Journal History

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Saturday, December 24, 2005 6:20 AM CST

Hi Everyone,
Well, here we are... just one week away from 2006.... what a year it has been!
Thanks so to all of you for your generosity and support ---
2005 was certainly a year to remember...

The most remarkable thing about 2005 to me personally was that, despite being a difficult year of missing Alex, I will remember it as a truly wonderful year. The outpouring of support that Alex's Lemonade Stand Foundation has continued to receive has left me feeling so extremely fortunate and grateful during a time when I would have expected to feel let down and hopeless. There are not words to properly thank all of our volunteers, lemonade stand hosts, sponsors, donors, and anyone who has supported us in any way -- what you do is having an impact in so many ways.

We are happy to report that we have raised over $3.5 million in 2005. Although this fell short of the very ambitious goal of $5 million that Alex set before she died, we are very pleased and we think that Alex would be too. Our 5 year fundraising goal, including 2005, is $25 million and we are off to an excellent start.

We are accepting grant applications and anticipate awarding close to 20 grants for childhood cancer research. We continue to focus on the areas that are lacking funding: nurses and data managers to speed up the clinical trial process --no child should die while waiting for a treatment that might help them ; we are also awarding Innovation Grants to researchers who have a new idea that needs some early testing before they can get major funding from the NIH; finally, we are awarding Young Investagator grants to encourage the top researchers of tomorrow to work towards finding cures.
This is all very exciting and life changing work -- your support is making a real difference.

2006 looks to be an exciting year...We can't promise the sort of Triple Crown excitement of Afleet Alex in 2005 but we are looking forward to some wonderful things in 2006.... many, many, lemonade stands, a radio and television PSA campaign, 2006 Lemonade Days June 9 - 11th, special events, sponsorship events, working with college groups, working with schools, more lemonade stands, and who knows what other exciting things?!

Our family is doing well;It goes without saying that we miss Alex so very much; there is nothing I can say that will really reflect the depth of what it feels like so.... I think I won't even try. Let's just say that I am extremely lucky to have Alex'Lemonade Stand as a way to remember Alex because it truly keeps me going somedays.
The boys seem happy and have grown up so much this year. As you parents know, it is incredible to watch them grow... Patrick continues to enjoy middle school and has a great group of friends; Eddie is still as lovable and energetic as ever and things just seem to come easy for him; Joey is now going to school three days a week and has grown soooo much -- he continues to bring us all a lot of laughs. Jay and I are doing fine; we are busy always, but also always having fun. As I said, we feel very fortunate in so many ways and are grateful for your support.

So, with gratitude for making our 2005 so special, we wish you all a special holiday and peaceful new year.
Liz and Jay Scott
Alex's Parents.

Sunday, October 9, 2005 11:26 PM CDT

Dear Loyal Friends,

Oh, how time flies! I am embarrassed at how much time has gone by since my last update. We are busy, busy, busy these days (what else is new?)….

The summer was a tremendous time for Alex’s Lemonade Stand. Thanks to the generosity of people across the country, we have now reached the $2.5 million mark for this year – we are halfway to Alex’s $5 million goal in 2005! The money donated so far has been raised at lemonade stands and other events, donated online, sent in the mail, and sometimes even hand delivered. I know I say it often, but that’s because it is true – we are so fortunate to be a continuing Alex’s memory in this way.

The letters we receive from our stand hosts and donors are beyond what I can describe--sometimes they make us cry and sometimes they make us laugh but they always inspire us. There are so many wonderful, kind, and generous people in the world. Thank you for letting Alex’s Lemonade Stand into your hearts.

So, will we reach our goal of $5 million before 2005 ends? It seems like it is a long way off, but we are optimistic that we can still make it happen. Of course, we will need a lot of help but here is how we think we can do it…

• Volvo for Life Days: Happening now! October 8, 2005 – 16th at Volvo dealers across the country. In addition to lemonade stands at each dealership, Volvo is donating $20 per test drive to Alex’s Lemonade Stand. You simply have to visit the dealership and test drive any Volvo you would like – you can tell them that you are there “to drive for childhood cancer” or “drive for Alex” if you would like. . If each dealership can have 100 people test drive during this promotion, then they will raise over $600,000 for Alex’s Lemonade Stand!

• We are still receiving registrations for lemonade stands and events everyday. With the cold weather coming, many people are bringing their stands inside to malls, schools, and other places where thirsty people hang out. We are learning from all of you how to be creative in fundraising… 24-hour lemonade stands, stands at professional sports games, coin drives, basketball tournaments, walk-a-thons, the list goes on and on.

• Some recent publicity, including an article in Guideposts, an advertisement by Volvo in People Magazine and Parade Magazine, and local newspapers will help us to keep the momentum going towards that goal and into 2006.

• Finally, we are brainstorming for a final “Go for the Goal” event in December. This will be a final push to make it to that $5 million – we will keep you updated on what we come up with.



Regardless of how close we get to the $5 million goal, we feel confident that Alex would approve of how far we have come from her front yard stand 5 years ago. Her influence clearly remains and we are proud to say it is making a difference in the fight against childhood cancer. What a wonderful way to be remembered….

In other news,Patrick is proud to be heading up the Youth Advisory Board (The YAB) here in Wynnewood. The YAB is comprised of children in various levels of grade school who would like to be a part of Alex’s Lemonade Stand. They will meet monthly to discuss ideas and work on fundraising projects together. The first meeting was great fun – what a collection of ideas they came up with! We are looking forward to working with this energetic group of youngsters.

Our family is doing really well. Patrick and Eddie are back at school; the transition to school this year seemed easier than ever for them – they are growing up so quickly. They keep busy with school, friends, and helping out at the office and stands. Joey is also wonderful and is keeping us all entertained with his antics and growing vocabulary. Jay and I are pretty much devoting all of our time to Alex’s Lemonade Stand and the boys, which keeps us insanely busy. I have to say that, for me, keeping busy means keeping my sanity. I think of Alex always and miss her every minute of every day; keeping busy is the best way to stay focused on the important and wonderful things in my life.

Despite all of the wonderful things in my life, there will always be a part of me that has to constantly work to accept the things I cannot change… I will always live in the shadow of grief, I will always have deep sadness that is just waiting to come to the surface, I will always have questions that will never be answered, I will always wonder what Alex would be like if she had survived her cancer, I will always feel a pull at my heart when I see a mother and daughter sharing a laugh together…. If I don’t accept these things, then my life would be consumed by them. So, I have to accept them (I didn’t say I like them!) and I get on with life.


As always, we are most grateful for your support and friendship.
Thank you for taking the time to check in with us.
With love,
Liz

Sunday, July 17, 2005 10:10 PM CDT

Dear Friends and Family,

All I can say is “Wow! What a month (and a half)!” I know I am always saying this, but that’s because it is true – we feel so incredibly lucky to have so many people remembering Alex and supporting her lemonade stand. We have enjoyed a tremendous response and have been working super hard to keep up with everything. Despite our best efforts, we have not been able to keep up with all of you; believe me, it is no indication of a lack of appreciation. It is simply an indication of how much we have grown this year – we hope you all realize how wonderfully generous and giving you have been. Your support has made such a difference for our family, Alex’s Lemonade Stand, and for childhood cancer.

The last time I wrote we were heading into our BIG weekend – Alex’s Lemonade Days June 10th – 12th. Our goal was BIG – over 1000 lemonade stands to raise over $1 million. The results are looking good so far – we have heard back from about 900 stands and are quickly approaching the $900 thousand dollar mark. With around 200 stands left to report in, it looks like that $1 million is within reach. We just have to focus on the remaining $4 million now!

Our annual lemonade stand here in Wynnewood (Alex’s original Lemonade Stand) went extremely well thanks to the dedicated volunteers and donors from this area. We took in over $40,000 in donations that day and one of our new sponsors, Lukoil, pitched in with another $25,000 to bring our total to $65,000. The donation total for the day was a record high for Alex’s stand and a much appreciated tribute to Alex’s lasting legacy.

Also, I must mention that awesome AFleet Alex and his equally awesome team of jockey, trainer, and owners. The Belmont race was a perfect win and the perfect way to end our big stand here in Wynnewood. We are still enjoying his success and look forward to watching him run at The Haskell at Monmouth Park on August 7th.

Looking back on the past year, it is obvious that we have come a long way with getting things organized and structured at Alex’s Lemonade Stand. We hope to continue to improve and are open to suggestions and feedback; just let us know if you see ways that we can improve. It will help us decide which areas need the most attention. We are hoping for a really busy fall to help us get closer to that $5 million in 2005 and then onto 2006!

I would also like to let you know that the Alex’s Lemonade Stand Kit is available in stores everywhere and online. It is a great way to get kids involved – with a book about Alex and having a stand, posters to color for the stand, lemonade, and other cool stuff to help host your own Alex’s Lemonade Stand. To view a nice ecard for the kit go to http://www.perseusbookspromos.com/lemonade/ .

On a personal note, we are doing pretty well; the boys are fine and enjoying the summer. They have been hanging around at home a lot, spending time together, and seeing their friends. I think they are doing well; we all have our bad days but overall I think they are doing fine. It is difficult to know how they will feel as they grow up but I am hoping they will not let their loss overshadow all of the good things they have in their lives. It is important to remember and sometimes feel sad, but I want them to be able to learn to live happily despite their sadness. Honestly, I think kids are much better at making the most of things than we grown ups are so I should probably be taking my cues from them.


Jay and I are spending lots of time together – at home and at the office. We work well together although we certainly have our moments! I have been really struggling with missing Alex and memories of last summer; Jay has been so genuinely understanding, as only he could be. Of course we both miss Alex so much, I can’t even begin to convey how it feels. When I remember things we did, or the way she said good night, or even just seeing her face I just want to cry. I want to have her here so badly that I sometimes can’t think about her for fear of starting to cry and never stopping.

I have come to realize that remembering is much harder than forgetting. However, I am terrified of forgetting things about her – I don’t want to lose any more of her. So, in between the busy moments of life, I find time to remember her and think about her for a while; then I force myself to stop so that I can get on with life…and life does go on.

We are looking forward to the rest of the summer. I definitely want to get away as a family but we haven’t planned anything yet. I think we will figure something out in the next few weeks. The lemonade stand is a huge commitment and I am still trying to work out a balance between the important work of raising money for childhood cancer and the important work of taking care of the boys. I think it will work itself out in time; we just have to keep moving forward.

Thanks again for sticking with us and thanks again for making our lives better,
Liz

Sunday, June 5, 2005 1:51 PM CDT

Hi Everyone,

Wow! We are less than one week away from our big national weekend, June 10-12.
I cannot believe how incredible the past few weeks have been – incredibly exciting, incredibly touching, incredibly successful, and incredibly busy!

Just a reminder – next weekend is National Alex’s Lemonade Days. The goal of the weekend is 1000 stands across the country and $1million raised for childhood cancer research. We have surpassed the 1000 stand goal and are optimistic that together, we will surpass the $1 million goal.
To find a stand near you check the alexslemonade.org website a little later this week – the stand list should be complete by then.

For those of you in the Philadelphia area, we will be holding Alex’s original Lemonade Stand here in Wynnewood at Penn Wynne Elementary school on Haverford Avenue, Lower Merion Township. We will be there Saturday, the 11th, from 10am – 4pm, serving lemonade and honoring Alex by carrying on her annual tradition. Activities throughout the day include a raffle, activities for children, a magician, HipHop the 76ers mascot, and other special guests. Also, Lukoil (they are coming to a Mobil station near you very soon) has generously offered to match our donations at the Penn Wynne stand up to $25,000 – this will give us a huge boost in our total for the day.

Also on the 11th, we will complete the Triple Crown of Lemonade Stands with two lemonade stands at The Belmont, run by my parents, sisters, brother, and friends. That awesome horse Afleet Alex will be running next Saturday in The Belmont – because of our hometown stand, we will not be going to The Belmont ourselves but we will certainly be watching and cheering him on! The race tracks from Churchill Downs (KY Derby) to Pimlico (The Preakness) to The Belmont have been so welcoming and supportive of our stands – it has been a pleasure to work with them and a privilege to set up on their biggest racing days of the year. To add to the racing excitement next weekend, over 30 racing parks across the country (and even in Canada and Puerto Rico) will be hosting their own Alex’s Lemonade Stands.

I should mention that the June weekend will kick off the summer (and fall) of lemonade stands – we are aiming to have 5000 stands total in 2005, in an effort to reach Alex’s $5 million goal. So, let your friends know that it is not too late to get involved by hosting a lemonade stand this summer, fall, or anytime!

We have enjoyed an overwhelming response to Alex’s story lately and are so grateful for the generosity and kindness of others. The connection between Afleet Alex and the commitment of the owners, trainer, and jockey to the cause has been an amazing and unexpected boost to our efforts this year. It has been an unforgettable experience to be a part of the excitement; as most of you know, to watch Afleet Alex win The Preakness was beyond belief as he stumbled, and managed to stay on his feet, and win. Our Alex was very much on our minds as we celebrated the victory that was nearly a tragedy; Afleet Alex certainly seems to share the same determination, strength, and courage.


Other things that are happening:

The special label Alex’s Lemonade Stand/ Country Time is now available in grocery stores.

The Alex’s Lemonade Stand Kit, published by Running Press, is now available in book stores. It is a book about how to have an Alex’s Lemonade Stand with a kit full of supplies to set up your stand.

Our book, Alex and The Amazing Lemonade Stand, with the new yellow cover is also available in book stores and online. Many more stores are carrying the book this year, so it should be pretty easy to find.

We are keeping extremely busy and spending an insane amount of time working to keep up with the response we continue to receive. Although, I must admit, I often feel overwhelmed by the amount of work it requires, I find a tremendous amount of comfort and joy in seeing the outpouring of support for the cause. I feel lucky to have Alex’s story and memory carried on in such a meaningful way; it does help me get through the day. Most importantly, I believe that what we are doing (and I mean all of us) is making a difference and will make a difference for children with cancer and their families….
Too many parents and families lose their children to cancer; children who were also determined, strong and kind and who also had big dreams. Too many parents and families are currently watching their children undergo treatments for cancers; children who would rather be playing with their friends, going to school, or not worrying about the stresses of hospital visits. Too many parents, families, and children are dealing with long-term survival issues and side effects from childhood cancers and treatments; watching as they continue to deal with the effects of cancer for the rest of their lives. I do believe that better treatments and better survival rates are on the horizon and we are happy to do our part and grateful to all of you for your support.

Patrick, Eddie, and Joey are doing fine. We are all ready for the summer and for things to settle down a bit; the kids have been real troopers through all of the craziness and running around. They do take a lot of pride in being a part of it and they also understand firsthand how important it is to raise money for cancer research. Obviously, they don’t always enjoy the amount of work and time it takes but I think they are handling things nicely and I think they will be grateful for the experiences when they are older. I also like to have them feel connected to Alex this way – it keeps her in their lives in a way that they can share with others.

I am missing Alex so much, especially as we look forward to next week and plan her stand here in Penn Wynne – Alex’s original Lemonade Stand surely will not be the same without her. I think it may be more difficult than I even expect it to be, but I also know that it will be a real tribute to her as so many (hopefully!) people from the community come out to get their lemonade and remember Alex.

One of the things I have thought a lot about over the past ten months is whether Alex would approve of how things are going with “her” lemonade stand. Lately, I have been reassured by the fact that amazing things seem to continue to happen; I feel as if she is still very much in charge and running “her” stand. What a great feeling!

Well, I look forward to seeing what happens next weekend with the stands, the horse, and whatever else comes our way!

Best wishes for a wonderful June!
Love, Liz

Sunday, May 1, 2005 11:37 PM CDT

Hi Everyone,

Since it has been occupying our time morning, noon, and night, I will start right in with the happenings with Alex’s Lemonade Stand.
Here is some of the news:

We are heading full speed ahead into our busy, busy, busy lemonade season. The national Alex’s Lemonade Stand Days will take place from June 10 -12th. Over those three days we are trying to get at least 1000 lemonade stands in an effort to raise $1 million towards Alex’s goal of $5 million in 2005. This weekend will kick off a summer of lemonade stand, with a goal of another 4000 stands before the end of 2005!

Okay, so these are ambitious goals, but we are determined to reach that $5 million goal and we have a long, long way to go. So, please consider having a lemonade stand and tell your friends to have one too! It is fun and easy and it feels good to know that you are raising awareness and funds for childhood cancer just by selling lemonade. If you are interested, please email me at liz@alexlsemonade.com and I will register your stand.

Next Saturday, May 7th be sure to tune into The Kentucky Derby and cheer for Afleet Alex. As you may remember, one of Afleet Alex’s owners has been donating a portion of the horse’s winnings to Alex’s Lemonade Stand. Well, now he is going to the Derby and so is Alex’s Lemonade Stand! We will be having a lemonade stand at the Derby, right near the paddock, where they saddle the horses. It should be a lot of fun and hopefully bring some more awareness to the cause. Also, tune into both ESPN and NBC Sports (not sure how you will watch both) for some coverage of Afleet Alex and his connection to Alex’s Lemonade Stand.

The book Alex and The Amazing Lemonade Stand has been reprinted with a beautiful new yellow cover with dust jacket. Aunt Pam did an outstanding job with the new look – thanks Pam! The new edition should be available at book stores and online by mid to late May.

Running Press Publishers of Philadelphia have published, with our help, an Alex’s Lemonade Stand kit. They did a fantastic job on this fun activity kit that includes a book about Alex and how to set up a stand, as well as supplies for an Alex’s Lemonade Stand.
It will be available in book stores on May 24th – it really is nicely done.

Alex’s Original Lemonade Stand at Penn Wynne School should be a lot of fun, with entertainment and activities all day long as well as some special guests. Alex’s presence will be missed by all. The day will be bittersweet as we pay tribute to her by continuing her annual stand and toasting her with a glass of ice cold lemonade. Our goal this year is to raise $50,000 at her stand at Penn Wynne (last year it was $38,000) and we are hoping to double it with a matching sponsor (as of right now we will call it my “imaginary matching sponsor” but I am hoping to have a real one soon!)

Finally, we are seeking raffle prizes for Alex’s original Lemonade Stand here in Penn Wynne. Last year the raffle was a big success and we are hoping to make it even better. If you are able to help, please email me to let me know. Again, it is liz@alexslemonade.com.

Well, that takes care of business, which is going very well. We are lucky to have so many exciting opportunities for Alex’s Lemonade Stand; it really is a privilege to be carrying on Alex’s important work of raising awareness and money for childhood cancer.

In all honesty, as wonderful as it is, I do find it exhausting at times. As important as it is to me and our family, it is also very emotionally and mentally consuming, not to mention time consuming. So, I am really struggling to find a balance between family life and the work of Alex’s Lemonade Stand. Truly, I have had to make an adjustment to being a “working Mom” and Jay and the kids have had to deal with the changes as well. As a 10 year “stay-at-home Mom” by choice, it is quite a change to be working to the extent that I am, especially with Joey not yet in preschool. However, I am adjusting, as are the kids and Jay. Joey is a real trooper and comes to the office, attends meetings, and just hangs out according to my schedule. Of course, I do love the work and couldn’t ask for a more meaningful and important way to focus my energy right now.

The boys are doing fine and are really looking forward to the summer now that spring is in full swing. I can’t believe that the school year is so close to over – Patrick will be off to middle school and Eddie will be moving onto 2nd grade already! Joey will probably not go to preschool next year as he is just 2 years old, but he is certainly coming into his own personality and slowly moving out of babyhood. I can’t believe how fast the kids are growing up. They seem to be coping well, but only time will tell.

Jay and I are also doing fine. We have good days and bad days, as to be expected. Today marks 9 months since Alex died and, in contrast to how fast time flies with the boys, it truly feels like it has been forever. I miss her so much all the time that I can’t fathom that it has only been 9 months. How could 9 months feel so long? I can’t imagine what 9 years or 29 years will feel like; it really is overwhelming to think that this feeling will stay with me for the rest of my life. I know that we will be okay; we just need to accept the fact that nothing will ever fill that huge void we feel and learn to live with it as best we can. (Easier said than done!)

We do appreciate you checking in on us. I try to update once a month and will continue to do so. Thanks for being so patient and for continuing to support our family and Alex’s Lemonade Stand.



With love, Liz

Sunday, March 27, 2005 11:05 PM CST

Happy Spring!
It, once again, been too long since I last wrote and I have a lot of updating to do….

We are keeping extremely busy with Alex’s Lemonade Stand as we head rather quickly towards the Lemonade Stand Days from Friday June 10 –Sunday June 12th. In an effort to reach Alex’s goal of $5 million for childhood cancer in 2005, we are expanding the national weekend to three days, to allow more flexibility and encourage participation by schools and businesses. Over this long weekend we are hoping to have 1000 lemonade stands with a goal of raising $1 million. This weekend will be a really special tribute to Alex’s memory and great way to jumpstart our way to the $5 million goal. So… we are hoping that anyone who is interested in participating in the big weekend will please contact us so we can count you towards our 1000 stands! Also, if you know anyone who might be interested in having a stand, please pass along our website and/or contact info.
One more note on lemonade stands – if you can’t participate over the long weekend or if another date works best for you, just let us know. We have a very ambitious goal of 5000 lemonade stands in 2005; believe me you can hold a stand anytime, anyplace and it is greatly appreciated!

Other exciting happenings include….
The special label Alex’s Lemonade Stand Country Time will be available in the next month or so in stores. If you hope to buy it in your local supermarket, be sure to ask the store manager if they can order some.

Afleet Alex, the racehorse who runs for Alex’s Lemonade Stand is hopefully going to be running in the Kentucky Derby. Every time Afleet wins, places, or shows, one of the owners donates a portion of the winnings to Alex’s Lemonade Stand. This horse has been extremely successful and it will be very exciting if he competes in The Kentucky Derby. You can check out the horse, its website, and the official Afleet Alex gear (complete with an embroidered lemon and portion of the proceeds donated to Alex’s Lemonade Stand ) at www.afleetalex.com

The Connecticut volunteers are planning the first annual Lemonade Gala on October 15th at The Hartford Club. The committee is putting together a really incredible event, with Hannah Storm and Tracy Smith from The Early Show as the hosts for the night, a great band, local celebrities, and lots of fun activities. For more information about purchasing tickets, getting involved, or sponsorship, please contact us.

Obviously, Alex’s Lemonade Stand continues and we are so humbled by the response we continue to receive. It is comforting to know that Alex’s memory and legacy will live on through all of you and countless others who support her cause – finding a cure for childhood cancers.

Okay, so that is enough lemonade talk for one posting! Our family is doing well and really looking forward to some spring weather. I love the spring and find it very energizing. I am certain that this spring will look the same, but I am also certain that it will not feel the same. This seems to be the way life is for me now -- filled with good things and plenty of happiness but always feeling that painful loss and true sadness. My life is segmented in two parts now – before Alex died and after Alex died. As much as I try to “continue” or “carry on” it just doesn’t feel the same. This probably seems obvious to most of you, but it is really hard to explain it because it goes much deeper than feelings – I am a different person in so many ways and I have to learn how to be the “new me”.
Well, this probably doesn’t make a whole lot of sense to most of you, and honestly, it confuses me sometimes! I guess the short story is that I am doing okay, just missing Alex more than I would have thought possible.

The boys, including Jay, are great, just getting bigger and better every day. (Oops, Jay is not getting bigger, just better!) We are waiting for spring and really looking forward to the longer days of spring and summer. Family life has definitely settled into new routines; we are all getting used to me being a “working Mom”. With the boys in school, Joey and I spend most of our days running around for Alex’s Lemonade Stand – at the office, at meetings, and working/playing at home. We try to be home in the afternoon, when the boys are home from school so that we can all hang out together. Of course, we are still watching American Idol together, (which is like a part-time job itself) and it will always reminds us of Alex.

Thanks again to you all for supporting us and for caring about our family. It means so much to us to know that you all are still checking in on us.

With love,
Liz

Saturday, February 19, 2005 0:14 AM CST

Dear Friends and Family,

I can hardly believe that we are heading into the last full week of February already; time is flying by as we are as busy as ever here.

I would like to let you know that we have updated much of the alexslemonade.com website and are working on the rest. With all of our organizing, fundraising, and planning for Alex’s Lemonade Stand we had not realized how much of the site was outdated. Last week Patrick was checking out the website and said “You should really update it. If I was looking at it and if didn’t know you, I would think you didn’t care anymore.” Well, we sure do care! So, thanks to Patrick’s honesty, we immediately started working on updating important information like brochures, grants made, etc. We have been putting the updates on hold because a fantastic web design firm called Leap Frog is redesigning our entire website. They are generously donating their services for this huge project. Our new website will include many of the same elements as the old website but it will be better organized and contain many more photos, a guestbook, and other cool features. The brand new site should be up and running this spring – you’ll know it when you see it!

We have been also working day and night to keep Alex’s dream alive in a big way…

Jay and I, along with Alicia and Ligia and countless others are focusing on Alex’s Lemonade Stand Days which will take place on Friday June 10 – Sunday June 12th. In an effort to meet Alex’s goal of $5 million in 2005, we are trying to recruit at least 1000 lemonade stands to be held over the June weekend. Our goal for the three days -- $1 million! As Alex once said, “I think it will be hard, but I think we can do it if everyone has lemonade stands and sends their money in.” 1000 stands sounds like a lot but we know we can do it, especially if we can get some retail locations to host stands like Super Fresh Stores did last year (they have 76 stores).
So, we are asking everyone we know to ask their friends, coworkers, offices, companies, churches, schools, (you get the picture) to participate in this very meaningful event. If anyone is interested in learning more or signing up to host a stand or related event, they can email us at jay.scott@verizon.net or liz@alexslemonade.com . Also, we have a new phone number at our offices, 610-649-3034 or toll free 866-333-1213. For the June event, we will be sending out emails and other information over the next few months, as well as a box of supplies in May.

In addition to the June event, we have a very ambitious goal of a total of 5000 Alex’s Lemonade Stands in 2005. Many people, businesses, and schools are unable to plan their event for the June weekend but still want to help – of course, we encourage people to have lemonade stands all year round. Please feel free to send people our way if they have questions, either via phone or email.

As I mentioned, we have a newly established Board of Directors who have been a great resource for us in our planning and organizing. We feel honored to have such a qualified Board which includes:
Erin Flynn, Chief Operating Officer- Jewish Vocational Services, Boston
Jocelyn Hillman, Parent Advocate (daughter had cancer)
Soren Johannsson, Public Relations at Volvo Cars
Mark Juliano, President- Caesars Palace Las Vegas
Gavin Kerr, Chief Operating Officer at CHOP, Parent Advocate (son has cancer)
Billy King, President- Philadelphia 76ers
Jeremy Nowak, CEO and Founder- The Reinvestment Fund
Kay Sweet, Retired school principal and educator, Alex’s former tutor
Corrine Sylvia, President- CSA Fundraising consultants

I would also like to mention how proud we are of the unique grants that Alex’s Lemonade Stand has made to hospitals across the country. Alex’s Lemonade Stand has donated over $1 million to childhood cancer research in the past 12 months! As parents whose child participated in various clinical trials for over 4 years, we are well aware of the impact that new treatment options can have on kids with cancer. It is hard to put into words how difficult it is for children and their families to wait and hope that new treatments will be available to treat their otherwise incurable cancers; especially since these kids do not have the luxury of time. For the past couple of years, we have been working directly with doctors and researchers to identify the specific ways in which we can make an immediate impact for children who need new advances in treatments—and who need these options today. Doctors have identified a critical lack of funding for support personnel who speed up the process of enrolling children with cancer in clinical trials. We were surprised and disappointed to learn that there are not grants available on a regular basis to fund these types of positions. With donations from Alex’s Lemonade Stand, hospitals across the country have created new positions, specially focused on enrolling and managing children in clinical trials. Just to give you an idea of the impact of these grants – in just one year, with a grant from Alex’s Lemonade Stand for a research nurse practitioner, CHOP doctors were able to more than triple the enrollment of children with neuroblastoma in their clinical trials. Talk about making a difference! We are very excited to be continuing our committment to this type of grant giving with our newly established Medical Advisory Board, with top docs from CHOP, Texas Childrens, UCSF, Connecticut Childrens, and Johns Hopkins. We will continue to focus on these unique grants – for a complete list of grants made check out our updated website. Thanks to all of you for supporting Alex’s efforts; you are changing lives.

Well, I think that is enough talking about the lemonade stand (although I could go on and on).

I know that many of you often think of us and wonder how we are managing and coping. I think the boys are doing well.
Patrick is totally busy with school, homework, projects, clubs, and friends. He is a very responsible 10 year old and takes his school work very seriously. He is growing up so fast and I can hardly believe that he is picking some of his middle school electives already. Honestly, I think I will be as nervous as him for middle school—I hate to think of him not being in my backyard every day, with the great teachers at Penn Wynne who know him so well. Although, in all fairness, Bala Cynwyd Middle School, where he will go next year, is a terrific school and they have been huge supporters of Alex’s Lemonade Stand – as a matter of fact, if you are reading this, you better be nice to Patrick (just kidding, sort of).

Eddie is just as lovable as ever and is doing very well in 1st grade, making lots of friends. He just finished indoor soccer with his team losing all but their last game – but never losing their enthusiasm for playing. I am very proud of what a loving big brother he is to Joey; he plays with him, shares with him, and basically adores him. The other morning they were both cuddling in our bed in the morning. I overheard Eddie whispering to Joey, as he held his hand, “Joey, you are the best baby brother in the whole world, I love you.” It was so cute and spontaneous, it just made me smile (and wonder, “what happens to boys as they grow up?!”).

Joey is growing and growing– he will be two years old on March 4th. He is coming into his personality and “asserting his independence” (that is modern jargon for “being a brat”). Seriously, he is absolutely enjoyable. He mimics everything that we do, especially Eddie; he loves to watch Sesame Street with me while I drink my coffee; he spends a lot of time with our friends Alicia and Kevin and their boys; he keeps busy with getting into drawers and making a mess; and is a regular at lemonade stand meetings of all kinds.

Jay is busy with working and preparing for a very busy month ahead (March is one of his busiest months). He continues to handle things remarkably well and is just quietly, yet strongly, supportive of me all the time – I am very lucky (and he is very cute too)! Once again, I will probably embarrass him with my public outpouring of admiration, but it is practically Valentine’s Day after all.

I am doing fine, but I do struggle with missing Alex every day. People often ask me how I can talk to groups about Alex without totally breaking down. For the most part, talking about Alex, her inspiring spirit and the lemonade stand is not difficult, it is energizing. It is her legacy, I am thrilled to be sharing it with others and it is very much alive. The real stuff, the every day stuff, her smile, her laugh, the way she knew me so well and how we were so in tune with each other, that is almost unbearable to think about, never mind talk about. When I see a mother and girl about Alex's age together, it makes me profoundly sad to think of what Alex never had -- that carefree childhood. It also makes me feel profoundly sad to think that I will never again have that special feeling I had when I was alone with her. It is weird how that sadness has become a part of who I am and will be with me forever. At the same time, that sadness is important to me, because it means that my love and memory of her is still very much alive. It sounds strange, but I think it is true and I don’t plan on ever giving up that sadness – so don’t try to talk me out of it!

Overall, we are all doing well and manage to meet each day with some amount of enthusiasm.
We are lucky to have so many supportive people in our lives – our families, our friends, and all of you who continue to care and encourage us.

I want to thank you all for sharing the billboard sightings with us. We are trying to keep track of them, so we appreciate your input. Also, don’t forget to spread the word about lemonade stands, lemonade stands, lemonade stands…

Thanks for everything,
Liz

Wednesday, January 19, 2005 10:30 PM CST

.....We now have three sighting of an Alex and Her Lemonade Stand billboard. A non-profit foundation has decided to put Alex's picture on billboards around the country. The billboards say "Raised $1M to fight pediatric cancer including her own....Inspiration---Pass It On."

The first sighting was On I-75 Eastbound near the Art Museum in Toledo, Ohio. If you see one of these billboards let us know where it is.

The next one we heard about is on I-91 South at Exit 27 in Hartford, CT.

Another billboard is located on "L" Stree in Omaha Nebraska.


Dear Friends and Family,

I have so much to tell and will probably forget to share something important, but I will do my best…

I will have to start way back in 2004, with our vacation and Christmas celebrations.
As I said in my last entry, I knew that this Christmas would be a difficult one for our family, so we decided to spend the week of Christmas in Las Vegas with a plan to be at The Grand Canyon on Christmas Eve and Christmas morning. Well, we all wondered when Santa Claus would come and how he would find us if we weren’t home. Finally, after checking every morning leading up to our vacation, Eddie realized that he had not left any cookies for Santa and decided that Santa would probably come if he left him cookies. So, on Thursday night, he left the cookies for Santa (with milk of course); he was all smiles when he woke up Friday morning and discovered that his idea had worked – Santa made a special trip to our house just to make sure that the boys had a special Christmas at home before our trip. Eddie was also thrilled that Santa had come on a school day because he could then tell (or should I say, brag) to his friends that Santa’s first stop this year was at his house!

We started our trip with two nights at the JW Marriott Resort and Spa in Las Vegas. They had generously offered to have us as their guests so that we could attend Holiday Magic, a week long charity holiday event on their property. Ken Henderson from Best Agency in Las Vegas planned the whole event. He also made a huge effort to include Alex’s Lemonade Stand as one of the charities and to have our family come out for a few days. Between the warm welcome by the management at JW Marriott, our absolutely beautiful suite, and Ken’s hard work on behalf of Alex’s Lemonade Stand, we knew we were off to a great start on our vacation. From there we headed over to Caesars Palace, another incredibly generous supporter of Alex’s Lemonade Stand; they had also offered to have us as their guests on our trip, since we never made it out for our planned visit with Alex for their fundraising event. Anyways, they treated us like VIPs – complete with an unbelievable 3000 sq. ft suite, great tickets to see Seinfeld perform, and basically royal treatment. We also had an opportunity to finally meet Mark Juliano, the President of Caesars Las Vegas, who is a terrific supporter of Alex’s Lemonade Stand.

