Please read updates on Lauren's progress below.

March 13, 2008:  Lauren had a difficult day today.  She is just not herself at all and it is hard to see her this way.  She wasn't able to eat much of anything today, and vomited the little bit she did manage to take in.  She was talking to Gracie on the phone, then all of the sudden dropped the receiver ,  and said "uh oh".  I managed to whip the laptop off her lap, replace it with the bucket and it all worked out, but the whole time we could hear Gracie saying, "Lauren?  Lauren?"  Why is that funny? - I don't know, but it was.  The funnier part is that just before she vomited she was watching You Tube videos of roller coaster rides.  She wondered if the videos caused the vomiting.

I got her up once earlier in the morning, but she has been in bed all day since.  I tried some foot rubs, funny family stories and Mad Libs on the computer (I got some giggles out of her when I allowed the use of 'bad language' for the fill ins - crap was as bad as it got, but fart was used profusely).  I just gave her a sponge bath and washed her hair with the no rinse shampoo - she said it made her feel better.

She is the third neurosurgery case of the day Friday.  they will probably take her down to the OR sometime in the afternoon, so we won't know anything until erly evening.  No word on pathology yet.  Thank you so much for all of the prayers.  I will update when I can tomorrow night, but the computer connection is very slow right now.   

3/12/08:  Good news and bad news today.  I will get the bad over with first.  We  met with the neurosurgeon a little while ago, and he showed us the post op MRI from today.  There is a piece of tumor that remained behind, hidden inside the dura of the spinal cord.  She is going to go back into surgery on Friday and hopefully the end result will be good.  All of the same worries are attached to this surgery, and they won’t know until they get in there what the situation is as far as how many nerves are involved.  Still waiting on the pathology.   

The good is that Lauren is doing great today.  She got up and walked to the bathroom – it took a while, but she made it. This is a really good sign that she doesn’t have nerve damage to her bowel/bladder and legs.  She was so happy to get the foley out this morning.  They have been giving her oral pain meds and are going to keep her on the morphine pump, but she hasn’t used it very much this afternoon.  She is watching movies, coloring with her blendy pens and is as pleasant as can be.  She took the news of the repeat surgery so well.  She is more concerned about the post op MRI.  Being moved from bed to bed to scanner, and having to stay still for the hour long scan was very uncomfortable.  She asked that for the next one, they just sedate her so she doesn’t have to relive that again.  

So, I guess we are still on this rollercoaster ride for a while longer.  We know we have many friends who are reading this that know exactly the feeling.  There is always talk about the living in Holland story at Camp Sunshine.  Don’t get me wrong, I get it, and it is a great story that does help capture the experience to some extent, but on days like these I feel like I am somewhere else – maybe close to Holland - but much more violent and threatening – do they have windmills and tulips in Belgium? – like WWII , Battle of the Bulge Belgium? 

Thank you, thank you, thank you for all of the prayers and messages.  They are so uplifting and Lauren loves to listen to me read them to her.  Thank you to everyone for showering Gracie with love and attention.  She has been worrying about Lauren so much.

3/11/08: 5:25 pm:  Lauren is doing really well.  She is in ICU, and is comfortable.  She just woke up a little while ago, and is watching Ratatouille.  She has a morphine pump that she is controlling, and she is getting ready to order every single item on the menu that contains cheese.  I don't know what she will eat, but at least the desire is there.

Dr. Sutton was able to remove the tumor and thankfully it was growing off only one lumbar nerve root.  He removed the nerve root, along with the tumor, and the sacral vertebral bones.  We will have to wait to see if she has any impairment, but the doctors are optimistic that she won't have any major damage or loss of function now that the pressure from the tumor is off the other spinal nerves.  The last concern is the grade of the tumor.  The pathology will be back in three or four days.  So for now, things are about as good as they can be. 

We are blown away by all of your expressions of concern and are so thankful for all of the prayers.  Last night, before bed, I was telling Lauren how many people were praying for her and she told me that she knew it because she could feel all of the prayers and good thoughts.  She was so calm and relaxed this morning before they took her into the OR.  I can't say that John and I were exactly calm, but we definitely feel your prayers too, and are so grateful for all the wonderful support. 

Lauren is going to have an MRI tomorrow night - I'll try to update then.  Love, Marianne

3/7/08: We had a really long day yesterday.  John was complaining to Lauren that we saw seven different 'ologists', and Lauren looked at him and said. " Dad, you just have to deal with it".

Lauren is going to have surgery on Tuesday at CHOP to try and remove the large tumor on her spinal cord.  Everyone agreed that it was a 'no brainer' (hows that for irony!).  The neurosurgeon went over the different possible scenarios, and we are praying that he will find the best possible one when he gets in there, removes some bone and sees exactly what is involved.  The problem is that the tumor is so large, he can't tell by the MRI if the tumor is arising from a single nerve root, or if it is a tangled mess of nerve and tumor.  If all goes well, she will be in ICU for a couple of days, and then depending on how she is feeling, will probably be home a few days after that. 

We are going to try and find some fun things to do this weekend to distract ourselves - I don't know what yet.  Please keep her in your prayers next week. I'll try to post after the surgery to give an update.  Thank you to everyone for the nice notes and emails - they really lift us up.

Happy freakin birthday Ampr!!  and happy 1st birthday cousin Nathan on Sunday.  We love you! 

3/2/08 actresses at the Museum of Natural History

2/27/08:  I am very sad to write that Lauren's spinal MRI showed that she has a large tumor on her spinal nerve roots.  This explains the discomfort she has been experiencing off and on.  We will be going down to Philly next week to go over the films with her doctors and discuss treament options.  Her neuro-oncologist has already reviewed the scans with the neuro-surgeon, so we will be meeting with him as well.  She will also have endocrine and neuro -ophth appointments, so it will be quite a day, I'm sure.   This is heart breaking news, to say the least.  She had a few questions for me, but was very accepting of the news and reassured me that she would be fine.  She even told me to "look on the bright side"... she probably would be able to keep her port a while longer AND get anesthesia again!  Whoo hoo!  Nothing like being led by your 11 year old.   Please keep her in your prayers and pray that we will have the good guidance and wisdom of her doctors to make the best decisions for her.

2/19/08:  WOOF!!  Lauren had a glorious 11th birthday with a party that lasted 4 days and spanned three states.  We celebrated in VT with lots of food, skiing, sledding, tubing, swimming, snow mobiling and fun.  Did I mention the food? You would think we were hording supplies to last the entire winter - seriously, the stuff was so packed and wedged into the fridge that one couldn't even pull the stuff out to eat it!  We did manage to pry some goodies out and ate our dog cookies and dog bone cake out of dog bowls, wore our dog collars and noses and I even heard some dogs snoring in the night.  All of the crazies represented his/her dog breed in true form - can you guess who the Blood Hound and three-legged Grey Hound were?  Lauren was so happy and enjoyed being with family as she always does.  Every birthday, every day, is precious and a reason to celebrate.  As our friends the Murphys say "live in the moment, play in the moment".   

Today it was back to school and reality, which was good  too.  Last week was so crazy with early dismissal, a snow day and a half day that we feel like we have been away for longer than the long weekend.  Lauren has an MRI again on Friday - this time of her spine.   She is looking forward to being able to listen to music or even watch a movie in this scanner since they will not have to re do the scan of her brain she had done 2 weeks ago.  She has not been complaining of the leg pain she had in the fall, so I am hopeful that all will be ok. 

