

Well, Sam had a real tough weekend. She was up all night with her headache. I'm going to try and get her to school but I'm not real hopeful. I just don't know what to do. I might call downtown but I don't know what they're going to be able to do. Her head is still squishy so maybe there's something going on with that. Dr Sood is in the office today so I might take her down so we can see him. My first priority is getting her to school but if that doesn't happen I'll probably take her downtown.

Now keep in mind they're re-doing the entire area around the Ambassador Bridge to Canada. 2 freeways and the entire "Bridge Plaza" they're calling it now. They've closed the entire area. So our trip downtown has gone from 20 mins to probably 40. And traffic will be sooooo heavy. Not really looking forward to it to tell you the truth. It will only take 22 months to finish this project. December 2009. OY

Thursday, February 21, 2008 7:58 AM CST

Well, Sam didn't go to school yesterday but she's going today. She really had a lot of trouble sleeping the night before, her headaches are pretty bad. She took 3 vicodin yesterday. Usually she only takes 1 or 2. Her swelling seems about the same so we're just keeping an eye on it.

Ok, we'll update later...

****She went to school. Hooray!! She didn't feel well, but she did go. The fluid accumulation on her skull seems to have gone down a bit but it's kind of hard to tell with all that hair in the way. The principal gave her a note to excuse her "hat wearing" and she has to show it to any staff members that stop her in the hall to ask her to remove her hat. What a pain!! We also got her a locker on the first floor so she can wear a coat to school. They don't let them wear coats to class or carry them around so she's been walking into and out of school without a coat. Now, if any of you have have ever been to or heard of Michigan, it gets pretty darn cold here in winter. So a locker on the first floor is amazing.

Hopefully she's on the way back to a more normal life. That's all we want.

Monday, February 18, 2008 8:31 PM CST

Sam had a pretty rough day today. Headache, nausea and she slept til 12:45. I went over to Chris' after work to see the kids and we were sitting on the couch. And being the touchy feely person I am, I was touching the back of her head. IT WAS SQUISHY! That's not good. I called downtown and Dr Ham said it's probably just fluid accumulating since she's been laying down all day but she's had lots of surgery and this has never happened before. He felt it was safe to leave it overnight. If it's there in the morning, Chris is going to take her downtown. OY... I'll update tomorrow. Ellen

Tuesday night****They feel it's just swelling from surgery, but we have to keep an eye on it. If it gets bigger, if she gets a fever or we get uncomfortable then we have to bring her back down. Her head has really been hurting the last couple of days. Hopefully it's just from the surgery. I guess when they put the resevoir in, they have to separate skin off her skull etc so it's a lot more manipulation than we're used to with a regular ICP monitor. Ok, I'm going to bed. I'll update again tomorrow. Hoping to take her to school in the morning.

Saturday, February 16, 2008 7:29 PM CST

We came home earlier today, Sam is feeling the same but at least we know it's not her shunt. Dr Sood and I agree, it's probably just that she's so sensitive to any change in pressure that weather really affects her. Simonne, who's brother was in, said we should live in an atmosphere controlled bio-dome. I'm researching that as we speak. So she'll go back to school on Monday.

She's pretty darn happy, Rachel is spending the night. It'll be a nice quiet night. I like hearing her laugh and talk and giggle. It's a good thing.

Friday, February 15, 2008 5:59 AM CST

Sam's sodium was low last night, about 132, which isn't horrible but low sodium is not good. She has gone to the bathroom overnight, which is good. She was having a lot of trouble yesterday but apparently the ADH has worn out and hopefully she's back to normal. She's vomited twice since last night. We're having some communication issues at the hospital this time, which I find annoying and potentially harmful. I know that no hospital is perfect but you can't mess around with adrenal crisis and there have been 2 problems this time. I'm not going to get into details or point fingers. She was also having a lot of nausea yesterday and they were supposed to order her some zofran. Of course, they didn't. We'll see what they say when they come in. I noticed over the night that her pressures are higher when she's sleeping. As she's falling asleep, her pressures spike. Could that alone be giving her headaches? I have no idea. Ok, I'm going to go watch the news and get totally depressed about the world falling apart.