Needless to say, we left Las Vegas feeling very spoiled but reality soon set in as my expert travel planning (and budget) immediately took over. We went from the luxury and lights of Vegas to a remote motel on Historic Route 66, with the closest building about 20 miles away! I was worried that the boys might expect the same accommodations but their reaction to our tiny room, with 2 double beds and a rollaway wedged in the middle, was great— Patrick said “Now this is cozy.”; Eddie was thrilled because the room had a VCR and Karate Kid 2 and 3 on video; and Joey loved the giant bed that all 3 beds made when pushed together. I had picked the motel because they own and give tours of the Grand Canyon Caverns behind the motel. The next morning we enjoyed the hour long tour of the caverns before we hit the road through scenic Arizona for The Grand Canyon.

The Grand Canyon was everything we had hoped it would be. Jay and I had visited before we had kids and we knew that we would take our children there some day. We had hoped to take Alex last summer, but her medical needs were too intense to visit such a remote place. We weren’t sure if the boys would find it as impressive as we did but its size and unique landscape were not lost on them. At first view, Eddie just kept repeating, in that enthusiastic voice “It is sooo big, I can’t believe that’s the Grand Canyon, it is sooo big, I can’t believe that’s the Grand Canyon, …” Patrick said “Now I understand why everyone who comes here says it is indescribable”. Even Joey had a hard time finding the right words as he pointed and exclaimed “eh, eh “(for those of you who don’t know Joey, that is his basic response to everything). We stayed at a lodge in Grand Canyon Park and spent our days driving to different viewpoints, hanging out in the bar at nights (for the air hockey of course), and hiking. We did hit a cold spell, with temperatures in the 20’s during the day. It was quite cold for hiking, but we were prepared with winter clothes. The other complication was that the trails into the canyon were pretty icy and somewhat treacherous at points. We had come so far and we wanted to hike into the canyon so badly, that we decided to go for it. It was the right decision as the temperatures immediately warmed up once we got below the rim of the canyon, and the trail was only icy for about ¼ mile or so. Anyways, we hiked down about 1.5 miles, and then of course had to hike back up. It was hard climbing at parts, but well worth it. I have to say that I was most impressed by Jay – he carried Joey the whole way in a back carrier. What a hunk! I think the boys felt that the hike in the canyon was a highlight of the trip and were especially proud that we braved the icy trails.
Christmas Eve was picture perfect (as a matter of fact, I am posting a picture on the photo page) as we watched the sunset over the Canyon and then had a nice dinner in one of the lodges. Christmas morning we awoke early so we could watch the sunrise over the Canyon; the boys were shocked to learn that there is a Grand Canyon Santa who carefully snuck to the lookout point to leave some bags of souvenirs for the boys. We looked out over the canyon and thought of Alex as we had our quiet Christmas morning together before we headed for our next destination. Just as we had hoped, it felt right that we spent this Christmas at The Grand Canyon – it is beautiful and inspiring, a perfect place to feel close to Alex.

From there we stopped for a night in Lake Havasu, Arizona, home of the original London Bridge, for Christmas dinner and the boys spent the afternoon playing in the sand and throwing rocks in the water. Finally, we headed back to Las Vegas to stay another night at Caesars and see Seinfeld live, which was a huge unexpected treat for us.

By the time we left Las Vegas, we were all ready for home and spent a quiet week here followed by a not-so-quiet New Year’s Eve at our friends The Richters. My parents came for a visit for a few days during the first week of January, which was a great distraction as the boys headed back to school and we headed into an extremely busy month of working, working, working!

In addition to the normal craziness of school for the boys, work for Jay, and life for Joey, we have been absolutely overwhelmed (I am always saying that but it is true!) by the momentum we continue to build for Alex’s Lemonade Stand. As you know, Alex set a very ambitious goal of raising $5 million for childhood cancer in 2005 and we are determined to do our best to make it happen. There are so many exciting things happening that it is hard to even attempt to list them here, for fear of leaving someone out. So, I will summarize with some generally exciting stuff:
We have just leased some office space for Alex’s Lemonade Stand which will allow us to get our volunteers more organized and generally make it easier to have other people help us on a daily basis. The owner is giving us a great deal on this very unusual space and we have already received donated Lemon Yellow paint (thanks John Neal Painting!) quite a few pieces of donated office furniture.

We are working hard to gather contact information on people who want to participate in Alex’s Lemonade Stand Days on June 10 – 12. If you are planning on having a stand or getting involved in some way, please email us so we can add you to our growing list.

Our alexslemonade.com website is in the process of being redesigned pro-bono by a generous web-design firm called LeapFrog . The new website will have the same features as the old but will have some new important features such as a current calendar of events and photos.

We are hearing from groups who want to help every day – students, families, businesses, and corporations are coming up with some great ideas to help us keep Alex’s dream alive. We are still amazed at the kindness and generosity of people who put their time and money into “fighting childhood cancer, one cup at a time..”

Well, Alex’s 9th Birthday came and went so quickly, but not without a lot of meaning. As many of you know, Alex was diagnosed with cancer just 2 days before her 1st birthday; she spent her first birthday in surgery and the Intensive Care Unit. At that time, I thought that her birthday would forever be tainted by that first terrifying birthday but in fact, her birthdays came to have a much more powerful meaning – her survival, her strength, and her courage to live with cancer. Last year, her 8th birthday, was special, but bittersweet, as we wondered if it would be her last birthday and wondered how and if we would celebrate her 9th Birthday. So, the question this year was how to make Alex’s birthday special, knowing that it would be more of the bitter, less of the sweet. The incredible staff at Penn Wynne Elementary School decided, along with our family, that they would dedicate a painting in Alex’s honor on her birthday. The painting was designed by the very talented art teacher Sue Caum , with input from our family. She had the 5th grade students help her paint the huge canvas and present it to us during school on Alex’s birthday. I honestly can not think of a better way to remember Alex – the painting will be hung in the school and it is filled with positive messages, images, and colors that represent Alex’s life….. Dream, Believe, Smile, Care, Enjoy, Make a Difference, Change The World! It made the day feel like Alex’s birthday – a special celebration of her life and legacy.

Later that day, Jay and I met with some of the members of our newly organized Board of Directors for Alex’s Lemonade Stand for a meeting to discuss our plans for 2005. We have asked a group of really dedicated and qualified people to help us move forward with our ambitious plans to grow, organize, and raise millions more. We are encouraged by how much knowledge and direction this group brought us in our first meeting and it was an appropriate way to spend part of Alex’s birthday – planning for the future of Alex’s Lemonade Stand.

I could go on all night, but in the interest of my sleep and your time, I will sign off with a huge thank you -- for your patience, support, and above all else, your friendship.

With love,
Liz

Tuesday January 18, 2005 13:35 PM CST

Hello Friends and Family,

At the risk of sounding totally nutty, I am updating tonight to tell you all that I am not updating tonight.

Here is the short version of the story. As you know, I have been remiss in updating this journal. This is simply a function of not having enough hours in the day to keep up with family stuff and all of the exciting opportunities coming our way for Alex's Lemonade Stand. Anyways, since Alex's Birthday is tomorrow (actually, now today), I was determined to set aside time tonight to write a nice long update. Well, I spent over 2 hours writing about our wonderful vacation in Las vegas and The grand Canyon, our holidays, our busy lives, the happenings with Alex's Lemonade Stand, etc. I was trying to put into words how deeply we miss Alex and how January 18th was always a day to look forward to -- filled with fun and a lot of meaning. Well, just as I was thinking about everything I was having such difficulty expressing, I noticed that it was 12:02 am, January 18 -- Alex's 9th Birthday. I stopped typing and just sat and thought for a minute. Alex's laptop (I usually do my journal entries on it) suddenly gave me a message that the Word program had encountered an error and windows was shutting down. "No problem" I thought, it will recover the document for me when I re-enter the program. Well, of course, that document is not on the computer and my entry is gone forever!

In true Alex spirit, and determined to not let another day go by without updating, I moved to our computer and retyped another entry. This time I typed it directly into the journal, to be sure there would not be problems. Finally, I previewed the journal entry and went to update the journal -- it didn't work! Not only did it not update the page, but I couldn't get back to the entry I had just typed.

I can take a hint! So, in the spirit of myself, I am going to bed. I am following my own philosophy this time-- Make a mistake once and learn from it.. make a mistake twice, you are an idiot (or just overtired)!

I will update again tomorrow night with all the news of the past month.
Thanks again for keeping up with us. We are doing well, more to come tomorrow...
Love, Liz

Sunday, December 12, 2004 11:46 PM CST

Seasons Greetings to friends and family,

We are happy to report that we are doing surprisingly well here. Things have slowed down quite a bit so we have slowed down a bit ( in a good way!).

I know that many of you worry about our family and wonder how we will manage through the holidays-- our first without Alex. Honestly, I was quite worried about the holidays myself; before Thanksgiving I was very anxious about the day and had a tough time even thinking about sitting down to dinner, knowing that I would feel terribly Alex’s absence. We had planned a quiet day, with just the kids here at home and I think that was the right choice. My sister Margaret had stopped in town for a couple of days, which was the perfect distraction, and she needed to get an early train back to New York City on Thanksgiving morning. Eddie really wanted to go to the Thanksgiving Parade in downtown Philly, so he and Joey headed out with me to drop Margaret off at the train station and continue on to the parade. Jay and Patrick stayed back to sleep in a little bit and so that Jay could start the cooking the turkey. Eddie and Joey loved the parade and of course, shared their enthusiasm with me (and everyone around us), which was a great way to start the day. We hung out at home for a good part of the day, ate our turkey dinner, and headed out to Valley Forge to visit the graveyard later in the day. In the evening we visited our friends The Richters for dessert and drinks. All in all, it was a good day, although filled with the bitter sweetness that fills all our days.

So, now we are heading rather rapidly towards Christmas, for which we have some really special plans. We were invited to Las Vegas to attend an event called Holiday Magic at the JW Marriott resort -- they are including an Alex’s Lemonade Stand as part of the festivities and were kind enough to invite us to be their guests for a couple of days. So, since we were scheduled to be in Las Vegas around Christmas, we asked the kids how they would feel about extending the vacation through Christmas to include a trip to The Grand Canyon . They were thrilled about the idea and we started planning. We will be heading to Las Vegas and then to the Grand Canyon for a few days. I am sure that we will have a blast in Las Vegas and The Grand Canyon feels like the perfect place for us to spend our first difficult Christmas together; it is in one of the places that Alex dreamed of visiting. I think I am as excited as the kids are and I am very grateful to the generous people in Las Vegas who are making this trip possible for us.

Of course, with all of the planning for our trip, we have to leave time for the usual Christmas preparations -- tree trimming, shopping, and we are hoping that Santa will visit before we leave. We put up the tree and decorations this weekend. The boys were really into decorating this year and we were sure to include Alex by hanging up her stocking and carefully placing her special ornaments. We all agreed that the tree looks especially beautiful this year and we definitely agreed that Santa can come anytime he wants to now. The rest of this week will be unbearable for the kids as they wait and wonder….

Despite Jay being very busy with travel for work, we have managed to spend some time planning and organizing for Alex’s Lemonade Stand. We are still overwhelmed by how many generous people we have had the pleasure of hearing from == children, schools, families, and businesses have put their hearts and time into raising money and awareness for childhood cancer. It is amazing, inspiring, and just plain awesome! We are looking forward to another incredible year for Alex’s Lemonade Stand. As always, stay tuned for more info on our plans and don’t forget to mark your calendars for Alex’s Lemonade Stand Days from June 10-12th.

As we end 2004, I am truly heartbroken that we will ring in the new year without Alex. It is hard to imagine that the years will go by, the boys will grow up, our lives will continue, but that Alex will remain eight years old forever. In some ways it feels like I am leaving her behind but at the same time I feel like she will always be with me, every step of the way.

On a final note, we would like you all to know that, despite everything, we feel extremely lucky in so many ways -- because of our children, because of all of you, and because we are able to carry on Alex’s memory in such a meaningful way. As Alex once said “I feel lucky for the things I have, not unlucky for the things I don’t have.”

Thank You, Happy Holidays, and Happy New Year,
With love,
Liz

P.S. Obviously, I don’t plan to update until after the 1st of the year, so please check back sometime during the second week of January.

Wednesday, November 17, 2004 9:52 PM CST

Wow!.. November already and heading towards December. We have been so busy that I honestly don’t know where to begin.

We are still adjusting to life without Alex’s incredible presence. -- settling into new routines, keeping very busy with the lemonade stand, and just learning to cope with how deeply we miss her. The boys are doing well but certainly have expressed how much they miss Alex. Patrick is extremely busy with school, clubs, karate, and homework and seems to be dealing nicely. Of all the kids, Eddie especially seems to be struggling sometimes to control his emotions but has meaningful ways of remembering Alex. --he likes to listen to “their song”, talk about things that she liked, and wants to decorate a special box or trunk to keep some of her special things in. Joey is keeping all of us laughing with his toddler antics, complete with his own version of a temper tantrum, which requires an audience and a soft place to “throw” himself down.
Jay and I are dealing about as well as we could expect, but are very much struggling each day with our emotions. I expect Thanksgiving and Christmas will be very difficult but I know we will find a way to include Alex in our celebrations.

Besides our normal routines of school, work, and family, we are busy beyond belief with keeping up with the overwhelming response we continue to get for Alex’s Lemonade Stand. We are so fortunate to have this great work to continue and are committed to continuing Alex’s legacy. Just last week we officially announced that we have reached and surpassed Alex’s goal of raising $1 million for childhood cancer in 2004! We remain so proud of Alex and so extremely grateful to all of the people who have contributed to this success in so many different ways. Incredibly, over $700,000 of this million has been raised by lemonade stands, held by children from all over the country and people from all walks of life. We are amazed at the commitment of volunteers here and across the country who continue to work hard to raise money for Alex’s Lemonade Stand for childhood cancer research. Additionally, our great sponsors, especially Volvo and Caesars Palace, have contributed in a huge way. Truly, reaching Alex’s goal is a reason for all of us to celebrate the effort behind the million and to remember Alex’s inspiring spirit. Alex’s Lemonade Stand is about raising awareness and funds for childhood cancer, but clearly it is also about teaching children important lessons and inspiring others to help make this world a better place.

We are thrilled to reach the $1 million goal for 2004 and we are proud to announce that our goal for 2005 is a very ambitious $5 million! Before Alex died, she knew that she would reach her million dollar goal, thanks to a promise made by Volvo in July. After she knew she would reach her goal, we asked her what her goal for 2005 was -- she told us that it was a “gazillion”, knowing that this was not a real number but wanting to make it clear that she was aiming high. After Patrick reminded her that this wasn’t a real goal, she quickly came back with a goal of $5 million in 2005. So, we are determined, in true “Alex spirit”, to reach that goal.

We are planning the National Alex’s Lemonade Stand Days for June 10 - 12, 2005. We have expanded the national effort to 3 days, which will allow schools and many other groups to get involved. We will be sending out emails to our previous lemonade stand hosts, but if you are interested in participating, it would be great if you could send us an email to let us know. We are, of course, encouraging people to have lemonade stands all year long and are currently receiving requests for info on holding a stand and checks from lemonade stands every day!

Things are really going well …The media continues to embrace Alex’s story and we have spent the better part of the past 2 weeks doing interviews with The Early Show, CNN, Fox News, and MSNBC, and a number of local tv and radio stations. Also, our volunteers and incredible kids everywhere continue to inspire us with their hard work and determination to keep working towards Alex’s goal -- a cure for childhood cancer.

We have so many great opportunities to build on the success of Alex’s Lemonade Stand and we are working very hard to make sure next year is even more successful. In addition to the Lemonade Stand Days we are working with companies who want to participate in their own events and promotions for Alex‘s Lemonade Stand. Also, we are building relationships with corporate sponsors, both new and old, and building our volunteer base. So, stay tuned for future updates on our plans and goals…

Before I sign off, I would like to mention a very special award that Volvo has just announced -- The Alex Scott Butterfly Award. This award is part of the Volvo For Life Awards, which is a fabulous awards program that honors everyday people who do extraordinary things. We first met our friends at Volvo through the Volvo For Life Awards, as Alex was a winner in 2003. In addition to just being incredibly nice to our family, Volvo has been incredibly nice to Alex’s Lemonade Stand as well. In honor of Alex, they have created the Alexandra Scott Butterfly Award to honor a child hero who helps make the world a better place. Each year, the Butterfly Award will go to a child who – like Alex – has shown extraordinary conscience, care and character in helping others. We encourage you to check out the website www.volvoforlifeawards.com and to nominate a child for the Butterfly Award. It is a wonderful tribute to Alex.

Finally, don’t forget that BJ’s Wholesale Clubs and Iams Pet Food are holding a promotion all month (November) in all BJs stores -- for every new Rewards membership, they will donate $10 to Alex’s Fund. We appreciate their support and their commitment to fighting childhood cancer.

Again, I will sign off with a huge thank you to all of you who so patiently wait for updates on this page. I am making a serious effort to start updating at least every 2 weeks so please check back and don’t give up on me! Your support means so much to Jay and me; words could never express how grateful and lucky we feel.

Happy Thanksgiving!
Liz

(You can view the MSNBC video at this link http://www.msnbc.msn.com/id/3036677/
You have to click on the phrase “watch Monica Novotny’s report” in the box that has Alex’s picture.)

Wednesday, October 13, 2004 10:16 PM CDT

Hello and Happy Fall!

It is great to finally get to my update. I realize I am way over due on this but we are still extremely busy. Let me see if I can possibly do justice to the past month in a few paragraphs…

We are dealing with our tremendous loss as best we can. Some days are harder than others, and for me, some weeks are harder than others. I miss Alex so much that it is difficult to even think about her or look at pictures of her without crying. It is overwhelming to know that I will carry that sadness for the rest of my life. Out of necessity, we will learn to live with it, and, hopefully, we will learn to live well with it. I think we are off to a good start, as we are coping and getting through our days and nights surprisingly well. I am happy to report that the boys are really doing nicely and seem to have adjusted in a positive way. It probably helps that Alex is still a tremendous presence in our lives with the daily happenings with Alex’s Lemonade Stand, our stories and memories that include her, weekend visits to lemonade stands in the area and our weekly visits to her gravesite at Valley Forge. Not to mention that we have a poster size photo of her in our kitchen that I can’t bring myself to “put away” (besides I enjoy seeing that beautiful smiling face all day long). Patrick and Eddie are full into the swing of school now and are handling things quite remarkably. Joey, of course, is full into the swing of toddlerhood now and handling me quite remarkably.

Although it is rewarding work, the energy we are putting into continuing Alex’s legacy through Alex’s Lemonade Stand does not take away our loss in any way, as I thought it might. However, I do realize how much it adds to our lives – especially meeting and hearing from people who are inspired by Alex to help the cause. It is personally meaningful to keep her memory alive and most importantly, to keep funding childhood cancer research -- there are many other children still fighting and many, many more who have yet to start fighting.

Trying to keep up with the daily work of Alex’s Lemonade Stand, following up on all of the fabulous opportunities, and attending fundraising events and check presentations is more than a full time job for me. Jay has been working his “real job” like crazy and is also spending his spare time on lemonade stand stuff. Our always hardworking volunteers Alicia and Ligia also devote many hours per week to the lemonade stand, not to mention watching our kids while we attend various meetings and events. They are true friends!

There are so many wonderful things happening all the time with Alex’s Lemonade Stand, and we appreciate every single letter, email, and donation. The response we continue to get from people and corporations from all over the country (and world) still amazes me. We cannot express how it feels to open letters every day from children, schools, and companies who have held lemonade stands in Alex’s honor. Lemonade stands this year have contributed over $600,000 to Alex’s Lemonade Stand Fund for Pediatric Cancer Research – so truly we are fighting cancer, cup by cup. I would like to mention that Caesars Palace recently informed us that they raised an astounding $169,000 in the month of July for Alex’s Lemonade Stand Fund! Thank you to everyone at Caesars for working so hard to make this successful. Also, Volvo Cars of North America just held a nationwide campaign for Alex’s Lemonade Stand and local charities. 330 retailers participated in the Drive For Life; inspired by Alex and hoping to fulfill their promise to her that she would reach her million, the dealers across the country held Alex’s Lemonade Stands over Columbus Day weekend. What an impressive company, truly caring, kind, and dedicated. So, we are moving right along and cruising towards the $1 million mark for 2004. I am sure that we will easily surpass the million very soon and we will be making a big announcement at that time.

The overwhelming support continues and we are very excited about 2005 – we expect to raise many more millions! A couple of upcoming special events ….
In the month of November, BJ’s Wholesale Club and Proctor&Gamble are partnering to sponsor a fundraising promotion for Alex’s Lemonade Stand. For every Rewards Membership purchased at any BJ’s club in the month of November, they will donate $10 to Alex’s Fund. Proctor and Gamble has pledged to support the marketing of this promotion as well as make a very nice donation to Alex’s Fund.
Another event worth mentioning, because of its special meaning to our family, is the first home game for the 76ers on November 5th. As many of you know, Alex was the recipient of a 76ers Hometown Hero award in 2002 and she and Patrick received it together in 2003. To honor Alex, the 76ers are renaming the award The Hometown Hero Award in the spirit of Alex Scott and are giving the inaugural award on November 5th. We are also holding a lemonade stand at the game, in true Alex spirit, and look forward to a very special night.

I could go on and on (and you know I would if I didn’t have to sleep) about the wonderful people we have had the pleasure of meeting because of Alex. In the midst of all the sadness in our lives, I still believe we are very fortunate in many respects. Thanks to all of you for sticking with us, even though I don’t update often enough, I don’t return phone calls, and sometimes take too long to answer your emails. We know you care, and believe us, we are forever grateful for it…

Gratefully,
Liz

Wednesday, October 6, 2004 5:18 PM CDT

Hello friends and family,

We are thrilled to announce that Volvo Cars of North America is sponsoring a national fundraising effort for Alex's Lemonade Stand on October 9 and 10th at all participating Volvo Dealers(most dealers in the country). 300+ dealers across the country are participating in this meaningful event. All participating dealers will be hosting Alex's Lemonade Stands and participating in the Volvo Drive For Life. For each test drive, Volvo dealerships will donate $10 to a local charity and some dealers have selected Alex's Lemonade Stand as the beneficiary of the Volvo Drive for Life.

Shortly before Alex passed away, Volvo cars had pledged to take her over the $ 1 million dollar mark for 2004. We, of course, shared this with Alex and she knew that she would easily reach and surpass her goal. For this reason, the event this weekend is very meaningful -- it is the fullfillment of a promise made to Alex; every participating Volvo dealership is committed to making this happen. Vic Doolan, the CEO of Volvo Cars of North America, was very touched by Alex and is the driving force behind this event.

We are posting this message to urge you to visit your local Volvo dealership this weekend -- you can make a donation to the lemonade stand and test drive a Volvo for charity. Please pass this along to your friends -- we are determined to make this a success!

For more info visit: www.volvoforlifeawards.com

Thank you!
Liz and Jay

Monday, September 13, 2004 0:53 AM CDT

Dear Friends and Family,

A quick note--- Volvo will be supporting Alex's Lemonade Stand during Volvo Drive For Life Days October 9-11, 2004. Volvo has been a big supporter of Alex's Lemonade Stand for several years and their support continues this Columbus Day Weekend. They will be holding lemonade stands at many dealerships nationwide and promoting the events with lots of publicity. Stop by a dealership near you and show Volvo that you appreciate them supporting Alex's Lemonade Stand.


Thank you all for your patience with my updates, but we have been busy as usual here.
We spent the last couple weeks of summer enjoying the “calm before the storm” as we head into a new school year and the daily schedules associated with it…

Obviously, we continue to miss Alex like crazy. Her beautiful smile is something that I picture in my head several times a day and it makes me smile and cry at the same time. I miss everything about her – physical things like her laugh and her voice, everyday things like how she loved to go shopping with me and how we loved to read together, and emotional things like her constant companionship and friendship. I know that I will never replace her love and spirit but I do believe that it lives on in all of us who loved her, admired her, and were inspired by her. Although we will forever miss her, we remain grateful for her life and legacy.

On a lighter note, we did manage to get away for a couple of days before Labor Day as we took a long promised trip to Washington D.C. to visit with some friends and family and take in the sights. The first night we arrived we went to dinner at my cousin’s house and really enjoyed visiting with her, her husband, and children. Thanks Sarah and Steve! On our first day in DC we went to The Spy Museum, (at Patrick’s request), and had a fabulous time. We met up with another mom, Jennifer Click, and her son Evan and daughter Carolyn, who is currently fighting neuroblastoma and looks fantastic. This “super mom” organized a lemonade stand in her town on June 12th and has been a great supporter of our family and Alex’s Lemonade Stand. When Alex died, she drove 2.5 hours in the pouring rain with her children to attend Alex’s viewing, only to get right back in the car and drive home. Anyways, it was really nice to spend some time with her and her cute kids at the Spy Museum (which I highly recommend, by the way). On our whirlwind trip we also visited with our great friends Mike and Allison, their daughter Olivia, and Mike’s parents Angela and John. Jay and Mike have been friends since kindergarten and of course, our visit was great, but way too short. We always enjoy seeing old friends, but it leaves us wanting more. On our last day in D.C. we visited the National Mall, where we took a long walk through the FDR Memorial (a perfect tribute to this incredible man), the Lincoln Memorial (one of my personal favorites), the Korean Memorial, and the WWII Memorial. Finally, we headed home, after a short but sweet tour of “D.C. and friends”.

Other than our trip to D.C. we have been doing usual family stuff...socializing with friends, soccer games, karate, school activities, etc. as well as regular trips to Valley Forge to visit Alex’s grave. Jay has been taking good care of the gravesite and we have all helped by planting flowers and spreading grass seed. The deer eat every flower that we plant, but it comforts us to know that they are “visiting with Alex” nightly. Before Alex died, I did not think I was someone who would be regularly visit a gravesite, but I do feel a need to visit, as it makes me feel physically closer to her. We do love that park – which is a pretty good thing since we purchased a family plot with the idea that Jay and I would be buried there alongside Alex. We have room for one more and are taking bids for the last plot (just kidding!).

The boys started school on Tuesday; Patrick is a big 5th grader and Eddie is a big 1st grader (at least compared to kindergarten). They both seem happy in their new classes and are doing extremely well in all ways. The night before and the morning of the first day of school were very difficult as thoughts of Alex entering 3rd grade were always nearby. However, the boys were excited and we certainly were happy and proud as they headed off on the first day. We are hopeful that they will continue to do well and grow happily this year.

Alex has truly left us a gift (and a whole bunch of work!) with Alex’s Lemonade Stand. We are extremely busy with daily emails, phone calls, and donations from people who want to keep her dream and memory alive. My days and nights are filled with phone calls and emails from businesses and individuals who want to help in the fight against childhood cancer. Jay continues to amaze me by working hard at his “real job” and working tirelessly at night for Alex’s Lemonade Stand while managing to spend time with the boys and me. Our unbelievable volunteers Alicia and Ligia are also working hard and helping us every step of the way -- I am so proud to call them my friends. Every day is full of opportunities for us to increase awareness and funding for childhood cancer research and we are not stopping at $1 million! We will easily surpass $1 million after the Volvo lemonade stands on Columbus Day weekend at all Volvo dealerships. We plan on raising many, many more millions through Alex’s Lemonade Stand and will continue to use this money wisely, making children with cancer who are running out of treatments and time our first priority. Thank you all for your support and hard work; we honestly cannot express how grateful and inspired we are by your generosity.

Finally, we are still recruiting TEAM ALEX members for the Parkway Run/Walk to benefit Oncology Research at CHOP on Sunday Sept. 26th. We are asking anyone interested in coming out to support the event in honor of Alex to notify us via email that you would like to be counted on TEAM ALEX so we can add you to our figures for TEAM ALEX shirts and bandanas. You should register online at www.parkwayrun.com as an individual (we are not registering as a team as this category is only for competitive teams of 5 people). I will be emailing TEAM ALEX members prior to the race to let you all know where and when we will meet the morning of the race. This is a fun event – you can walk the 2K, run the 5K, or simply volunteer to work at Alex’s Lemonade Stand – any help is appreciated!

I will close with a poem we received from a local family who lost their 15 year old son to neuroblastoma. I thought it was perfect.
With love and gratitude,
Liz


A Measure of Life by Marjorie Wright Miller
The elm lives on for half a hundred years
Or more, a rose but a single June;
No need to wish it were not so; tears
Of regret can never change the tune
Of Earth’s mysterious song; she measures time
In beauty, not by the numbered hours she lasts,
Not by heights to which a tree can climb,
But by the sheltering shade that it casts;
The smallest flower that breathes but a day
Distills its fragrance into sweet perfume,
Garbs itself with grace in bright array-
Exquisite, brief intensity in bloom.
Whether the notes of life are short or long,
From end to end what matters is the song

Sunday, August 22, 2004 11:24 PM CDT

If you don’t yet have a copy… Alex and The Amazing Lemonade Stand is now on sale at barnesandnoble.com for 30 percent off.

Dear Friends and Family,

It is hard to believe that it has only been three weeks since Alex died peacefully in our home. Our lives have changed so dramatically and permanently that it feels like a lifetime ago.

We are missing Alex terribly-- more and more each day. We have been visiting Valley Forge Park and Alex’s gravesite at the Valley Forge Park cemetery a few times a week, which is a great way to spend time as a family and enjoy feeling close to Alex. The park has miles of beautiful bicycling, running, and hiking trails as well as picnic and historic sites. At this time, the boys are doing pretty well and I think they are handling things appropriately for their ages. Patrick is obviously very sad when he talks about Alex dying and how much he misses her but he is comfortable talking about good times and memories, which we encourage, of course. Eddie is a little harder to read but I think he is doing fine – he has asked if we think she is happy and he enjoys our trips to the cemetery to plant flowers and “visit with Alex”. Joey is doing fine, but is definitely clingier (if that is possible!), although he is just 18 months old he must feel the loss since he spent so much time with Alex. Honestly, I think we will not know how this has affected them until they are older, but I can only hope that the loss will ultimately add to our lives by making us stronger, more compassionate, and more determined to live good lives – all lessons we learned from Alex.

Jay and I are doing okay; we are missing Alex more and more each day but are managing to make the best of things. Jay is working, getting ready for his busy work schedule in the fall, and devoting his spare time to the family and Alex’s Lemonade Stand. I am also keeping busy, enjoying the last weeks of summer with the boys, spending weekends as a family, and devoting my spare time to Alex’s Lemonade Stand (are you seeing a pattern here?).

Sometimes I think about Alex and I just ache inside and feel so profoundly sad for her life, her suffering and the unfairness of it all; other times I think about her life and it makes me feel so wonderful and grateful for the person she was, all that she experienced, and the incredible legacy she has left us to continue; then again, I think about her later and miss her so much and feel overwhelmed by the fact that I will live the rest of my life without her by my side; still other times I remind myself that she had a good life, full of love and laughter, and that her death was peaceful; of course, all of this is all mixed up with the “normal” feelings of guilt, grief, anger, etc.. So, really, the fact that I can get up each day and smile, laugh, and generally appear “normal” (I think, although I may need a second opinion on that) is a major accomplishment!

So, the bottom line… we are missing Alex constantly but moving forward with the rest of our lives…

Which begs the question – What is next for us? Obviously, we are gearing up for the start of school in two weeks. I think it will be good for the boys to get back to school, but it will be difficult at first. In addition to school, Eddie will be busy with soccer and Patrick will be busy with karate. Also, both boys are hoping to take music lessons – Patrick wants to continue the French Horn and also take piano while Eddie is interested in learning how to play the guitar. As for Joey, well, he is hoping to increase his vocabulary (you will all be happy to know that one of his only words is “lemonade”) and we are all hoping that he learns how to walk down the stairs without falling. As I mentioned, Jay has a very hectic fall schedule for work so he will hopefully be selling tons of books. I will be adjusting to quiet days at home with Joey and I plan on catching up on some overdue household projects as well as lemonade stuff.

We are more committed more than ever to continuing Alex’s amazing work through Alex’s Lemonade Stand Fund. We are receiving donations daily and will, without a doubt, exceed Alex’s goal of raising $1million for pediatric cancer research in 2004. Thanks to all of you for your support of Alex’s cause – whether you have held a lemonade stand, made a donation, or simply told a friend about Alex you are making a difference. We are working closely with Children’s Hospital of Philadelphia to make sure that the money from Alex’s Fund has both immediate and long term impacts on the lives of children with cancer. Already the money she has donated has made a positive difference in the number of children enrolled in and benefiting from clinical trials.

Many exciting opportunities have come our way to expand, improve, and continue to build on what Alex started. In the next month or so we will be setting goals and making plans for Alex’s Lemonade Stand 2005. This includes, of course, a national day for Alex’s Lemonade Stands across the country as well as number of other initiatives, some old and some new. We will continue to sell and market Alex and The Amazing Lemonade Stand as a wonderful way to empower kids and encourage them to hold lemonade stands for Alex’s fund. Also, the Alex’s Lemonade Necklace continues to be a huge success thanks to ElyseRyan Jewelry and Bill Selig Jewelers; we recently received a check for Alex’s Lemonade Stand Fund from ElyseRyan for $10,000. Thank you Elise and Annette for working so hard! Wonderful families, schools, clubs, and businesses all over the country continue to hold lemonade stands and other fundraisers to support Alex’s Fund. We will build on all of this and are working on a number of new fundraising ideas that we share as soon as we know the details.

Finally, our family is participating in the Parkway Run here in Philly on Sunday, September 26th. The 5K run/ 2K funwalk is a yearly event that benefits oncology research at CHOP, (for more information go to www.parkwayrun.com). We are trying to assemble a “Team Alex” of at least 100 supporters to run/walk the race in her honor. Patrick and I will definitely be running but we haven’t decided whether Jay should walk with Eddie and Joey or run with us. We have enjoyed participating before and last year we even held a lemonade stand at the race. It is always well organized and sponsored by Four Seasons of Philadelphia, with a full breakfast following the race. If you are interested in joining “Team Alex” please let us know by email at jay.scott@verizon.net. (We won’t make you come to training sessions or anything – it is for just for fun and a good cause.)

Thank you again for your support and kindness over all of these years, especially the past few weeks. We are forever grateful!
Love, Liz

P.S. I have finally posted some new photos in the photo album.

Friday, August 6, 2004 5:57 PM CDT

To all of our family and friends,

We are so grateful for the outpouring of support and condolences we have received this past week. The services were the perfect tribute to Alex and the number of people who worked hard to make them come together is itself a tribute to Alex's incredible life.