Plans for the camp are in full swing, so save June 1st and register early.  We already have a record number of registrations for this early in the year. 

Thank you as always for keeping Lauren in your prayers.  Enjoy the photos of the puppies!

2/6/08: Lauren's appointment went well yesterday.  Her tumors appear to be stable and so does the demyelination of her cerebrum.  We are going to hold off on adding another drug for nerve pain and proceed with the spinal MRI soon.  We broached the subject of removing her port and she was NOT happy about that at all. 

Her chart was audited by the Pediatric Brain Tumor Consortium last month, so all of her scans and reports were reviewed in Boston by a team of pediatric brain tumor researchers.  They did some detailed 3-D measurements of her tumors and found that over the course of her treatment on the Phase I study of Lenalidomide, not only had the contrast enhancement disappear, but her tumor had actually decreased in volume by 33%, which is a much more dramatic response than what we had originally thought.  So far, she is the only child who had demyelination.  Hopefully they will be moving on to a Phase II study of the drug soon so more children have potential to benefit from it.

It was a really long day, and she was "starving" on the car ride home last night, so we stopped in for a quick bite to eat at one of her favorite places.  She likes to sit up at the bar where you can watch the cooks in action, and since it was so late, she had a big choice as to where she wanted to sit.  She chose to perch herself right in front of the dessert makers.  By the time she had finished her meal, she had somehow charmed the cooks into insisting that she eat a free sundae and take home box of cannolis for the next day!  

Thanks for all of the prayers and good thoughts.       

2/1/08:  Happy February!  It is off to a good start according to the Loose girls since we received the call this morning telling us school was cancelled due to the icy roads.  It is amazing how awake the girls were once they realized they were off for the day.  I wish I knew it last night when Lauren and I were sitting at the kitchen table for three hours doing homework.  We plan to enjoy the day relaxing, catching up on some studying, making some birthday party treats (Lauren reminded me that there are only 14 days left until the big day) and maybe watching a movie.  Lauren made a deal with me that if she got 100 on her science test, she would get to rent Braveheart.  I knew when I saw her big smile through the bus window the other afternoon that I would be making a trip to the rental store.  I can't remember very much about the movie except the blood and guts - I'll have to hold the clicker in my hand to edit as we watch. 

Tomorrow is Lauren's MRI in Philly.  She is having the scan of her brain and orbits tomorrow and we will have to go back down another date to have her spine done since noone could manage to get it scheduled together (don't even get me started).  We will go back again on Tuesday to get results and see her neuro-oncologist for a check up, blood work and port flush.  She seems really great, so I am hoping that the scan confirms what we are seeing on the outside. 

It is hard to believe that Wednesday will be the 9 year anniversary of her brain tumor diagnosis. Nine years is a long time, and although there are days when I feel so tired of all of it, I remind myself of what a blessing it is that she is here with us, smiling and happy despite all that she has to deal with.  I wish I could bottle up her love and enthusiasm for life and turn it into a little pill.  Then again, all one has to do is spend a little time with her, and you feel like someone gave you a shot of "happy". 

Please keep Lauren in your prayers tomorrow as she has her MRI.  Please remember our friends Joe, Mrs. M, Mrs. S, Coach Chris & his family and our Camp Sunshine family in your prayers as well.      

1/17/08:  '08 is off to a fast start and I'm already delinquent in updating.   The good news is that "no news is good news"!  Lauren is feeling great, and her counts have been good.  Tomorrow we are going to Philly for her neuro-psychological testing.  Basically it is a full day of all types of reasoning, logic and learning tasks to help identify her areas of difficulty.  It has been 1 1/2 years since she was last tested so it will be interesting to see if the tools we have been using to help her work around her learning disabilities have made an impact on her performance.  She is up for the challenge, thankfully.

The girls are back into the swing of school.  They were counting on a snow day, or at least a delayed opening on Monday, but no such luck.  If the weatherman was anywhere near our house on Monday morning, he would have been afraid for his life!  We could hear cousin Mikey venting his disappointment all the way from Long Island. 

Lauren is gearing up for her birthday in Feb. Every year she decides on some elaborate theme - this year it is "DOGS", yes, I said dogs.  You would think I was getting off the hook easy with that one, right?  Think again.  We are all going to head up to VT for a glorious weekend of dogs!  Each person is going to represent their own breed based on his or her human appearance and disposition.  The exception is going to be John, who wants to pretend to be Michael Vick and host a few rounds of dog fighting.  Don't worry, the kids have no idea who Michael Vick is.   Grace and I are going to get started on some "props" tomorrow at the hospital while we are waiting for Lauren.

We already have players registered for the football camp in June.  This year, we are hoping to reach the half million dollar mark.  John has been working on plans for our first LFG camp in Florida, and it looks like it might be a go for this June. I'll keep you posted.  

Thank you for your continued prayers for Lauren.  Please keep our friends Joe and Mrs. M in your prayers as well.

12/31/07: Happy New Year!!  We are celebrating the New Year at home in our pjs, and I seriously doubt I will make it to mid night.  Like good old JB says, these days I'm up about the time I used to go to bed. 

We had a terrific Christmas, traveling to see family on LI and in upstate NY.  The girls enjoyed spending time with family - grandparents, aunts, uncles, cousins and friends who have become part of our extended family.  It was great, and we are so thankful for the blessing of a wonderful, loving, supportive family. 

Lauren is feeling and looking great.  She enjoyed all of her gifts, especially the many cookbooks she received.  Gracie was thrilled with her i-dog purse and Designer's World game. They have been having so much fun together, playing with their new things.  Grace is STILL sleeping in Lauren's room - I think it has been at least three weeks now.  School starts up on Wednesday, so I will try to get her out by then.       

John went to the Eagles/Bills game yesterday to see Blake play.  He was great on special teams, making several tackles - I heard "Costanzo" announced more than once.  Keep it going Blake - you are doing great!!

I updated the funding summmary on the website to include all of our grants to date.  We are especially excited about the grant to the Dana Farber Cancer Institute in Boston in support of the new research program on low grade gliomas.

I deleted most of the photos from this page because I was told it is taking the page forever to load.  This web site is due for a professional overhaul which should be happening soon.  I am at the limit of my web design skills, and am so thankful to a wonderful volunteer who is redesigning things for me. The photos will be back when the new site it up. 

Wishing everyone a healthy, happy New Year.  

Lauren snuggling with baby cousin Nathan

12/22/07:  Just a quick update to let you know that  Lauren's eye exam was stable - yippee!  The two of us had an uneventful ride down and back to Philly, and got to stop at her favorite place for dinner on the way home.  Her counts were terrific yesterday, so we are feeling really thankful and blessed to celebrate the holidays with the gift of Lauren feeling so well.   

Lauren had her orchestra concert this week at school.  She was so proud, and John, Grace and I were blown away at how good they sounded.  She sits in the first seat to make it easier to get in and out among all the instruments, stands and chairs, so we had full view as she was on the stage.  As they were setting up, Lauren was arranging her music sheets, and the entire pile fell all over the floor. (the large print doesn't really fit on the stand).  She calmly gathered it all up and rearranged it all, while the three of us were having heart attacks when we saw that one piece was still laying about 5 feet from her on the floor.  Her band instructor saw it when she walked on the stage, handed it to Lauren and all was fine.  When she got in the car after the concert, she said "I feel like a million bucks!".