Thursday, February 14, 2008 5:19 PM CST

Sam's pressures have been ok....They also put in a resevoir so they can check her pressures or draw fluid without doing surgery. Which I think will be great. She's having some DDAVP issues which may be caused by us overdosing her during the day today. So they're checking her sodium. I'll update later.

Wednesday, February 13, 2008 4:22 PM CST

Sam's headaches are still horrendous, so they're going to put in an ICP monitor tomorrow and see what her pressures are like. We have to be downtown by 7am and with all the construction they're doing down there (they're reconstructing 2 freeway intersection and international bridge access) we're going to have to leave at like 6:15.

We would like to thank all the people who left Sam messages, sent her cards and packages for her birthday. Special thanks to the Otts, who always send such cool stuff and to the Alberts'. I'm not sure who they are but they sent her a package from Onyourbirthday.org. I checked out the website real quick last night and it looks like a real cool organization, something that Sam and I could get involved in.

Ok I had class all day today and my neighborhood snowblower man totally let me down today. So I have to go shovel, clean the house, shop for guinea pig food and get bags packed. I'll update tomorrow as soon as I can.

Monday, February 11, 2008 9:52 PM CST

I just took Sam to our local ER. She says her throat still hurts and that her ear started hurting tonight. So I was torn. I have a class 50 miles from home that I have to go to tomorrow so I can't take her to the doctor. And Chris is working all night so he won't be able to. I'll just take her to the Urgent Care Clinic at our hospital. The co-pay is only $10 for Urgent Care and our doctor won't get yelled at or whatever happens when Sam goes to the ER, by our HMO. Well, 4 years ago when we went to the UCC for everything, they took kids. Now they don't. But we were already there and they have school tomorrow and I have to leave home at 7am so we stayed. We were in and out of there in an hour. But the cool thing is one of the physician's assistants came in and said she had heard Sam had hydro and wanted to know who her doctor was at Childrens. We told her about Dr Sood. She had just met with Dr Sood today about her 20 month old son who has an arachnoid cyst in his left frontal lobe and Dr Sood is going to take it out. I think we were there for a reason. She asked a lot of questions, and I think that when Sam told her that brain surgery really isn't as painful as you'd think, she felt a lot better. How scary, to have a child that small go thru something like that. I hope we helped. Sometimes stuff happens for a reason.

Well, Sam left there feeling worse than when she went in. She had some wax in her ear that they had to remove to visualize her ear drum. It made her ear bleed and she wasn't very happy. Her ear isn't infected and her strep test came back negative but they increased her amoxicillin, to 500 mgs three times a day for 10 more days just in case. She is going back to school tomorrow. You know how I know? I had to make her lunch. Ok, we'll update tomorrow.

Eagerly awaiting spring, flowers, and plain old rain showers....and warmth...all we want is warmth. Ellen and Sammi

Sunday, February 10 2008 00:00 EST

OHMIGOSH... 15 years ago today I had the most wonderful child. Well, you know what I mean. Sam is wonderful. She's creative, freckly, funny, has the most beautiful smile, crabby, compassionate and annoying. Her mama loves her. I'm a little scared of this year. She started out life doing her own thing. She was my most "dramatic" birth experience. One minute I had hours to go. Chris went downstairs to get some rolaids. He almost went outside to have a smoke, but decided not too. I had just gotten a shot of some pain reliever and he probably figured I'd be sleeping. Sam decided right then and there she was sick of messing around and wanted to come out. I just started screaming, in my drug induced haze. Chris made it by about 2 minutes. Then when she was five, they feared she had cystic fibrosis. She got sick a lot as a child and so they had her tested. The normal sodium chloride range is 25-40. Hers came out at a 44. So they re-tested her a week later. It was in the twenties. That was a close one. Then five years later, all this shit started. It's now five years later. FIVE YEARS. Oy. I don't even want to think about what this year could have in store for us if it follows her five year curse. Maybe she'll have a great year. She has made some progress, going back to school (cept for the last 4 days due to strep) and starting physical therapy.

Tomorrow we're going to lunch with Chris and Alec then we're meeting Nikolaas and Veronica for dinner and then they're going bowling with me. It should be a great day!!