We managed to get through this week pretty well (with a lot of help) although the burial was very difficult for me. I was suddenly overwhelmed with a feeling of panic when I thought about leaving Alex there and going home without her. Even this morning when I thought about it, my heart started to race again. So, with something to prove to myself, we went back to visit the cemetery today and it was really nice. We planted a couple of flowers and cleaned up the pots from all of the flowers left yesterday. We were thrilled to see that some deer had been visiting Alex last night as many of the flowers had been eaten. When Patrick spotted two baby deer roaming through the cemetery, snacking on grass and flowers, I remembered Alex asking to go hiking at Valley Forge Park (that is where the cemetery is) so that she could see baby deer. Needless to say, it made me feel so much better -- it is a beautiful cemetery.

We are ready to face real life now but know that the times ahead will be very difficult as we miss Alex more and more each day. We will be spending a lot of time with the boys, making the most of the rest of the summer and enjoying some outdoor activities.

We are committed more than ever to raising money for pediatric cancer research through Alex's Lemonade Stand. I feel so lucky to be able to continue what she started -- it will be a meaningful way for me to feel like I am still helping her.

I will continue to update the webpage regularly, although I am not quite sure if I will have much to say (like that has ever stopped me before!)

I would like to share with you all the Eulogy that Jay and I gave at Alex's funeral. Many of you have never met Alex and I hope it will give you a better idea of the special girl she was..


Our Alex....

Many of you know Alex as a courageous cancer advocate, a hero, the lemonade girl who was an inspiration to millions around the world. To us, she was all of these things but so much more… We would like to share with you the Alex we know… our beloved little girl.

From the beginning, Alex did things her way – she came into the world in a hurry 8 ½ years ago, arriving more than a month before her due date. The doctor and nurse prepared us for the fact that she would probably be underweight and would most likely have to stay at the hospital for a few extra days – well, we were all surprised when she weighed in at 7 lbs. 2 oz and left the hospital with us 24 hours later. Looking back, I think we should have known right then that there was something special about our girl….

• Alex was bright and smart. She had a vast knowledge of medical terms and kept close track of her medications. She always knew the names and dosages of her medications, as many as 6-8 pills at a time. Believe me when I tell you she always checked on us.
Alex often surprised us by knowing unusual facts… For example, she was quick to offer an accurate explanation of what a ficus plant is to her older brother Patrick when he came across the word and wondered aloud what it was; she would sometimes chime in with a solution to a tricky math or word problem; and she seldom came across a word that she did not know the meaning of.

• Alex was protective. So much so that she earned herself the nickname “mother”. Her constant watching over of her brothers and us was most often accompanied by loads of advice, phrased in an adorable way “I really don’t think I would do that if I were you…” or “Do you think that is such a great idea?” or, my personal favorite, “ I’ve told you a million times not to do that!”

• Alex was determined. When her younger brother Joey was born someone sent us a baby swing. I was trying to put the swing together and got very frustrated because there were no directions included. I left the room and said “I give up, I can’t put this darn thing together” When I returned to the room some time later boy was I surprised that Alex had the swing put together. She said “I just need a screwdriver to tighten the screws.” I said to her “how did you get the swing together” Alex said to me-“you should never give up, it’s never good to give up”

• Alex was funny. My sister Sue was recently visiting and we were trying to pick a movie to watch with Alex. Sue recommended a movie but then quickly said, “actually I don’t think it is a good idea”. When Alex asked her “why” Sue said, “Well, it is kind of depressing”. Alex immediately turned to look at her and said “trust me, I can handle depressing”.


• Alex was confident. She believed she could do anything; even it was a physical challenge for her or an obstacle to overcome. She often said that if she could just get an audition for American Idol, she could definitely make it into the top 10. She was also confident that she was capable of defending herself and others against any dangers, after all, she would say, “I know karate”.

• Alex was courageous. Despite often struggling with pain, fatigue, and other side effects, Alex rarely complained. As a matter of fact, about two weeks ago she told me very emphatically, after hearing me answer another inquiry about how she was feeling – “tell them I am fine. I am fine”. She showed this courage everyday, insisting that she was fine, always telling us not to worry about her.

• Alex was wise. Several years ago I gave her the suggestion that she might want to try walking with the help of crutches because it might allow her get around faster. Without hesitation she said “ haven’t you ever heard the story of the tortoise and the hare?” When I paused to think, she looked me in the eye and said with a smirk on her face “slow and steady wins the race.”

• Alex was thoughtful and kind. I will always remember this most recent Mothers’ day when she secretly bought me earrings, with the help of my mother. When I woke up on Mother’s day, there she was at my bedside with a huge smile on her face and the beautiful earrings in her hand.

• Alex was a girl with plans –– she was looking forward to showing her baby brother Joey around the Please Touch Museum this summer; she planned on being a flower girl for the first time next weekend at her Aunt’s wedding; she was determined to attend the first day of third grade and just last week asked Liz to make sure she had a motorized wheelchair so she could keep up with her friends in third grade; She planned on learning how to swim, cross stitch, and walk again.

• Alex was a girl with dreams – She wanted to be a world traveler and she dreamed of going to the Grand Canyon with the family and to Paris with me. She dreamed of attending college but living in an apartment so she could have as many pets as she wanted; she promised her brother Eddie that, even though she wouldn’t let him live with her when they grew up as he suggested, he could visit as much as he wanted as long as he called first); She wanted to marry her prince charming and have a family, she even put her plans of becoming an astronaut on hold because she thought she would miss her kids too much on her long trips to outer space; She dreamed that doctors, with her help, would find a cure for childhood cancer.

• Alex was an inspiration – Her bravery and composure throughout her life inspired all of us to be stronger, better people. Her efforts to raise money and awareness for childhood cancer while she fought so terribly against her own cancer inspired all of us to help her cause. Her love of life inspired all of us to love our lives.

• Alex was loved. Loved by us. Loved by her brothers, Patrick, Eddie, and Joey. Loved by her Grandparents. Loved by her Aunts, Uncles, and Cousins. Loved by her friends. Loved by her Doctors and Nurses. Loved by people everywhere who were inspired by her will to live.

So many times this week, we have heard people say that Alex lost her battle with cancer. We believe that this could not be farther from the truth.
Alex won her battle in so many ways … by facing her cancer everyday but still managing to smile; by making the most of every moment; by never giving up hope; by living life to the fullest; and by leaving an incredible legacy of hope and inspiration for all of us.

We are proud of her; We love her; We are grateful for her life; We will miss her.

Monday, August 2

8/2/2004

Viewing/Wake:
Wednesday, August 4th from 2-4pm and 6 - 9 pm
Chadwick and McKinney Funeral Home
30 E. Athens Avenue
Ardmore, PA 19003

Funeral Services:
Thursday, August 5th, 11 am
Church of The Redeemer
250 Pennswood Road
Bryn Mawr, PA

Funeral will be followed by burial at Washington Memorial Chapel & Cemetery,
The National Monument at Valley Forge, Valley Forge, PA


8/1/2004
At about 4 pm today Alex passed on peacefully with us holding her hands. We thank you for your support.

Liz and Jay and family

7/30/2004
A quick update.

We regret to tell you that Alex's health continues to deteriorate. She had a very difficult night which continued today. Today she went back and forth from a semi-coherent to a somewhat coherent state of mind. We will try to post a more complete update as soon as possible.

Alex has amazed us so many times over the years with her ability to keep her fight against this horrible disease going, but we agree with her doctor that we are out of surprises.

Patrick & Eddie will arrive home tonight from vacation in Massachusetts and we will enjoy our time together as a family.

We would like everyone to know that we have appreciated all of your support over the years.

Sincerely,

Jay & Liz


Sunday, July 25

Dear Friends and Family,

I would like to share with you something that has been weighing heavily on my mind lately…

For sometime now, I think I have conveyed to you all that Alex has not been doing well. However, lately as I have been talking with some of you on the phone, I get the feeling that, although I give a lot of details and info in my entries, I have somewhow not painted a true picture of what is happening with Alex.

For years, we have stayed generally positive and hopeful --- positive in our approach to dealing with the difficult fact that we were told years ago that the chances of Alex beating this disease were slim to none but hopeful that we would find a treatment that would give her some good quality of life for as long as possible (with, of course, the thought in the back of our minds that maybe she would get lucky enough to try a new drug that would cure her altogether). Over the past four years (since we were told that she could not be cured), Alex and our family have enjoyed some of our best times and we are forever grateful that we didn’t give up, Alex’s doctor didn’t give up, and most importantly, that Alex didn’t give up!

At this point, it is obvious to all of us who see Alex everyday that she is not going to get better; her very best days are behind her and we must move forward hoping to give her some more good times but knowing they will be short lived. We have accepted the fact that her best times are behind her and, that with each setback, she is slipping away a little more. As I have told you all before, her cancer is now growing rapidly between chemo cycles, with only one week without chemo you can see the amount of growth in her belly and she obviously becomes uncomfortable. She is so aware of her body that she actually told Dr. Maris last week, after a delay in starting her chemo due to her poor counts, that she needed to start her Temador to feel better. So, despite her poor counts, we started her on her chemo and of course, it did make her feel better in some ways, but her counts have been hit really hard, causing other problems like fatigue and mouth sores. Her counts have now become a real challenge to treating her since she is already getting transfused several times a week and is at very high risk for serious infection with her white count staying low (and I mean low!) for so long.

Having said this, we will continue to treat her with anti-cancer drugs for as long as she wants to be treated and as best we can with her count issues. She has made it clear that she will not give up, still hoping to find something to make her better. I admire her fighting spirit and determination – she really is amazing. We are waiting on her counts to come up again so that she can start another round of chemo, although we are still not sure if we will continue with this course of treatment or explore other possible treatments. We would like to get her on a treatment course that will give her more time away from the hospital. The past couple of weeks have been particularly difficult for her, with long days and nights. Most of her time is spent resting, reading with me, and playing on her computer. She is not having any real pain, just a feeling of “fullness” when her tumors bulk up. She still manages to get out for short trips – with me for a short shopping trip, with Jay for water ice, and basically anyplace she wants to go. Even these short trips have become exhausting for her but we still encourage her to get out with us as much as possible.

It seems that lately, her short periods of improvement are followed by longer stretches of deterioration. We are faced now with the fact that each stretch of deterioration leaves her weaker and more fragile and less likely to benefit from treatment. However, we will keep hoping for those periods of improvement to give us as much time as possible with her. We truly do not know how much more time we have with her -- it could be a weeks or even months -- we just know that she is obviously losing her battle.

On a final note, the boys do not know how serious Alex’s condition is or that we do not feel that she has a lot of time left with us. When we feel we need to share this with them, we will… so please be sensitive to this when discussing Alex in front of them or in front of other children who might say something to them.

Overall, things are emotionally difficult -- just not knowing what tomorrow will bring, but please do not think that we are sitting around feeling badly all day (that is just way too boring and depressing). We are living our lives as best we can and trying to make sure that Alex does the same.

Patrick and Eddie are having a blast in Cape Cod now with their grandparents and cousins; they are probably coming home this week but may decide to stay longer. Joey is home with us and is just doing wonderfully. Alex is a true trooper and really does not complain about much, except feeling tired. We are hoping to get to a *girlie* movie before the boys come home. Alex does miss Patrick (and Eddie I suppose, although she hasn’t said so) and is really looking forward to seeing him again.

Just last week, Alex hit the $700,000 mark for her fundraising for this year – we know she will reach (and probably surpass) her goal of $1 million for pediatric cancer research in 2004. Thank you all for your generosity…

We appreciate your love and support, as always.
Love, Liz

Wednesday, July 14, 2004 0:29 AM CDT

Dear Friends and Family,

Well, once again I have waited so long to update that I do not know where to begin…

We are still very busy with Alex’s demanding schedule, lemonade stuff, and family life in general. Looking back on my last entry, I would say that things are basically the same but she has had some setbacks this week. When I last updated, she was in the middle of her second round of oral Temador/Irino and we were hoping to see some signs that it was working (specifically her belly getting smaller). We did see some improvement in her belly, although not as dramatic as we saw after the first cycle. However, her mood was good and she reported that she was feeling well for most of her week off of chemo. Unfortunately, her counts have been suppressed quite drastically and she is requiring 3 platelet transfusions a week and 1 blood transfusion a week. She is also requiring Neulasta (a growth factor for her white blood count) in between rounds of chemo to help her white blood count recover. So, needless to say, we have been spending quite a few days at the hospital but we have managed to avoid overnight stays thus far.

The counts have probably been the most obvious side effect from the chemo but she is having some other issues at the moment. She was successfully treated for a common GI infection (C-Diff for those who want the medical details) most likely caused by the antibiotic she must take everyday as part of her chemo protocol. Things seemed to be going okay last week, but over the weekend she took a turn for the worse, complaining of stomach upset, looking very bloated, and finally throwing up on Sunday night. She has not vomited since but has not been able to eat or drink more than little bits at a time due to a “full” feeling in her stomach. Also, over the weekend her bilirubin, once again, went up-- most likely due to progressing tumors in her belly or liver. So, here we go again… it appears that the chemo was working to some extent and it may still be, but we are worried that the tumors in her belly are growing again. She has started on another round of the oral Irinotecan but we are holding off on the oral Temador, hoping to give her low counts and upset stomach more time to recover. The plan, as of tonight, is to wait and see how things go over the next couple of days. If she continues to have these vague “belly symptoms”, she will probably have a scan to check things out; if things improve, we will continue with the chemo, adding on the Temador next week. Again, we wait and hope for the best.

Her mood has been remarkably good up until this latest setback. Last week she was in a good mood and feeling hopeful about this new chemo working against her tumors. She knows her body so well, and today she seemed worried about these new symptoms – repeatedly asking me what I thought was wrong and obviously looking for some encouragement. I told her that I thought she would start to feel better soon and that we were going to see Dr. Maris tomorrow -- he has a very reassuring way about him that usually eases her worries. We all try so hard to stay positive for her and we do not feel it is in her best interest to know everything that is happening in her body right now. We want her to live with hope and happiness as much as possible.
If her stomach troubles magically disappear, I think she will be feeling pretty good and I know she will be ready for some fun – hopefully in Las Vegas! Last week we received a wonderful phone call from Caesars Palace in Las Vegas ; they are opening a lemonade cart on the resort’s new five-acre Roman Plaza and donating the sales (no expenses deducted) from the first month to Alex’s Lemonade Stand Fund for pediatric cancer research. This is an incredible opportunity for the Fund to continue to climb towards Alex’s $1million goal (she is over $600,000 now). The President at Caesars as well as the entire team working on this project have been so generous and accommodating, they are making every effort they can to raise money for Alex’s cause. In addition to the donations from the first month’s sales, they planned a huge ribbon cutting for today, with a special “lemonade auction for charity” by Sam from The Apprentice. Our family was scheduled to attend and they had made travel arrangements, complete with luxury suite, limo service, tickets to Celine Dion and other attractions, etc. We were scheduled to fly out yesterday and return on Thursday. We even had the luxury of traveling without Joey, as my “Super Sister” Sue came to my rescue by coming to Philly to pick him up and bring him on her vacation to Rhode Island with my parents and her 4 children – thanks, Sue, you are incredible! Anyways, things didn’t work out as planned and by Monday morning, Alex was not feeling up to traveling. So, we had little hesitation about canceling our plans and the people at Caesars could not have been more understanding. They assured us that they were committed to raising money for Alex and also assured us that they will welcome us for a visit as soon as she is feeling up for it. The grand opening was today, complete with the lemonade auction – they had already raised over $25,000 before they opened for business thanks to some large donations from some very famous celebrities. We are so grateful to Caesars for making this happen! We will be sure to let you know how much they raise over the next four weeks.

There are still donations coming into Alex’s stand daily. Hundreds of children across the country have held stands for her cause; it is really moving to receive the letters and photos showing how much caring and effort they put into their stands. Other exciting news – Alex drew the winning raffle ticket for the 2 year lease on the new Volvo S40 and she was thrilled to see that it was Karen Nemeth, the school librarian at our own Penn Wynne Elementary School! Also, last Friday CHOP sponsored and staffed Alex’s Lemonade Stands in various locations throughout the hospital. It was a hospital wide effort – complete with “Thanks Alex” t-shirts for all oncology staff as well as other staff members throughout the hospital, cards signed by staff and patients, and decorations and signs throughout the hospital. The stands were staffed by various hospital employees and raised an impressive $46,000, which included a $20,000 donation from Wawa. Alex, along with Volvo dealers of Delaware Valley, and Wawa, presented checks from Alex’s Lemonade Stand fund to the oncology researchers for a total of $200,000! The money will be applied directly to specific research projects that will help doctors to find better treatments and to improve survival rates for children with cancer. We are looking into funding other worthwhile research projects at childhood cancer centers across the country and will be making several more grants throughout the year. Thanks to all of you for making it possible and making a difference.

We continue to hear from various organizations, individuals, and corporations who would like to get involved in Alex’s cause. Next week, the Philadelphia School System will host Alex’s Lemonade Stands in 30 of their elementary schools. Voluntarily staffed by summer school students, the stands will be a great way to raise money while empowering kids to help others. We love to see other kids learning that they can make a difference in this world!

The rest of this week should be quiet, with Joey not returning home until Thursday. We are enjoying some time without the always energetic Joey but we sure will be glad to have him back home again My dad will meet me in New Jersey to “exchange” kids – he will return Joey to me in exchange for Patrick and Eddie who will be spending a couple of weeks (at least) visiting with grandparents and family in Connecticut. Alex will be headed to CHOP for her usual Wednesday and Friday transfusions and then we will enjoy a quiet weekend with Aunt Erin and Uncle Kevin visiting from Boston. Next week will be a repeat of this week with chemo, frequent transfusions, etc. Here’s hoping that the stomach troubles will be gone by my next update…

Thanks again for your patience with my updates. We truly appreciate your concern and support.

With love, Liz

Tuesday, June 29, 2004 0:20 AM CDT

THERE ARE SEVERAL ALEX LEMONADE STAND EVENTS COMING UP. TO FIND AN EVENT NEAR YOU, PLEASE EMAIL LIGIA RICHTER AT ligia@richteralsi.com

Dear Family and Friends,

I am happy to report that things have been going pretty well here…

Alex has been doing okay --- pain free and smiling a lot. She is now half way through her second cycle of the oral Temador/Irinotecan combo. She is extremely efficient at taking pills (she takes several daily medications) so it has been pretty easy to manage her chemo at home; here’s how it works:
Alex takes an antibiotic pill to prevent the nasty diarrhea side effect twice a day everyday all month, and she takes a Zofran pill for nausea each day she gets chemo.
The first five days of the chemo cycle she takes 5 Temador capsules, followed by the oral liquid Irinotecan (mixed with 20 cc grape juice) an hour later.
Day 6 and Day 7 she gets a break from all chemo (staying on the antibiotic only) and on Day 8 she starts up again with only the Oral Irinotecan for 5 days.
She then gets 1 week off of chemo (depending upon how her counts recover) before she starts it all again.

She is not having much stomach upset with the new chemo but her counts have clearly been suppressed; she now requires platelet transfusions three times a week (she was getting them twice a week before). Her red blood count and white blood cell count were also significantly lower last week, but she managed to stay fever free so far and she recovered enough to start her chemo on schedule (yeah!). So, we have been going to the hospital for platelets on Monday, Wednesday, and Friday as well as blood transfusions on Fridays.

I told you all in my last update that her belly was amazingly soft and flat after completing just one cycle of the new chemo combo but unfortunately, with just one week off of the chemo, her belly filled up again, presumably with fluid. We are not sure what is causing all of this fluid retention, but the doctors are guessing that it is from cancer progression between rounds of chemo. Overall, I think she has improved in all ways over a month ago – mood, pain, and energy level – but her belly is still very full right now. I am hoping to see it get back to “flat and soft” in the next week, a sign that the chemo is helping. If we are really lucky, it will get flat and stay that way on her week off, which will surely be sign that we are really helping things with this new chemo.

Despite all of this medical boring stuff, we have been enjoying our summer quite a bit. We headed to Ocean City with our friends The Kopps last weekend and had a perfect time --- beautiful weather, nice house, and good company. On Monday, my brother Jack, his wife Lisa, and their two girls Katie and Bailey arrived for a visit later in the day, after we were home from the hospital. The kids and I spent Tuesday with them and visited the Constitution Center in downtown Philly before we all met Jay for dinner after work at The Hard Rock Café. On Wednesday we had a short (but sweet) visit with Jack and family before they headed out and we headed into CHOP for platelets. On Thursday, Alex and I went to New York to appear on Fox News’ Your World with Cavuto. We managed to squeeze in lunch at Planet Hollywood and some shopping before we appeared on the show in the afternoon and headed for home in the evening. On Friday, we were back at CHOP for platelets and blood, but this time had company – our friends Susan (formerly Susan Mattera of Windsor) who works at CHOP, her sister Annette ( my former boss from my teen years) who was visiting from Connecticut, and Elise Rosenstock of ElyseRyan designs, who designed the beautiful Alex’s Lemonade Necklace with Alex’s help. We had a really nice visit as they entertained Alex with their fussing over her while Alex and Elise made a special Alex’s Lemonade Necklace together. Thanks for making our “hospital day” much better! Well, the week’s fun didn’t end there as we headed over to that same Susan’s house on Saturday night for a great time visiting with her family and friends for a few hours. Finally on Sunday night, we were invited to our friend’s house for an impromptu BBQ and some more socializing.

It is incredible that Alex was able to do all of this, despite having so much cancer in her body and being very transfusion dependent. (of course, she relaxes on the couch playing spider solitaire for most of the time that we are home but she needs her rest!). She is still not getting around at all on her own but is expressing interest in starting up her physical therapy again so that she can build her strength up for 3rd grade – she wants to be able to walk again “even if it is only around the classroom”. It will be difficult as she is so skinny, very de-conditioned, and she is having a lot of bone problems in her legs, but…
if she wants to do it (and her body cooperates), she probably will! Such determination….

Our fundraising efforts continue with more lemonade stands happening all summer across the country as well as locally. For those of you “Penn Wynners”, we will be selling lemonade at the Summer Hummers at Wynnewood Valley Park for the next four Thursdays (starting July 1st) – these are free concerts at the park featuring great live music and a lot of community spirit (and some really delicious lemonade!). With donations coming in daily, she is almost halfway to her goal of $1million in 2004 and we are going to do everything we can to help her reach it! Thanks to all of you for your continued support of her fundraising efforts, we are truly lucky to be a part of this amazing effort!

One final business matter – for those of you looking for our book Alex and The Amazing Lemonade Stand, you can order it on sale now from Barnesandnoble.com (they are running a special and have discounted it 30 PER CENT)

What is next for our little lemonade girl?....Alex will continue on this chemo for the remainder of this week, followed by her week off. We are expecting some fun over the 4th of July as Aunt Kerri, Uncle Ruslan, cousin Marina, cousin Zachary, and Grandma and Grandpa are coming for a visit. We will attend the annual Penn Wynne 4th of July Parade and Fair and hopefully catch some fireworks at Penn’s Landing in Philly.

We are obviously enjoying some good times with Alex and the boys once again. Although she is still in a pretty fragile state and things can change so very quickly, we are thrilled to see Alex smiling and enjoying her summer. We try not to dwell on the future as we enjoy the smiles and good times together.

Thanks to all of you for your patience with waiting for updates (not to mention reading two weeks worth of news at one sitting).

Love, Liz

Wednesday, June 16, 2004 11:10 PM CDT

Dear Family and Friends,

If anyone is looking for a copy of Alex and The Amazing Lemonade Stand-- www.bn.com has it on special at 30 per cent off.


We have quite a bit to catch up on -- the past several weeks have been busier than ever and I have a lot to share with you all…

Alex is holding her own and I would even say that she is showing signs of improvement. Although she tolerated the new chemo pretty well, (oral temador and oral irintotecan), it has definitely hit her counts. Last week she received platelets in clinic on Monday, received a red blood transfusion on Wednesday, and then more platelets on Friday. The number of transfusions was nothing unusual, but her counts dipped down even lower than normal in between transfusions and her white blood cell count was very low (less than 200). Fortunately, she managed to remain fever free throughout it all. She is still recovering from her terribly sore throat (a side effect of her latest radiation treatments) but is able to eat normally now and is not requiring pain medicine. In my last entry I indicated that we were worried about her extremely distended belly, a sign of her progressing cancer; I am happy to report that her belly is now flat again and very soft, both good indications that this new chemo is working against her cancer. We are very pleased that she has responded so well to the new chemo but very cautious about getting our hopes up ---- she still has a long way to go. For now, we are happy that she is smiling again and enjoying this week off of chemo.

I know everyone wants to know about the “big day” and how close we are getting to Alex’s million dollar goal. First of all, let me say how thrilled we are that Alex’s Lemonade Stand has been featured in so many television and news stories around the country. We feel honored that Alex’s story has been wonderfully told to so many people all over the world! It not only helps her cause by raising awareness and funding for pediatric cancer research , it also allows children and families to get involved in a meaningful way by holding their own stands to support Alex’s Fund.

As many of you know, The Today Show appearance went perfectly; Alex’s determination shone through and the producer we worked with as well as Matt Lauer did a great job of making sure the interview served a specific purpose -- to inspire others to help her cause. The most incredible part of the day was when the interview ended and people standing out on Rockefeller Plaza starting handing money to Matt to give to Alex. There were so many people who wanted to give money to her cause that the crew had Patrick walk around with a jar to collect donations. In the five minutes following the interview, he and Eddie collected over $800. It was touching and so unexpected, a truly meaningful way to “kick off” Alex’s Lemonade Stand 2004 ! Needless to say, The Today Show was just the beginning of an incredible week of publicity leading up to the “big day“-- The Philadelphia Inquirer, The Oprah Show, an Associated Press article, and numerous local television and radio programs. All of this publicity has lead to a countless number of children and other groups joining the June 12th effort by setting up their own lemonade stands for Alex’s Fund.

So, after one very hectic week, the “big day” finally arrived with made-to-order weather here in Philadelphia (sunny and about 78F). The group of volunteers we have working for Alex here in Wynnewood call themselves “Team Alex” and they made sure that we had everything we needed to make the day a success. Jay and the boys were up and out early as they needed to transport the stand over to our elementary school by foot! Thankfully, our good friends The Divers arrived early to help us out. My mother had also come to my rescue earlier in the week and stayed around for the stand, which was a great help with taking care of Joey. Our friends from CBS News/The Early Show, Tracy and John, also arrived early to start filming the day -- Alex loves Tracy and is very comfortable answering questions for her so we were thrilled that they wanted to hangout and cover the story (the segment on Alex aired on Monday morning on The Early Show -Thanks Tracy and John!). At any rate, Jay and Team Alex set up the whole event and did a beautiful job of making sure everything was well run and staffed. Alex and I spent a quiet morning here with Tracy and John until shortly before the stand when we were treated to a private magic show by Chadakazam (www.magicalchad.com) -- the most talented magician I have ever seen. He amazed us all (and made Alex laugh too) before we headed over to the stand. We arrived at the stand around 11 am and Alex sat quietly behind the stand for a little while “overseeing” the lemonade serving and eating a pretzel. She handled all of the attention like a pro, and was determined to have a good time so we made sure that she went around to all of the activities -- she especially liked picking the winning raffle tickets and she also spent a few minutes at the craft table. After about an hour and a half she had done it all and was getting hot in the sun so we decided it was time to head home. She spent the rest of the day relaxing on the couch and I think she was proud of how the day turned out. Also, it was very important to her that she go to the stand and be a part of her special day -- thanks to Team Alex for making it possible!

So, the big question -- how much money was raised? ! Well, it never ceases to amaze me how generous and giving of time and money the people in our community are -- the total donations from Alex’s stand alone were over $38,000 in just 3 hours! It was a wonderful day, full of energy, excitement, fun, and really nice people. Thanks to all who volunteered their time to make it a success and thanks to all who came out to see Alex and support her cause -- we are extremely grateful (which really doesn’t begin to describe how we feel).
On the national level, we have been hearing back from other groups who held stands on June 12th as well as receiving daily piles of mail and online donations, etc. I am thrilled to report that our total as of today is over $400,000 raised in the past two weeks! She is well on her way to a million, and with many, many more stands to still report back and send in their donations, we expect to contine to climb towards that $1 million mark.

The response to this has been nothing short of astounding and heartwarming and just plain spectacular! Most importantly, we are raising greatly needed funds for research into improved treatments and cures for childhood cancers. As most of you know, Alex's Lemonade Stand is truly a grassroots effort -- organized and run by volunteers. The time donated by volunteers, as well as our partnership with The Philadelphia Foundation, allows us to maintain extremely low overhead costs (less than 2 percent). This means that more than 98 percent of donations made to the fund can be applied directly to pediatric cancer research grants. Thank you, truly from the bottom of my heart, to all of Alex's supporters across the country whose generosity with their time and generosity with donations will make a difference in the fight against childhood cancer. It is inspiring!

On that positive note, I will sign off and wish you all a happy start to summer. The kids officially started their summer vacation today -- we kicked it off with lunch at a local restaurant and a trip to the bookstore for some summer reading. We are getting ready to start Alex's next round of chemo next week, assuming her counts recover enough. So, this weekend is a great time to try to get out and do something fun. Fortunately, our very good friend (and excellent fundraising coordinator) Alicia and her husband Kevin have invited us to spend the weekend with them and their boys in Ocean City, New Jersey. Jay has to work but I am hoping to get there with the kids for at least one night and day -- it should be great!

Thanks for checking in on us.
Love, Liz

Thursday, June 10, 2004 0:36 AM CDT

Hello to all,

Quick update---over $370,000 raised and counting.......


First of all, I know I should not make promises I cannot keep but I honestly thought I would find the time for an update last week – what was I thinking?!

Overall, I would say that Alex is “holding her own”. She has completed her radiation treatments and has also completed her first cycle of the oral Temador and Irinotecan. The radiation to her upper spine included an area of her throat so she is having problems with a severe sore throat and trouble swallowing. She has been getting pain medicine for about a week now and her pain level has improved considerably. We are hoping that she will no longer need the pain medicine by this time next week. As a result of the throat pain, she again is not eating well and is looking a bit skinnier than she was but that should resolve when her throat heals. Her counts have been hit pretty hard by the chemo and her white count is very low right now. We are seriously hoping that she will not spike a fever but are watching her pretty closely for early warning signs that her temperature may be heading up. This will give me time to hide the thermometer (just kidding, sort of). So, her overall condition has not changed dramatically, for better or worse, since my last update. A positive sign of improvement is that her liver counts have returned to normal since she started on the new chemo and her distended belly has returned to its normal size. However, she is still extremely tired and everyday seems like a struggle for her --- both physically and emotionally. We think that when her throat is better and her counts improve she will show us all her shining smile again!

As most of you know things are going full speed ahead with the Alex’s Lemonade Stand plan for June 12th. We are beyond busy with preparations but are certain that the day will be incredible and unforgettable. Our awesome team of volunteers here in Wynnewood has helped us every step of the way -- their hard work has made it a very real possibility that Alex will reach her $1 million for pediatric cancer research goal. Thanks “Team Alex”!

Alex’s stand will be held at her elementary school – Penn Wynne School (for address and directions go to www.alexslemonade.com) – and we think it will be a huge success. This year we have planned a number of activities including musical entertainment, a magician (www.magicalchad.com), crafts, face painting, a raffle, balloons, chair massages, and food.

The dedication of the stand hosts across the country has impressed us tremendously. So many people are working hard to help Alex’s cause with the total number of lemonade stands taking place on June 12th easily surpassing 300 at this point (and growing by the hour!) We are grateful beyond anything words can describe.

We have been overwhelmed by the response we have received from all of the recent publicity. Countless emails, phone calls, letters and donations have poured in over the past few days. When I think of how many people Alex has touched it makes me realize how bittersweet life can be – How can such an awful disease bring about so much good? I am so proud of her for who she is and all she has done but I would “give anything in the world” to give her a normal, healthy, 8 year old girl’s life. How can I watch her suffer each day but yet still have reasons to smile everyday? I suppose it is all about making the best of your situation, and she certainly has taught us all about that…

So, this is going to be a short entry as I am literally falling asleep while I am writing this. We will update shortly after the big day with all of the details of our trip to New York (it does involve a kiss from a very cute morning show host!), the totals for the lemonade stands, and, of course, an update on how Alex is feeling.

Thanks again for checking in on us.
Love, Liz


If anyone is looking for our new children's book Alex and The Amazing Lemonade Stand it is available at:

Children's Book World
17 Haverford Station Road (right off Lancaster Avenue near Bryn Mawr)
Haverford, PA 19041

Outside of the Philadelphia area, it can also be ordered at Amazon.com or independent bookstores or Borders.

In Connecticut the book is available at The Bookworm in West Hartford.

Saturday, May 29, 2004 10:37 PM CDT

Dearest Friends and Family,

If anyone is looking for the new children's book Alex and The Amazing Lemonade Stand it is available at:

Children's Book World
17 Haverford Station Road (right off Lancaster Avenue near Bryn Mawr)
Haverford, PA 19041

Outside of the Philadelphia area, it can also be ordered at Amazon.com or independent bookstores or Borders.

In Connecticut the book is available at The Bookworm in West Hartford.

Just a quick update to let you know how things are going here…

Alex continues to have some very tough times but she is still as brave and incredible as ever. We are certain now that her disease is progressing, perhaps rapidly, in several areas. Her overall condition has declined over the past few weeks but her spirits have remained relatively good, all things considered. We are truly taking things day by day and trying to enjoy family time as much as possible.

She has expressed such despair over her struggle that it just breaks my heart, but at the same time she has told me that she really tries to keep her spirits up and focus on what makes her happy – this is how she is able to keep herself going day after day. What a trooper – she truly is inspiring.