We are ready for Christmas.  I love getting all the photo cards from friends and family, looking in amazement at how much the children have grown, and reading about the news from the year.  In coaching, families move A LOT - I have many scribbles in my address book, some names with more than others.  I still have a few cards sitting here waiting to be addressed - I just don't know where to send them!  

Wishing you all a wonderful holiday and health and happiness in the new year.  Please keep our friends Kassidy, Greg, and Will in your prayers as they are struggling right now.  Thank you as always for remembering Lauren in your prayers. 

12/16/07:  The girls are counting down the days until Christmas and school vacation.  Gracie made a chart and is the authority on announcing how many days remain until Christmas. The girls had their first snow day of the year on Thursday, and it has been snowing/sleeting since last night.  We went on the annual hunt for our Christmas tree last Sunday when John was home for the day from recruiting - it looks very pretty with all of the ornaments and lights.  We are really looking forward to spending time with our family and friends over the holiday break. 

This week is going to be a busy one with appointments, parties, concerts and last minute errands.  Lauren and I will head down to Philly tomorrow for her neuro-ophth. check up.  Her vision seems stable, so I am hoping for stable news from the doctor - that would be the best present I could hope for.  Despite some sniffles, she has been feeling really great these past few weeks, and her counts have been good. 

I am looking forward to seeing my first cheerleading competition on January 20th.  Carissa Roe, the cheerleading coach at Lafayette has been a volunteer with the football camp, and last year, was able to come out on the day of the camp to volunteer at registration.  She liked it so much that she was inspired to organize a cheering event to benefit Lauren's First and Goal.  I know nothing about cheering, except for memories of watching in mouth-gaping, horror as my sister Jean practiced her stomping and clapping routines in the garage when I was in Jr. high.  (I was the tom boy).  Carissa has "enlightened" me and I am very excited to see how cheerleading has changed since the 80's!  We are still in need of a few more volunteers to help on the day of the event.  If you are interested, please e-mail me at firstandgoal@rcn.com.  Please spread the word about the event.     

I will update on Lauren's apointment before the holiday.  Stay calm people!  As Dr. Straub would say.... " Relax.... release...... be still....... let go......... FOCUS!!!"  (you'd have to be a Bomber to get the true meaning of that one).

Lauren and Brenner,           J-E-T-S! Poor James - being set up for a lifetime of disappointment

11/27/07:  Back to reality after a nice, long, fun holiday weekend.  We spent Thanksgiving day with a big  family feast, then drove up to Ampr & Uncle's ski house in Vermont for the rest of the weekend with the boys.  The girls tried their hands at candlestick bowling, went swimming several times, saw a fireworks show, greeted Santa, went out to eat, set up a Christmas tree, went shopping ... and went to bed exhausted each night.  Between the icy cold air, fake snow and Uncle playing all of his Christmas music, it really felt like the holiday season had arrived.  Gracie went skiing for the first time ever and loved it.  Lauren and I hung out with baby James while the rest of the crew was out on the slopes.  She read him two chapter books, which he seemed to enjoy very much.  Maybe he just liked the sound of someone talking to him instead of the constant stream of voices calling him "Fats, Prince Pondacherry or Fatty McGee" - the poor kid is going to have a complex if we don't all stop it.  Besides, fat actually looks good on him.  Mikey decided he was going to buy everyone gifts with the $6 he had crumbled up in his sweaty little hand - not an easy thing for a 5 year old to do.  He was so cute picking out what he wanted to get everyone - pop guns, bows and arrows for Grace and Thomas and hand lotion for Lauren.  Lauren complimented him on his kindness and generosity and told him that "when you do something nice for someone else, it comes back to you double".  I think she is right about that.

Lauren had an oncology check up and port flush on Monday and her counts were great again.  She is still bothered with the leg pain off and on, but is doing her best to get on with her busy days despite it.  Physical therapy, Braille and viola are going well, and she is getting faster on the keyboard.  We will be going to Philly in two weeks for an eye exam, followed by an endocrine work up.

Hope you all had a great holiday.  Stay calm people....there is still plenty of time until Christmas - that's what I keep telling myself.    Thank you for keeping Lauren in your prayers.  

Lauren and Chubster, uh, sorry Jamesy                                                          oohh...ahhhhh...watching the torch light parade and fireworks

Taking a dip

 11/19/07:  Are you ready for Thanksgiving?  I'm not, but by Thursday morning, I plan to be. 

We've had some busy days lately, with many things to celebrate and be thankful for.  The girls both earned awesome report cards last week.  Lauren made the 5th grade Honor Roll which was really something to celebrate.  All of her IEP accomodations, the help of her caring teachers and hard work have paid off and allowed her to experience success this quarter.  She really deserves it.  Gracie is doing very well in 2nd grade and is enjoying her class and terrific teacher.   

Lafayette won the last two games of the season, and enjoyed a great win over Lehigh on Saturday.  Football season is OVER! (....recruiting starts Monday - jeez).  John was so proud of his players who hung in there and overcame a lot of adversity to finish out the season on such a high note.  Lafayette finished up the season with the number one ranked defense in the country!  That is something that the boys should be proud of!  We used a gift certificate we had been saving for such an occasion, and went out to dinner to celebrate.  It snowed all day yesterday and still is this morning.  It is the kind of snow I love - pretty, light flakes that only stick to the grass and trees, but don't require me to shovel the driveway.  John took the girls bowling,  we hung out and lit a fire, watched some movies, made cookies and just relaxed - it was great! 

Lauren is feeling good, despite having pain off and on with some of her neurofibromas.  Her reflexology is helping somewhat, as are soaks in the tub.  She and Gracie are looking forward to Thanksgiving and spending time with their cousins as well as having a few days off from school.  Here in Easton, Thanksgiving means the Easton-Phillipsburg HS football game.  I've never seen anything like it - literally thousands of people decending on College Hill on Thanksgiving morning, which is preeeded by all kinds of fun traditions in the days leading up to the big game.  Gracie's class is even having a tailgating party on Wednesday!  

Thinking and praying for all of our Camp Sunshine family, especially those who are facing such difficult situations right now, and wishing you all a wonderful and peaceful Thanksgiving.          

11/7/07:  OK, now I am starting to feel a little tired.  All this partying is wearing me out!  Lauren and Grace are still rearing to go.  We spent a great weekend on LI to celebrate baby James' Baptism.  Ampr squeezed his cute and portly body into the christening outfit that Thomas and Mikey wore at their Baptisms, and he looked so cute and angelic.  He has the disposition to match.  After the Baptism, Ampr and Uncle had a party that has been described by Gracie as "the best Baptism I have ever been to!".  There was a clown, arts and crafts, magic show, balloon animals and sword fighting on the dance floor - who could ask for more!  We got to visit with cousins, aunts, uncles and friends while celebrating a wonderful day in James' life.  To top it all off, I made it through Long Island, across the bridges, Staten Island, NJ and back to PA Sunday night without even a slow down - miracle!   

Football season is winding down with two more big road games to go.  John has been working hard to have his players prepared and motivated for the home stretch.  I am looking forward to a nice, quiet weekend at home for a change. Lauren has plans to try out some new recipes while Gracie attends a friend's party, then we are going to light a fire, snuggle up under a blanket and watch some movies that she has been wanting to rent.  Her leg continues to give her pain off and on, but otherwise she is feeling good. 