I love you Samantha Jean Elisabeth Robertson. More than you'll ever know.

Thursday, February 7, 2008 9:40 PM EST

Sam is feeling just a tiny bit better but her headache seems worse. She should be able to go to school tomorrow. She really needs to go to school tomorrow. But no fever, which is good.

Her birthday is Sunday!!! I can't believe she's going to be 15. Sheesh.....Where has the time gone!!

Ok I have to work tomorrow so I'm going to bed.

Wednesday, February 6, 2008 6:24 PM CST

Sam is still not feeling better, even tho she started her anti-biotics last night. If she's not better by tomorrow, I'll take her back to the doctor. Last time she bounced back pretty quick. The good thing is her fever has been gone since this morning. I know it's goofy, but I worry about shunt infection with this strep thing. Before she got her shunt changed to atrial draining, the nurse said that we didn't want to change her to atrial draining because the chance of infection is so high. OY. And now, strep, twice in 7 weeks? It's enough to make an appointment to get my hair colored.

Jeff, it was so good to talk to you and Suzie tonight, I sure hope she feels better soon, she sounded just awful.

Take care all....Love, Sammi, Ellen and Alec

Tuesday, February 5, 2008 7:44 PM CST

Well, Sam woke up with a fever today, we double dosed her cortef and Chris took her to the pediatricians office. She has strep AGAIN!! So we'll keep an eye on her and pray it doesn't infect her shunt. It's so weird she has this again, I don't think she's ever had it before. Ok, I have a headache and am going to bed.

Ellen

Monday, February 4, 2008 8:38 PM EST

Sam started physical therapy today. We knew she was pigeon toed but apparently she walks tilted to the right, which I have never noticed. We have our own little leaning tower of Pisa, right here in Wyandotte Michigan. Chris says they seem like they'll be able to help her. She has pretty crappy muscle tone which is to be expected after being sedentary for so long. She's going to school, no complaints. She always has lots of homework, so she's keeping busy. She felt pretty cruddy all weekend, but we had some nasty weather go thru. I still haven't done dishes yet....Blah. Working today and tomorrow 12 hours and on Wed I have to drive 40 miles to go to a class to learn how to be a dispatcher, something I've been doing for 10 years but we're all being re-trained. Blah. OH well.

Alec and I are now sellers on Ebay. I am mailing our first item tomorrow. He's soooo excited. Check out Hellen177 on Ebay. Not much there but it's definitely a work in progress.

Ok, I'm going to bed. Love, Ellen

Saturday, February 2, 2008 6:05 PM CST

Sam has had a horrible headache for the last 2 days. Hopefully tomorrow it will be better. I really think the cold fronts that come thru affect her greatly. Any ideas where we could move? Somewhere warm perhaps? Oy

Wednesday, January 30, 2008 8:24 PM CST

URGENT PRAYER REQUEST!!!!!

The Smith Family has been handed a possible cancer diagnosis for Becky, Sarah's mom, and I know it would be appreciated if you all went to Sarah's site and offered her mom your kind words and prayers! They have been through so much and they are an incredible family. Becky's updates are so inspiring and are just plain fun to read! Please go and pray for them at this extremely harrowing time.

www.caringbridge.org/nc/sarahsmith

We had a smow day today(YEAH!)which was kinda cool since before I started going to school, snow days were nothing special cause I would be doing the same things anyway! Last night, since we knew there was a big storm on the way, we all went to the library and each got about 5 big books each to keep us occupied today! BUT with every snow day comes a bigtime headache, like today, the pain scale is a 10 out of 10 and I've had to take 2 vicodin already today(urghh).

I'm also getting excited for my Birthday already too!(Febuary 10th)I'll be 15!

Sooo, Please go visit Sarah's site and pray hard for all of her family tonight!

Love, Sammi

Well Sam has been to school all week except for 2 hours on Tues, when she felt really cruddy. I think she got a bit dehydrated, we're playing with her desmo dose again, trying to get her to only have to take it twice a day instead of 3-4, with one usually in the middle of the night. But today she did well, and seems a lot happier. I took 4 hours off tomorrow because she wanted me to take her to school. Her dad did awesome today. So I am using my last 4 hours of vacation until May. She starts physical therapy on Monday and the psychologist called today to do her intake interview so we're well on our way to wellness for Sammi.