In addition to the radiation treatments to her spinal tumor, we have added on 5 additional treatments to her right upper femur, which suddenly started to bulge with tumor last weekend. Her belly is completely distended, we are not sure why, but most likely related to tumor progression in the area. She has started on another new chemo (oral Temador and oral Irinotecan) – totally her choice but based on Dr. Maris’ recommendation. She started earlier in the week and, so far, she is doing fine with some stomach upset but no vomiting. She will finish her daily doses on the Thursday June 10th, just two days before her lemonade stand, and we will anxiously watch over the next week to see signs of improvement in her condition. On the bright side, some of her blood counts have been pretty impressive lately with an almost normal ANC (white cells that fight infection) and improvement in her platelets (although she gets them twice a week regardless). Her red blood count continues to disappoint us, with her receiving blood transfusions every 10 days or so. We have been going to the hospital daily for her radiation treatments, which are scheduled to end on Wednesday (yeah!).

Despite all of this awful sounding stuff, we do have some things to be thankful for… she is basically not having any pain and is not receiving any pain medicine; we are managing to get out for some fun here and there (Shrek 2 on Thursday, a country fair today, hopefully the museum tomorrow and shopping on Monday); and she is still managing to enjoy herself as much as she can.

Her fundraising efforts are now being supported by a countless number of groups, families, businesses; momentum is building daily. June 12th is going to be a huge success with hundreds of stands happening all over the country – it will be really special and, hopefully, raise tons of money. We are so hoping that Alex will enjoy her special day, but have told her that everyone will understand if she doesn’t feel well enough to attend. Thanks to all of you who responded to my last entry with donations of raffle items. Also, our new book Alex and The Amazing Lemonade Stand has arrived – we are thrilled about it, as is Alex. We are still planning on heading to New York for a Friday family appearance (probably without Joey) on The Today Show, but will change our plans according to how Alex is feeling. Right now she is adamant that we are going so we are so hoping she feels well enough to make the trip. We feel so lucky to be able to contribute to pediatric cancer research and awareness and it is a great way for all of us to get through these tough times with Alex. Honestly, I think she just might reach her ambitious goal of raising $1 million dollars in 2004 for pediatric cancer research – so many of us are doing everything we can to help her reach this goal!

Well, that’s all for now – thanks for your love and concern.
Love, Liz

P.S. I have (finally) posted new pictures, in case you haven’t noticed.

Wednesday, May 18, 2004 12:56 PM EDT

Hello to all,

I hope you have a few minutes to spend here because we have a lot of catching up to do…

The past couple of weeks have been difficult for Alex (and all of us) mostly due to pain issues. The shoulder pain (right side) that I mentioned in my last update increased throughout that week as did our suspicions that it was tumor/cancer related. We took the approach that we would “wait and see” what happened over the weekend and that she would start her next dose of the ABT751 on Friday the 7th, as scheduled. Well, by Friday afternoon her right eye was very droopy and her pupil would not dilate. Trying not to panic, I immediately called Dr. Maris and fortunately, was able to get in touch with him right away. He must know how I think because the first thing he said was that this was not a sign of a brain tumor (which was exactly what I was thinking). In fact, he was able to give me a name for it -- Horner’s Syndrome -- and explained that it was most likely related to the shoulder pain and probably caused by a tumor in the upper back area. We decided to go ahead with the ABT751 doses over the weekend with a plan to have a CT Scan done on Monday (May 10th). The scan confirmed that there is, in fact, a tumor pressing on her spinal cord in the lower cervical/upper thoracic area. This tumor is actually an “old” tumor that hadn’t grown for a while but is now growing a bit and causing some compression of her spinal cord. It explains the drooping eye and the shoulder pain and now, we realize, it is also causing considerable weakness and lack of coordination in her right hand. The good news is that the rest of her disease in the chest area looks “basically unchanged” which is means that the ABT is at least slowing things down in some areas.

So, we took that Monday night to digest the news but were back in the swing of things on Tuesday as we had an important family trip planned to Harrisburg to tour the State Capital building with our State Representative Daylin Leach. As I mentioned previously, he had introduced a resolution in the Pennsylvania State House of Representatives declaring June 12th “Alex’s Lemonade Stand Day” in the State of Pennsylvania. He offered to give us a personal tour of the absolutely beautiful Capital Building and also wanted to present the resolution to Alex in person. The boys ditched school and we all headed to Harrisburg for a great day -- we toured the building, met the Governor, and had a very memorable and special day. The building is really impressive, to say the least, and we really enjoyed ourselves. The kids especially liked meeting the Governor who let them each sit at his desk to pose for pictures and gave them each a pen that says “Stolen from the desk of Governor Rendell”. We owe a huge THANK YOU to Rep. Leach for his support and efforts on Alex’s behalf -- getting the resolution passed, arranging our special day in Harrisburg, and he is even planning his own lemonade stand in his town with his children on June 12th (after he attends Alex’s stand earlier in the day) ! I know he has at least two votes in November…


Although Alex had a good day in Harrisburg on Tuesday, the pain continued to worsen through the week, and by Friday she was quite uncomfortable despite getting a heavy dose of morphine every four hours.
We saw Dr. Maris on Friday and he prescribed a stronger, extended release pain medicine which seems to be keeping her comfortable. He also recommended radiation to the spinal tumor, as well as possibly switching to a different chemo. We all agreed (including Alex) that we had to treat the spinal tumor immediately to provide pain relief and to prevent further compression of her spinal cord. However, we are still undecided about whether she should start on a different chemo or stick with the ABT a bit longer. Alex feels that it is helping her and she is tolerating it very nicely, so we decided to give ourselves a little more time to see how things go over the next week or so. In the meantime, she will probably finish up this cycle of ABT while she gets her radiation treatments.

So, yesterday we headed over to the Hospital of Upenn (aka HUP) for her mapping session in the morning and they were able to squeeze her in for her first treatment in the afternoon. Fortunately, Alex handles the treatments extremely well and is very cooperative with the radiation techs, who have become her buddies over the past few months. She will receive her usual 10 treatments over the next two weeks, this time to her upper spinal area, and hopefully she will get quick pain relief with few immediate side effects.

Overall, I would say that she is not doing as well as she was a month ago, but it is very hard to say exactly what is going on. On a positive note, her counts have been holding steady and never crashed as I predicted they would after radiation (sometimes I like to be wrong!). Of course, by holding steady I mean that we have been sticking with her twice weekly platelet transfusions and as needed blood transfusions, which is “normal” for her. On the negative side, we know that dealing with pain takes a lot out of her -- it affects her mood, her appetite, her sleeping, and the pain medicine makes her very sleepy and foggy-headed. So, until we can get her pain under control and wean her from the pain medicine, it is very hard to tell exactly how she is doing. We are hoping to see some dramatic improvement by this time next week but may need to wait a bit longer than that. Once we settle into the radiation treatments and see some pain relief, we will discuss in more detail her treatment plan with Dr. Maris.

Alex handled this latest setback pretty well after the disappointment of finding out about the tumor growing on her spine. She very correctly expressed how very unfair this whole thing is and how she has a hard time believing that she will ever be cured. At the same time she made it clear that giving up is not an option for her right now -- she wants to be cured so badly that it brings tears to my eyes to think about it. She recently told me that she would “give anything in the world to be normal for even ten minutes” yet she manages to face each day and keep fighting. We are in awe of how brave and strong she can be at the age of eight but also so sad that her life has been so difficult. So, we remain hopeful that she has some better days ahead of her…

On a more uplifting note, we made a very special trip to Connecticut last weekend to attend two meaningful events. Despite feeling quite lousy, Alex was really looking forward to making the trip so we headed to Connecticut early Saturday morning. The town of Windsor, where Jay and I both grew up, holds an annual town fair called The Shad Derby (named after the Shad fish). Growing up, The Shad Derby was an event we wouldn’t miss, so it was really wonderful that our Windsor Warriors for Alex decided to host a lemonade stand at this year’s Shad Derby. This group of volunteers in Windsor has managed to rally an incredible amount of support for Alex’s fundraising efforts and we are so glad that we were able to thank them in person! Not only did we get to attend the Shad Derby, but Alex received a special “Honorary Shad Derby Princess” sash from the beautiful Shad Derby Queen and her court as well as a proclamation from the Governor of Connecticut declaring June 12th, Alex’s Lemonade Stand Day in Connecticut. It was a very hot day and Alex was very tired, but it was a special day for her and our whole family. The second event we attended was the baptism of little Marina, our newest family member. Cute Marina is the daughter of Jay’s sister Kerri and her husband Ruslan. We were very happy we could attend -- Alex just loves having a “baby sister” , the boys had a great time running around with their cousins, and Jay and I always love to visit with our families. So, despite the drive, we arrived home Sunday evening feeling very grateful that Alex insisted that we make the trip!

The lemonade plans continue to come together and we are anticipating a very exciting June. We expect that there may be hundreds of stands on June 12th to benefit Alex’s Lemonade Stand for pediatric cancer research. The planning is exhausting and consuming but it is fun, exciting, and well worth the effort! Alex has set a goal of raising $1 million dollars this year and we are doing everything we possibly can to help her reach it. Also, our children’s book Alex and The Amazing Lemonade Stand should be available as planned for June 1st -- the money from the book with benefit Alex’s Fund. Alex’s stand here in Wynnewood should be fun and we are really hoping that Alex will enjoy it. Her stand will be at Penn Wynne School this year (right around the corner) and the whole school community is coming together to make it a success -- we feel so lucky to send our kids to such an extraordinary school! We are in need of some items for the raffle, so if anyone has something they can offer, please feel free to contact us by email or phone 610-642-1728.

I will end with a promise I hope I can keep -- I will post new pictures sometime this week and I will not wait two weeks to update again.

Thanks for your patience on this one!
Love, Liz

Tuesday, May 4, 2004 11:45 PM CDT

Dear Family and Friends,

May has arrived and we are so very busy with family life, Alex’s appointments, and finalizing plans for June 12th, national Alex’s Lemonade Stand Day.

Alex remains relatively well, considering she is still recovering from her two weeks of radiation and three weeks of chemotherapy. She finished her radiation treatments last Thursday and, also on Thursday, she took her final dose in the 21 day course of chemo (ABT751). She continues to require platelet transfusions twice weekly and recently has also needed whole blood once weekly. Her white count and ANC (the white blood cells that fight off infections and other bugs) have remained surprisingly good, which is a welcome change. Most likely, her counts have not yet felt the full blow of the radiation and will drop quite a bit more before they recover. She did spike a fever last Wednesday, with serious diarrhea, lasting for a couple of days. Fortunately, the wonderful people at CHOP decided to send us home (rather than admitting Alex to stay overnight) , after giving her some 24 hour IV antibiotics as well as some oral antibiotics. We were able to stop in for fluids again on Thursday, just to be safe, and then again Friday, for platelets and more fluids. By Friday her fever and diarrhea had basically stopped but her leg was swollen (most likely due to the pressure in her left pelvis from the tumor) and her belly was distended and sore to the touch ( most likely a result of the “radiation burn”). We thankfully managed to get through the weekend without any visits to the hospital emergency room (our least favorite place to hangout). Monday found us back at the hospital for more platelets and to check on her swollen leg, which seems to be improving.

So, today was our first weekday in almost three weeks that we did not have to go to the hospital – what a great feeling to get the boys off to school and not have to rush around getting ready to leave. Alex was a real trooper throughout her radiation treatments and did not complain at all about having to go in everyday. However, she was very happy to stay home today and took full advantage of the opportunity to catch up on her sleep. She is extremely tired from the radiation and slept until almost 11 am this morning. Mostly her mood is good, except that she is so very tired. Her belly is still sore to the touch but is improving daily and the diarrhea seems to have stopped, at least for now. Overall we think she is doing okay, all things considered, but she has definitely been setback a bit by the radiation in terms of walking, eating, and energy level (did I mention that she is tired?!). We expected all of the side effects that we are seeing and are hoping that she will be feeling much better by this time next week. She has been complaining of shoulder pain (has even been taking pain medicine at night), which is something new, and we will be sure to mention it to Dr. Maris when we see him this week. Also, we are planning on giving her another 21 day dose of the ABT751 before we reevaluate her cancer -- this means that she will start her next cycle this Friday, May 7th.


Life has certainly been busy lately and we expect the rest of this month to be a blur of end-of-school activities and weekend sports for the boys, hospital visits and other daily stuff, and lots of preparations for June 12th – Alex’s Lemonade Stand. The momentum is building daily as we receive news everyday from people all over the country – the number of stands being held on June 12th increases daily (there will be well over 200); national and local media interest is starting already; our illustrated children’s book should be available by June 12th (you can preorder it at barnesandnoble.com) ; we are receiving great support from local businesses all over the country and national sponsors as well; Volvo is taking out a 3 page ad in Philadelphia Magazine, featuring Alex and her lemonade stand on two pages, donating a 2 year lease on a car for a raffle (details to come) and holding stands and matching donations in their Philly area dealerships; American Cellular (a Cingular dealer) is hosting lemonade stands in over 50 stores and having live radio broadcasts from 6 of the stands; A supermarket chain of 33 stores in Ohio has offered to hold stands in all of their stores on June 12th; Jelly Belly is donating a special printing of lemon flavored jelly beans in mini packages that say Alex’s Lemonade Stand, these will be sold at the UConn stand on June 12th; the list goes on and on – a lot of great people are working hard to make this day a success and help Alex reach her goal of $1 million for pediatric cancer research in 2004.

We cannot express how completely touched and inspired we are by the efforts of all of the children and adults who give their time and pour their hearts into raising money for Alex’s Lemonade Stand. The emails and letters from children who are holding stands for Alex and donating the money to her fund are especially heartwarming and meaningful. Every donation counts -- we are truly “fighting pediatric cancer, one cup at a time” !!

Well, I desperately need some beauty sleep (wouldn’t it be nice if it was really that easy) and I know a certain one year old who will be waking up in 6 short hours.

Your support is incredible and always appreciated!
Love, Liz

Wednesday, April 21, 2004 10:48 PM CDT

Hello to all,

Once again, more time than I would like has passed since my last entry and I apologize if you were starting to wonder or worry. As usual, no news is good news and Alex continues to amaze us with her resiliency and shining attitude.

Alex has been taking the "new dose" of the ABT751 for almost 2 weeks now and is doing really well with it. She doesn't seem to mind taking the pills daily and hasn't complained about the extended cycle of 21 days. Her daily radiation treatments to her pelvis started last Friday and she is handling them amazingly well so far. She arrives for the treatment with a smile on her face and leaves with a smile on her face. The radiation treatment itself only takes about 2 minutes (I am not kidding) so, other than the inconvenience of the daily trips to the hospital, it is pretty easy to manage. The side effects from the radiation have been nonexistent thus far but we are expecting some amount of count supression, fatigue, and diarrhea. It is possible that the effects will be minimal but it is too early to tell. We expect that next week and the week after will be her "bad weeks" but let's hope we are pleasantly surprised. She will finish her radiation therapy and her take her final dose of the ABT for this month next Thursday, April 29th. She will then get a week off from the ABT before she starts her next 21 day dose, assuming things are going relatively well.


In addition to our daily trips to the hospital, Alex has been filling her days with home tutoring with Kay, knitting with Laura, physical therapy with Barbara, playing solitaire on the computer, and of course, watching cartoons and American Idol. She has taught herself to walk around with crutches and has been doing quite a bit of short distance walking in the house (from room to room). Last weekend, inspired by the beautiful weather, she walked out to the swingset in the backyard with her walker (this is a long distance for her). Overall, she is very agreeable and talkative -- one happy chick!

We have been very busy with other "normal" family stuff-- Everyday "school stuff"; Eddie is playing tee ball; Patrick is playing soccer as well as continuing his karate studies; Joey is running around and getting into everything (in a good way); Jay is working a lot of extra hours; and we are all just loving this gorgeous weather we have been having. My sister Sue and her four kids were here to visit from Connecticut yesterday and today. We always have a blast when they come and were sorry to see them leave so soon -- thanks for coming, we love you guys!

Our plans for Alex's Lemonade Stand on June 12th are really coming together nicely. We are receiving news everyday of new lemonade stands and support for Alex's efforts. I hate to mention names because there are so many people doing so much to help Alex reach her $1 million goal this year and we appreciate every donation -- no matter how big or small. I have to express how touched we are by the support and unbelievable fundraising efforts that are happening in Windsor, Connecticut (our hometown) -- special thanks to Mrs. Walsh, Mary Beth Welch, and Sue Boyle, our Windsor Warriors! Jay's sister, brother-in-law, and parents have been working very hard to make their lemonade stand at their coffee shop at UConn very special with special appearances by and valuable auction items signed by the UCOnn Men's and Women's National Championship BasketBall teams. Also, in Connecticut, American Cellular stores (Cingular) are hosting stands at around 20 of their locations and will be running a phone promotion with some proceeds to support Alex's efforts. The Burlington, Vermont stand, organized and supported by the Burton family (a family also touched by neuroblastoma) is going to be a huge event on the waterfront. The Robinson family of Minnesota (another neuroblastoma family) has managed to get permission to sell lemonade at the Twins/Phillies game on June 12th in Minnesota - incredible! Superfresh Stores (a grocery chain in PA, MD, and DE) has committed to having all 75 of their stores participate in fundraising for Alex's Lemonade Stand. Several Volvo dealers (14 to be exact) are holding lemonade stands at their stores to benefit Alex's Fund. I could go on and on about how excited we are about this but really we just want to express our gratitude for the inspiring effort put forth by so many of you to raise money for research and bring awareness to pediatric cancer.
Thank you, thank you, thank you!

On a final note, our computer has "crashed and burned". We are hoping to send the hard drive out to a company that may be able to recover some of our files, but in the meantime, we are in desperate need of email addresses, especially from those people who are holding lemonade stands (your mailing addresses would be helpful as well).

Once again, thanks for checking in on us.

Gratefully yours,
Liz

Friday, April 9, 2004 10:41 PM CDT

Our main computer has crashed, we have at least temporarily (maybe permanently) lost all of our old e-mail addresses. We need friends, family acquaintances to send us an e-mail to get our address book back in order.

We also need all of you holding lemonade stands to e-mail us so we can re-build the e-mail distribution list.

Thanks
Dear Friends and Family,

Just a quick update on Alex’s scans and our wonderful trip to Connecticut and New York…

As most of you know, Alex had a CT Scan of her chest, abdomen, and pelvis this morning at 8:30 am. She is an absolute expert at drinking the prep, holding still, and following directions (at least from the folks in CTScan) so the scan portion of the day was a breeze. We were done with all of the scans by 8:45am and headed over to clinic for platelets and to see Dr. Maris. We were very anxious to hear the results as we waited for her platelets, and finally at 12 o’clock, Alex turned to me and very loudly said “Where is Dr. Maris, I am dying to know how my CTScan looked?! ” Fortunately, he showed up to see us within five minutes with the news from the scans. Basically, the results show a mixed response to the ABT751. Most areas in her chest and abdomen look stable, which would lead us to believe that the chemo is keeping her cancer under control in these areas. The bad news of the day is that the tumors in her pelvic bone have grown considerably and are now threatening to obstruct her bowels (this was the cause of the “puffiness” I had mentioned before). Dr. Maris’ recommendation at this point is to radiate her pelvis with a goal of drastically shrinking the bone tumors to alleviate the pressure on her lower bowel and bladder. She is scheduled for her first of ten daily treatments next Friday. Also, he is recommending that she stay on the ABT751 for at least one more cycle starting today, since it appears to be slowing down her cancer progression and she has been feeling so well on it. However, he is changing her dosing so that she receives half the dose but stays on it for 21 days a cycle; with only 7 days off before she starts again. He hopes to accomplish two things with this change – increase the overall dose she receives and hopefully increase the effectiveness, and decrease the time off by a week so that her cancer has less time to rebound between treatments.

Although this was not the news we were hoping for, it is not the worst news we could have received. We knew something was going on in her pelvis over the past few weeks, so that was no surprise. Also, she is not having pain, coughing or other symptoms from her lung and liver disease so we are happy to hear that these areas are not obviously progressing. Overall, we are pleased with how well Alex has been feeling on the ABT and she has expressed many times how much better she feels since she started on it. Also, we feel very fortunate that she is not having much pain, except for some transient pain in her legs now and then. Radiation has always worked quite well against her disease, particularly her bone disease, so we are hopeful that it will shrink the tumors enough to alleviate any symptoms. So, the initial disappointment at hearing the news has turned into relief as we discussed options with Dr. Maris and are comfortable that we have a plan of attack. I have to say that Alex is handling things wonderfully these days and surprised us with how well she took the news today. She was a bit disappointed about the scans but was quick to point out that radiation is “like no big deal at all” and that she didn’t mind staying on the ABT for extra time since she felt so good while she was taking it. Her strength and positive attitude is definitely contagious and helps us remain strong and positive.
Our trip to Connecticut was perfect, except it was too short. We did manage to visit with most of my family and Jay’s family as well as a few old friends on our two day visit. On Tuesday, Alex and I went to Connecticut Children’s Medical Center for platelets and visited with her first oncologist, Dr. Altman. After platelets, we picked up the boys and headed to New York for the Volvo For Life Awards. Our New York stay was incredible, with two beautiful adjoining rooms at The New York Palace Hotel on Madison Avenue. As always, Volvo took care of us in style, with excellent seats at The Phantom of The Opera (impressive and memorable show!) and a personal driver for any transportation needs we had. Wednesday night we all attended the second Volvo For Life Awards and had an unbelievable time. I could go on about it for pages, but here are the highlights…
Vic Doolan, the President of Volvo North America (and the reason we are always invited to Volvo events) announced in his opening introduction that his personal hero was at the ceremony, proudly held up the advance copy of the children’s book we wrote, and asked Alex to stand up. Also, Vic asked Alex to announce the winner of the Grand Prize (a Volvo car for life) for the “top hero”. She went up on stage by herself (using her bright yellow walker) with Caroline Kennedy to announce the grand prize winner – Earnestine Russell-Drumgold. Earnestine is a true hero for sacrificing so much personally and financially over the past 20 years to make sure that kids at risk in her neighborhood in NYC had a place to go after school and in the summer. Her amazing program has grown over the years and boasts inspiring success stories, as she has never “lost a child” to drugs, guns, or jail but has inspired them to graduate from high school, go to college, and give back to their community. Our family was rooting for her to win the grand prize and was especially proud that Alex was able to announce her as the winner. To read more about her and the other heroes, go to www.volvoforlifeawards.com. There may be pictures of the event on there as well (I haven’t checked yet). We were also very happy to see our friends from CBS News, Tracy Smith and John D’Amelio who created the wonderful segment on Alex that appeared on the Early Show and CBS Evening News last summer. We met them when they came to the house to film the piece and became fast friends. Another highlight of the night was meeting Hank Aaron, who was on the celebrity judging panel. Also, much to our excitement, Toots and The Maytals was the featured band at the party – this is a legendary reggae band that has been around for decades. Jay and I have seen them many times at concerts (college years) and were so surprised when we saw they were playing at this event -- Jay was thrilled to hangout at the party with Patrick, (the rest of the kids were too tired) listening and dancing to Toots. Like I said, I could go on and on, but really one thing is most important – Alex was happy and well enough to attend the event. Thank you Volvo for being so committed to recognizing everyday heroes and inspiring others to reach out in their communities.

So, next week we hope to only go to the hospital for our usual two visits, adding on a trip over to Hospital of University of Penn (HUP) for radiation to our Friday visit.

Thanks again for all of your support to our family and to Alex’s Lemonade Stand efforts. We appreciate all that you do!

Love, Liz

Friday, April 2, 2004 11:47 PM CST

Happy Spring!

I am happy to report that things continue to go relatively smoothly here. We are enjoying the “normalcy” (hah!) of scheduled visits for platelets on Tuesdays and Fridays and the predictability of maintaining the same monthly schedule for chemo. Alex continues to let us know that she is feeling well by her behavior and demeanor – she is eating well, looks great, and is just full of life!

Her biggest issue at the moment is getting around safely (she now insists that she doesn’t need the walker and gets around by stepping carefully from one piece of furniture to the next) and fatigue (she still tires pretty easily but is improving). She has started physical therapy with Barb and seems to be enjoying the visits. For now, Barbara is coming two times a week for about 30 minutes but we hope to work up to longer sessions as Alex’s endurance improves. Barbara is amazed at how strong Alex still is, after months of inactivity followed by a broken leg. Alex was very happy to hear Barbara tell me this and I think it made her work even harder. One bit of disappointing news in this area – Alex’s orthopedist, Dr. Dormans, told us today that her fractured bone in her leg is basically still broken. Because of where the fracture is, she would need a complicated procedure and heavy casting to get the bones to heal. So, although she has a healing of the area around it (I believe he called it a “fibrous healing” or something like that), the bone itself remains broken. However, it is not causing her pain and she is able to bear weight on it, so he feels that she should continue to walk and stand as much as she would like. The other bad news he gave us is that her scoliosis (curvature of the spine) has continued to progress to the point where he would consider putting her in a brace. We were told years ago to expect some scoliosis due to the original laminectomy (removal of a small piece of bone on her spine) which was necessary to remove the tumor on her spine. Later, when she had radiation to her spine, we were again told that it might increase her chances for scoliosis. Also, the fact that she has had spinal cord damage and paralysis issues increases the chances of scoliosis. So, we have been keeping an eye on her spine for years and expected she would probably get to this point. Much to Alex’s relief, Dr. Dormans feels that there is a much bigger picture to consider here, which is her overall health and quality of life so he is not recommending a brace at this point or a cast for her broken leg, but is going to speak with Dr. Maris before he makes a final decision.

Alex tolerated her 4th dose of the ABT751 (oral experimental chemo) very well. It is one of the “easiest” chemotherapies she has been on – easy to take, relatively easy on her counts, and easy on her stomach. She is quite pleased with it so far and is especially thrilled that her head is now almost completely covered with hair. She wants this chemo to work so badly and has said that she thinks it is working – I know she will be devastated if we find out that it is not working well enough and she needs to switch to something else. Her CTScan is scheduled for next Friday, the 9th, and we will meet with Dr. Maris later that morning to discuss the results. She is also scheduled to start her next dose of ABT751 that day, assuming her CT Scan shows that it is working against her tumors. I will absolutely post the results of her scans later that day or night, so please check back late in the day on the 9th.

The kids are officially on spring vacation now so we are heading to Connecticut for another whirlwind visit with family and maybe even a few friends. We will arrive at my parents’ house on Sunday and visit with family and friends for a couple of days. On Tuesday, we will make our usual visit to Connecticut Children’s Medical Center to visit and get platelets. Later that day we are heading to New York City for a two night stay, compliments of Volvo, once again! They called us this week to see if we would be interested in attending the 2nd Annual Volvo For Life Awards (www.volvoforlifeawards.com ) in Times Square next Wednesday. Last year we attended the awards because Alex was named a Volvo For Life Hero and had an unbelievable time. So, of course, we told them we would be honored and thrilled to attend. They are announcing the Volvo For Life Award winners for 2004, who I am sure will be just as amazing as last years winners. I cannot say enough about the generosity and kindness of the Volvo people – they are genuinely committed to recognizing everyday heroes through this incredible program. Our plan is to arrive on Tuesday so that we can have a full day in New York on Wednesday. Patrick, Alex, and I are going to attend a Broadway show (not sure which one yet, as Volvo is generously getting the tickets for us) and Jay is going to do something equally fun (that doesn’t involve sitting quietly) with Eddie and Joey. Wednesday night we will all attend the award party at the ABC Studios in Times Square; it is touching to hear the inspiring stories of the heroes and all they have done for others – a very special and memorable night for our whole family. Thursday morning we will head home, Friday is the CTScan and platelets again, and then we will enjoy a quiet (hopefully) Saturday.

We will spend Easter Sunday with our good friends, The Divers, for the second year in a row – I think a new tradition has been born! Also on Easter Sunday (April 11), Jay and I will celebrate our 12th Wedding Anniversary. Our anniversary has a double meaning for us, because April 11th is also the “anniversary” of our first date, way back in 1986. It is hard to believe that a pizza at Pizza Hut (we were in high school) and a stroll through the produce department at the supermarket (what can I say, Jay loved fresh produce) could turn into a lifetime together. Although Jay’s love for fresh produce has somewhat diminished, our mutual love of pizza has continued to blossom and grow over all these years. So this year we celebrate 12 years of marriage and 18 years of love, friendship, and pizza.
Happy Anniversary, Jay!

Our plans for the June 12th National Lemonade Stand continue to pick up momentum. We are busy with planning, coordinating, and working out the details of the day, both locally and nationally. We are still looking for volunteers to host stands, so if you are interested in helping out, please let us know. Also, Alex’s local stand will be held at Penn Wynne Elementary school this year. We are all excited about the day and are hoping to make it a really special event with music, magic, and other fun stuff. We hope to have a raffle again and are looking for items to be donated for this, again, let us know if you can help. Last, but not least, our illustrated children’s book, Alex and The Amazing Lemonade Stand, will be available at the beginning of June. We are very excited -- it is a hardcover 32 page book, illustrated by Alex’s Aunt Pam (thanks, Pam!), with profits going to Alex’s Lemonade Stand Fund.

Words cannot express how grateful we are for the support we receive from all of you. So many of you have sent messages, cards, gifts, food, and supported us in various ways. I have been feeling very badly lately that, more often than not, I do not properly thank each of you for the presents you send or respond to each message personally or return your favors (it is partly due to not having enough time in the day and partly due to being a totally unorganized person). We have been the recipients of so much kindness and generosity and I fear that you all may not realize how appreciative we are and how your support gets us through difficult times and inspires us at all times. So, I can only say, once again... THANK YOU!

Gratefully yours,
Liz

P.S. Go Huskies!!!!!!!!!!!!!!

Saturday, March 20, 2004 1:22 PM CST

Dear Family and Friends,

I cannot believe it has been almost two weeks since my last entry. Things have been going well here and we are so thrilled to see Alex enjoy some good times… she certainly deserves it!

When I last wrote, Alex was doing fine but coughing quite a bit, requiring her to take oral antibiotics. I am happy to report that her cough has dramatically improved, which leads us to believe that it was due to some kind of infection in her already compromised lungs. Of course, we were concerned that the coughing was indicative of something more sinister – like the tumors on her windpipe or in her lungs growing again. We know that she still has tumors throughout her body (including her lungs and windpipe) but we are very hopeful that the oral chemo she is on is, at least, keeping them stable or slowing down their progression. So, we were greatly relieved when her coughing seemed to steadily improve on the oral antibiotics. The only new area of concern for her is her left lower pelvis, which has been a bit “puffy” and swollen lately. Dr. Maris is not alarmed by it, especially since we already knew that she has tumor in this area and it is not causing her any pain or problems, but we are keeping a close watch on the area. She will be having all of her CTScans done sometime in the next 2 – 3 weeks. These scans will reveal how her cancer is responding to the oral chemo and alert us to any potential problem areas. If things look the same or better she will continue on the ABT751 but if they are worse in multiple areas, I suspect he will recommend that she switch to a different drug.

With this in mind, I must say that she appears to be doing well on the ABT751 – she is eating well (up 3 lbs in the past month!) , happy and chatty as ever, walking a little bit more (still a long way to go on that), less tired, and trying to keep busy. We have been sticking with our Tuesday/Friday schedule which has made it easier to plan our weeks. Kay, her incredible homebound teacher, continues to come as often as possible (a few times a week). On Thursdays, Alex really loves her weekly knitting lesson with Laura. Not only does she love knitting but she truly enjoys Laura’s company and she just shines when Laura is around. She has started to mention the idea of going back to school a little bit and we discussed the benefit of her having a wheelchair to use at school so that she could move herself around safely and without getting too tired. As she is maturing it is seems easier to convince her of what is truly best for her (in the past, the mention of a wheelchair was immediately dismissed by her). She tested one out while we were shopping at Kohl’s and I think she was surprised at how easy it was to move around with the chair. So, this is something we are thinking about, even if she decides that she is not ready to go back to school. She has also expressed a desire to see some of her school friends again and I am hoping to arrange for some friends to come to play on a regular basis. It would be nice if she felt connected with her friends again.


I am also happy to report that we made our trip to the Volvo Conference in Orlando last weekend. What a fantastic company and first class trip! The hotel/resort we stayed at, The JW Marriot Grande Lakes in Orlando, was perfect – we had adjoining rooms, with plenty of room and fun for all of us, there was a game room (for Eddie), an unbelievable outdoor pool (for Patrick) with poolside food (for Alex) and bar service (for Mommy and Daddy), a playground/sandbox (for Joey) and a huge spa/salon (again for Alex and Mommy). The Volvo people took care of everything – passes to Disney parks, all of our hotel charges, our transportation (we had a driver each day – yes, we are really spoiled now!). We went to MGM, Magic Kingdom, and Epcot – highlights being the Tower of Terror at MGM for Patrick, Eddie, and me; the 3D Muppet movie at MGM for Jay, Alex, and Joey; the Barnstormer rollercoaster at Magic Kingdom for Alex, Eddie and me; and the Viking boat ride at Epcot for the whole family. We also attended the Volvo sales meeting on Monday morning – Vic Doolan, The President of Volvo in North America, presented the new Volvo models to the retailers and also introduced the Volvo For Life award winners (www.volvoforlifeawards.com ). He first introduced Robert Young, the grand prize winner, who devotes his life to building homes and providing shelter to Native Americans. Robert has made a life changing and life saving difference in the lives of so many Native Americans – for more about his work you can go to his website www.redfeather.org . After Robert spoke for a few minutes, Vic introduced Alex as his personal hero to which the Volvo employees responded with a standing ovation. Our whole family went onto the stage and I spoke for a couple of minutes about the award and Alex’s fundraising efforts. The usually crowd shy Alex even took the microphone for a second to say her own “thank you”. Needless to say the trip was wonderful and greatly appreciated by our family. When we first talked about this trip back in January, I was very doubtful that Alex would be feeling well enough to enjoy it – she is amazing!

So, we arrived home Tuesday night and it was back to reality on Wednesday as we headed to onco. clinic for platelets and blood. Her counts continue to hold up (for her), with her white count maintaining a level that allows her to stay on her chemo schedule without a problem. She started on her fourth cycle of oral ABT751 yesterday and will again take 7 doses, followed by two weeks of “rest”. Really, it has been quite manageable and she has been tolerating the doses easily, with no visible side effects.