Grace had a terrific Halloween birthday.  Lauren got her Grease, the soundtrack and movie.  It is so funny to hear them singing all of the songs and getting so into it - I was ten when it came out and everyone on the block had that album - of course it was a vinyl record then (Mom, what's a record?). 

Look for upcoming info and registration materials on our first annual cheering competition to be held in January at Lafayette.  The Lafayette Cheering squad is working hard on the final details and will announce the event very soon. 

Thanks for the continued prayers for Lauren.

God Bless Baby James, 11/5/07

10/31/07: Halloween freaks - enjoy!

10/30/07:  I'm trying to keep up with everything, but it seems like the days are flying by too fast.  Tomorrow is not only Halloween, but Gracie's 8th birthday.  I told her she wasn't allowed to turn eight, but she is not listening.  We were talking about her wish list for her birthday and how a cell phone is just not in the realm of reality.  I unintentionally set myself up by saying something like, "..we didn't even have cell phones when I was a kid", and she quipped back with "Mom, you didn't even have cars back then".  Nice.

We had a fun weekend attending my cousin's wedding in Albany.  We met up with family at the same hotel, and all the cousins had a fantastic time running around the lobby, dancing and swimming in the hotel pool.  Lauren and Grace were the first ones up on Sunday morning and were swimming in the pool by 7:45 am.  Something about a pool in a hotel makes everyone happy. 

Lauren has been working so hard and is winding up the first marking period. Her goal was to get all A's and B's, and if she does well on her tests today, she will reach it.   I often feel guilty that she spends every weekday afternoon at some kind of therapy or Dr.'s appointment, then comes home and works on her school work until it is time for bed.  She even listens to her text books on cd on the car rides to her appointments.  She rarely complains about it, and takes a lot of pride in her work.   I have received an excellent 5th grade education this quarter; I can recite all definitions concerning Native American culture, the explorers, matter & energy, and enjoyed nice refreshers on Satchel Paige, Island of the Blue Dolphins and Thunder Rose.  The weekdays fly by, and we try our best to pack in a lot of fun and stretch out the weekends.

Lauren's counts were great on Friday - the best they have been in years - literally years.  She continues to have pain in the areas of her neurofibromas, which is frustrating because there is nothing we can do to give her relief.  If it continues much longer we will be going in for a MRI to make sure that there is no hidden tumor responsible for her pain.  Her weekly reflexology seems to help a little bit, and this week Beth threw in a hot rock massage which she loved.  

Have a great Halloween!!  Thank you for keeping Lauren in your prayers.

                                                   Wedding Crashers (no, we did not give these children any alcohol!)      

                                        My super fat boyfriend, Jamesy - doesn't he look like he's in love?

10/17/07:  We had a very fun weekend, with many overnight guests and lots of laughter and surprises.  Gracie's birthday is actually not until the 31st, but because of everyone's demanding social schedules (don't ask me why they are all so popular), we celebrated early and made our annual trek to Dorney Park a little early this year.  This year's theme was "Native American", so everyone received a special Native American name and head dress to wear.  Some of the favorite names assigned were, "Nervous Meercat", "Tripping Dog" and "Grouchy Bald Eage" - can you guess who was who?  The best surprise was that Aunt Holly and Uncle Frankie had a special head dress, "Coming in April", that will be worn by the new baby when he or she arrives in the spring!  Exciting!

It was a beautiful, mild day for Dorney.  We arrived when the gates opened, rode every ride, and left when they kicked us out.  Everyone was happy and exhausted.  Lauren was feeling great and enjoyed going on every ride she could get on.  She has no fear, and a stomach of steel.  I don't know how she can ride all of those twirling, twisting, spinning things.  She is already planning for next time. 

Lauren is over her cough and cold, and although her platelets dropped a bit, she is doing very well.  We are all using so much hand sanitizer that I think my skin might just burn off.  She will be back at clinic next week for blood work and a port flush. 

Below are some photos from the weekend- enjoy!  Thank you for continuing to keep Lauren in your prayers.   

James (Smiling Piglet)                              Hannah (Bossing Tazmanian Devil) & Grace (Jumping Squirrel)

Who looks the most scared here?

10/7/07:  Things have been a little crazier than ususal this week. Lauren woke up not quite herself on Monday, and we spent some time in the hospital dealing with a fever.  Since she still has her port, a fever requires that she receive IV antiobiotics asap just in case the cause of the fever is bacterial.  Thankfully, her blood cultures were negative, so it must be  viral thing.  We are laying low this weekend, hoping to speed up her recovery.  She did want to go to Lafayette's game last night, and after spending a few hours napping during the afternoon, was feeling well enough to enjoy it.  I think the funnel cake, cotton candy and moon bounce were too strong of an attraction to keep her away.  Oh yes.... and the football game, which has turned into an aside......Lafayette won.

We are gearing up for our annual Dorney Park Halloweekend/Gracie's Birthday weekend with cousins, aunts and uncles next week.  The girls are looking forward to pushing Uncle Frankie into the Haunted House and listening to him scream.  Lauren is going to stuff her sneakers with tissues in an attempt to make herself the inch taller she needs to be to ride the Talon rollercoaster.  I am going to take some motion sickness pills and wear my seabands to try and ward off the nausea I feel when I watch them on the spinning rides.  It is always a fun day - the kind where your face hurts from smiling too much and your abs are sore from laughing so hard. 

Today was like another summer day - shorts and sandals in October - I am loving it!  Brenner was over for some TLC and  training this afternoon - he even let Gracie brush his teeth!  See the pic below.  The girls are off tomorrow for Columbus Day.  Lauren has refloxology in the morning and then a "hopefully quick" eye exam in the afternoon, which will help lighten the after school load for the rest of the week.  We are planning on finishing up some Halloween decorations and dressing up our pumpkins to display. 

 Thanks for all of the prayers for Lauren.  Hope everyone is enjoying the long weekend!

9/29/07:  We had another busy week.  Time seems to be flying by, and we are trying to take full advantage of all of the wonderful opportunities to enjoy it.  I have to check my appointment book each morning to make sure I am heading in the right direction, but it is all good.       

The girls had a special get together on Saturday afternoon with our Oncology friends at Sagra, an awesome cooking school here in Easton.  The children all helped to make a delicious meal of smashed potatoes, muffin tin meatloaf and peanut butter fritters under the direction of the "real" Chef Jim.  It was a lot of fun, and the kids were so excited to try their masterpieces - yum!  We then went to Lafayette's game vs. Princeton, which was lots of fun despite the loss.  Last night was the 4th annual oncology clinic Talent Show.  This year, instead of being held at the hospital, it was held at a local church's  theater, complete with a real stage, curtain, light and sound system.  I lost count of how many acts performed, but it was certainly entertaining, especially the performance by the clinic staff.  Dr. Phil and Dr. Leslie led the cast of superheros as Super Man and Wonder Woman.  Lauren and Gracie didn't even know that it was social worker Nancy underneath the Incredible Hulk suit - too funny!  Lauren and Gracie's act won the "Most Enthusiastic" award.  They were thrilled.