I'll try and take a picture of her tomorrow, if she'll let me. Love, Ellen and Sammi

Monday, January 28, 2008 10:22 AM CST

Well, Saturday night was a lot of fun. We went to the Red Wings alumni game, a fundraiser for Zoe's foundation. Zoe just gets cuter everytime we see her. The first time we met her was at her 2nd birthday party, she wouldn't even look at us but now she gives us noogies and willingly hugs and kisses Sam and even me. Sam went out on the ice with the other children and enjoyed it a lot. Then we watched the game with Kristina and her friend. Then we went to the dinner, and met Juri Fischer a Red Wing who had to stop playing due to a heart condition, where he actually died during a game and was brought back to life by personnel at the game. As you can imagine, this has changed his life. He spoke very eloquently and emotionally about the changes. I hope he can play hockey again someday, it would be horrible to have such skill at something and to have it taken away like that. But I'm sure he appreciates the things he's learned since this happened. I know that I really appreciate the blessings we've received since Sam got sick. Here are some pictures...

So Sam is at school right now. It was pretty brutal. She was up all night with headache and anxiety about school. Unless she finds someone to eat with in the cafeteria, she's going to eat in the social workers office. I felt like such a (excuse my french) bitch but she had to go to school today. She wanted to wait til tomorrow. We just can't put it off anymore. She's going to start physical therapy next Monday for 4 weeks and see if that helps. Ok, I'm going to take a nap. I'm wiped out. Ellen

Friday, January 25, 2008 9:12 PM CST

Sam seems to be ok today, a little nervous about school and after 3 phone calls I got her schedule arranged. The new law in Michigan says kids in high school have to take 4 years of math. So they had her scheduled to have Geometry 5th hour. Now keep in mind, that she has missed the last 2 years of math and the 1st semester of Geometry. What could possibly be gained by having her sit in the 2nd semester of a class she didn't attend 1st semester. So I called the head of special education and she said it was silly and that she'd call the principal and no Geometry for Sam. So I called the social worker and she said they had already switched her classes. She's taking English, Geography, Chorus and Science. So I think we're all set. All we have to do is get her there. She will be there.

Tomorrow we are going to the 2nd annual Zoe Bergen Childhood Cancer Foundation Red Wings Alumni game. Whew that's a mouthful. We can't wait to see Zoe and all our friends who will stand with Sam in the middle of the ice and be cheered for and recognized as the survivors they are. I'll be sure to post pictures tomorrow. Zoe is too cute to keep to ourselves.

Wednesday, January 23, 2008 6:47 PM CST

Well, Sam has just been having a rough few days. She woke up at 3am last night, having a horrible headache. I took her to her pain specialist appointment and they did some relaxation technique stuff. Then we stopped at Childrens on our way back because her head was hurting. So they x-rayed her (in the ortho clinic because the regular x-ray machine was down) only about 6 times...Her shunt is set at 200 which is the highest setting. Dr Sood was there to look at her x-ray apparently and said everything looked good so we're going to see him in a month and see how she is. We're going to consider another MRI to rule out recurrance and just touch base with him. We see the pain specialist again in 2 weeks. We're waiting for a call from psychology and I'm going to talk to our PCP next Monday about physical therapy for her back. And she's going to school on Monday, come hell or high water. We're just going to do it and see how it goes. It's just more of the same...nothing. No ones fault. I have a couple of theories which are just based on my miniscule knowledge of this stuff. She had meningitis. It irritated her meninges. She stopped reabsorbing fluid like normal so she got the shunt. But I think it also left her EXTREMELY susceptible to any changes anywhere in the CS system and she gets headaches from the minor dehydration that can happen a couple of times a day from the DI. She gets headaches from the weather. And a 40 point jump in her shunt setting sets her off the deep end. There's really nothing we can do about the first 2 and hopefully the last one won't happen very often (as long as her valve doesn't mysteriously reset itself again). So I'm not sure what the solution is. No one is. That's the problem. I have to say that everyone we deal with at Childrens (except the one lady who works in food service that I had problems with a few years ago and even she is nicer now (I wonder if she remembers me))is so nice and caring and interested in Sam. We couldn't ask for better care. I love Children's Hospital of Michigan. So do Sam and Alec.