Her lemonade stand efforts continue to pick up momentum as we approach the big day – June 12th! As most of you know, on June 12th, Alex will hold her annual stand her in Wynnewood at her elementary school (we have outgrown our front yard). This year, her efforts will be expanded as volunteers from across the country hold Alex Lemonade Stands on June 12th as well. We are aiming to have at least one stand in every state but are still looking for volunteers in about 7 states. There are many states with multiple stands, so the overall number of stands may reach 100! We, along with Alex, are committed to raising money for pediatric cancer research and are both thrilled and extremely grateful for the support we have received from you all – Thank you!!!!

We are constantly and sadly reminded of the need for pediatric cancer research – a special little girl, Cierra Lugo, passed away Wednesday morning. Like Alex, she had been bravely battling neuroblastoma for a long time. Alex and Cierra shared much more than the same disease – they both were treated at CHOP where their frequent platelet transfusions resulted in many visits between girls and moms; like Alex, Cierra also had a Persian kitten that she adored; and without a doubt, they shared the strength, determination, and courage that is required to fight neuroblastoma. Cierra was a very special girl, with a voice and face that would always make us smile – we will miss her. Her mom, Shannen, is a single mom, who not only devoted every minute of everyday to caring for Cierra but who managed to keep laughter and hope alive. If you would like to read more about Cierra’s life you can visit her website at http://mysite.verizon.net/res17xv3 .

Well, we are expecting this week to be pretty quiet, with our usual hospital visits on Tuesday and Friday. My most ambitious plan this week is to get my house in order and catch up on some overdue projects. So, I am off to spend my afternoon with the laundry…

Thanks for your support, it’s always appreciated.
Love, Liz

P.S. New pictures in photo album!

Monday, March 8, 2004 11:13 PM CST

Dear Family and Friends,

Thank you all for checking in on us so regularly; we appreciate your support more than you can imagine.

First things first… Alex is doing fine. She finished her 3rd cycle of ABT 751 last Thursday. She tolerated it extremely well, with virtually no nausea or problems to speak of. We are very pleased with the ABT751 for a few reasons – it is very easy to fit into “normal” life, with Alex taking 3 gelcaps nightly for 7 days; it has been gentle enough on her blood counts that we have been able to stick with our Tuesday/Friday weekly schedule at the hospital; and there are some indications that it is working against her cancer. So, we just hope that this treatment continues to work well for her and she can continue to get her strength back. We picked up a walker for her last week and she is getting around with it quite well, although she gets tired very quickly. Her hair is growing back – as dark and thick as ever – and she is pretty thrilled about that. The other night when I put her to bed she had a big smile on her face and she said “My hair is growing back, I can walk with my walker, Can’t you tell I’m happy, look at my face!” I am sure my smile was bigger than hers.

I hate to ruin the mood here but she has been coughing a lot over the past week, as I mentioned in my last entry. The boys were all coughing with various symptoms last week and both Patrick and Joey ended up on antibiotics, so we are pretty sure that her cough is related to that same bug/virus. Over the weekend, she spiked a fever prompting us to go to the ER for a chest xray, various cultures, and a dose of antibiotics. Her chest xray did not show pneumonia and her counts were good so we were very happy to be discharged without having to stay overnight. She had a pretty good night Saturday night, with very little coughing, and a good day on Sunday, although she was tired.

Aunt Pat, Uncle Andy, and cousins Danielle and Chelsea from Connecticut visited over the weekend. Unfortunately, Alex and I had to head into the hospital shortly after they arrived on Saturday but we were grateful that we were able to visit with them on Saturday night and all day Sunday. Sunday afternoon, as Patti and family were walking out the door, my parents arrived to stay and help out for the week. It is great to have them back for a visit. They have only been here one day and already my laundry is all caught up, the grocery shopping is done, and we had a delicious pot roast dinner tonight. Not to mention that we just enjoy their company and, let’s face it, even grown-ups need their parents sometimes!

Well, this morning I took Joey to the pediatrician for his 12 month checkup which went very well,( although they needed 3 people to “hold him down” to draw blood for routine blood work). When we returned home around 11 am, Alex was on the couch coughing continuously. I knew right away that she was headed for another fever and sure enough by 12:30 she had a fever of 101.5. Knowing that her lungs are pretty fragile due to the tumors and radiation, I really did not want to mess around with a possible infection. So, she and I zipped down to CHOP and they gave her a shot of a 24 hour antibiotic as well as a prescription for an oral antibiotic. Tonight she was noticeably better already so I am hoping that this cough will be behind us by the end of the week.

Tomorrow we are heading back to CHOP for our usual Tuesday visit for counts and platelets. We then hope to not return to the hospital until Friday for our visit with Dr. Maris and more platelets.

A couple of exciting things to mention -- Our good friends Bill and Dottie Diver and their kids Nick and Courtney are going to be selling lemonade at a Reading Royals game this Saturday. For those of you who don’t know, the Reading Royals are a professional hockey team out of Reading, PA. This is the second Alex’s Lemonade Stand at a Royals game, thanks to The Divers. What a great family and true friends! Thanks Bill, Dottie, Nick, & Courtney and thanks to the Royals organization for supporting Alex so wholeheartedly. We really wish we could be there on Saturday to help out with the stand but, if all goes well this week, we will be in Orlando on Saturday –yes, Disneyworld, here we come!!! As most of you know, Alex was awarded a Volvo For Life Award last year and we traveled to New York for the amazing awards ceremony. Volvo is holding a company conference in Orlando this weekend and they have invited our family to attend. We are planning on flying out on Saturday morning and returning on Tuesday afternoon. In between daily events for Volvo we will have plenty of time for some fun at Disney and maybe even a little relaxation. It should be a much needed (and deserved) short family vacation for all of us. We are so grateful to the people at Volvo for their generosity to Alex’s Fund and our family – what an impressive company and nice group of people. To learn more about the Volvo For Life Awards go to www.volvoforlifeawards.com .

We continue to keep busy with family life and our work for Alex’s Lemonade Stand. Jay has been very busy with his “real job” and I just have to tell you how much I admire him. He holds down a full time job that he is very good at, works tirelessly on various projects for Alex’s Lemonade Stand, spends a lot of time with the kids, and manages to make us all laugh everyday, no matter what is going on. I could go on, but I am sure I have totally embarrassed him already. Anyways, he is in New Orleans for business right now and you can probably tell that I miss him (he will be home tomorrow night).

It is time for me to sign off and go to bed… Joey is in a (hopefully short-lived)phase of waking up before 6:30 am. As always, thank you for your incredible support! Also, I have finally posted new pictures so be sure to take a look.

All my best,
Liz

Sunday, February 29, 2004 10:31 PM CST

Hello to all!

I know it has been too long since I updated but this will have to be a short one, as I really need some sleep....

I just wanted to let you all know that we are doing fine, Alex included. In fact, we have been enjoying some quiet time at home, catching up on some overdue projects. Jay and I have been working very hard on various projects for Alex's Lemonade Stand. This, in combination with catching up on household projects, Jay working a whole lot (at his real job),the everyday business(laundry, cleaning, cooking, chasing around Joey, etc. -- yes, it has been a reality check since my parents left), and of course, finding time to spend as a family, has left me little time to update the page.

Alex has continued to improve in almost every way over the past couple of weeks -- her mood is great, she is trying to eat well, she is learning a lot with her home tutor, and she is even getting around a little bit on her own (mostly crawling) and getting up on her feet a little bit. We are very proud of her, she is determined to get better again and is working really hard at it. We are all enjoying some time away from the hospital, with regular visits for platelets on Tuesdays and Fridays. She has started on her 3rd dose of ABT751 and is tolerating it very well -- she started on Friday and will finish on Thursday. Although there are clearly signs that it is working, we are extremely disappointed that she has started to cough and wheeze again. This is a recent development, with the first coughs starting just a few days ago but quickly worsening over the weekend. We will see what happens over the next few days with this and of course, keep you updated accordingly. Overall, she is feeling and acting great, which is something to celebrate!

The boys are doing really well -- Patrick and Eddie stay busy with school, friends, and just being boys; Joey stays busy (and keeps us busy) every moment of everyday, except for those precious naps. We will celebrate Joey's 1st birthday this week -- I can't believe that "our baby" is turning 1 already! I often say how much Alex inspires us and gives us hope , but honestly, Patrick, Eddie, and Joey also inspire us to be strong and give us a lot of hope for the future (as well as a lot of laughs).

One really cool thing to mention... Our State Representative, Daylin Leach, is going to introduce a Resolution to the Pennsylvania House of Representatives that details Alex's accomplishments and declares June 12, 2004, "Alex's Lemonade Stand Day" in the State of Pennnsylvania, "encouraging all residents to contribute to her Fund and other pediatric cancer causes". He has invited us to Harrisburg to watch them vote on and, hopefully, pass the Resolution. Once it passes, we will pick a date when he can officially present the framed resolution to Alex.

So, that's all for my super concise entry. I will update again later this week, especially if we find out the cause of this cough.

Thanks again for your outstanding support!
Love, Liz

Tuesday, February 17, 2004 10:27PM

Hello again!
I had to add a quick update to yesterday's entry because I can't stand to keep good news to myself! Alex ended up having a CT Scan today because the pain in her stomach was so unbearable(that is not the good part). Dr. Maris wanted to make sure that we weren't missing anything by attributing the pain to the "radiation burn". Well, after her CT Scan today, Dr. Maris caught up with us in the day hospital (she was getting a platelet transfusion) and his exact words were "well, Alex, your CT Scan looks great!". He was happy to bring us some good news for a change -- the tumor on her windpipe and in her lungs clearly responded well to the radiation. In addition, a couple of other tumor areas that were not radiated were significantly reduced and the belly tumor was stable. This means that the experimental ABT751 is working against her cancer! It is such a wonderful feeling to receive some good news after all the setbacks over the past few months. Although we know that new treatments often work well initially against her cancer only to be come ineffective after a few cycles, we are still ecstatic at this news. Alex's reaction to the news was one simple statement "We should have cake tonight!". She also said today, after I cautiously reminded her that she has a long way to go -- "it is a little step in the right direction, just enjoy it". So, on that advice, I will do just that and am sure that you all will too!
The second part of the news was that the pain is clearly from severe inflammation of her esophagus. She is comfortable on morphine for the pain and this should clear up in the next week or so.

I kept my post from last night, since many of you have not read it yet.
Good night!
Liz






Monday, February 16, 2004 12:28 PM

Dear Friends and Family,

When I last updated, Alex was in the midst of radiation treatments and getting ready to start her next 7 day course of chemo (oral ABT751) on the following Wednesday.

Her radiation treatments went very well. The radiation oncology therapists at HUP were extremely kind and pleasant to work with. In addition to making sure that her experience there was as stress free as possible, they also surprised her with presents on the last two days of treatments. She finished her 10th radiation treatment on Thursday, the 12th. Thank you friends at HUP!

Also, she started her 2nd round of ABT751 (an experimental oral chemo) a few days early. This decision was based on Dr. Maris’ recommendation – he was pleased with her improvement overall, her counts were holding up, and he wanted to get her on a schedule of starting the 7 day course on Fridays (the day we see him in clinic). So, she started on her daily dose of ABT751 (she swallows 3 pills nightly) on Friday, the 6th and finished on Thursday, the 12th.

So, we left the hospital in a very good mood on Thursday, knowing that radiation was behind her and that she had one last dose of chemo to take that night. Furthermore, we arrived home to our newly installed cable tv (we are finally moving into the 21st century) and she had her favorite cartoons to look forward to watching. We felt like celebrating, so Alex and I decided to head over to Penn Wynne School to visit her class for the Valentine exchange. Alex handled her re-entry to school (it has been a long time) perfectly and sat at her desk next to her friend Maddie to open Valentine cards. She is still pretty wiped out in general, so we only stayed about half an hour before she was clearly ready to go. I was very proud of her for making such an effort to go the party with everything she has going on.

Overall, she continues to improve, although she is having more stomach aches than ever. We were told that the radiation to her windpipe would probably cause a lot of heartburn/indigestion/discomfort when she ate. They compared the feeling to having a sunburn on her esophagus and recommended that she eat cold foods like ice cream and popsicles. We are not sure that this is the cause of the stomach problems but it does seem likely, as the pain is pretty high in her belly and is dramatically worse after she eats. Also, she is able to eat popsicles all day without a problem, but has not been able to eat many other foods over the past few days. She has an appetite but almost every time she eats, even a little bit, she complains of pain. So, despite taking three medicines for acid stomach, nausea, and indigestion she still is uncomfortable off and on all day. We are hoping and expecting to see her improving over the next couple of days but is she doesn’t she will probably have an ultrasound to rule out something else going on in her belly.

Other than the stomach aches, she appears to be improving overall. Her broken leg has healed and she has been able to bear a little weight on it – she has a lot of strengthening to do to get back up on her feet. Unfortunately, her stomach troubles are interfering with her ability to work on getting her strength back. She will be starting in home physical therapy this week, if we can work it into her schedule. Her counts have been holding up pretty well, with her continuing to need platelets 1 – 2 times a week (an improvement, believe it or not!) Also, her white count and hemoglobin have not crashed drastically on the new chemo, which was exactly what we were hoping for. Her coughing is not an issue anymore, so it is obvious that her tumors have responded well to the radiation and/or the chemo. We are very anxious to find out if the chemo is working and she will have a CT Scan to assess her disease sometime in the next couple of weeks. Finally, her mood has also improved but she has had some pretty tough days, emotionally. Most days, she is such a trooper, very polite, pleasant and really not complaining very much about anything except her stomach, but then she has days where she can’t hold it together and has to “let it all out”. Everyday has been a struggle for her over the past few months in one way or another. Jay and I are just holding out hope that we will get some good news that the chemo is working and she will get past this stomach problem soon so she can enjoy life again.

This week will be a welcome change to our hospital schedule, with plans to get counts checked and probably get platelets on Tuesday and Friday. Other than those days, we hope to avoid the hospital unless absolutely necessary. She will repeat that schedule next week, with a CT Scan thrown in sometime. If the CT Scan shows improvement and/or stable disease we will continue on with the next 7 day course starting on February 26th. If the scan shows progression or any other surprises we will have to regroup and discuss options again with Dr. Maris.

Jay and I continue to be very grateful for all of the support we receive daily – emails, phone calls, cards, gifts, and visits. Over the past few weeks we have had many family members visiting from Connecticut and are so appreciative of them all making the trip down here. Also, the community here continues to support Alex and our family in a big way – our friends, Penn Wynne School, and countless others. On Valentine’s Day our family was invited by Phil Martelli, coach of the undefeated St. Joseph’s Men’s Basketball team, to attend their game. We were pretty impressed that Phil took the time to call us and let us know that he is thinking about Alex –he has been a supporter of her lemonade stand in the past and is a very caring person. So, we did make it to the very crowded game on Saturday and watched St. Joe’s beat University of Rhode Island in front of a sold out and very enthusiastic crowd. Coach Martelli also made sure that they announced that Alex was there as his special guest to which the crowd responded with a standing ovation! Thanks St. Joe’s Athletic Department for managing to get us tickets to the sold out game – Let’s Go Hawks!!!!!!!!!!!!!!!

One final note on Alex’s Lemonade Stand Fund – it continues to steadily receive donations and inspire others to help her cause. Last week in Atlanta, some local bands held a benefit concert with proceeds going to Alex’s Lemonade Stand Fund. The concert was a huge success and we were tickled that this group of young rock-n-rollers would take such an interest in Alex and her cause. Special thanks to Derek from Royal7 who went above and beyond in showing his support for Alex. For more about this group and the concert, you can go to their cool website www.royal7.com (parents, it is a rock-n-roll site!). Also, plans are coming together for 2004 and it promises to be a great year for lemonade! We have stand in over 40 states on June12th, with many states hosting multiple stands (you can get more info at www.alexslemonade.com ). Also, we are working on a number of other fundraising initiatives, thanks to our great group of volunteers. Alex’s determination and the amazing response to her cause inspire us all to work harder to reach our goal – better and more effective treatments for kids with cancer.

Happy Valentine’s Day!
Liz

Thursday, February 5, 2004 0:19 AM CST

Hello to all,

We have been very busy since Alex came home from the hospital on Friday, with many visitors and daily radiation treatments.

The weekend was busy with visits from Jay’s family – Uncle Aaron, Aunt Pam, Aunt Kerri, Uncle Ruslan, Grandma Judy, Grandpa Pat, and the newest family member, 3 week old Marina! Aaron and Pam arrived Saturday evening and the rest of the gang arrived Sunday morning. We were all thrilled that they were able to come all the way from Connecticut for a visit. It was a special treat for all of us, especially Alex, to meet little Marina, just three weeks old and cute as can be. We spent Sunday visiting and hanging around the house, enjoying each others company. Alex was pretty sore over the weekend, due to her port removal and replacement, but I have no doubt that she appreciated having so many family members for support. Also, I should mention that my parents are still here, taking care of us all – thanks, Mom and Dad!

Monday morning, Alex and I headed back to the hospital for her 2nd radiation treatment. The treatments are going fine, she handles them beautifully with few side effects so far – we think they are adding to her fatigue and stomach upset, but these were issues before the radiation as well. We also checked in at CHOP for blood counts and were pleasantly surprised to learn that she did not need platelet or blood transfusions and that her white count was doing fine. So, we arrived home by midday Monday and were able to enjoy the rest of the day with our visitors.

Tuesday morning we headed into the hospital again for radiation after saying our goodbyes to Grandma, Grandpa, Kerri, Ruslan, and baby Marina (they headed back to Connecticut Tuesday morning). Aunt Pam was kind enough to accompany us to the hospital and certainly made our 1 ½ hour wait at radiation oncology much more bearable. After Alex’s treatment, Pam, Alex, and I agreed to head downtown to eat lunch at Johnny Rockets. Unfortunately, Alex was both tired and nauseated by the time we arrived, so she patiently watched Pam and I eat lunch before we headed home. She had a tough afternoon, with an upset stomach and general misery, but turned around a bit in the afternoon and evening.

Today was another trip to the hospital for radiation followed by a platelet transfusion in clinic. Again, Pam joined us for our day at the hospital, which made our day brighter – thanks Pam! Her counts today were not as impressive as Monday, with both low platelets and a drastically dropped ANC (white blood cells that fight infection). We are keeping our eyes on that white count/ANC and will help it recover by giving her growth stimulant injections over the next few days. Overall, Alex had a better day today than she has had since she came home from the hospital last week, despite being very tired. We think she is improving a little bit each day, both physically and emotionally, and are so hoping to see this trend continue.



Basically, she is having periods during the day where she is unhappy, usually due to being extremely tired, stomach aches, or both. She is also having periods of the day where she is much livelier and interested in eating and playing. So, we are just taking things hour by hour and remaining cautiously hopeful that the treatments are helping her.

On a positive note, her coughing is almost resolved, a hopeful indicator that the radiation and/or the new chemo are shrinking the tumor on her windpipe that was threatening her airway. Also, she tolerated the experimental chemo pretty well and should start her next 7 day course on schedule next Wednesday (the schedule is 7 days of chemo, followed by 14 days off). We are anxious to learn if it is keeping her cancer in control, or better yet, reducing her tumor load, but will need to be patient as she still has 6 more radiation treatments, overlapping with the next 7 day course of chemo. I am sure that we will not scan her until the treatments have had time to work and we can get a fairer assessment of their effectiveness – probably in a few weeks.

Her lack of appetite and her very inadequate food intake are quickly becoming major problems. The medication they put her on to increase her appetite has not had a dramatic (or even noticeable) effect on her food intake and she continues to lose weight. Honestly, at this point, lack of nutrition is probably playing a big part in her fatigue and mood. Dr. Maris agrees that we need to address this issue, so we will discuss possible solutions and develop a plan with him on Friday.

Jay and I would like to thank all of you for your unbelievable support – Alex has received countless presents, cards, flowers, and other goodies. Kindness and support come in all shapes and sizes and we truly appreciate all of the ways you have shown us how much you all care about Alex and our family.

As a final thought, I would like to share with all of you the following poem, written by Alex’s Aunt Lisa for her 8th birthday.

DREAM

When you face one more day where you’re too tired to play,
And that same awful pain just won’t go away,
Close your eyes and dream.

When each second of the hour feels way too long,
And all of your choices just seem wrong,
Close your eyes and dream.

Dream of unicorns, and a bright rainbow,
Of moonbeams reaching earth below;
Dream of purple, sparkly, puffy things,
And princesses with fairy wings.


Dream of flying through a starry sky,
With crystal comets flashing by,
Of birthday candles burning bright,
And snowflakes falling soft and white.

Dream that warm, safe arms are hugging you,
Just like Mom’s and Daddy’s do,
Dream of all the people you’ve touched, who smile,
And say you’ve made their life worthwhile.

Dream of all the kids you’ve helped to say,
“I’m feeling better every day!”
Dream of shining power deep within,
To face the darkness and scream “I win!”

For in dreams we make our hopes come true;
We shade the glass we’re looking through,
And despite how it can often seem,
Nothing can take away your dreams.

Everyone who knows you is dreaming for you,
That your days will get sunny and your skies be clear blue.
That you’ll get all you need and then so much more,
That you’ll never feel sick and your spirit will soar!

See, we don’t have to dream, the way some people do,
About strength, love or courage, for we know they are true.
You’ve shown them to us by the way that you live,
Through all that you go through, your one wish: To give.

So dream really BIG of all you wish for,
Close your eyes tight and look forward to more,
And remember with every fight you go through,
We love you and know all your dreams will come true.

Wednesday, January 28, 2004 0:15 AM CST

Dear Friends and Family,

Alex is home and very,very sore from getting her new port, especially her neck. The port replacement was a little tough because her old port had been in so long, but we hope she will start feeling better today.

Alex had her first radiation treatment to her lung and windpipe area on Friday....we will give a full update soon..

----------------------------------------

It has been a very long few days, with frequent updates, so I will try to summarize as best I can…

As you all know, Alex was admitted to CHOP on Sunday, for no particular reason except that she felt poorly all weekend and finally asked to go into the Emergency Room, in hopes that they could make her feel better.

Her primary issue over the weekend was a severely upset stomach, to the point of tears. We think her already fussy stomach was completely “overdone” when she started on a new antibiotic for a urinary tract infection on Saturday. This was easily remedied by replacing the oral antibiotic with an IV antibiotic when she arrived at the hospital. We think her stomach is feeling better but she has not eaten much over the past few days. She says her stomach feels fine but offers no explanation for not eating (she is not big on talking these days).

Her second, much more serious, issue continues to be lung/respiratory related. Although she seemed to recover from pneumonia and her wheezing was improving, her coughing fits started to worsen over the past week. We believe that she may still have a fungal infection, which looks to be improving, in her lungs. Her oxygen level indicated that she was clearly getting enough air and her “breathing sounds” have improved. However, she has been having these awful jags of coughing, again to the point of tears. Her CTscan yesterday, to our despair, revealed that her tumors have grown considerably. The tumor on her windpipe is now compressing her airways and requires immediate attention. Also, the questionable area on her left lung has clearly revealed itself to be a tumor and it too has grown considerably. This is an indicator that her disease in general is most likely progressing in all areas (bones, bone marrow, liver, etc). Obviously, cancer progression at this point in her treatment is devastating (for lack of a better word) – her options for treatment are limited since she has received all proven therapies and many experimental therapies.

Her third issue, which oddly enough is a relatively small concern right now, is that she has a broken femur. The underlying problem is that her bones are very fragile due to the progressing disease in her bones. We did not consult an orthopedist about her broken bone since the recommendation would have required her to most likely endure a rebreaking of the bone and casting in a half-body cast. This is way too much to expect of Alex with all of her other problems right now. We are being extra careful with positioning and she is not allowed to put any weight on the leg. It should heal pretty quickly but will be susceptible to another break.

First of all, Alex will be starting radiation treatments on Friday – they will radiate the tumors on her windpipe and lung. The best case scenario -- the tumors will shrink/disappear and alleviate her coughing. The worst case scenario – the tumors will not respond to the radiation and her breathing will be further compromised, a very serious situation. She is also still getting the ABT751 – the experimental chemo that she started on last week. Tonight was her last dose for this month and we will watch closely over the next couple of weeks for signs that it is working. She will not have another scan for a few weeks but her symptoms will probably indicate if it is working or things are getting worse.

Dr. Maris arranged a conference to address all issues and prepare for all scenarios (best, worst, and everything in between). So, today Jay and I met with Dr. Maris and a support team that specializes in providing the intense type of care we require for Alex at this point. The meeting was honest and productive, and we left with a clear plan for providing Alex with the best care we possibly can. We decided that Alex’s mood, her lack of appetite, and her general malaise were all closely related to her overall situation. She is not only having a difficult time physically, but she is also having a terrible time emotionally, as you can imagine. So, we all agreed that we should be treating her with a “stimulant” type of drug that will increase her energy level and appetite (hopefully without many other side effects), especially as she heads into two weeks of radiation. She has been understandably very sad lately, with periods of happy days. It goes without saying that we all want to see her smiling, laughing, and enjoying herself more often. If her tumors respond to the radiation and if the new chemo can stabilize her disease, we think her mood and her activity level will improve. We all agreed that some physical therapy could only help her, both physically and emotionally. She needs to make progress in some area and has expressed interest in crutches to get around while her leg is broken. So, they are going to arrange some physical therapy – only as much as she will tolerate and nothing too intense, with the goal of motivating her to get moving and to have some fun. One final note on the medical stuff, Alex will be getting a port removal and replacement on Thursday, with a possibility of coming home; depending upon what time of day she is finished with the procedure (minor surgery). If we do not come home on Thursday, we are planning on coming home Friday, after her first radiation treatment.

The second part of our planning was a much more difficult discussion, but necessary. The support team we met with consisted of a doctor, nurse, and social worker who are available to us 24 hours a day, 7 days a week. They will coordinate in-home nursing care as well as provide medical, insurance, and home care related advice. We discussed having hospice or home care nurses coming into the home, starting with just once a week. This will allow us to hopefully decrease the number of visits to the hospital as well as establish a good relationship with some great nurses who can guide us through this very difficult time. If the latest treatments do not work and Alex’s condition continues to deteriorate, we will be able to increase visits as needed and assure ourselves that we are prepared to provide her with excellent care at home. If she improves then we will cut back the number of visits, with the goal of bidding farewell to the team.

As I said, it was a very productive meeting and we left feeling very fortunate to have such an experienced and caring group of doctors and nurses looking after Alex (and our whole family!).


Our minds and hearts are very heavy with worry, fear, and the stress of not knowing what tomorrow will bring. On one hand, we are still hopeful, as is Dr. Maris, that we can provide her, at least, with some relief from her physical symptoms. At best, we are still holding out hope that the radiation and the new chemo treatment will turn things around for Alex and we will see steady improvement in all areas, including cancer regression. However, we must be honest and realistic that she is at a very crucial point right now and that we do not have the luxury of trying multiple different treatments over the next several months – we need these treatments to work quickly and effectively. Since we cannot predict the future (especially with The Amazing Alex, who has surprised us all before), we are completely trying to operate in a survival mode – getting through each day and hoping that tomorrow will be a good day. Spending time together as a family is every bit as enjoyable as always, and the kids are a great inspiration for us to be strong and enjoy each day as much as possible.

Tonight Jay and Alex are spending some quality time together – playing hospital bingo (she won twice), watching American Idol, and playing Game Cube. Alex really need a change of faces at the hospital and Jay reported that she was in pretty good spirits tonight (I always knew I wasn’t as much fun as Daddy, but who is?!) I also needed a change of faces so I was very happy to come home for the night and spend time with Patrick, Eddie, and Joey.

As always, we appreciate your support and concern for our family. Special thanks to my mom, who once again has come to my rescue (she arrived tonight by train)! Also, thanks to Jocelyn and Carly, our faithful hospital friends, who took time out yesterday to spend a good part of the day with a very cranky girl. Finally, we have to mention our wonderful friend Ligia who picked the boys up from early dismissal at school (so that Jay and I could both spend time at the hospital), brought them to karate,and kept them completely busy and happy until 7 pm tonight. As if that was not enough, she had her amazing chocolate soufflé and a bottle of wine waiting for me to take home when I picked up the boys (see how spoiled I am!). I don’t know how we would manage without you, Ligia – thank you!

Thanks again for all of your support – it truly does help us through tough times.
Love, Liz

Monday, January 26, 2004 10:08 AM CST

Well, Alex is in the hospital.

We received more upsetting news today. Alex had a CT scan todayand the results are not encouraging. They show some growth in her lung nodule and compression on her windpipe. Her oncologist wants to start some radiation to the area as soon as possible (Alex seemed some what relieved at this thought). We will discuss this tomorrow afternoon and we will let you know what we decide.
_______________________________________

Alex had a pretty good day Saturday. She had some coughing fits and an upset stomach but her mood was good. She rested at home while Patrick, Eddie, and dad went to Patrick’s first karate tournament. Patrick did very good, especially considering it was his first tournament and he was very nervous.

Alex was feeling very bad Sunday and asked to go in to the hospital (we know that when she asks to go in she is feeling horrible). She is on a couple of IV antibiotics to try and knock down her infections. It also looks like she will have her port (catheter under her skin in the chest area that she gets ivs in) replaced this week. When they replace her port they are going to try and biopsy her lung to see exactly what we are dealing with (fungus or tumor).

It has been cold here in Philly and we are ready for spring.

We have been very busy preparing for the 2004 Alex’s Lemonade Stand on June 12th. Our goal is to have a stand in all 50 states. The states we still need are: Arizona Nevada Wyoming Colorado New Mexico North Dakota South Dakota
Kansas Wisconsin Indiana Mississippi North Carolina
West Virginia Kentucky Delaware
Alaska Hawaii Rhode Island(not definite).

If anyone know someone who might be interested in hosting a stand in one of these states (or anywhere else) let us know.

Take care

Tuesday, January 20, 2004 0:38 AM CST

Just a quick addition to the memo below. Alex started on her new oral chemotherapy on Wednesday. She will be on it for 7 days...We also found out that she has a small fracture in her upper right femur, which explains why she has not been able to walk....She has to rest her leg, it has started to heal.

Hello everyone!
You all are extremely thoughtful and generous to send Alex your birthday wishes and presents! With your help, she had a very special birthday week with presents and cards arriving daily as well as quite a few very special visitors.

Let me fill you in on the events of the past week…


When I last updated, Alex had just received her first dose of IV Doxorubicin on an outpatient basis. The few days following the Doxorubicin were pretty rough due to a very upset stomach, extreme fatigue, ear/eye infection, her coughing & wheezing worsening again and a constant low grade fever. By Monday morning, we were very worried about her – she was not eating, she was sleeping about 15 hours a day, and was basically pretty miserable. Our trip to clinic on Monday did not ease our fears as she needed both platelets and blood since both counts had dropped drastically over the weekend. However, her ANC continued to be super high (over 9000) which told us all that she was probably fighting some kind of infection. So, it was decided that she would receive a 24 hour IV antibiotic while we were waiting for her platelets and blood. Well, by the time she received her antibiotic, pre-meds, and platelets, she was coughing profusely, her oxygen level had dropped to 90 per cent and her blood pressure had jumped up a bit. She ended up needing oxygen (believe me she was not happy about it) to get her oxygen level up above 95. They also decided that she was retaining fluid, evident in her slightly swollen feet, “wet” cough, and declining oxygen level. By this time it was 5pm and it was decided that she would get Lasix (a diuretic to help her lose some of that fluid), we would go home for the night, and come back in the morning for blood. We arrived home at 7 pm and she went straight from the car to bed and slept a solid 15 hours.

Tuesday brought more of the same, with a return trip to clinic for blood. We noticed that her cough was quite improved after the Lasix and were happy to see that her oxygen level was back to normal. We also saw both Dr. Leahy (another oncology doctor at CHOP) and Dr. Maris. I was really worried about Alex, mostly because she was so miserable and just couldn’t tell me what was wrong. Dr. Maris suggested that she was probably a little (or a lot) depressed and that the best thing for her would be to spend the next couple of days away from the hospital, if at all possible. So, we left there Tuesday afternoon with the intention of not returning to clinic until Friday. We arrived home to find that several birthday gifts had arrived in the mail that day -- the perfect way to kick off her birthday week!

Wednesday was really the beginning of the birthday fun! She woke up in a good mood on Wednesday, knowing that her big day had arrived – she was getting her ears pierced for her 8th birthday, as promised. Right after breakfast, a group of teachers and support personnel from Penn Wynne Elementary (our awesome elementary school!) arrived with birthday surprises for Alex. Among the surprises was a giant (and I mean GIANT) birthday card signed by every student in the school, it was very touching to see that all of the children were thinking of Alex. A little later that morning, two busloads of students from the school pulled up in front of our house and the Penn Wynne Singers treated Alex to a serenade of Happy Birthday on our front lawn. It was so sweet that they took the time to make a special trip to our house just to sing to Alex. As soon as the singers left, we were off to get Alex’s ears pierced. Alex was quite nervous but she was great – she didn’t cry and said it hardly hurt at all. She chose beautiful diamond starter studs for her first earrings and they look perfect on her. The Birthday fun continued throughout the day on Wednesday, as more presents arrived in the mail and we had several more visitors from Penn Wynne School. Alex’s teacher and the school counselor stopped by with an unbelievable gift for Alex – a quilt from her class with each square containing a drawing and a message from each of her classmates. It was an extremely thoughtful and special gift that we will always treasure! Her special day of visitors certainly paid off and she went bed with a smile on her face – thank you Penn Wynne School, we could not ask for a better school or a more caring group of teachers!

Thursday was another exciting day, as the boys had a two hour delay for school due to some snow that fell over night. We had our second knitting lesson with Laura from Handiworks Studio – a great distraction for both Alex and me. Again, a huge number of presents arrived throughout the day as well as a few visitors to brighten her day. Eddie’s teacher, Ms. Schreffler, stopped by with cards from Eddie’s class as well as a homemade ice cream cake for Alex’s birthday. Also, later that day a couple of teachers from the school arrived with some goodies for Alex and visited with her for quite a while. The excitement continued as my sister Margaret arrived by train around 7:30 that evening. Alex was smiling, giggling, and seemed to be feeling good most of the day.