Lauren has been feeling great, and her counts were good this week. They are both enjoying school, and doing well.  Lauren is working very hard both at school and in her therapies.  Grace claims to be the new Dog Whisperer (watch out Ceasar Milan!), teaching Brennar to sit, stay and lay down.   She still working on "don't jump up!". 

Thank you for continuing to keep Lauren in your prayers. 

              Cooking away                                                                            Are we watching the game or fooling around?

                        Talent show awards                                                                Swimming in late September w/Brennar

9/18/07: We have had a pretty eventful few days.  Lauren had her endocrinology and neuro-ophth. exams and tests, and things are fairly stable.  She has one more set of endocrine tests this afternoon, but it looks like she will continue with the Lupron and Arimidex for another 6 months.  She grew 1 cm over the past 8 months, which we know is well below what she should be doing, but it was something, so her doctor would like to try and hold off for another 6 months before stopping the Lupron in hopes that she may gain another cm or so in height. That is fine with me.  Her vision was stable in the left eye which is great news. 

On Sunday, the girls rode in a side car at the Ride For Kids event run by the Pediatric Brain Tumor Foundation.  This was our 9th ride - we started going the year Lauren was diagnosed. It was a beautiful day, with so many wonderful volunteers and riders - over 300 motocycles leaving in single file makes quite a noise - I think the ground was shaking a little!  Thank you to volunteer rider Steve who took the girls for the hour long ride along side his beautiful, red BMW (they picked out his bike as their first choice to ride with- expensive taste for a 7 & 10 year old, don't you think?).  Lauren took a little nap on the way, but Grace was watching all the beautiful scenery.  After the ride, we got together with our wonderful friends from Camp Sunshine for a mini reunion.  See the photos below.

John's is doing well,and so is Lafayette.  They are 3-0 right now with a big win over Penn on Saturday night.  The girls and I were a little torn to be rooting so hard for Lafayette because we love the coaches from Penn who come and volunteer at the Camp every year.  It was definitely a nail biter, with the three of us huddled on the couch hugging each other and crossing all of our fingers and toes for the field goal at the end.  Listen people... I don't need this kind of stress in my life!!  Can't we just have a nice 30 point lead going into the final quarter?

Thanks for the messages in the guestbook and the continued prayers for Lauren.  Please check out the video link below.    

9/14/07:  A friend who is on this same journey called my attention to this powerful video addressing the need for funding for pediatric cancer research.  Please watch:  http://www.youtube.com/v/AGS4yE5v9rM"

Thanks Dennis, Olivia and Lily.

                     can you say "chrome"?                                                                             ready to roll

9/9/07:  I know it's September, but it still feels like the middle of summer around here.  The girls were swimming all day yesterday, except for coming in to check on the score of John's game that was on TV.  It is hard to get them to do homework when they can see the pool calling them from the window. 

School is going well for both girls.  Gracie is very happy, loves her teacher and classroom and started back to her Brownie troop on Friday night.  Lauren is adjusting to all of the changes at the middle school, and the extra responsibilities that go along with it.  The responsibility part is going to take a little more work and time.  She takes it all in stride, and enjoys it all. We went to open school night last week and met her team teachers - they were all very nice, and Lauren really seems to like them.  I don't think there has ever been a person Lauren has met that she didn't like. So far, so good!

Lauren has been feeling well.  In fact, I'm amazed that she has the energy she does for all of her therapies and appointments that we are always rushing to after school.  Her physical therapist can't believe it either.  She has her endocrinology appointment in Philly on Tuesday.  I'm not looking forward to hearing what the doctor is going to say because I already know that she hasn't grown, and that the Lupron is not working.  The idea is that Lupron halts precocious puberty, and therefore allows the child to continue to gain linear height.  In Lauren's case, the Lupron did the job of stopping puberty, but also stunted her linear growth.  It happens in a small percentage of patients.  Statistics stink when you are always on the undesirable side.  I hope that the arimidex she has been taking has slowed her bone maturation rate - we will find that out on Tuesday.  She can't take growth hormone because she has active tumor.  I have a feeling he is going to say stop the Lupon, let her go into puberty, and hope that she gains a few inches in height - not what I want to hear, but I am preparing myself.     

Lafayette is off to a great start - 2-0.  We enjoyed the first night game under the lights last week, with fireworks, kids rides, games and of course a funnel cake.  I didn't really get to watch much of the game, but that was fine.  John has been working all the time, but at least he has something to show for it. 

This morning the girls and I took a ride out to Angel Field, the beautiful retreat created by Linda and Doug Sheriff of Angel 34 (www.angel34.org) .  The Sheriffs showed us around the incredible property and house which will be used as a place for families of children with cancer to relax and recharge.  Look for the announcement of the open house to be held in October.  Thanks Linda and Doug!!  See the photo below.

I've already started working on plans for the next camp in June.  We are also discussing plans for a cheering competition to be held in January.  I'll keep you posted.

Thank you for your continued prayers for Lauren. 

 Doug and Linda w/Lauren and Gracie outside Angel Field

8/30/07:  "Four days down, 176 to go", that's what Gracie had to say when she got home from her first 'almost full week' of school this afternoon.  The girls were off to a good start, both very happy and excited to go back to school this week.  Lauren was a little nervous about the prospect of beginning 5th grade at the Middle School - new big school, kids, teachers, switching classes - but she seemed to be her happy self this week once she figured out that she could open her locker.  She missed the bus on the way home the first day.  I was more than a little panic stricken when everyone else had arrived home and she didn't show up, but she was fine about the whole thing.  All in all it was a good week for both of them.  

We are looking forward to Lafayette's first game on Saturday night.  We hope they will put on an exciting display for us after all the hours John and the coaches have been putting in since August. Speaking of football, Lauren wants to know why Coach Mangini doesn't put Blake Costanzo in at linebacker in the Jets' preseason games!!  

Lauren's clothes from camp showed up, including the priceless, glow in the dark, Lord of the Rings t-shirt!  Thank you Bonnie for noticing that the pajama pant leg sticking out of a garbage bag among the piles of leftover debri was Lauren's!  Apparently she had been putting all of the dirty clothes in a big bag like we had discussed.  She just forgot to take it with her when she packed up! 

Wishing everyone a wonderful holiday weekend.  Thanks for remembering Lauren in your prayers.  Please keep our little friend Elizabeth in your prayers also as she is undergoing another surgery for recurrence of her brain tumor this week.  She is only two, and has already been through so much.  

First day of school                                              Who needs the bus!?

8/21/07:  We’ve had some busy days lately.  The girls and I spent the last two in Philadelphia at the hospital for Lauren’s MRI and neuro-oncology check up.  Her tumors look the same – stable is good!  They are now calling the demyelination Leukoencephalopathy – another word I wish I never knew the definition of.  Thankfully it hasn’t changed since the last scan, and when compared to her scan in March, it looks a little less prominent.  All good news.   Her doctor was pleased with the way Lauren looks, and wants to continue with the watch and wait protocol for as long as possible.  She will be having her neuro –ophthalmology and endocrinology appointments in September. 

Ampr finally had the baby!  A healthy, beautiful, James Richard was born on Tuesday, August 14 – 9 days late!  We got to see him come home from the hospital on Thursday – it was so great to hold a newborn baby again.  We spent the weekend on LI at the beach club with James’ “big” brothers, crabbing, fishing and having fun. 