Saturday, January 19, 2008 7:46 PM CST

Last night was great!! We went and picked up Simonne and then met Nikolaas and Veronica at the Palace of Auburn Hills!!! Sam got to go on the court at halftime and they said a lot of nice things about her. She actually looked nervous this time. Everyone was clapping and cheering. It was great!! Thanks to the Pistons for nominating her, the community department at the Pistons for putting it together, Rosemary at Childrens for helping with the planning, Nikolaas and Veronica for meeting us there and bringing Sam a beautiful bouquet of flowers and for putting up with my temporary madness!! And a special thanks to Alec for being such a caring, understanding little brother who feels left out so often but really isn't!!!

Enjoy the slide show, we had fun putting it together.

Sam's head hurts really bad tonight.

Wednesday, January 16, 2008 7:35 PM CST

Sam's head is still killing her. It can take a couple of days for the brain to adjust to the new pressure so if she's not feeling better by Friday am, I'll call downtown. She had her pain appointment today. They want her to start exercising (ballet or physical therapy), they want her to start therapy (I called today) and they want to see her back next week. I don't think Sam was very happy with the answers she got. I know she was hoping for something to help her but they told her what everyone has been telling her. How do you get past the fact that she feels like crap 24 hours a day? I understand what they're saying but I also understand she doesn't feel good. They told her she needs to start school again (plan is for January 28). I guess she's going to have to bite the bullet and go back no matter how she feels. Saying that and getting her to go to school are 2 very different things.

So as usual, nothing new. We're going to make an appointment with Dr Sood to talk about her shunt and another MRI. Psychology, physical therapy....blah....I only have 2 weekdays off a week and every other Friday. How am I supposed to fit all this in??? One appointment at a time, just like we always do!!!

Tuesday, January 15, 2008 11:00 AM CST

First the bad news......Our friend Neal Jr is in the hospital with pneumonia. We know him from Camp Sunshine and he has the most awesome family. Please pray for them!!!

Sam's headaches have been really bad this week. We're waiting for Neurosurgery to call back. She says the vicodin isn't touching them so I have a call in to see if there's anything they can do. Her teacher is supposed to come over tonight. OY!! I can tell by looking at her face that she feels really cruddy.

Friday night Sam is being honored by the Detroit Pistons. Apparently someone there saw the article about her in the Children's Hospital magazine and they want to make her a Detroit Pistons-American Red Cross Michigan hero. This will take place on Friday, January 18. They are playing the Sacramento Kings. We are going to pick up Simonne and take her with us!!! And Nik and his girlfriend might go also. This gives her something to look forward to.

It should be lots of fun and it doesn't hurt that the Pistons are awesome this year!!!

****UPDATE**** We're on our way downtown, they said if vicodin isn't touching the headache, she needs to be seen. So here we go!! UGH

******They found out her valve had gone down from 190-160 so they re-adjusted her back up to 190, which is kind of a big jump but that's just the way it turned out. I took her to Chris' tonight since she has her pain appointment tomorrow....We're going to make an appointment with Dr Sood to talk about another MRI, to make sure what they saw last time was just remnant on the MRI.

Wednesday, January 9, 2008 9:26 AM CST

Well shoot, Sam's last journal entry got passed around like a baby at Christmas and lots of people started thinking about priorities. Let's see...kids lives.....digital tv... ridiculous.

Sam's headaches have been worse this week. Not sure if it's the weather (it was 66 degrees on Monday and 61 yesterday) or if it's just headaches getting worse. Today she's going to meet with the social worker at school at noon. And hopefully she'll be back in school in about 3 weeks.

We went to dinner with Nikolaas and his girlfriend, Veronica on Sunday night. I need to figure out something for the red eyes that are in every picture I take. It was really fun and nice to see them. Nik, I miss you!!! Sorry, ok. It's so weird having kids that are older and on their own. But they're doing well so I'm proud of them and myself for that matter...