Friday we were back in clinic for counts and to see Dr. Maris. Alex was all smiles as we walked into the playroom (with Aunt Margaret along for extra fun) to see that they were having a beach party. The idea for a beach party came out of a conversation that we had with the nurses and the child life specialist one day about Alex not going to the beach at all last summer. I was very touched that they planned the beach party for the Friday before Alex’s birthday, knowing that it would make her day special. Overall, things were certainly improved from the beginning of the week, but we still had a couple of concerns. She was coughing quite a bit again and her feet again were swollen. Also, she was having real difficulty walking on her right leg and I thought it was probably her hip, since she had fallen on it a couple of weeks before. She was only complaining of pain in her leg when she walked, but knowing that she does not have full pain sensation in her legs, we wondered if there could be something broken, dislocated, etc. After getting her counts checked, we were encouraged to see that, although she needed platelets, her counts were overall pretty good for one week post-chemo. Also, she had an xray of her hip to make sure it was not obviously broken or dislocated, which it wasn’t. Later that day she received platelets and more Lasix to relieve the fluid buildup. We left for home late in the day, tired from a long day, but happy to be heading home with things taken care of. Again, we arrived home to loads of presents and a visit from my sister Sue. Sue drove down from Connecticut for the night and we all had a great time hanging out with her and Margaret.

Saturday was another fun day; Alex was feeling the best she has felt in a long time and was laughing and beaming all day. She again received loads of presents and was thrilled as she opened her packages. She spent the day playing with her new toys and visiting with her aunts. As soon as Aunt Sue left for home, my sister Marianne, her husband Tracy, and their kids Shannon and Steve arrived from Connecticut. We had a great night with them, playing games, laughing, and just having a good time.

Finally, on Sunday, her actual Birthday arrived! We all headed over to Build-A-Bear for her birthday party on Sunday morning. The kids all had a great time designing, stuffing, and dressing their own stuffed animals. Alex seemed to enjoy it but definitely was tired out and ready for home by the end. We spent the rest of the day hanging out at home with our family and friends and enjoyed dinner compliments of Tracy (loves to cook) and ice cream cake compliments of Ms. Shreffler (Eddie’s teacher). We all enjoyed ourselves, especially Alex, and her birthday could not have been better. The birthday presents and cards arriving all week, the special visits from teachers, friends, and family, and the encouragement she received daily from all of you made for one unforgettable birthday! Thank you all so much – we are so lucky to have such a great group of people who care about Alex and our family.

Well, just when you thought her birthday had to end…. We had one final and very special birthday treat today. Bree Jones, from the Philadelphia 76ers organization, contacted us to invite us to a game for Alex’s birthday. Of course, we were thrilled to be going to the game but were absolutely amazed when they said they would be sending a limo to bring us to and from the game. So, after the limo dropped us off at the game, we were greeted by Bree who informed us that Billy King (President of The Sixers) had made sure that we had really good seats for Alex’s Birthday. Imagine our surprise when she walked us onto the floor and showed us our seats, right next to the Sixers’ bench! The game was awesome,(except The Sixers lost to Seattle) . It is very exciting to watch a game from courtside and it gave the kids a chance to really see the game. We are always impressed by Bree, Lara, Billy, World B. Free, and HipHop (the mascot) who always manage to say hello to us and make us feel welcome and special. The Sixers have been outstanding supporters of Alex and her lemonade stand and we were already grateful to them for all they have done – now I am just beyond grateful to them for thinking of Alex on her birthday and making sure we enjoyed the game. GO SIXERS!!!!!!!!

So, here we are, another milestone for Alex – turning 8! It was almost exactly 7 years ago that she was diagnosed with neuroblastoma just two days before her first birthday. We were overwhelmed, heartbroken, and scared. I knew her diagnosis would change our lives forever, but I had no idea!! I never imagined that she would have the strength to fight her battle for 7 years. I also never imagined that her battle would lead us to a whole new life here in Philadelphia. I never could have imagined the impact her life and her fight would have on so many, and that she would someday be called a hero for raising money for her cause. Of course, I now know better than to underestimate Alex! I also know a lot more about life, love, and hope (and a whole bunch of medical stuff).
Happy Birthday, Alex!!!!!!

Well, tomorrow we are back in clinic for the usual counts and probable/possible platelets. If her counts are still decent she should be starting on a new chemo (ABT-751). I mentioned last time that Alex might be able to receive ABT751 but we were awaiting approval by the drug company and the FDA since she did not meet the entire eligibility criterion for the study. Dr. Maris informed us last week that he had already received permission from both for Alex to get the drug on “compassionate release”. Basically, it means that she can receive the drug even though she doesn’t qualify for the study based on the fact that he believes it has potential to help her. So, if all goes well tomorrow she will start taking it sometime this week. Alex is really enthusiastic about this because she only has to take one pill once a day for 7 days, then she gets 21 days off. Also, it shouldn’t hit her counts too hard (we’ve heard that before) and is not likely to have obvious side effects. The “icing on the cake” for her is that her hair will grow back. We are hopeful, but keeping ourselves in reality here – it could shrink her tumors, it could keep them stable, or it could completely not work. We will be keeping a pretty close eye on things and will know within the next month if it is working. Also, tomorrow, we will find out more about this leg swelling and pain, probably with an XRay.

Thanks again for all of your generosity and kindness over the past couple of weeks! I have to say a special thanks to my parents, who have been here for almost two weeks, helping out, watching Joey, and just making our lives better-- Thank you, Mom and Dad!

Gratefully yours, Liz

P.S. – Finally, new pictures on the photo page!

Saturday, January 10, 2004 11:42 AM CST

Dear Friends and Family,

It has been a very long and extremely difficult week here. The last time I updated, I was heartbroken and I only hinted at all that had occurred that day ….

Honestly, the MIBG scan results were disappointing, but we have dealt with disappointing scans before. Also, as Dr. Maris pointed out, this scan did not show that her disease had taken off quickly but rather showed a slow steady progression, which has been typical of her neuroblastoma since diagnosis. We also knew that he had a plan (more IV chemo followed by oral chemo or some other agent) so were prepared to deal with the disappointment and move forward as always. However, I was not prepared for Alex’s reaction to the scans and her opinion regarding switching to yet another chemo.
After I discussed the scans with Dr. Maris and he filled me in on his new plan for Alex, I told Jay and Alex basically what he had said. I tried to downplay the negative by telling her that he said most areas looked the same, meaning they are not growing. I mentioned that two “new areas of concern” did show up on the scan. I also mentioned that he was recommending that she start on an IV chemo soon. Well, it was obvious that Alex was devastated by the scan results and his recommendation. She immediately retreated to her room and starting sobbing. We had a very serious talk with her and I told her that Dr. Maris asked me if I thought that she was willing to continue her battle. I said to her “How should I have answered him?” and she shocked me by saying “You should have told him no!” After more discussion about what stopping treatment meant and what would happen if she stopped treating her cancer, she said she didn’t like either choice and it was a hard of a decision to make. However, she still insisted that she was not willing to get anymore medicine, chemo, or spend anymore time at the hospital. I knew she really understood what she was telling me when I said, “Would you like me and Daddy to decide what to do for you?” and she quickly said, “No, because you will just keep treating me even if I don’t want you to.” I couldn’t disagree with her! Anyways, I asked her why she didn’t want anymore treatment and her response was simple but heartbreaking -- “ It is too hard to live like this”. So, after we had a little cry (it is hard to find time for a “big cry” when you have three other children depending on you as well), I told her that whatever she decided was what we would do and that she wouldn’t get any treatment that she did not want. However, I also told her that I thought we should all think about things overnight and talk again in the morning. She sobbed for another 10 minutes or so and was fine the rest of the night.

Well, she slept fine all night but I, of course, did not. I was devastated that Alex was ready to give up and it broke my heart to think about what she was going through, physically and emotionally. I thought we would talk more the next day but that I wouldn’t mention it until later in the day, giving her more time to let it sink in. Well, I walked into her room in the morning and she immediately told me that she hadn’t changed her mind about getting the IV chemo but that she thought we should ask Dr. Maris about other treatments she could try. She said she was interested in a treatment that wouldn’t affect her counts too much and that wouldn’t cause her to have to stay over at the hospital (due to very low counts, fever, infection, etc). I told her that I thought it that was a great idea and how proud I was of her. We decided that I would call Dr. Maris that day rather than waiting until Friday.

I mentioned the other night that Alex and I were going to have our first knitting lesson on Thursday morning. The timing was perfect! Laura was due to arrive at 10:00 so it was the perfect excuse for Alex to get out of bed and get moving (she has been sleeping in a lot lately). Laura arrived right on time and I knew the moment we met that the knitting classes were a great idea – she is warm, friendly, and great with Alex. Not only that, but the first project she picked for Alex to knit is a little white cat (she didn’t even know about Herbert, Alex’s little white kitten). Alex caught on right away and was beaming with pride by the end of the hour (especially since I wasn’t catching on quite as easily). Alex spent a good part of the day working on her project and had a great day. Laura will return next week for another lesson and we are both looking forward to it. Thank you, Laura!!

As promised, I called Dr. Maris and told him Alex’s concerns about starting on something new and her reluctance to follow his recommendation. Her main problem was that the last time she was on an IV chemo for “just 2 days” she ended up really sick with low counts and was in the hospital for over 2 weeks. Dr. Maris is a very compassionate and understanding person and he addressed each of her worries. He also reassured me that, although the scans were disappointing, they were not devastating, and he still was “cautiously optimistic” that his plan would get things “moving in the right direction”. He said that he planned on giving her only ½ dose of one of the chemotherapies for the first cycle and that he did not anticipate that it would make her terribly ill or hit her counts too hard. We always expect her counts to drop pretty drastically when she gets any chemotherapy (no matter what the dose) but it is just a question of how low they will go. She also had concerns about her port but she refuses to get a new one. He agreed that it would be reasonable to give the port a break and have her use peripheral IVs as much as possible, but not replace the port. We agreed that he would explain all of this to Alex himself on Friday as she really trusts him.

So, by the end of the day Thursday, Alex had done quite a turn around. She was smiling, busy knitting, and completely agreeable to Dr. Maris’ new plan. Not only that, but she was in a better mood than she has been in for a very long time. I think that she was relieved that we had our discussion and that we are taking her wants into consideration for her treatment. I know it is hard for many of you to imagine allowing a child to make such a decision but Alex is no ordinary child – she knows more about chemotherapies, cancer treatments, and living with cancer than most adults. I think having control of her situation has given her a new outlook on things.

Friday we went to the clinic for counts and to meet with Dr. Maris. It went very well and he explained everything to us (and Alex) again. He also told us that he is looking into her starting on a different drug called ABT 751 (I think). It is a pill taken orally for 7 day cycles every three weeks or so. It does not affect counts, and so far, has had almost no adverse side effects in the patients he has used it in. Not only that, but he has some success in treating neuroblastoma patients with it. However, she does not technically meet the criteria for getting the drug (her platelets are too low) but he has applied for the drug for her anyways, hoping to get it on a “compassionate release”. If he gets the drug for her she would start it immediately but this could take weeks. If he doesn’t get it approved, then she will probably try the oral irinotecan in combination with two other drugs. In the meantime he recommended that she receive the single dose of Doxorubicin yesterday in clinic. So, after finding out she didn’t need platelets (yeah!) we went to lunch and over to the main hospital for an echocardiogram (the Doxo can affect heart function so they like to get a baseline before giving it). The infusion of the chemo went fine and we were home by 4:30, with a pretty good plan of treatment in place.

We are going to clinic for counts twice next week (hopefully no more) so things should quiet down a bit around here. We are finally putting that nasty respiratory bug behind us – with Alex finishing her antibiotic for pneumonia on Thursday. Her coughing is almost resolved and her wheezing does seem to be getting a little better. Let’s hope this means the new antifungal is working against those lung and liver nodules. The poor girl now has an ear infection and eye infection but that should clear up easily with the antibiotic she started today.

My parents are visiting and helping out with the kids, pets, and household stuff. It is great to have them here, we always enjoy their company. It is too cold to do much this weekend but we may try to get out tomorrow if Alex’s is feeling up to it.

Thank you all so much for the outpouring of support this week. We are so lucky to have so many people who care about Alex and our family. She has received a number of early birthday presents – thank you!! She always loves to get surprises.
I cannot begin to express how grateful we are to all of you for your support – it does get us through difficult times.

I will be sure to update in the next week sometime, including some new pictures.

Love, Liz
P.S. GO EAGLES!!!!

Wednesday, January 7, 2004 11:00 PM CST

Dear Friends and Family,

I am so sorry for keeping you all waiting on the news about Alex's scans. Her MIBG scan was this afternoon and unfortunately, it did not bring us the news we had hoped for.

As I mentioned, the MIBG scan is very useful in some ways (getting an overall picture of active neuroblastoma in her entire body) but not very precise (it does not differentiate between tumor in bone versus tumor in lung, etc.). The main reason for doing the scan was to assess her lungs and look for any "new" areas in her body. Her left chest area did show uptake of the MIBG, which means there is active tumor there. This could mean that the lung nodule we saw in her left lung is neuroblastoma but it could also mean that she has active neuroblastoma somewhere else in that region (her chest wall, her rib, etc.) The lung lesion in her right lung did not show uptake of MIBG which might indicate that the lesions are most likely fungal and the area in the left chest that is showing up as neuroblastoma is not actually in her lung. Dr. Maris' opinion is that she has a new tumor in her left chest area (lung or otherwise) and a fungal infection.
In addition to this, she has a large area in her pelvis that is showing dramatic uptake of the MIBG, indicating that it is also active neuroblastoma. This is a pretty drastic change from her last scan, where her pelvic bones showed little or no uptake. So, the overall picture is not a good one and we are at a crucial point in our decision making about our next step for treatment.

Dr. Maris has recommended, if we wish to continue this battle, that we try an IV chemo combo that Alex was on years ago for at least one month, possibly two months. The benefits are that, if it works, it is pretty fast acting and may slow things down considerably. The major drawback is that it will be likely to hit her counts hard and result in more time spent getting transfusions and possibly hospitalized for fevers. If we go along this route, then she would probably follow up this IV chemo will some oral chemo next month, again hoping to reduce her tumors, keep them stable, or slow things down. Our other option for treatment that we are considering is to enroll in a clinical trial which would allow us to try something totally new to Alex, with the hope that this "unknown" will prove to be effective against Alex's neuroblastoma. We are investigating this possibility and will talk with Dr. Maris about this tomorrow.

The other path we could choose at this point would be to stop treating Alex and let her enjoy being at home with us for as long as possible. Alex has been feeling "down and out" for quite a while now and she is obviously tired of it. She is almost 8 years old now (next week is her birthday!) and unfortunately, she knows a lot about cancer and that it is life threatening. She always wants to know the results of her scans and tests and today was no different. After hearing that she has new tumors, despite all of her hard work getting chemo over the past several months, she was very upset and discouraged. She did turn around her mood a little and went to bed a bit happier with the promise that we will talk about what is next tomorrow. We have started to allow her to have input into decisions regarding her treatment and will not move forward with any treatment that she does not want. Having said this, I think we will be able to come up with a plan that will allow us to continue to treat her in the best way possible, and that she will be comfortable with.

So, tomorrow we are home and enjoying a visit from my parents. Alex and I are having a knitting lesson at home, given by a very kind and generous friend of a friend who runs a studio nearby. Also, Alex's teacher/friend Kay will come for school in the afternoon. We may also try to do something fun (indoors, it is way too cold here!) to take Alex's mind off of her troubles. Friday we will meet with Dr. Maris and make a decision about our next step.


Alex's 8th birthday is next week, the 18th. I am going to try to make it really special, hoping to cheer her up. She is having a party at Build-A-Bear with some friends and I will be sending out invitations today.
I do not normally ask people to send Alex presents, as she wants for and needs nothing (and I am sure she would agree). However, I think if anyone would like to make her day by sending a surprise birthday package sometime in the next couple of weeks, that would be wonderful. I know gifts don't solve problems, but they usually bring a smile to her face, (even if only for a little while) and I am hoping they will cheer her up considerably. So, as far as gift suggestions go, I have none (I told you she wants for nothing, Sorry!) It does not need to be anything elaborate or expensive, it truly is the thought that counts here. If anyone is interested, you can send the gifts or cards to our home at 267 Henley Road, Wynnewood, PA 19096.

We are going full steam ahead with the 2004 Alex's Lemonade Stand. Our goal is to have at least 1 lemonade stand in every state on June 12th, 2004! We are well on our way, and even have a Canadian stand being planned. We have stands being run by a diverse group including: families, friends, schools, brownie troops, college students and senior centers to name a few. If you or anyone you know is interested in helping out drop us an e-mail.

I will update again Friday night or Saturday, after we know what the plan will be.

Thanks again for your support, it is greatly appreciated.
Love, Liz & Jay

Tuesday, December 30, 2003 11:00 PM CST

Dear Family and Friends,

Jay took Alex to CHOP first thing this morning for CT Scans of her chest, neck, and abdomen. She handled the scans very well, holding perfectly still as she always does. After the scan he took her over to the clinic to check her platelets since she has been eating them up this past week -- we were pleasantly surprised that they were over 170,000 (normal)! Her other counts continue to do well also, so we are hoping that she is recovering from the "double hit" of chemo last month. She should not need a platelet transfusion until at least Friday and possibly longer...

Dr. Maris called us this afternoon with the results of the scans. Unfortunately, the news was not what we had been hoping for... The nodules in her lungs look essentially unchanged. The tumors on her windpipe and in her lower pelvis also look basically unchanged. The two tumors that were radiated in September (the tumors next to her kidney and liver),look somewhat smaller. Also, there is a new lesion in her liver which looks the same as the nodules in her lungs.

What does all of this mean? Well, it means that certainly the chemo is helping a bit -- slowing things down (stable tumors) and shrinking other areas. The most disturbing finding was that the lung nodules are unchanged and that there is a new area of concern in her liver. The previous "liver tumor" was a tumor that was next to and possibly attached to her liver but not necessarily involving liver tissue. From what I gather from our brief conversation, the scan today showed a new area that is within the liver tissue that is most likely of the same biology as whatever is growing in her lungs. So, this begs the question... what is growing in her lungs? We were treating her lung nodules for the past six weeks with Diflucan, an antifungal agent. The fact that these nodules haven't changed either means that the fungal infection is not responding to the antifungal medication(and has now spread to her liver)or that her neuroblastoma has spread to her lungs (and her liver). Both of these scenarios are very serious but Dr. Maris is already coming up with a plan of treatment that will address both. She will be starting a new antifungal medication tomorrow, with the hope that the nodules, if they are fungal in nature, will respond to this agent and magically disappear over the next several weeks (wouldn't that be too easy!). He has also scheduled a MIBG scan for next week (no exact date yet). The MIBG scan is a whole body scan that should give us a general picture of what is happening with her neuroblastoma and specifically, it may indicate that the nodules in her lungs and on her liver are in fact neuroblastoma. Here is how this amazing process works, Alex will be injected with MIBG - a radioactive isotope that neuroblastoma cells "soak up". About 24 hours after the injection(and sometimes again after 48 hours), they will scan her entire body, looking for the "uptake" areas, which will primarily be the areas where she has active tumors. If the nodules in her lung show uptake of the MIBG, then we will assume they are neuroblastoma cells. The MIBG scan should also show uptake in the areas where we know there are active tumors and it may (hopefully not!) show us some active tumor areas that we may not have been aware of. It is important to note that the MIBG scans are not very precise and that sometimes active neuroblastoma will not show uptake. Although, I must say for Alex, who has had countless MIBG scans in her life, they have always given a fairly accurate picture of her disease. Once the MIBG scans are completed, we will have a more complete picture of what is happening in her little body and we will meet with Dr. Maris to discuss treatment options and develop a plan. So... once again we are playing the waiting game,(which we are getting pretty darn good at, I might add!).

In the meantime, she is also having port issues. I may have mentioned that over the past few months, Alex has been having problems with her port (the catheter under her skin that nurses can access using a needle and tubing setup and give her IV meds and transfusions through). Lately, her port has been treating her to a variety of problems -- leaking, bruising excessively, not flushing properly, and, as of two days ago, not working at all (they couldn't infuse through it once it was accessed). So, we are seriously considering having it removed and possibly replaced sometime soon. If we opt to do this, Dr Maris may be able to have the team who does this procedure also nab a piece of one of the lung nodules for biopsy. This will tell him exactly what we are dealing with (cancer vs. fungus) and better allow him to treat it appropriately. We will know more about this possibilty after Friday, when her port will be examined by an expert from Interventional Radiology.

We are all still coughing excessively and blowing our noses. Alex's cough is really taking a lot out of her. She is extremely tired and goes to bed very early most nights. She is also very inactive and gets very easily winded with minimal exertion, like walking up the stairs. Her mood is not wonderful but not miserable either,--she is such a trooper! The scan showed no evidence of pneumonia, which is great news. So, I am hopeful that she will recover from her cough and cold right along with us (maybe by next week?!).

We don't plan on going into the hospital until Friday when she will get her counts checked and see Dr. Maris. We will begin to discuss possible options for treatment with him on Friday, but as I said above, will withhold a final decision until the MIBG scans are complete.

Well, we do not have any exciting plans for ringing in the New Year but I am sure we will do something special as a family tomorrow night.

Happy New Year to you all!
Love, Liz

P.S. I left Sunday's update on here since many of you may not have read it yet.



SUNDAY, December 28, 2003

Thank you for being so patient with waiting for an update… our busy schedule combined with Christmas preparations (lots of shopping) got the better of me – something had to give (well, quite a few things had to give and among them was updating this page; I should also note that the other project I skipped this year was sending out holiday cards, so don’t think I forgot any of you!)

I hope you all had happy and healthy holidays! From what we have heard it seems that healthy holidays were in short supply this year, with the flu running rampant as well as some other upper respiratory bug going around. Well, at any rate, we know all about making the holidays happy, even if they are not completely healthy. We had a wonderful Christmas, despite a few little bumps. Early in the week, all of the kids came down with some combination of cough/cold/sore throat/earaches that just wouldn’t quit. Alex had and still has a very persistent cough with a little bit of a runny nose. Tuesday night we thought she was headed for a fever and possible hospital stay as her temperature was 100.7. Usually, the criterion for a hospital stay for IV antibiotics is a fever > 101.5 or a fever over 100.5 that persists. Well, we put her to bed on Tuesday with her temperature at 101.7, gave her Tylenol, and hoped for the best. She woke up a bit cooler on Wednesday (99.5) but was still coughing pretty severely. With her pretty lousy counts (ANC still around 100) already persistent wheezing and the underlying fear that her lungs are still compromised due to a suspected fungal infection, we were worried that pneumonia would settle in pretty quickly. We were going into clinic for blood counts anyways and while we were there she had a chest xray which ruled out pneumonia. So, there was no talk whatsoever of us staying overnight, which made us all very happy. She did need platelets again and made us all nervous as her temperature inched up to 100.4 just before her platelets finished infusing, at which point I asked the nurse not to take her temperature again! So, we left the hospital around 2:30 on Christmas Eve, happy to be going home in time to enjoy our evening.

In true Scott family tradition, we had left a few things to be done still (shopping for Christmas Eve dinner, bringing our dog Shammy to the breeder’s house to stay for a few days while we visited in Connecticut, packing for our trip to Connecticut, and all of our present wrapping). Well, we stopped on the way home to pick up a pot roast, which I needed to start cooking immediately. We decided to wait until Christmas day to bring Shammy so this gave us more time to enjoy ourselves on Christmas Eve. We ate our pot roast and baked ziti dinner and (finally) opened the presents under the tree. Our friend, Kay Sweet, (also Alex’s home teacher) joined us for present opening and dessert -- she is like a member of our family and we felt so lucky that she was able to celebrate with us. Anyways, our tradition is that everyone gets a gift from the family on Christmas Eve and one by one we opened our gifts. This year was extra special as we had a few extra gifts under the tree from our friends the Richters and a lovely woman who surprised us with packages for the whole family. Thank you Ligia, Andy, and Gail! After presents Kay and I headed out for some last minute shopping (yes, at 9 pm on Christmas Eve) for stocking stuffers. Finally, the kids were in bed around 10pm and the Santas got to work wrapping the presents and filling the stockings.

Christmas morning the kids were up by 7pm and Eddie was thrilled to report to all that Santa had come and left a “whole bunch” of presents. All of the kids were thrilled with their gifts, and their excitement and enthusiasm made me feel so lucky to be their Mom and so grateful for all that we have. Of course, I wish that Alex was healthy and that cancer was not such a big part of our family’s life, but nothing can take away from the fact that she is here with us, celebrating another Christmas and looking forward to a new year.

We quickly packed our things, Jay loaded up the car, and we headed off for our Christmas trip to Connecticut. We took a detour to Bucks County to leave Shammy at her breeder’s house. Sue and her husband were as friendly and hospitable as always and she even had gifts for the kids – she really is an amazing person and we always enjoy seeing her and her family. After a brief visit, we headed to Connecticut and had a relatively uneventful trip (one bit of advice, if you leave home on Christmas Day, make sure you bring baby formula with you because it is virtually impossible to find an open store that sells it! Oops!) We stopped for lunch, detoured looking for baby formula, and finally arrived at Jay’s parents around 7 pm. We celebrated with them that night and headed over to my parents for more Christmas the next day. A big part of our Christmas is visiting with our family in Connecticut, so I was very happy that we were able to travel there. It was another very special Christmas for all of us.

Unfortunately, the kids, especially Alex, were all pretty sick with runny noses and unbelievable coughs throughout the holiday. Friday morning, before we went to my parents’ house, we stopped at Connecticut Children’s Medical Center to visit with our old friends there and to have Alex’s counts checked. Dr. Altman, her oncologist who took care of her before we moved to Philly, and the excellent nurses there, always provide first rate care when we visit. Although her cough was pretty intense, Dr. Altman said that her lungs sounded clear and we were reassured by her ANC which was a shocking 6500 after being just 140 on Wednesday. Alex, much to our disappointment, did need platelets again so we “visited” with them for the better part of the afternoon before heading to my parents to finish off our 3rd day of Christmas celebrating.

Also, Friday night we attended my father’s 70th birthday party with my mother and all 8 of my siblings and their spouses/significant others. It was the first time that all 9 children and my parents have been together since before Alex was diagnosed in 1997. I was obviously extremely pleased to be a part of a family event at last and enjoyed the night completely.

On Saturday, after another night of Alex not sleeping due to her constant coughing and another low grade fever, we decided that we really should be heading home. We spent Saturday visiting with siblings and their kids, and headed for home in the evening. Our arrival home at 11 pm officially ended our Christmas and we collapsed into our beds! --except for our kitten Herbert who was ready to party all night after being home without us for a few days.

So, here we are, catching up on some relaxation and trying to rid ourselves of this awful bug that just won’t leave us alone. Alex had a better day today, thanks to a good night’s sleep in her bed, but she is still coughing and wheezing considerably. We will go to CHOP tomorrow for counts and I will have a doctor take a listen to her lungs. On Tuesday morning, she has a CT scan to assess the nodules in her lungs and the tumor areas. We will hopefully have some results on Tuesday and I will update as soon as we do. I am even more nervous than usual for this scan since we are still not sure if the lung nodules are fungal or cancerous; either way they can be very serious if they do not respond to treatment. On Friday we will discuss Alex’s treatment plan with Dr. Maris, as we always do after a CT scan. Again, I will be sure to update information as I have it…

Other than hospital stuff, we are planning a quiet week of relaxation, house organizing, and some family fun. The kids are off from school until next week so we will plenty of nice family time this week, a great way to bring in the New Year!

Thanks to all of you for your incredible support, it is always appreciated.

With love, Liz

P.S. I will try to post pictures tomorrow, I think the camera is working again.

Tuesday, December 16, 2003 0:30 AM CST

Hello everyone!

Please accept my apologies for not updating last week -- I know that many of you check the website regularly and look forward to reading the latest news. If I caused you to worry and wonder, IÂ’m sorry!

So, things have been pretty quiet here. Since I last updated, Alex finished her last round of chemo (irinotecan/vincristine) and, after only 6 days off, started her next 2 week cycle (more irino/vincristine). This decision was based on Dr. Maris’ recommendation – he felt that she could benefit from getting more chemo and getting it on the appropriate schedule of 5 days a week for 2 weeks. He also liked the fact that her blood counts have been doing relatively well (for her, at least) with her only requiring platelets once or twice a week. Also, the home chemo has made the chemo schedule much easier to handle and this also made the idea of pushing an aggressive schedule possible. Finally, he knew that Alex would appreciate having the week of Christmas “off” and boy, was he right about that! She had figured out in October that she would be getting chemo the week of Christmas and had reminded me several times that I needed to talk to Dr.Maris about figuring out how we would fit in our Christmas trip to Connecticut. Of course, I didn’t even need to ask him since he obviously knows our schedule for all major holidays by now!

So, she is already one week and a day into this cycle of chemo and is doing fine. Her blood counts continue to impress us-- as I already mentioned, she is only requiring platelets every 5 – 7 days or so, which is a HUGE improvement attributed to her stem cell rescue. She has not been requiring whole blood transfusions as often either, with her hemoglobin hanging around 10 over the past week. Also, her ANC (Absolute Neutrophil Count) which is an indicator of her ability to fight off infections and other illnesses has been steadily declining but still looks decent at about 1300 which means that she is not neutropenic (at high risk for getting a serious infection). If you would like more information about blood counts and what these numbers mean you can go to ... www.cc.nih.gov/ccc/patient_education/pepubs/cbc97.pdf
The home chemo has given us a huge break from the intense hospital visits, with us going to the clinic on Mondays and Fridays and the home nurse coming on Tuesday, Wednesday, and Thursday. That has been working out really well, and the home visits only take about an hour. Alex is enjoying our new found freedom so much that when I told her today at the hospital that we would have to come back on Wednesday for platelets she said “well, they better just give them to me today, because I wasn’t planning on coming back here until Friday!.” So, of course, that is exactly what they did (even though she was well above the level they would normally transfuse at) and, I must admit, it was a wise decision on her part.

Overall, she seems to be doing fine, although she still has good days and bad days. With all of the chemo, of course, she gets side effects like belly aches and diarrhea from the irinotecan and pain in her feet from the vincristine. Some days she is miserable and other days she is full of fun, we never know what to expect. My main concern at the moment is still her breathing difficulties. We believe that she had or may still have a fungal infection in her lungs. Although she has improved quite a bit on the anti-fungal medication, her endurance has not improved much and she still gets “wheezy” at times. Dr. Maris is also concerned about this and Alex is scheduled on December 30 for another CT Scan of her chest to assess her lungs, the tumor on her windpipe, and the tumors in her belly area. We are particularly interested in seeing if the nodules in her lungs have cleared up – indicating that they were probably fungal. If they are still there, she will need to see a Pulmunologist and probably get a biopsy done to determine if the nodules are fungal or cancerous. For now, she will remain on the anti-fungal medication and we will hope for the best.

Things have been pretty quiet in the Scott house lately, as we settle into our winter routines, which are thankfully much slower paced than our fall routines. Patrick and Eddie continue to take karate classes which keep us busy after school a few days a week. Patrick is very diligent about practicing his French Horn and is really enjoying the weekly lessons at school. We had report cards and parent- teacher conferences last week and both boys are doing really well. I hate to brag (o.k, sometimes I love to brag), but I was particularly proud of them both for not only doing well academically, but for getting high marks in all of the behavior and social areas – what great kids! And, so I am not accused of favoring anyone, I should also report that Joey is accumulating his own list of accomplishments – he recently managed to dial 911, he broke the digital camera (sorry, no new pictures for a while), and is obsessed with eating and drinking from the dog dish. Seriously, he is doing really well and I absolutely adore and spoil him. As you would expect, he gets away with almost anything so let’s hope I am not creating a monster here!

We are busy getting ready for Christmas and, for the first time ever; we went out and picked out a real Christmas tree. The kids have beautiful ornaments that their Grandma Scott gives them each year for Christmas and we also have some unbelievable handmade doll ornaments from around the world that JayÂ’s grandmother made years ago. It is wonderful to finally have a tree that shows off the ornaments so nicely. So, our plan over Christmas is to have our family celebration Christmas Eve with just the six of us (not counting animals). Christmas morning, after the kids open their presents from Santa, we will head up to Connecticut to visit for a few days with the rest of the family and some friends. I am looking forward to a relaxing holiday but donÂ’t expect to really relax until my shopping is complete (I havenÂ’t started yet, yikes!).

Also, we held another lemonade stand yesterday at a Reading Royals game (minor league hockey team in Reading, PA). Our friends, The Divers, not only arranged the whole thing for us, but they also set up the stand and worked it the entire game! Despite a relatively small crowd to due to inclement weather, we managed to raise $700 for Alex’s Lemonade Stand Fund. The Royals organization and fans were very enthusiastic and generous. Thank you Bill, Dottie, Nick, and Courtney Diver for all you did and for being so prepared – what great friends! Also, thanks to Don Scholz (Jay’s boss) who drove all the way from Delaware to work the stand. The Royals organization also generously arranged a fun trip for oncology patients and families – they provided buses to the game, great seats for everyone, food, and an aftergame party to meet the players. We took the team bus to the game, which was very cool and comfortable. The kids enjoyed the triple bunk beds with DVD players and privacy curtains – definitely the way to travel. Also, Alex dropped the puck to start the game and was thrilled that they let her keep it. Overall, it was a huge success – we raised money and had a great time doing it! Thanks again, Bill and Dottie!

I will probably not update again before Christmas, unless something changes with Alex and/or our holiday plans. Thank you again for your outstanding support of Alex and our family – don’t forget to sign our guestbook!

Happy Holidays!!!!
Love, Liz

P.S. Happy Birthday, Dad!!!!!!!!!!!!!!!!!!!!!!!!

Sunday, November 30, 2003 10:39 PM CST

Happy December!

Another Thanksgiving has come and gone and I can hardly believe that we are still fighting this fight. It was Thanksgiving weekend four years ago that we first traveled here to Children’s Hospital of Philadelphia for Alex’s first MIBG treatment. We came here then thinking we were coming for a one time treatment -- something to relieve her pain and give her “more time”. We had no idea that the dramatic response she had to that treatment would change our lives so much. The fact that her cancer was reduced so much by the high dose MIBG led to the recommendation by her oncologists to pursue more aggressive treatments. I would not have imagined that four years later our lives would still be so consumed by her hospital visits and her future would still be so uncertain; I thought this fight would be over one way or another. I also never would have guessed that Alex would become such a successful activist for childhood cancer. So, here we are, now celebrating Thanksgiving here in our home here in Philadelphia and still riding this roller coaster ride of good days and bad days. We obviously have a lot to be thankful for! Thanksgiving and Christmas are always times to reflect and be thankful—we are so grateful for our four terrific kids and the amazing support we have received from all of you. The list of what I am thankful for could fill this whole journal and believe me I feel truly lucky for all we have. However, for me the holidays always have their bittersweet moments filled with guilt that I can’t make the holidays perfect for my kids because we still have the stress of fighting cancer everyday, filled with questions of what the next year will bring, and a little bit of envy on my part for the moms of the world who are celebrating with their healthy kids.