We also picked up another addition to our extended family when we helped our good friend pick up a German Shepherd puppy last Tuesday.  He is really cute, but I keep imagining him fully grown and wind up scaring myself!  My Santoro fear gene is really working against me here!   The girls love visiting with him, and I think with a little puppy school under his belt he will be a faithful and obedient friend to all of us. 

Today was Family Fun Day at the hospital.  We didn’t know it until we arrived, but it sure was a pleasant surprise.  They had a build a bear station, face painting, music, magic, snacks and a very talented caricature artist drawing pictures of the children.  Lauren wanted to be a cook, and Grace, a movie star.  It really helped to make the day go by fast. 

The girls start school on Monday.  We are sad to see the summer end, but are so thankful that Lauren was feeling well enough for us all to enjoy so many fun things together and make some wonderful memories.

Thanks for keeping Lauren in your prayers.

Gracie and James                                    Brenner and the girls

8/12/07:  Grace and I picked Lauren up from her week at Camp Can Do yesterday.  Her counselors said that she had a great time, but she was less than forthcoming with info about what she did all week.  The only thing she did say was that she had so much fun.  I'm sure it will all come out in dribs and drabs over the next week.  She spent one night in the infirmary feeling a little under the weather with the sniffles. She was totally exhausted by the time we got home - she was uncharacteristically grouchy and just layed on the couch and ordered us around.  She said she was too tired to fall asleep.  Today she is a little more pleasant, and we plan to keep things low key around here and hopefully sneek in a nap to catch up with the lost sleep.  Thank you Bonnie, Eileen, Lauren, Carrie and all of the wonderful volunteers who make the week so special for the children, and allow parents like us to relax for the week knowing that our children are in such caring and capable hands.

I brought her bags in from the car when we got home, planning to get a jump on her dirty laundry from the week.  Unfortunately, there was not one piece of clothing in her bag.  It was stuffed with all kinds of apparently more important things, but the clothes, bathing suits and towels got left out.  If anyone finds mostly pink, size 10, girly clothes in his or her bag, please let me know.  The only thing Lauren was upset about was her glow in the dark Lord of the Rings t-shirt that she loves to wear to bed.   Yeah...I know.....still working on her organizational and self care skills... 

Grace and I had a fun few days on LI with family.  Grace and her cousins were in a crabbing frenzy, throwing chicken legs on strings off the dock and scooping up their catch.  The rest of us spent the week hounding Ampr about why she hasn't gone into labor yet.  Running bases, swimming, teaching a class at the gym - nothing was working.  Thomas says he likes her this way and wants her to stay pregnant for a while longer - the baby must agree.  Lauren was praying that the baby would wait until she got home from camp to be born - she didn't want to miss anything.  Her prayers are pretty powerful.   

We are looking forward to Kick for Kancer organized by our friend Nicole Ronco of the Pediatric Cancer Foundation of the Lehigh Valley on Wednesday - check out www.cancersupportgroup.org for more info and registration.  It is a wonderful organization focused on helping and bringing together children and families dealing with pediatric cancer. 

We wish Charlie and Brendan lots of good luck as they leave this week for their first year of college away from home.  I am not quite sure if the Marottas and Donnellys will be throwing a party or crying in their pillows when the boys leave - maybe a little of both?

Thank you for all fo the prayers and positive thoughts for Lauren.  I'll post some photos from Camp when I get them. 

          Crabbers                                                                                                       Baby Crab

8/4/07:  Grace and I will be dropping off Lauren for a week at Camp Can Do in Lebanon, PA tomorrow.  It is a sleep away camp run by the American Cancer Society and a wonderful group of dedicated volunteers who really put the meaning behind the name "Can Do".  Lauren went for the first time last year and had the best time.  It really helped to boost her confidence and self esteem, and helped me to let go a little.  I am still nervous about leaving her tomorrow, but I know it will be another terrific experience for her.  Grace has been getting more and more grouchy as the day gets closer.  She is going to be a little lost without her big sister for a week. 

Lauren has been feeling better since we've been home and on a more normal schedule.  Her blood work and exam at oncology were both fine this week.  She and Grace have been keeping cool, swimming all week.  Her MRI is fast approaching on the 20th, with a visit to neuro-oncology for results and an exam on the 21st.  Then they are back to school on the 27th!   

Still no baby for Ampr - her due date is actually tomorrow.  Jeez people, have some patience!  She is back at the beach this weekend, still lugging chairs back and forth to the boat and giving the lifeguards a heart attack for fear that she might go into labor on the beach.  Grace and I are hoping to make it out to LI next week before the baby does. 

John was back to work this week.  Practice starts on Monday with the freshman reporting tomorrow and the "big boys" coming on Sunday.  We won't be seeing much of him until classes start in late August.

Thanks for keeping Lauren in your prayers.   

7/28/07:  Last Saturday, Aunt Deb and Uncle Steve got married in Ithaca, NY and Lauren and Gracie made the leap from flower girls to 'junior bridesmaids'.  They looked beautiful in their dresses and flowers, and I did their hair in big girl up do's at their request.  See the photos below.  They danced like lunatics, and Gracie had me spinning, dipping and twirling all night long. My feet still hurt!  The wedding was beautiful and a wonderful chance to spend time with family that we don't get to see very often. 

On our way into Ithaca, we stopped in for a quick visit with our college track coach - thanks for the Bomber gear, Coach Nichols!  After wandering around the campus, I think I want to go back to college and do it all over again!  I can't believe that John and I graduated 20 and 18 years ago - time flies.

We came back through Easton on Sunday, dropped off some bags, repacked others and took off for Rehoboth for a few days on the beach at the "Hotel Lawson".  The girls learned to boogie board on their own, and were having so much fun riding waves, collecting shells and racing their new pet hermit crabs, Crabbe and Goyle (they have Harry Potter on the brain).  It was a great way to spend John's last few days of vacation.  Thank you so much Peggy and Bill for offering the house to us again and sacrificing your precious time there so that we could enjoy it.  We love you. 

Lauren has been a little "backed up" as she says.  I'm not sure why, but it probably has something to do with the fact that we have been on the go so much and off her regular diet.  She spent a few afternoons sleeping on the beach, and is doing better now that we are home.  We will be in for an oncology visit on Tuesday for blood work, a port flush and a once over to make sure everything is ok.  She is scheduled to go to the ACS's Camp Can Do next Sunday for a week of fun away from us.  She had a great experience last year and is looking so forward to it again. 

Now that we are back, we told Ampr she can have the baby any time she wants, sooner, rather than later.  At this point, I think sooner sounds better to her too.  Are you ready Tom and Mikey? 

We are looking forward to a week at home. John will be working, so the girls and I have some things planned on our own.  Thanks for all of the messages in the guest book and for keeping Lauren in your prayers.

7/18/07:  On the last day of school the girls made a list of things they wanted to do this summer.  We have been busy trying to squeeze in a summer's worth of wishes into two weeks before John starts pre-season practice and his summer is over.  The girls and I will still have most of August to have more fun, but it is not the same without him. 

We went to Dutch Springs over the weekend and the girls had a great time in the water, on the high ropes course and rock wall.  Lauren and Grace were fearless on the high ropes, trying everything.  It seems really hard to believe that last summer, Lauren was still wearing her leg braces.  We spent the day at Camel Beach waterpark yesterday.  They went on every ride in the place, most of them several times.  My good ear is still ringing from all of the screams of joy.  It's the only time they can scream without having to hear me tell them to lower the volume.  She was first in line at the Harry Potter opening, and has been talking incessantly about what will happen next.  We have lots of projects and crafts going, and they have been swimming almost every day.