****UPDATE Sam didn't go to school, her head is killing her. Doesn't she look beautiful in the picture of her Nik, Alec and Veronica?? Gorgeous.

Thursday, January 3, 2008-Happy New Year

The last few days have been really bad for me...yes, you just read "me", this Sammi writing...it's been awhile. Even sitting at the computer makes my neck hurt A LOT and I just got an electric heating pad because on Christmas Day my neck started to bother me a lot. Luckily, all that time in the hospital makes a person resourceful....mom learned to make hot packs by putting wet towels in a plastic bag then microwave it for about 1 minute. That's your tip for Surviving A Pediatric Hospital for today. Anyway...I've got a pain specialist appointment later this month...that's the rescheduled appointment from the one in December I had to miss. And on January 28th, I'm going to attempt to attend half-days at school. I guess it all depends on how well the Pain Specialist goes.

Soooo, 2008. I really hope it's a little better than 2007...not just for me. For every baby, kid, and teenager diagnosed with a brain tumor. They suck, I've said it before and I'm saying it again! Even if it's benign...it isn't possible for it to just vacate someones brain easily...in almost all cases, there's going to be some kind of lifelong side-effects. A lot of kids I know have lived with their brain tumor for years because there is so much risk in taking them out. And unless something is done, they will never be able to be taken out. We need better treatments, and more cures! We need treatments that cure everyone that gets a brain tumor. This year, will the fundings for research be cut even more or will we find a cure? I've begun seeing commercials saying that by the year 2009, there will be a new law saying that every TV in the country has to be digital...HELLO?? How can people be worrying about digital TV's when kids are dying and suffering from a disease that doesn't have enough research going into it? I haven't seen any laws saying that by 2009 it will be unlawful for a teenager to die before her first kiss or for a baby to have to learn to crawl two, or three time over!

This week another friend from Camp Sunshine died, Gregory Skalaban. He doesn't have a website but please pray for his family and friends...there are so many people that are grieving for him.

Closing with a video also demonstrating how crucial the year 2008 will be for a lot of kids this year.

Tuesday, January 1, 2008 1:54 PM CST

This is Caitlin behind the desk at Grand Lux Cafe, the awesome restaurant she works at in Chicago. Gosh, I miss her. She's so funny and annoying and beautiful and smart. Oh and the biggest thing, brave. Moving to Chicago on her own when she's 18?? Sheesh...But I don't blame her. If I had known how cool Chicago was when I was 18, who knows???? She looks annoyed because I came back into the restaurant to take her picture. Ha...mom wins again!!

Sam is still at Ruthies and Alec is coming home to Chris' tonight. I've had the flu since yesterday so they are quarantined from my house. I have to work tomorrow and Thursday anyway. Tomorrow til 11pm. Sam had a pretty bad headache last night but we did have a cold front, snow, and wind come thru so I'm sure that's why. They called me last night and sounded like they were having a ball, so I didn't care that they weren't with me. It's not too often that I hear them laughing like that so I think it's great they can go there, and have a great time with their cousins.

Ok, I'm going to go lay down, try and get rid of my "flu hangover" and hope that I feel better tomorrow.

HAPPY NEW YEAR ALL!!!

Tuesday, January 1, 2008 1:54 PM CST

This is Caitlin behind the desk at Grand Lux Cafe, the awesome restaurant she works at in Chicago. Gosh, I miss her. She's so funny and annoying and beautiful and smart. Oh and the biggest thing, brave. Moving to Chicago on her own when she's 18?? Sheesh...But I don't blame her. If I had known how cool Chicago was when I was 18, who knows????

Sam is still at Ruthies and Alec is coming home to Chris' tonight. I've had the flu since yesterday so they are quarantined from my house. I have to work tomorrow and Thursday anyway. Tomorrow til 11pm. Sam had a pretty bad headache last night but we did have a cold front, snow, and wind come thru so I'm sure that's why. They called me last night and sounded like they were having a ball, so I didn't care that they weren't with me. It's not too often that I hear them laughing like that so I think it's great they can go there, and have a great time with their cousins.

Ok, I'm going to go lay down, try and get rid of my "flu hangover" and hope that I feel better tomorrow.

HAPPY NEW YEAR ALL!!!

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