So, before I depress you all, I am happy to report that Alex is doing fine. The past few days have been good days for her! She received her 8th of 10 doses of Irinotecan today (at home, on a Sunday morning, it doesn’t get easier than that!) and will receive two more this cycle (tomorrow and Tuesday). She is feeling good so far, with few of the GI side effects. She had a tough few days last week, culminating in a phone call the night before Thanksgiving because she said it was too hard to breath. Well, after scaring the doctor on call (they get nervous when you say a child says it is hard to breathe), we decided she really needed some rest after a busy day, rather than an “all-nighter” in the Emergency room. She woke up the next morning much more comfortable and she reported that the tightness in her chest was much better. Her breathing has continued to improve over the past two days, hopefully because the antifungal medication is working. She will have a CT Scan to assess both her lungs and the tumor on her windpipe, probably in the next couple of weeks.

The home care chemotherapy is working out really well. The first day Alex had a bad case of nerves and spent the day crying in anticipation. Fortunately, the first visit was so quick and easy that she couldn’t help but feel comfortable about continuing to get her chemo at home as much as possible. The timing of switching to home chemo couldn’t have been better because the stem cells have continued to work their magic – her ANC has been over 6000 and she only needed platelets once last week. This, in combination with the home chemo, means that our visits to the hospital have been greatly reduced – we only went in on Monday and Friday last week and hope to do the same this week. If things continue to go well, we are hoping to combine our Friday visit with Dr. Maris with a weekly platelet transfusion and only go to clinic once a week. This will allow Alex to go to school more (she hasn’t been in weeks) and give our whole family a break.

Alex and I drove to Medford, New Jersey to fetch her new kitten Herbert and bring him to her new home. Herbert is a Himalayan Persian 12 week old kitten given to Alex by the breeder, who is also a veterinarian. The people at The John Walsh Show arranged the whole thing as a surprise for Alex when she appeared on their show . Anyways, Herbert is a real sweetie and has bonded nicely with all of us, especially Alex. He loves to cuddle and play, but is happiest in someone’s lap. He has been sleeping in Alex’s room, often perched above her head on the pillow. He really is sweet (also a little mischievous). Our other sweetie, Shammy (our almost 2 year old Curly Coated Retriever), has handled the newest addition to our family quite well. The biggest problem we have is that Shammy will not leave him alone – she follows him, sniffs him, licks him, and finally tries to nibble his ear at which point Herbert usually protests by swatting her with his tiny paw. I think they will be good buddies before too long. I will post a cute picture Jay took of nosy Herbert trying to share Shammy’s supper.

Also, this past week we were invited to the Perelman Jewish Day School here in Penn Wynne to address the students at their Thanksgiving assembly. The students are participating in a Gym-a-thon over the next couple of weeks. They have chosen to help Alex’s cause by donating some of the money they raise through their event to her fund. We are so grateful to them and their generosity (the teachers have already given $400 to her fund on “jeans day”) and we are so honored that they wanted to meet Alex. After I spoke, we stayed for the assembly which was really incredible. I have never seen such an enthusiastic group of kids, teachers, and parents; they were all singing, dancing, and clapping their hands, it was wonderful to watch. Thank you Perelman Jewish Day School!

I also, have to once again tell you how great the people at The Philadelphia 76ers are… As I wrote a couple of weeks ago, Alex was honored once again as a Hometown Hero at their November 9th basketball game. She asked that Patrick escort her onto the court and he was thrilled (but nervous) to do it. Well, last Friday, Patrick was absolutely shocked to receive a letter from World B Free and Bree Jones of the Sixers congratulating him on being named a Hometown Hero. They sent him a plaque just like Alex’s with his name on it , thanking him for his contribution to the community. He was truly ecstatic and carried that plaque around all day – he was bursting with pride and we were all so happy for him. The fact that these busy people took the time to make sure that he was officially acknowledged for his support of Alex and her fundraising means so much to me. They are so kind, considerate, and caring – GO SIXERS!!!!!!!!!!!!!!!!!!

So, this week, we have a visit to clinic tomorrow for platelets (we think) and chemo. She will get her last dose of chemo on Tuesday at home. We are hoping to not return to the hospital until Friday for a doctor’s visit and maybe platelets. Things should be pretty quiet here this week (as quiet as things get with 4 kids, a dog, and kitten) and Alex is even talking about going to school a day or two!
As always, thanks for checking in.
Love, Liz

Thursday, November 20, 2003 11:39 PM CST

Hello everyone!

I am happy to report that the Good Housekeeping Heroes for Health Award Ceremony went very well. Alex was feeling good throughout the trip, although she did require pain medicine a few times for her feet and joint pain (we are not sure what is causing it, but we are assuming it is still from the stem cells engrafting since we do not have a better explanation at this time). We arrived in New York via train on Tuesday and were very grateful to have a car waiting for us at Penn Station. Upon arrival at Le Parker Meridian, Alex was very happy to hear that they had booked a suite on the 37th floor overlooking Central Park, and a special adjoining King Master Room for “our doll Alex”, as the note from Good Housekeeping read. They also sent up a back of goodies for Alex to share with her brothers (yeah, right), so we were off to a very good start. My parents and Margaret came over and visited for a bit and then we went for a quick swim in the rooftop (totally enclosed) swimming pool. Around 5 pm we headed out for a trip to American Girl Place and dinner at Jekyll and Hyde (a spooky theme restaurant).

Wednesday morning we walked a few blocks over to the Good Housekeeping Institute for breakfast with some of the other heroes and some of the people from Good Housekeeping and GE who were involved with the awards. From there, we were off to Carnegie Hall for a reception and awards luncheon. During the reception we met all of the other heroes, each of whom has their own incredible and touching story. It was truly an honor for Alex to be honored with this group which included:

Tanya Brown, a smart (and beautiful) woman who saved her nephew when he was shot by the DC sniper by acting quickly and calmly to get him the medical attention he needed to save his life. She came with her husband and two young sons. She gave a great speech about how she never imagined that her choice of nursing as a profession would save the life of her own nephew.

Rhonda Fincher, a mother whose 8th grade son tragically died from complications of heat stroke after football practice. She and her husband started the Kendrick Fincher Memorial Foundation to promote awareness and prevention of heat exhaustion and stroke to sports teams and coaches. I especially enjoyed talking to this mom who is so dedicated to making sure that what happened to her son doesn’t happen to others, since it can be prevented. Her speech was very touching as she told everyone that she doesn’t feel like a hero at all. You can read more about her son and her foundation at www.kendrickfincher.org .

Dr. Sheri Fink, a young doctor who has been working for the International Medical Corp since medical school. She has traveled extensively to extremely dangerous war zones to aid those in need of medical care. She described what she witnessed in Bosnia and how it changed her “career plans”.

Jessica Lynch, the very famous war hero, who bravely survived captivity and injury in the recent war. She is a very modest and sweet young woman. Upon arrival she immediately found Alex and chatted with her for a few minutes. I was struck by her gentle manner and how young and petite she is (I must be getting old!). Obviously, she is stronger than she looks and like Alex, very determined to be “normal” and walk again. She has started her own foundation called The Jessica Lynch Foundation with a mission of helping children of soldiers, especially soldiers who are killed while serving our country. She was inspired by her own experience with the loss of her close friend Lori during the ambush that led to her capture. Lori left behind two small children with a dream that they would go to college someday. Jessica hopes to make that happen for them and many other children of soldiers.

Goldie Hawn, who has become involved with Operation Smile, an organization that travels to foreign countries to perform life changing surgeries on children with facial deformities. She was not there, but sent a taped speech about a special kid she helped through Operation Smile.

Anyways, our own hero was called to receive her award by Matt Lauer (by the way, I didn’t kiss him, but he did give me a friendly pat/rub on the back as we were leaving, ladies don't be jealous!). The award presentation included a check for $10,000 to her Lemonade Fund and a beautiful silver award plaque engraved especially for her. The whole family went up with her and she held up a sign that read “Thank You GE and Good Housekeeping” as Jay announced that “Sometimes she feels like talking and sometimes she doesn’t, so we came prepared.” Jay also did a nice job of thanking everyone involved and explaining how the award money would be used. We asked the docs at CHOP (specifically Dr. Maris on behalf of the docs at CHOP) how they could best use $10,000 and they suggested that it be used to purchase a custom designed computer server. Many of their experiments now survey every gene on every chromosome in each experiment, thereby generating literally 30-40,000 data points per experiment. They have done hundreds of these experiments, resulting in a billion or so pieces of data on neuroblastoma. These experiments are already paying off, and they think they have identified some new drug targets that they are currently testing, but they think they are only scratching the surface of how these experiments can help. The “super computer” purchased with the award money will house all of the data and make it accessible to all neuroblastoma investigators at CHOP. They will also share the data with neuroblastoma researchers worldwide so that this rich and unique data set can be mined and used to its fullest potential. We think this is an exciting and interesting use of this money and are thrilled to be able to make it happen as soon as possible!

I would really like to thank my parents, my sister Margaret, Meg Wise from The Philadelphia Foundation, Dr. Maris, and Ann from Countrytime Lemonade for coming to the event and supporting Alex. You all made the day more special for our family! The folks at Good Housekeeping and GE were all so accommodating and friendly, it was a pleasure to meet them all. Also, I must say that we are very proud of Patrick and Eddie for handling themselves so well. It is not easy to have a sibling be the center of attention so often but they always willingly and happily participate in the events, without a single complaint (except Eddie didn’t care for the “grass” on his chicken, and was sure to ask everyone around him if they had “grass” on their chicken).

So, we arrived home last night around 7 pm and today it was back to reality… The boys went to school, Jay went to work, and Alex, Joey, and I headed off to CHOP for platelets and chemo. Alex’s counts have improved pretty impressively, with her ANC hanging around 4000 (hasn’t been that high in years), and her hemoglobin staying stable at 10.5. Her platelets have also improved, with her requiring platelet transfusions only twice this week – yeah! We are still holding out hope that they will continue to improve over the next month or so. Her platelets were 38,000 today which is a huge improvement for her, but she still received a platelet transfusion to get her through the weekend. Unfortunately she had a mild reaction to them so just to be sure, they had to give her more steroids, more antihistamine, and some Zantac. By four o’clock she had been given 3 doses of steroids, 2 doses of Atarax (like Benadryl), a dose of Zantac, tylenol, and Kytrel (anti-nausea). Finally, around 5 pm she had her first dose chemo for this cycle with a plan of her receiving the next three days of chemo at home. A home nurse will come tomorrow and each day after that to give Alex her chemo in the comfort of her own bedroom. Alex is very nervous about it because her port has been giving her problems a bit lately and she is so afraid it won’t work properly. If things go well tomorrow, I think she will stop worrying so much and enjoy the rest of the weekend. On Monday, we will head back into clinic for platelets and the 5th dose of irinotecan before the 3 day break for Thanksgiving. On Friday after Thanksgiving she will start up with the second 5 day cycle of the chemo.

Just 2 more days! We will be picking up Herbert and bringing him home on Saturday; Alex is so excited about this, as are the boys. I am so happy for her and I am looking forward to seeing her fall in love with him.

Next week Jay’s parents will be arriving for a few days and enjoying Thanksgiving with us. We can’t wait to see them and look forward to a really nice visit. I may not update before Thanksgiving, so HAPPY THANKSGIVING! We have so much to be thankful for, especially the support we have received over the past 7 years –Thank you!


Love, Liz

P.S. Check out the new pictures!

Friday, November 14, 2003 11:57 PM CST

Hello Friends!
Alex had a CT Scan today. We had some good news and some bad news.
First the bad news, one tumor between Alex's heart and spine has grown since her last chest scan. The true meaning of this growth is uncertain since she has not had a scan of this area since last March. It is possible that it was bigger than it is now at some point and we weren't aware of it. Also her lungs showed some nodules, which are believed to be a fungal infection. Alex will be starting on an oral anti-fungal medication today; hopefully the oral medication will clear up her lungs and alleviate the "wheezing" type breathing. (The IV anti-fungal medication is supposed to be a horrible experience,including high fevers and shakes). If the nodules don't improve on the anti-fungals she may need a biopsy to see if they are actually neuroblastoma (she has not had lung disease before).
The good news is that the tumor on Alex's kidney is drastically reduced - almost gone! -- and the tumor hitting Alex's liver has shrunk in half.

She will start on the same chemo again next Thursday. for 2 weeks. We are planning on having her get her chemo at home on the days we don't need to go to the hospital for blood products. This should free up our schedule and allow her to have a more "normal" life (HA!, like getting chemo at home for 2 weeks is "normal"!)

Overall, she is doing fine and her pain has improved dramatically, as predicted. Also her counts are showing signs of improvement, so we will see what next week brings!


Right now we are entertaining five 4th grade boys (not including our own) for Patrick's belated birthday party. So, I should probably get back to work here!

Thanks for checking in,
Liz and Jay

WEDNESDAY, NOVEMBER 12, 2003

Well, I know I am late with entering this entry so I’ll get right to the important stuff...

The last time I wrote, we were gearing up for her stem cell rescue (giving her back her own stem cells to help her blood counts recover). The stem cell infusion on Monday, November 3rd went very well. We arrived at clinic in the morning so that Alex could have her port accessed and receive her platelet transfusion before the scheduled 2:30 stem cell infusion. Actually, to call it an infusion might be misleading because it was just a straight push into her port. (To find out more about what a port is check out http://www.patientcenters.com/childcancer/news/sub_ports.html .)
For those of you who don’t spend loads of time at the hospital this means that the doctor simply took the giant syringe of her stem cells and pushed it directly into her port via the needle and tubing; it only took about 2 minutes total and it was over – very anticlimactic but, hopefully, very effective! Anyways, the day went fine, other than a mild case of the nerves on Alex’s part. She was a little nervous about the “taste” referring to the fact that she was warned that she would taste the awful smelling stem cells as they were pushed into her port and would probably feel nauseous. She came prepared with loads of Halloween candy and happily ate her way through as much candy as she could during the short stem cell push. So, we left the hospital feeling relieved that it was over and very hopeful that these stem cells were going to work their magic and improve her sorry platelet situation. The stem cells take about 10 days to engraft and possibly longer to improve the blood counts (especially platelets).

The rest of the week went as planned, with trips to the hospital for platelets and blood on Wednesday and platelets and a doctor visit on Friday. She did get a chest x-ray on Friday because she has started wheezing a bit at night and off and on during the day. Her lungs looked clear but we are keeping our eye on things.

Saturday, my older (I had to include that) sister Sue, her fiancé Rick, and her kids Dionna, Gabby, Marcus, and Cecily arrived around 4 o’clock. We were so looking forward to their visit and it lived up to the “hype”. We spent Saturday evening catching up with them – it has been way too long!! It really was wonderful to see them all again and especially nice for us to spend time with Sue and Rick, who are recently engaged. Sue and I have always been very close but our busy schedules have prevented us from getting together for a while; it was really special for me to spend time with her, her very nice (and cool) fiancé Rick, and her very cool (and nice) kids. The cousins were equally happy to see each other (except Joey who decided that Mommy and Daddy were the only ones he really cared to spend time with). Anyways, Alex was in a fantastic mood and feeling great all day Saturday. She went to bed happily with her three girl cousins in her room for a “slumber party”. Not even two hours later, she woke up complaining of intense pain in both feet, and even asked for pain medicine. Alex doesn’t like to take pain medication because she doesn’t like the “fuzzy feeling” it gives her, so if she is asking for it, you know its bad. Anyways, she made it through the night on codeine, but did not sleep well at all.


Sunday we spent the day resting and getting ready for the big lemonade stand at the Sixers Game. Alex was doing okay on pain medicine but was requiring the medicine at least every 4 hours. Nevertheless, she was excited to be going to the game and enjoying having all the cousins visiting. We left for the game around 3 o’clock, with a plan of setting up the lemonade stand in the main concourse area of the entrance to the Wachovia Center. Everything went as planned and we were ready to sell lemonade by about 4:15 when Alex started complaining of both mouth pain (due to a blood blister) and feet pain, just as our first customer, Billy King (Sixers’ General Manager), came to buy a cup of lemonade. (This poor man was also talking to Alex at her lemonade stand in June when she started screaming with pain from the awful headaches she was experiencing last spring. I hope he doesn’t take it personally!) We so appreciate his support of Alex and her cause and are truly grateful for his generosity. Anyways, she insisted on staying at the game, so I gave her another dose of her pain medicine, took her to sit down and eat, and by game time she was feeling much better. In the meantime, Jay, Sue, Rick, our friend Kay, Carly Hillman and family, and the other kids were busy selling lemonade to Sixers’ fans as they entered the building. World B. Free (former player and current Sixers Ambassador) stood nearby the lemonade stand directing people to support Alex and HipHop (the Sixers’ awesome mascot) made a special visit to see Alex. Alex was very happy to see her “old friend” World B. Free and thrilled to meet Hip Hop and receive a Hip Hop stuffed animal from him. The first timeout of the game, Alex was called to center court to be honored, once again, as a Hometown Hero. She was escorted proudly (and a little nervously) by her big brother Patrick, and World B. Free (who presented her with the plaque). When the announcer finished telling all of the fans about Alex, her battle with cancer, and her fundraising efforts, the crowd of nearly 20,000 gave her a standing ovation, as Mariah Carey’s song “There’s a hero…” played. It truly was very touching and I didn’t know whether to laugh or cry so, I took a picture! (I will be sure to post that one). The night was incredibly special -- we met a boy who had battled neuroblastoma when he was a child and is now a healthy, intelligent, athletic teenager; we also spoke with many people whose lives have been touched by cancer and wanted to show their support for Alex’s cause; we were touched by how many people waited in a very long line at halftime to make their donation to Alex’s lemonade stand; it truly was memorable and inspiring. I was very proud of Alex for doing her best to get through the game and even volunteering to be interviewed by a couple of TV reporters. Although Alex, Joey, and I left after halftime, Jay and all of our outstanding helpers stayed right through the final exiting of the fans. At the end of the night, we had raised around $4000 for Alex’s Lemonade Stand Fund!! Thanks to all of our helpers that night, we couldn’t have done it without you guys! Thank you Bree and everyone at the Sixers who had a part in this special night!!! You guys are incredible and we are grateful beyond words – GO SIXERS!!!!


Unfortunately, Alex’s pain worsened overnight on Sunday, even after switching to morphine. So, Monday morning we headed into clinic, with Aunt Sue, Uncle Rick, and cousins staying home with Joey, Patrick, and Eddie (yes, I let them skip school to have one last day of visiting with their cousins). Alex, of course, needed platelets, and Dr. Leahy adjusted her oral morphine dose so that she would be comfortable. Alex instantly felt much better and we arrived home by about 2 o’clock. Over the weekend, Alex had purchased a new cartridge for her GameCube and was very happy to “take it easy” by playing her new game with her brothers and cousins. Sue, Rick, and the cousins left Monday evening but we think they will be back again, hopefully soon. Thanks Sue, Rick, Dionna, Gabby, Marcus, and Cecily for an awesome weekend!! Next time, I hope Alex is feeling better and can enjoy your visit even more.

So, about this pain…. Jay and I, of course, immediately worry that the pain in her feet could be bone tumors, especially since she has active bone disease. Every time she has a new symptom we are fearful that her disease is progressing too rapidly for the chemo to control it. I went into clinic on Monday preparing myself emotionally for the fact that I might receive “bad news”. However, Dr. Maris reassured me that he does not believe that this pain indicates bone disease. He is attributing the bone pain to a growth stimulant called Neulasta that she receives once a month to “boost” her white blood count. Although, the Neulasta doesn’t usually cause her so much pain, he is thinking that its effect might be intensified due to the fact that she received stem cells just one day before the Neulasta injection. His theory was supported by the fact that her white count jumped up drastically over the weekend (indicating that the growth stimulant was “kicking in”), He thinks that the pain issue should resolve by around Friday and if it doesn’t, we will have to explore other causes. Once again, we will have to wait and see…

So, what is the plan for the next week? Tomorrow we have a “day off” – I doubt Alex will go to school since she is still getting morphine around the clock but we should have a quiet day at home. On Friday, Alex is scheduled for a CTScan of her chest, abdomen, and pelvis – the purpose is to assess her most active tumor area. By tomorrow night I am sure I will have my usual “pre scan jitters” which will give way to all out panic as they scan her on Friday (I may always look calm on the outside, but trust me, I’m not!) Alex is convinced that her tumors have shrunk quite a bit so she is as anxious as we are to hear the results. I sincerely hope she is right – it is hard enough for us to handle bad news, but it is heartbreaking to have to tell her that all of her hard work at the hospital has not been enough. We should have some results by Friday evening, and we will be sure to post them Friday night sometime. Also, we are still waiting to see how well her “new” stem cells work but will probably move forward with the next round of irino/vincristine in the meantime, assuming there are no big surprises on her scans on Friday. We should have a plan by the weekend, so I will let you know.

Next week is the Good Housekeeping Heroes for Health Award Ceremony in New York City. The December issue has hit the newsstands, so be sure to pick one up! Alex is featured along with five women who have done extraordinary things to make a difference in the lives of others. The article is nicely done with a photo of Alex behind her lemonade stand. We will be leaving for New York by train on Tuesday, probably after a morning visit to clinic for platelets. The nice people at Good Housekeeping sent Alex a gift certificate to the American Girl Store that recently opened in NYC so we plan on spending that while we are there. Also, Tuesday night, we will be meeting up with my parents and Aunt Margaret for dinner. Tuesday night we will be staying at the very luxurious Le Parker Meridian in Manhattan – we are getting soooo spoiled! Wednesday morning the event will begin with a breakfast for the award honorees followed by an awards luncheon at Carnegie Hall. Good Housekeeping was kind enough to invite my parents, my sister Margaret, as well as Dr. Maris and Meg Wise from The Philadelphia Foundation. We feel honored that all of Alex’s invited guests will be making the trip to New York to watch her get her award. The event should be fun and I am so proud that she is included in this group of extraordinary women.

We will be done with the awards luncheon around 2:30 on Wednesday and we will head right to the train station for our trip home. Right now the plan is to start her chemo on Thursday, possibly from home. Again, we will know more later this week.

Also, we have the very special cat Herbert arriving at his new home sometime in the next couple of weeks. Alex already loves him and is looking forward to having a new roommate. I think he will be a great addition to our family!

I will be posting pictures of the Sixers game as soon as I find my camera (hopefully tomorrow). So, check back again this week for pictures and an update on Alex’s scans on Friday.

Thanks for your support!! We are so appreciative!
Love, Liz

Monday, November 3, 2003 0:17 AM CST

Greetings from sunny Philly!

We have been enjoying absolutely perfect weather here with spring like temperatures combined with beautiful fall foliage; it is hard to believe that winter is just around the corner…

Alex started the week on Monday with a planned visit to clinic for platelets and chemo, which she breezed right through with a little help from her friends. We walked into the playroom at CHOP and we were greeted by our friends Carly Hillman and her mom Jocelyn, whose company Alex and I enjoy tremendously. It is so important for Alex (and me, too!) to see kids finish their treatments and get back to “normal” lives – after almost seven years of battling her cancer, I am certain Alex is starting to wonder if anyone actually ever stops getting chemo or if we are just stringing her along! Anyways, as always, it was great to see you, Carly and Jocelyn – you are true friends! Also on Monday, we had the pleasure of meeting another little girl, named Christi Thomas, and her dad Shayne. I have been following Christi’s website ( www.christithomas.com ) for quite a while now – she is a six year old cutie from Ohio who also has Neuroblastoma. Alex and I knew that she was coming to CHOP last week so we picked up a few “goodies” to welcome her to Philly. Alex was quite excited to give Christi the things she had picked out for her – it was very sweet. The very next day, Christi and her dad returned the favor and made Alex’s day by bringing a bag of “goodies” for her to enjoy. As for me, it was a thrill to see and talk with Christi and her dad and I look forward to seeing them (along with her mom) again this week.

The rest of the week went as scheduled, with the visit to the dentist for all three kids on Wednesday. Alex was happy to learn that she no longer needed her cavity filled, as she had ground the surfaces of her teeth so much that it was no longer there. Unfortunately, this means that she must see another dentist at CHOP for further consultation about her “disappearing teeth”.

On Wednesday, after talking with Alex, I decided to explore the possibility of ditching chemo on Friday. I spoke with one of the nurses who paged Dr. Maris with news of my plans to skip her Friday dose of chemo and her Friday visit with him. Of course, he not only agreed that Alex deserved a day off but made plans to see her on Thursday so she wouldn’t miss her appointment with him.

Thursday was the greatly dreaded bone marrow biopsy and aspirate (followed by chemo, of course). Alex did really well, and was far more composed beforehand than she usually is (although she was very nervous). We received good news – the aspirates showed that her bone marrow looks better (less neuroblastoma cells) than it did last time. We have not heard about the biopsies yet, but hopefully they should show a similar trend. The preliminary findings in the marrow are further confirmation that the irino/vincristine combination is effectively keeping her disease in control– very good news!

Finally, on Friday, Alex was able to attend school again. I was able to attend all of the Halloween festivities at the school as well, which was a real treat for me. I went to Eddie’s kindergarten parade and party in the morning and Alex’s and Patrick’s parade and parties in the afternoon. Friday night was loads of fun, several of the kids’ friends came to our house for trick-or-treating with their parents. We all went trick-or-treating and then kids and parents alike came back to our house and stayed awhile. It was a perfect day and night, unusually warm with lots of sunshine and I was so happy that Alex was feeling up for enjoying it!

Tomorrow Alex is scheduled for her stem cell rescue. She will receive over 50 million of her own stem cells (harvested back in Connecticut in 1999) through her port (it takes less than half an hour). In about 10 days or so, the cells should engraft and her blood counts should start to show signs of improvement. If this happens quickly, then we will have to make a decision about whether to enroll her in different clinical trial or keep her on the irino/vincristine. We will not need to make this decision until we see how well the stem cell rescue works. If we stick with the irino/vincristine, we are hoping to administer it at home which will drastically decrease the amount of time we spend at the hospital. We will know more over the next couple of weeks so stay tuned….

We don’t have much else planned this week, other than the stem cell rescue tomorrow and the usual platelet transfusions. Alex will probably not attend school until Thursday, at the earliest, due to an unpleasant odor that will follow her around for a few days after the stem cell rescue. I believe the smell is caused by a preservative added to the stem cells – overall, not a big deal, just annoying (and stinky!).

Next weekend looks busy with a visit from Aunt Sue and cousins, Dionna, Gabby, Marcus, and Cecily. We also will be participating in the Penn Wynne walk/run to benefit our local library on Saturday. On Sunday we have the very fun lemonade stand at the Sixers game. We will set up our stand on the main concourse within the Wachovia Center before and during the Sixers vs. Indiana game. As if they have not done enough for Alex, the Sixers will also be honoring her as a Hometown Hero again during the game. She has requested that big brother Patrick escort her onto the court for the award and he, of course, is more than happy to oblige her (and Eddie is hoping to be included as well). They are great brothers to her!

Thanks for keeping up with us and please, please, please feel free to sign the guestbook! Also, I have posted Halloween pictures and some others I took this weekend.

Love, Liz

P.S. Little Joey is crawling now and keeping us all very busy.

Sunday, October 26, 2003 10:15 PM CST

Dear Friends and Family,

We are cruising right through October here… I can’t believe we have Halloween already this week!

Let’s start with the boring medical stuff.. Alex did receive week 1 of the vincristine/irintoecan combination last week. Her bilirubin levels were normal on Monday, so she was able to receive the full dose of both chemotherapies. For those of you who don’t know, Alex has not been able to receive the full dose of her chemo for several months now due to elevated bilirubin levels. One of her tumors is pressing on her liver and bile duct. As that tumor grows we have been seeing her bilirubin levels increase drastically. The rise in bilirubin levels was preventing her from receiving the full dose of chemo because of concern for her liver’s ablilty to metabolize the chemo properly. Part of the reason Dr. Maris recommended radiation therapy in combination with the chemo last month was to break the cycle of increasing bilirubin and decreased doses of chemo. Of course, we are thrilled that this is exactly what happened and are encouraged that she was able to receive the full dose of chemo.

Her constant need for platelet transfusions (still requiring 3 transfusions a week) continues to be a big issue for her. Fortunately, the wonderful nurses at CHOP have been preordering her platelets and calling for them a couple of hours before we arrive so that they are ready when we get there (thanks Carolyn!!). This has made a tremendous difference in the amount of hours spent at the hospital and we are grateful for that. However, the fact remains that Alex is spending way too much time there (we have only had 4 days in the last 4 weeks that we have not had to go to the outpatient clinic). So, we have decided to go with Dr. Maris’ recommendation to give her a stem cell rescue (she will be given some of her own stem cells through her port). After the stem cells engraft (10+ days later), her platelet count should improve. The ultimate goals are that she will require far fewer platelet transfusions and that her counts will improve quickly enough to make her eligible for another clinical trial. We are fairly pleased with the results we have seen from the irino/vincristine, but her latest VMA/HVA values (tumor markers in urine) indicate that she still has very active neuroblastoma in her body. So, she is scheduled to have a bone marrow biopsy/aspiration on Thursday to see how much tumor remains in her marrow. If the results are satisfactory, she will receive the stem cell rescue next Monday, November 3rd. After that we wait for her counts to show signs of engraftment so that we can move forward with a new treatment. We will have the irino/vincristine as a “back up” plan, in case she is unable to enter a new study.

So… our week is looking extremely busy. Monday we are headed into clinic for platelets and chemo. It should be a cheerful day for Alex because one of her very favorite people, Carly Hillman, will be there for an appointment. Carly and Alex met at CHOP on weekly Friday visits when we first moved here and Carly was being treated for ALL. Although Carly is done with her treatment and only visits periodically for follow up appointments, she and Alex have remained friends. Tuesday, we have early morning appointments for the three big kids with the dentist, complete with a cavity filling for Alex . After the dentist we will head into CHOP for chemo. Wednesday she has chemo and of course, platelets again. Thursday is the dreaded bone marrow biopsy followed by chemo. Finally, on Friday we will head in early for platelets and chemo so that we can be home in time for the afternoon Penn Wynne Halloween parade and party at the school. Add in karate for the boys after school on Tuesday, Wednesday, and Thursday (not to mention a very busy 8 month old) and we have one very hectic week!!

The kids are really looking forward to Halloween. Alex ordered her “garden fairy” costume from American Girl over a month ago – it is a beautiful costume complete with a matching costume for her doll. The boys have yet to choose their costumes but we have a date after school tomorrow to go Halloween shopping. No doubt, Patrick and Eddie will chose something scary and gory. We will dress up little Joey in something cute and may even get some bunny ears or something for Shammy. As I mentioned, the school has a really cute Halloween parade and party on Halloween, where the kids get to show off their costumes. Alex is really looking forward to it, so let’s hope we make it there. Friday night will be the usual trick-or-treating in the neighborhood. It should be fun and I will be sure to post some pictures of everyone in their costumes.

Alex’s Lemonade Stand continues to inspire others to help her cause. We received a great CD from a jazz group from Plymouth State University. It is called A Child Is Born and includes very cool jazz versions of Mother Goose classics, like Baa Baa Black Sheep, Rock-A-Bye, and Mary Had A Swingin’ Band. They dedicated the CD to Alex and half of all profits will be donated to Alex’s Lemonade Stand. If anyone is interested, you can check it out or order it at www.rpjazz.com . Thank you Dr. Rik Pfenninger for putting together such a great dedication to Alex!
We are looking forward to our stand at the Sixers game on November 9th, it should be a big success and a good time. Also, the Good Housekeeping Heroes for Health awards will be in the December issue, which will hit the stands on November 15th. There will be a story about Alex and four other women that they are honoring (among them are Goldie Hawn and Jessica Lynch). Anyways, we will be traveling to New York City on the 18th for the awards ceremony, hosted by Matt Lauer, on the 19th in Carnegie Hall. It should be interesting and I will try my best to kiss Matt this time, (on the cheek of course!).


We continued to be amazed and inspired by your support. It is hard for me to express our gratitude in words but I hope you all realize how much we appreciate the concern and kindness you all show for Alex and our family.
THANK YOU!!

Love, Liz

Saturday, October 18, 2003 11:54 PM CDT

Hello to all!

Well, another week gone by – I can’t believe how quickly these weeks (and months, and years) come and go…

We started the week with a fabulous trip to our favorite day spa for some TLC last Sunday. (Right…In my dreams!) Okay, I will admit that it was actually CHOP emergency room for platelets and blood. Alex woke up at 5am last Sunday with one of her famous bloody noses. Alex gets quite a few bloody noses but when her platelets are very low they become quite severe. The blood literally pours out of her nose (and this time her eye also) and the pinching of the nostrils to stop the blood results in the blood pouring down her throat. If the bleeding doesn’t stop in the first 20 minutes, despite constant pressure and topical thrombine (to promote clotting) we know that she probably needs platelets. Anyways, this bloody nose ended with a trip to the hospital for platelets (her platelet count was only 3000). By the time she and Jay arrived at the hospital, she had thrown up most of the blood she had swallowed, which was quite a bit. Because of the blood loss, she also needed a blood transfusion, as her hemoglobin had dropped to 4.9 (should be around 10) and her blood pressure was down to 70/20 (should be around 90/60). So, she got her platelets and was admitted for a blood transfusion and to watch her blood pressure. Of course, you might think that she was in tough shape through all of this, but she was fine and perfectly comfortable. She was discharged at 5 pm on Sunday, her nurse said “Alex, only you could come in here with platelets of 3000, hemoglobin less than 6, and a critical blood pressure and walk out of here the same day…” She certainly does “bounce back”!