Lauren is feeling great and amazes me with her endurance and energy. All of her bloodwork was normal, even her platelets!  Her PT is going great and she is working hard on her summer reading program.  She will have her next MRI in August when we will decide what the next step is.  It is scary when I think that we are doing nothing to stop the tumors from growing, so I try not to think about it too much.  For now, life is good and we are taking full advantage of it.

Please check out the link to Timmy's Tour de Shore that is posted on the home page (www.tourdeshore.org) .  It is a bike ride to raise awareness and funds for pediatric brain tumors being held along the Jersey shore at Fort Hancock, Sandy Hook on Oct. 7.  The Pauxtis family is working hard to make the day a wonderful experience for all.  Who wouldn't want to take a scenic bike ride along the beach on a beautiful fall day?!

I posted some photos from the ropes course below.  My favorite is of Lauren getting harnessed in for the rock wall. I kept asking her to pull up her bathing suit, but she could care less.  As she says, "seen one, seen 'em all". 

Thank you for keeping Lauren and our family in your prayers.

7/6/07:  We returned home on the 4th from a great week at Camp Sunshine's Brain Tumor week in Maine and a few days of R & R on LI at the beach.  It was by far, the longest stretch of time we have ever had away from home and although we had a terrific time, it felt good to sleep in our own beds.  It is difficult to describe what Camp Sunshine is like in words and do it justice.  We feel very fortunate to have a wonderful extended family that meets in Maine each June, offering support, friendship and lots of fun times.  Thank you to all the wonderful volunteers, especially Lisa,  who took care of Lauren all week and probably has the sorest toes in NJ right now, and to the Children's Brain Tumor Foundation for sponsoring the week for all of the families.  Go Camp Sunshine!!

On our way home, we took the ferry from New London, CT to LI, drove to Oakdale, then took the Windecks to Fire Island and slept on Ampr and Uncle's boat.  Sort of like our own weird version of trains, planes and automobiles, except John had a real washcloth to dry his face instead of John Candy's underwear.  Lauren and Gracie had a great time tubing, catching crabs, driving the boat and playing with their cousins.  Lauren was the only one of us brave enough to swim in the freezing ocean. 

Today we are off to oncology clinic for blood work and a port flush for Lauren.  She is feeling great and looks terrific.  John has office duty next week and Grace is going to All Sports Camp at Lafayette, so we will be in Easton trying to play catch up on a lot of neglected paper work, mail and some fun too. 

Thank you for keeping Lauren in your prayers. 

 NH beach                            Camp Sunshine friends & frogs

Who is driving this boat??!                                 Super tubers!

6/18/07:  I spoke with Dr. Phillips today about Lauren's pending tests.  He said that everything looks very normal - no tumor cells, no signs of MS, no evidence of bleeding or active demyelination - all very good news.  He feels that the diffuse demyelination that occured was most likely due to the Phase I trial drug Lenalidomide, although there is no way to prove it.  Too bad, because it was defintely doing the job controlling the growth of her tumors.  So for now we will just continue to "do nothing" and watch her carefully.  She has an appointment with the neuro-ophth on Thursday, so we will get a good idea of where her vision stands.  Her next scan will be in August unless something weird crops up. 

We are into our second week of summer vacation and it is already flying by.  The girls are into the summer reading program at the library and had the pleasure of reading to Bonkers, the black lab therapy dog, this morning.  They were more interested in petting and receiving doggie kisses than actually reading, but they managed to get through the book.   Gracie is doing all sports camp at Lafayette in July, and Lauren has her plate full with her different therapies and cognitive rehab.  She will be going back to Camp Can Do by herself in August for a week, and is really looking forward to it.

The girls are getting very excited to return to Camp Sunshine for brain tumor week.  They still have to pick out their costumes for the costume party and narrow in on a "talent" for the talent show night.  We are looking forward to seeing our friends from year's past and making new ones.  We will be missing some wonderful families who will sadly not be there this year.

Thanks so much for keeping Lauren in your prayers.

 Lauren and her therapy dog friends at the football camp on 6/3

Gracie, Lauren and Mr. Spalding, 6/3/07

6/8/07: I am not sure where to start.  It has been an overwhelming two weeks.  There are no words to express the gratitude we feel to all those who volunteered so much of their time, energy and talent to help make Sunday’s football camp such a success. 

Over 1400 players came into Easton on Sunday from all over the north east to participate.  Over 230 college coaches and 20 Athletic Trainers sacrificed some of their rare days off to travel and spend the day volunteering for us.  Over 150 volunteers showed up early Sunday morning with smiles and enthusiasm to make sure all the players and coaches were parked, checked in, fed and taken care of.  Over 40 current and former Lafayette football players sweated out Saturday afternoon, putting up tents and lugging equipment, and then came back for more on Sunday!  Phil Simms came home from vacation early, drove himself out to Easton from his home in NJ and was the most gracious and kind person one could ever meet. 

There is just no way we could do it without the kind of cooperation and group effort by so many wonderful people.  My hope is that everyone went home Sunday night with a sense of satisfaction and accomplishment, knowing that so many children will benefit from the $125,000 raised.  One of my most favorite quotes is by, believe it or not, a football coach who said  “…you have lived a perfect day when you have done something for someone who will never be able to repay you…”  Sunday was definitely one of those perfect days.

Lauren has had a busy few weeks too – concerts, awards assemblies, appointments.  On Monday morning she had a lumbar puncture in Philly.  So far, the tests that were run have come back normal – no tumor cells in the fluid. This makes it unlikely that the lesions in the cerebrum are tumor spread.   We are still waiting for the tests that look at the myelin/demyelination activity.   She handled the procedure with no complaints.  Her first words when she woke up were “Where are we going for lunch?”.

She graduated from 4^th grade and elementary school on Thursday.  She was awarded the “Positive Attitude Award” for her class, and was very proud and happy to receive her diploma.  Gracie was so proud of her sister, and received an award for art as well.  I get all weepy when I think of all the wonderful teachers and staff members at school who have taken such good care of Lauren over these past five years, and ensured her happiness and success in school.  I think back to when she was in Kindergarten, bald, bruised and barely able to walk.  I seriously wondered how the heck she was going to make it through.  Shame on me for doubting her determination! 

John and I are working on digging out from the piles of boxes and paper work from camp.  We will try our best to get thank you notes out as soon as we can – please be patient with us.  I will update when we hear back from the hospital on the pending tests.  Thank you as always for keeping Lauren and our family in your prayers.

Miss Getz & Lauren

Lauren and Dad after Graduation

5/23/07:  It's been a long couple of days.  Lauren's scan was pretty much the same as it was eight weeks ago, which is good and not so good.  The actual tumors in the optic pathways, hypothalamus and brainstem are stable - great!  The lesions covering the cerebrum are all still there, and there is disagreement among the treatment team as to if they are slightly more or less prominent in some areas.  Her doc was hoping that if they were caused by the Lenalidomide that they would have dissapated now that she has been off treatment for eight weeks.  He still feels that the drug is the probable cause.  He said that he gets weekly calls from the drug manufacturer and the PBTC study coodinator for updates on what is going on with Lauren.  What a thing to be famous for!  Obviously they are extremely interested to know if the drug is the culprit.  Possible wide spread demyelination has been added to the list of side effects on the consent form for the clinical trial, so I am glad to know that they take things like this very seriously. 

Since she is doing so well, despite what the scan says, we are going to hold off on the stereotactic biopsy of the brain.  She is going to have a spinal biopsy and tap on June 4th.  They will take a look at the cells in her spinal fluid and run some other tests.  She was dancing around when she found out that she GETS to have anesthesia - she has to be one of the only people who actually likes it.  "Lauren - Freak of Nature" as Mikey would say.

Tonight is the string ensemble concert.  Can't wait to hear it all in unison after listening to the soloist here at home! 

I'm spending more and more hours each day on camp prep.  The count is at 800 as of last night and I know all you procrastinators will be flooding the mailbox this last week and a half.  Please get them in asap so we can be ready for you on the 3rd. 

Thank you for keeping Lauren in your prayers these last few days. 

5/20/07:  Lauren and I are headed down to Philly tomorrow for her MRI.  We go back on Tuesday to get the results and see her Neuro-oncologist.  Please keep her in your prayers.  I will update with results. 

Here's a couple of photos of the girls with their new baby cousin Nathan and their "other" cousins.   They loved Nathan, but at only 10 weeks, he wasn't quite as entertaining as Charlie and Mokie.

5/11/07:  Things have been busy - all of the end of the school year activities, projects, meetings, plus camp preparations have been keeping me on my toes.  John is coming home this weekend.  He has one more week of spring recruiting in FL, but first he has to get through a Brownie sleepover at the Lehigh Valley Zoo on Saturday night with Gracie and her troop.  I can't wait to hear what happens. Gracie is excited to bring him because she knows that he's bound to do something that a bunch of 7 year-olds will find hysterically entertaining.  Lauren is feeling great and her counts were pretty good this week.  With the help of the great team at school, her IEP is all set and her accomodations are in place for Middle School next year.  

Camp enrollment is through the roof!  If you plan to attend, please send your registration in asap.  With this many participants, it really helps us to stay organized if we have you in the system.  Also, if parents are going to be spending the day spectating and will have younger siblings with them, you are welcome to have the children join us in the Kids Tent for crafts and activities.  See the Fun Day page on this site.  Please rsvp to firstandgoal@rcn.com if you plan to participate.  We are looking forward to seeing everyone on 6/3!     

Happy Mother's Day!  Thank you for keeping Lauren in your prayers. 

4/29/07:  We spent the weekend having a great time as spectators at two special events. On Saturday night we were treated to lots of entertainment at Easton High School's "Almost Anything Goes" competition, where students and faculty face off in a series of crazy events for bragging rights and to raise money for charitable causes.  We are so thankful to the team captains and participants for selecting Lauren's First and Goal as the charity of choice again this year.  Gracie was rooting for team "Sleeping with Dafishes", and Lauren was leaning towards "Check yourself before you wet yourself" just because she liked the name.  The golden innertube went to "Tony's Tigers".  Thank you to advisor Rich Uhler and all those who came out to participate and support this great event.  Here are the girls posing with the trophy and all of the team captains:

This morning, we had the pleasure of cheering in "Team Lauren" at the Allentown 1/2 Marathon and 5K.  This terrific and dedicated ensemble of teachers and Nurse Dee from Lauren and Grace's school, Tracy Elementary, has been training for months in preparation for the race.  With the unbelievably generous support of the staff, faculty, students and families, their efforts have raised over $4,000 to date, with more donations still coming in.  We are grateful beyond words for all of their hard work and generosity.   I love this quote -  "You'll never stand as tall as when you bend down to help a child".  The funds raised through this team's effort will help so many children.  In my eyes, they are all 10 feet tall!

Row 1:Miss Kocher, Grace, Lauren, Miss Getz

Row 2:Nurse Dee, Miss Donato, Mrs. Stofonak

Row 3: Cadet Kocher, Mr. Rice, Mr. Cinoa, Mr. Durie

Being so busy with camp preparations has helped to distract us from Lauren's upcoming MRI on May 21, and what news it may bring. As usual, she is really enjoying every day and looking forward to all of the end of the year activities and celebrations. 

She had a wonderful time at her Camp Can Do Re-union last weekend.  There was a lot of giggling when I went to pick her up, but she has not given up many details of what went on.  I am waiting to hear from Bonnie,  her terrific Camp Counselor, to get the scoop.  I am afraid that "what happens at camp, stays at camp".  Grace and I went to Amish Country after we dropped Lauren off on Sat. morning.  We had a really great day touring around and exploring.  On the way back home Sunday, we stopped at Crystal Cave for a cave tour and some rock shopping in the gem store. 

For all of you thinking about the football camp on June 3rd - don't wait until the last minute - please pre register!  I can't believe how many registrants we already have and from how far they are traveling to attend. We are looking forward to a great day!

Thank you for keeping Lauren in your prayers and thoughts. 

4/20/07: Here are the photos I promised of Lauren and Eric Weihenmayer, the first blind man to summit Mt. Everest.  Lauren brailled him a letter, which he is holding in his hand and reading.  Notice where Lauren's hand is.  The girls loved meeting Willa, his seeing eye dog.  John and I are part way through his new book, "Adversity Advantage".  I have to finish before him or he'll take it with him during spring recruiting! 

Lauren went to the Franklin Institute today on the 4th grade field trip.  Tomorrow Grace and I are dropping her off at the Camp Can Do Reunion for the weekend.  She is one tired, but very excited girl tonight.  She and Grace are so cute right now, cuddled on the couch under a blanket watching The Sound of Music for the upteenth time. 

Hope everyone is enjoying the fact that SPRING has arrived!  Thanks for all of the prayers.  They keep us going.

April 13, 2007:  Lauren and Gracie are doing fine this week.  They headed back to school on Tuesday after a nice spring break.  Lauren had her blood work on Weds., and thanks to the elimination of the lenalidomide, her counts are starting to rebound. 

 I had my third, and hopefully last, skull/ear surgery last Friday and somewhere over the past 7 days, I finally woke up and started functioning again - I seriously feel like I lost a day or two. I kept thinking about all of our BT kids who have been through so much - multiple craniotomies, shunt surgeries, revisions, not to mention chemo, radiation and everything else they have to put up with, and tried not to be such a wimp.  My Mom and Dad came out from LI to help, and brought all the good stuff for Easter - braciole, gravy, meatballs, roasted peppers, fresh mozzerella, and home made ravioli - everyone enjoyed it, and I made it downstairs to watch them eat, which was good for me. 

Lauren is gearing up for her Camp Can Do Reunion next weekend.  She is so excited to see all her camp friends and counselors again, and spend the night in the cabins.  Gracie and I will drive her down Saturday morning and pick her up on Sunday afternoon.  I hope it warms up a little by then or they will freeze in those cabins!

Here are photos from the girls trip to the beach on LI with Hannah.  Hannah is the only kid on LI whose parents send out in public with a Red Socks jacket on. (Easy, UB!)

April 4, 2007:  Last Friday we had the honor of meeting Erik Weihenmayer, who among many other accomplishments is the first blind person to summit Mount Everest.