After that, the week could only get better, and it did. In light of her platelet issues, Dr. Maris decided to give her the week off of chemo. Unfortunately, we still had to go to clinic for platelets on Monday, Wednesday, and Friday, but she was able to go to school 2 full days this week. She is feeling well and was fairly active this week – going to Brownies, riding her bike a little, and keeping up with her schoolwork, etc. So far, her bilirubin has not jumped up, which is an encouraging sign that we may have overcome the problem of her tumors growing between chemo cycles. If her bilirubin stays normal until Monday, she will receive the full dose of irino/vincristine for 2 weeks starting on Monday. After that, Dr. Maris wants us to consider giving her the last batch of stem cells that were harvested years ago in Connecticut. She has received her stem cells (called a stem cell rescue) twice before, once during transplant and once several months after transplant. He wants to do a bone marrow biopsy on October 30th and if it looks decent (not too much neuroblastoma) give her the stem cells with the hope of improving her platelet count drastically. This would result in less time at the hospital and the possibility of her qualifying for other clinical trials. Currently, her platelet count is preventing her from qualifying for any of the trials he would enroll her in. The stem cell rescue itself is similar to a platelet transfusion and is done outpatient in the clinic. So, that is the plan right now, but as always, it is subject to change daily.

The boys are all doing fine. Patrick is having a great year in 4th grade and keeping very busy – he has always been a good student but this year has also been getting involved in many more extracurricular activities. He is still taking karate lessons, plays soccer, is starting French Horn lessons at school this week, and was elected to the student council. Also, he is turning 9 on Monday – Happy Birthday, Patrick!!!!!!!!!!!!!!!!! Eddie seems to be enjoying school and has made so many new friends. When we walk through the school with Eddie he is constantly greeted by people, both kids and staff. We went to the annual book fair and ice cream social last week and at the end of the night Patrick said “How does Eddie know so many people here already!?” I said “That’s Eddie!” Joey is doing great and is on the verge of crawling. He gets on his hands and knees and tries so hard but he just can’t quite get the movement coordinated yet. He is a very happy baby and makes us all smile.

By the way, The John Walsh Show is now scheduled (tentatively) for Tuesday, the 21st. Again, subject to change, as we all know now.

Not much else happening here, we are still planning on selling lemonade at the Sixers game against Indiana on November 9th. That should be lots of fun.. The GM Billy King and his staff are so wonderful to Alex and all of us – WE LOVE THE SIXERS!!!!!
Also, we are headed back to New York City on November 18th for the Good Housekeeping awards luncheon. It sounds like a good time, I will tell you all about it next time.

So, it will be chemo this week and next, and a bone marrow biopsy (Alex’s least favorite procedure) on the 30th. Fortunately, we have some fun, like Patrick’s birthday and Halloween to distract us.

I will be posting new pictures with this entry, so be sure to check those out!.
Thanks for checking in on us – we appreciate all of your support!

Love, Liz

Thursday, October 9, 2003 11:15 PM CDT

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Hello everyone,

We are all doing very well here… we have been insanely busy but we are happy!

Alex finished her chemo as scheduled and is doing really well. She has had her usual belly pain and diarrhea intermittently for a few days but it hasn’t kept her down too much this month. Her liver counts have been normal for over a week and have not started to increase yet. At her appointment last Friday, Dr. Maris did his usual poking of her belly area (feeling for tumors) and was thrilled to report that it felt “better than it has in months”. Her mood has been great, which is always the best indicator of what is happening with her body. We remain hopeful that the radiation and chemo combo has worked well for her. Her blood counts probably have not hit bottom yet so we are not in the clear yet for this month as far as fevers go. This weekend will be her usual time to spike a fever but we will hope for the best.

Her main issue in terms of daily side effects remains her platelet counts. She is still requiring platelets at least twice a week (which has been the case for about 3 years). The real problem we are facing now is that her reactions to the platelet transfusions seem to be getting worse. She has had hives and some slight coughing in the past with some platelet transfusions. Because of this, her platelets are always “washed” before she receives them, to lessen the chance of her reacting. Also, she always receives medications before her platelets to lessen or prevent reactions but, despite this, in the past month she has had two severe reactions. Each has required a shot of epinephrine to relieve the throat tightening associated with an anaphylactic reaction. She, fortunately, is very good at knowing when she is starting to have a problem and lets us know very early on, before she ever gets to the point where she can’t breathe. She also breaks out in severe hives, usually before the throat tightening and breathing problems. Anyways, Dr. Maris is working with the blood bank to determine if she is reacting to a certain donor or donors so that they can be sure to not let her get platelets donated by those people. Every community has a limited pool of platelet donors – it requires more time than donating blood and requires special equipment not available at a regular blood drive. Fortunately, there are people out there who make a point of donating platelets regularly and we are so grateful to them. I would like to encourage anyone who thinks they may be able to donate platelets to contact their local Red Cross chapter and do it! I have donated a few times myself and it does take a couple of hours but it is soooooo important to kids like Alex.

She has only made it to school one day in the past few weeks but has been trying to keep up with the work and homework. She will go to school tomorrow and possibly a couple of days next week, depending on what decision is made about the next step in her treatment…

Dr. Maris would like her to start chemo again next week after only one week off. If her counts recover over the weekend, he recommends that she start her next round of irino/vincristine on Monday. If we can keep her tumors from bulking up again he has plans to enroll her in another study. We do not know any details because as we started to discuss which study he had in mind, she started to complain about her throat “feeling funny” again (from the platelets) and we never finished our conversation. We will either see or talk to him on Monday, and we will hopefully talk more about the new study.

Now, to the fun stuff….

We had a pretty quiet weekend – Saturday was basically occupied by the boys’ soccer games, which we always enjoy watching. Sunday was a quiet day at home for Alex, Joey, and me while Patrick and Eddie went to a birthday party and Jay worked. It was nice to have a quiet weekend to hang out and not rush around too much. We need more of those!

On Tuesday we were off to New York City again for a taping of The John Walsh Show. They have been inviting Alex to be a guest for over a year and we finally agreed that the timing was right. We went to New York on Tuesday on the train and stayed overnight in Manhattan. Wednesday morning we went for a walk through Central Park and enjoyed the perfect weather. Wednesday afternoon we went to NBC Studios to tape the show. Alex really enjoyed it and did very well, especially considering how long the afternoon was. She was her usual shy self at first but relaxed after the taping started. She even went up on stage with the other kids who were being featured and answered a question from an audience member. The best part of the segment was when they surprised her with a beautiful Himalayan Persian kitten!! She has always wanted a kitten and was absolutely thrilled when they brought out this tiny 6 week old white fluffy kitten with blue eyes. The woman who owns the kitten is a veterinarian and breeder of Persian kittens. She was contacted by the show and happened to have the perfect kitten for Alex. She generously offered to donate the kitten and even called IAMS to get a year supply of cat food donated. The kitten will stay with his mom for 6 more weeks, which gives us plenty of time to “kitty proof” our house and buy all the toys Alex can find for her new best friend. Anyways, the boys are excited but Alex is just beside herself with anticipation. So, anyways it was a fun show for her and well worth the trip. The show will air next Wednesday, October 15th. You will have to look for it in your local listings.. it is called The John Walsh Show (same guy as America’s Most Wanted) and is a nationally syndicated daytime tv show.

We do not have any plans for this weekend (other than soccer) and hopefully some serious house cleaning and maybe relaxation.

I will let you all know early next week what the treatment schedule is…
As always, we appreciate all of your support.

Love, Liz

P.S. Check out www.alexslemonade.com – it has new pages about each of the kids (Joey’s to come soon)


P.P.S. Alex has named her kitty Herbert, with Herbie as a nickname.

Monday, September 29, 2003 4:50 PM CDT

Hello,

For those of you who wanted a copy of Liz's speech in DC there is a link at the bottom of the page. We put it on Alex's Lemonade site.

Jay

First off, Alex has been doing well, other than fatigue (due to radiation) and an occasional upset stomach (chemo and radiation). Her mood has been great and amazingly upbeat considering she has been spending every day at the hospital for the past 2 1/2 weeks.

She has received 12 of her 14 radiation treatments and will have her last on Wednesday (yeah!) She has handled these treatments extremely well with only fatigue and minor belly pain as obvious side effects.
She is 6 days into this 10 day course of chemotherapy. Her bilirubin returned to normal levels early last week, after 1 week of radiation and 1 day of chemo. So, today she was able to receive the full dose of Irinotecan and her first dose of Vincristine. She will get the full dose of Irinotecan each day this week, finishing on Friday. She will probably get her 2nd dose of Vincristine next Monday. That will conclude a solid 3 weeks of going in for treatments everyday and give her a much deserved break next week.

Unfortunately, because of this schedule Alex has been missing a lot of school. She has been getting the work from her teacher and completing it at home but she really wants to get back to school soon. School pictures are tomorrow and she will go for the morning to get her picture taken with her class. She hopes to go for a few hours later this week. Next week she will only need to go to the hospital for platelets and blood (hopefully only 2 days) so should be able to attend school again for a few days.

We had another fun, busy weekend...

Saturday we went to a dog walk fundraiser (4 Paws for a Cure) for pediatric cancer research sponsored by the National Childhood Cancer Foundation. It was held at historic Valley Forge Park. We had a good time and saw our friends the Hillmans. Carly Hillman, a friend from the hospital was there, looking healthy and beautiful. She designed the 4 Paws logo for the NCCF and was also a "top dog" winner, with her dog Sophie raising over $1000 ! Way to go, Carly!

On Sunday there was a 5K race to raise money for pediatric cancer research. Although it is now called the Parkway Run to benefit CHOP oncology research, it was formerly called The Terry Fox Run. Terry Fox was a 19 year old oncology patient from Canada who set out to run across Canada to raise money for cancer research. He ran 26-30 miles a day for 143 days (no, that is not a typo), with one leg and one prosthetic leg (he lost his leg to cancer). He made it over half way, but then his cancer spread to his lungs forcing him to stop. He died shortly after, but his efforts did not go unnoticed -- He raised more than $25 million dollars for pediatric cancer research. It is an absolutely unbelievable and inspiring story, and one that has been a tremendous inspiration to us. He is a true example of determination and courage, combined with compassion and a willingness to help others.
The run in Philly was sponsored by the Four Seasons Hotel and CHOP. They invited us to set up Alex's Lemonade Stand at the race and generously offered to put us up in one of their suites the night before. We had a great time, the hotel was, of course, a big hit with everyone (thank you, Four Seasons, Philadelphia!) and we were able to roll out of bed on Sunday morning and head down to set up the stand by 7 am. Unfortunately the weather did not cooperate, and it poured rain (this sounds familiar). We, never the less, had a great time and raised some extra money for a good cause. The race in total raised over $100,000 for oncology research at CHOP.

We had our good friend Kay Sweet (Alex's former at-home teacher) watch the kids last night and we were able to go out to a wonderful dinner party downtown to celebrate our friend Ligia's birthday (21 again?!). Happy Birthday, Ligia and Thanks to Kay for taking on 4 kids at bedtime.

Thanks for all of your support! Don't forget to sign that guestbook!
Love, Liz and Jay

P.S. Good Housekeeping and GE will be honoring Alex as a "hero for health for 2003" in their December issue. It will hit the stands on November 15th.

Monday, September 22, 2003 11:19 PM CDT

Hello to all!

I am sorry about not updating sooner but we have been so busy between radiation, platelet transfusions, my trip to D.C. and then two days without electricity (and internet access, we have a wireless modem). Anyways thanks for sticking with us and checking in for an update!

Alex has completed 5 of her 10 radiation treatments. She is handling the treatments beautifully. As a matter of fact, she leaves me at the door and walks into the treatment room with the radiation techs. I can watch her on a video monitor and I can see her chatting with them as they position the machine over her. They leave her in the room and shut the door before they begin the treatment, which only lasts about 2 -3 minutes. She holds so still and as I watch her on the monitor, I am so glad that she cooperates so nicely but it also makes me sad --because I know that she is so willing to do this because she wants so much for these tumors to go away. She has been having some belly pain and loss of appetite in the evenings which I am assuming is from the radiation. She also is extremely tired and having difficulty recovering her counts – also most likely due to the radiation. The real question, whether the radiation is working against her tumors, is the big unknown right now. Much to our disappointment, her bilirubin jumped up again at the end of last week. We were hoping that the radiation would work quickly and her usual cycle of high bilirubin between chemo treatments would be broken but obviously this didn’t happen. SO… she started chemo again today at the 75ose of Irinotecan and did not receive the Vincristine. Dr. Maris is, as usual when it comes to Alex, “cautiously optimistic” that the radiation and chemo together will have a greater chance of shrinking her tumors. He expects to see some improvements in her bilirubin as the week goes on. He is hoping to give her the full dose next week with the single dose of vincristine (same as last month). We will, as always, hope for the best and look forward to her feeling better and looking better by next week.

Her mood has been pretty good. She has not been able to make it to school since she started radiation but she is still hoping to get there for a few hours this week. I really want to make this happen because it is important to her that she is as “normal” as possible – it is very hard to feel that way when you are at the hospital everyday!

I did make it to Gold Ribbon Days in D.C. last week. My parents came to stay for the week, which was a great help, of course. On Tuesday, my Mom, Joey, and I took a train from Philly to D.C. while Jay took Alex to her first radiation treatment. We arrived in D.C. Tuesday about 7:30 pm and promptly met up with my college roommate Karen and her fiancé Eric, right at Union Station for dinner and drinks. It was great to see her and meet her future husband; I just wish it could have been for longer than a couple of hours! We arrived at our hotel and went right to bed since we had to be up early for registration and breakfast.

Wednesday went very well, except my speech was moved from the morning to the afternoon because of Laura Bush speaking during my scheduled time (imagine bumping me for the First Lady). The big news of the day was that the American Ad Council is going to be sponsoring public service announcements promoting childhood cancer awareness and hopefully encouraging donations to the cause. They are the organization that is responsible for a number of very memorable commercials, including Friends Don’t Let Friends Drive Drunk, Smokey the Bear, and many others. I think they will do a really powerful and effective campaign for childhood cancer awareness. Finally, at about 4:00 I was able to tell Alex’s story. I think it went very well, I was a little more emotional than I would have liked to be, but I was speaking honestly and I was honored to be telling her story. Anyways, my Mom said it was the best speech of the day, (she doesn’t think much of Republicans) and of course, she is totally objective! I also had the pleasure of meeting Robin Stock and Congresswoman Deborah Pryce of Hope Street Kids www.hopestreetkids.org , who had invited me to speak there. They are very dedicated to childhood cancer and specifically, research funding. I hope to see them again sometime!

We had an interesting weekend after losing power on Thursday due to the hurricane. The kids did not have school on Friday and they spent the day over at our friends The Richters. On Friday night the big kids and Jay slept in the living room in front of the fireplace, as it was way too dark in the house for 2 of the 3 kids (I won’t say which ones). It was really nice to have quiet family time, we read from The BFG by Raoul Dahl which our friend Vicky sent us (thanks Vicky!) and slept really well in the total darkness and silence (except Jay who somehow was left with only the two ottomans to curl up on). On Saturday, instead of morning cartoons and cleaning we went to the park and enjoyed the perfect weather. In the afternoon, the boys had their first soccer games which we all enjoyed. By Saturday evening the novelty of having no electricity had worn off and we decided to have an impromptu block party. Jay went door to door and invited everyone over for hot food (grilled, of course) and cold drinks. He ran out to the store, quickly set things up and everyone brought something. I was impressed by how quickly it came together; I think Jay should be the official party planner of our house. The kids ran around all night with flashlights and the grownups had plenty of cold beer and margaritas. Patrick’s friend Stefan brought his telescope and we all had a chance to see Mars. The lights came on about 11 pm but the party continued past midnight ( Henley Road was pretty quiet on Sunday morning). Sunday was spent cleaning out the refrigerator, doing laundry, and grocery shopping (don’t you love electricity!).

This weekend is the NCCF dog walk for the cure. If Alex is feeling well enough, on Saturday our Shammy (and family) will be walking to raise money for the National Childhood Cancer Foundation. If anyone would like to sponsor her, please let me know. On Sunday, we are going to the Beltway Walk/Run for CHOP Oncology Research. Our family will be selling lemonade there and some of us will be walking or running or whatever we feel like doing that day. Overall, a very busy weekend but well worth it!

Alex’s Lemonade Stand fund is still going strong. We have about 30 people signed up to hold lemonade stands on the same day as hers next year and our goal is 100 stands on that same day all across the country. It should be pretty amazing and meaningful; especially since many of the children who are doing the stands also have neuroblastoma. We are thrilled that other kids and families are getting involved.

I hope you all meant it when you said you liked the longer journal entry, because here I went and did it again. Thanks for your support and great guestbook entries!

I will update again next week (probably Monday or Tuesday)
Love, Liz

Wednesday, September 10, 2003 9:58 PM CDT

Hey there!

Well, we are all doing very well here. Alex finished her chemo without any problems. She was able to get the planned 75ose the first week and the 100ose the second week as well as 1 dose of vincristine. She tolerates the Irinotecan very well with some bowel issues (nothing that a little Imodium doesn't take care of). The Vincristine gives her some mouth, tongue, and miscellaneous leg pains for a few days. Although this month she did not ask for pain medicine as often as last so I think it was improved. She tends to have her worst side effects the first couple of cycles of any new chemo so I expect that next month these problems will be milder. Her bilirubin is down to normal levels (Yes!!!) which is a good indicator that the chemo is working. Her blood pressure seems to be somewhat improved as well, another good sign.

The best indicator of how the chemo is working has been her fantastic mood over the last week. She is feeling great and we are enjoying her bubbly and spunky attitude. She is enjoying a few days away from the hospital and has managed to attend school for three days since it started last Thursday. She loves second grade and I have had several teachers tell me that they saw her in school with a giant smile on her face. Her classroom is quite a walk from the main door and the cafeteria and requires her to walk up a long ramp which is difficult for her. Of course, the mere suggestion of a wheelchair or a motorized scooter results in an immediate and emphatic “no!”. Her teacher said she was so exhausted walking in from the main entrance the other day that she was pulling herself up the ramp using her arms. When she asked her if she was o.k., she said, “yeah, I’m fine”. Her teacher said “She is so determined!”. Although she still has issues with walking distances, it was amazing to watch her walk down the hall with her classmates on the first day of second grade. It is such an accomplishment for her – she has had six surgeries, years of chemo, and countless experimental treatments; the fact that she can even walk with her classmates after being told she would never walk is an accomplishment itself. At any rate, it was such a wonderful moment for her and us!!

The boys also made us proud on the first day. Eddie handled kindergarten like a pro and I was sure to let him know that he was the first of the family to go to kindergarten on the first day without crying. He thought that was pretty cool and I think he is proud of himself. He seems to be enjoying himself – he leaves and comes home all smiles and has already made a new friend. However, I am getting the idea that he would still rather be home. He told us on Friday that he thought he might take vacation this week. Tonight he told me that he might pretend to be sick so he could stay home from school (he’s got a lot to learn about faking me out). Patrick recovered from his usual “first day nerves” and is settled right into 4th grade. His teacher seems really nice and has a great sense of humor that Patrick appreciates.

I will post pictures of the gang on their first day, so be sure to take a look at the photo page.

Alex had her planning session for her radiation treatments at the Hospital of UPenn. She is scheduled to start on Tuesday and will get 10 treatments over 2 weeks (everyday except for weekends). They are radiating the two largest tumors, one near her liver and the other near her kidney. Somewhere in that time her next round of chemo will start, hopefully at the 100ose. So, as usual, Dr. Maris’ plan is working out well for Alex and we are hopeful that she will continue to improve.

Alex’s Lemonade Stand has had many exciting developments. The donations continue to come in daily, and she is quickly approaching $150,000 for total raised so far. The grant we requested to CHOP for their experimental therapeutics program has already been made and will make an immediate impact on bringing new treatments to patients. Also, the Philadelphia 76ers, who have been so good to Alex and our family, have invited Alex to hold a lemonade stand at a game of our choice this year. This should be very successful (and fun). They are so supportive of Alex and we appreciate their generosity! Go Sixers!! Also, we are looking to have at least 100 lemonade stands across the country next year when Alex holds her stand here. So far, we have over 25 families committed to holding stands. Many of the kids involved are other neuroblastoma patients, which will make the stands even more meaningful.

My parents are coming tomorrow for a visit and to lend a hand or two. I will be going to Gold Ribbon Days in Washington D.C. next week. September is Childhood Cancer Awareness Month and Gold Ribbon Days serve to bring awareness and educate lawmakers about the need for funding for childhood cancer. They also are a great way for families of kids with cancer to get together and advocate as one voice. For more information on the event you can go to www.childhoodcancerawareness.org . I am giving a speech at the opening ceremony about Alex and her battle over the past 7 years. The whole family was going to go but we had to change plans due to her radiation schedule. My mom and Joey are coming with me and Jay and my dad will stay here with the kids. Jay will take a day off of work and take Alex for her treatment on the day I am not here and Grampy will be around for Patrick and Eddie.

For those of you who actually read this whole long entry, thanks for being patient!
I will update next week.
Love, Liz

Monday, September 1, 2003 9:02 AM CDT

Hello to everyone,

First of all, I will try to explain what is happening with Alex and what our plan is over the next month. Alex did receive her chemo (Irinotecan) this week but at the 75ose due to a very elevated bilirubin level. She also can’t receive the Vincristine until her bilirubin level is normal. Here is the problem – her bilirubin is high because of the tumor pushing on her liver but in order to receive the maximum dose to reduce the tumor, her bilirubin must be at a normal level. The first two cycles of the reduced dose Irinotecan/Vincristine have obviously been working to some extent; we know this because her bilirubin level has come down to normal levels during and after these cycles. However, after both cycles her bilirubin level increased very quickly again during the two weeks off of chemo. What does this mean? Well, it means that the tumor is growing in the two weeks she is off of the chemo. This growth of the tumor between cycles has prevented her from receiving the full dose she needs to keep her bilirubin normal so that she can get the full dose of chemo. For Alex it has meant that she feels good while the chemo is working, but by the end of the 2 weeks she is looking and feeling badly again. It is so frustrating to watch because she goes from being happy and upbeat to being extremely tired and sad almost overnight.

We had a serious discussion with Dr. Maris this week about her treatment options and he feels that she does not have many other options right now. We will stick with the Irinotecan/Vincristine combo since it is working, even at a reduced dose. She will also receive radiation to her belly area, where her most active tumors are right now. She is scheduled for radiation for two weeks starting on September 15th. Hopefully, the chemo/radiation combo will reduce the tumors substantially this month (and her bilirubin level will stay down) and she will be able to receive the full dose of chemo on schedule in a few weeks. This should break the cycle of reduced doses and hopefully, keep her feeling well and happy for a while. If we can reduce her tumors to a minimum, she may be eligible for other clinical trials (new treatments). She is perfectly happy about receiving radiation, since the alternative plan was surgery. She is wonderful when it comes to lying still under large machines so the radiation doesn’t scare her.
So, I hope I haven’t utterly confused you all!

Anyways, she started the week in rough shape -- feeling lousy, needing platelets and blood, very yellow due to high bilirubin, and overall unhappy. By day 4 of chemo she was “bouncing back” already and looking and feeling much better. We have learned to appreciate her good days so much and enjoy her chattiness and happiness. We ended up having a good week, with the kids getting ready and talking a lot about school starting this week. Alex will go to school as much as possible. She has made it very clear that she will not have Kay (her great home tutor and great friend to the family) come to the house for school this year. She is going to school as much as she can and she plans on keeping up on the work herself. In her words “If it is as easy as 1st grade it should be, like, no problem!”

Eddie had a big week; he turned 5 and is heading to kindergarten! Happy Birthday Eddie! We went to Dave & Buster’s for video game family fun and then had his favorite meal (spaghetti and meatballs) followed by birthday cake.

Yesterday we had our good friends The Richters over for dinner. They are a wonderful family who has been so supportive of our family (and they are a lot of fun to hang out with too!). I don’t know what I would do without their support and friendship. Thanks Ligia and Andy!

On a very sad note, I am so sorry to report that another little girl with neuroblastoma died on Saturday, just 2 days before her 4th birthday. Her name was Madison and we met her very briefly when her family came for treatment here at CHOP. She fought so hard against her cancer and I am truly sad for her family. For more information on Madison and her family you can go to:

http://www.madisonelizabeth.homestead.com/MadisPage.html


Alex’s Lemonade Stand continues to bring in more money to fund research for a cure that is obviously, so desperately needed!
Also, watch the CBS Evening News tonight at 6:30. They are doing a piece on Alex and her lemonade stand ( the same piece that was on the Early Show but shorter).
Hopefully, this will bring many more donations to her fund to get that research funded!

Thanks for checking in! Don’t forget to sign that guestbook.
Love, Liz

Monday, August 25, 2003 9:10 PM CDT

This is a long update….

Alex was very tired this weekend so we are glad that she started chemo again today (Irinotecan x 10 days and hopefully Vincristine 2 days). Her bilirubin is obviously elevated as she is very jaundice. We have been giving her milk thistle to try and bring her level down. She can not get the full dose of chemo until it comes down. Her doctor has written for a 75ose, which is up from 50t the start of the last round.

We like to look at the bright side of things, Alex made it almost 10 days before her bilirubin spiked after chemo. Last round was only 5 days.

We think her bone marrow involvement could have increased and that is why she is tired. It could also be the 2 weeks on and 2 weeks off of chemo. We are not convinced this chemo is going to get the job done. We really want to get a full strength dose though to give it a real try.

The weather was perfect this weekend. It was about the first weekend all summer where it was sunny and Alex was not in the hospital and I did not have to work.

On Saturday letters went out notifying students who their teacher is. Alex spent Sunday talking to her friends on the phone.

On Saturday we had a busy day. We went to a lemonade stand organized by Blair Miller in Avalon, New Jersey. For those of you who are not from the Philly area, Avalon is a very nice beach town.

A little background...Blair has a beverage stand on weekends outside an entrance to the 40th street beach. After reading of Alex, she decided she would donate one day of her sales to Alex's Lemonade Stand Fund. She did not stop there, on the days before the stand, Blair went to local businesses and explained what she was doing. Before she opened for business Saturday she had already received $3000 in pledges from businesses. She also got a matching pledge from the local Coldwell Banker office. They said they would match the day of the stand sales. Blair raised $6000 at the 'lemonade stand'! It was amazing.

Blair and her mother and aunts made T-shirts that said 'Lemon-aid 4 Alex', and they gave Alex a lemonade yellow hat. Blair & family were very gracious. We went back to their house and had lunch and the boys went swimming in the pool. Enough can not be said about this wonderful girl and her family. It was simply amazing.

We left New Jersey and went straight to Delaware to a party at my boss’ house. We were unbelievably late because of traffic (90 miles took over 4 hours). It was great to see the people from the home office. They have been so nice to us over the years and the family does not get a chance to seem them often enough. Again the boys went swimming in a great pool.

There were 3 other lemonade stands held this weekend that we know of. Two of the stands were on the Jersey Shore and one in Doylestown, PA. The one in Doylestown was held by Hannah and Andrew Zach. They are grandchildren to Harriet from the home office. Thank you very much.

We feel that Alex’s Lemonade Stand Fund is still moving strong. We already have close to 10 people/families who want to hold large lemonade stands next June to coincide with Alex’s. We think there is real potential to raise quite a bit of money.

School starts next week:
Patrick is going into 4th grade. He has grown a lot and is very mature for an 8 year old. He has been a great help to Liz this summer. Helping with the baby and Alex and entertaining Eddie.

Alex is going into 2nd grade. We hope/ she wants to make a lot of school days this year. It will be tough with how tired she is and with her chemo schedule.

Eddie is starting Kindergarten. What can I say about Eddie? He is very excited about going to the same school as Patrick & Alex. He will have Kindergarten in the morning and then go to an afternoon program down the street.

Joey, the baby, is doing well. He is almost 6 months old and happy most of the time.

We hope everyone has a good last weekend of the summer.

Take care,

Jay

Tuesday, August 19, 2003 9:15 PM CDT

Hello to all,

Alex is doing well and came home today on oral antibiotics. We will be keeping an eye on her left knee to make sure the oral antibiotic is working properly. Overall, her counts are doing fine, with the exception of the usual platelet issues. Alex is scheduled for another 2 week cycle of chemo starting next Monday -- the time in between rounds of chemo goes by way too quickly!

We are feeling the end of summer coming and starting to get ready for school. The boys are doing great and are all growing up so fast. I am going to post some new pictures in the next few days.


We are looking forward to a visit from Aunt Margaret this week for a couple of days. We also have a pool party to go to this weekend which will give the kids a chance to practice their swimming. They love to swim and will surely have a great time.

Also, I would like to repeat some exciting news that Jay reported in the last journal entry. We have requested a grant from Alex's Lemonade Stand to Children's Hospital of Philadelphia for their Experimental Therapeutics Program in Oncology. This program is developing and testing new agents to treat children with cancer. Bringing a new agent to the clinical trial phase, where it can potentially benefit children, has historically been a lengthy process, partly due to the lack of funding for research support personnel. This grant money from Alex’s Fund will be used specifically for research support personnel, thereby allowing for more clinical trials. We are very happy that the money from her lemonade stand will be making an immediate impact for patients like Alex. Thank you all for making it possible!

We will update again soon.
Thanks for checking in!
Liz

Saturday, August 16, 2003 1:43 PM CDT

A quick addition to the information below. ALex does have an infection in her left knee. It is probably a skin infection we are waiting for the sensitivity tests to come back to see which antibiotics will work best. In the mean time she is feeling pretty good. SHe will either leave the hospital Tuesday/Wednesday or will have to stay for atleast 10 days depending on the antibiotic needed.

Alex had a pretty good week, she needed platelets twice(pretty typical) and a red blood transfusion once. Last weekend she was a sick from her chemo(Irinotecan/Vincristine) but she got over it.

Her Friday checkup showed her Bilirubin back to normal a good sign for her liver. Unfortunately, her ANC (blood count which shows ability to fight infection) Count crashed at the end of the week.

Friday night Alex woke up to a fever. So she is headed to the ER for an admission and some antibiotics. She will be able to leave when her ANC begins to rise, hopefully this will be in a couple of days.

Another sad note Alex's friend from the day hospital, Naadira passed away this week. It was very sudden and our thoughts go out to her family.

We must say thanks to everyone who has e-mailed us with interest in getting involved with Alex's Lemonade Stand next year. We are going to work on a plan soon. We will invite Philly locals, everyone else we will send details of the meeting by e-mail.

We had a talk with some of the Docs/researchers here in Philly about what is needed most for them to get new treatments to kids like Alex. They told us that one of the areas that is slowing them down is getting the new drugs to the clinical trial phases. There is a tremendous amount of work/paperwork/organization needed to track the patients and comply with FDA regulations. Alex's Lemonade Stand will be making a donation of $50,000 to hire someone for this job. We hope that this will enable more experimental drugs to help patients much quicker.

Alex's Lemonade Stand is still getting donations in the mail. It has raised almost $120,000 since it started.

Patrick, Eddie and Joey are doing great. We will update pictures soon.

Thanks for checking the page and don't forget to sign the guestbook.

Jay

Tuesday, August 5, 2003 9:10 AM CDT

Well it is great to have Patrick & Eddie back home and have the whole family together. Although they would have liked to stay with Grandma & Granndpa & cousins for another week.

Alex had a very good weekend. She felt good, ate good and a hematuria (blood in urine) problem she had for several weeks just cleared up suddenly.

Her counts were pretty good on Monday, she didn't even need platelets after the weekend (she will get them today), which is arecord for her lately.

The other good news is that Alex is able to get her full dose of Irinotecan & Vincristine for the first time this week. This is because her Bilirubin is within the normal range (this has been out of whack because of liver involvement).

We met the kids Aunt Brigid in Riverside, CT on Sunday to pickup Patrick & Eddie. The night before we stayed in a hotel with the Shammy (the dog). They had a swimming pool so mom, dad, ALex & Joey went swimming. ALex and JOey really enjoyed the swim. Joey was kicking and trying to swim.

We had Alex's bike fitted with straps to hold her feet in the pedals. SHe is very good about practicing and her endurance is constantly increasing. This is a real advance for alex who has never really been able to pedal a bike because of her extreme leg weakness. She is now able to go about 150-200 feet at one time. She is a hard worker and determined to strengthen her legs.


We are planning to expand Alex's Lemonade Stand next year to more locations. The Philadelphia Foundation is going to help us. We are looking for volunteers and going to be talking to some possible sponsors. If anyone is interested in helping us to organize this let us know. We are going to meet shortly to set up a plan.

Check out these links:

These girls vacationing in Florida at their grandparents saw Alex on The Today Show and decided to have a lemonade stand to help Alex's Research Fund. Well they got shut down by the homeowners association. They stuck with it, a Tampa radio station helped them out and they had a very succuessful lemonade sale a couple of days later at a car dealership. They raised over $800.
Thank you Kara & Breanne!

http://www.sptimes.com/2003/07/23/Pasco/Girls__sweet_deed_com.shtml


http://www.sptimes.com/2003/07/25/Pasco/Girls_return_to_lemon.shtml

Take Care

Friday, August 1, 2003 12:22 AM CDT

Hello everyone,

At the beginning of the week Alex was not feeling very well also her liver counts were elevated so she is only getting a 1/2 dose of chemo this week. We will re-evaluate on Monday for next week's chemo.

Thursday evening and Friday Alex has been feeling pretty good. Her jaundice is looking much better and her liver counts are coming back to normal.

We hope for a good weekend. Patrick & Eddie are coming home...we miss them.

We had a great visit this week from Connecticut friends. Diane Hunter and Maya and the baby Matteo (We are sorry that Steve and Max didn't make it) came for a visit. We had a good time and took the train downtown to the Hard Rock Cafe one night for dinner.

It was great to see them. Matteo just had his first birthday party. In lieu of birthday gifts the Hunter's collected donations for Alex's Lemonade Stand Fund. They delivered a nice check to Alex for her Lemonade Stand Fund on their visit.

Thanks for checking in. We will update again this week,
love, The Scotts

Friday, August 1, 2003 12:11 AM CDT

Hello everyone,


Just a quick update added on to the one below.

At the beginning of the week Alex was not feeling very well also her liver counts were elevated so she is only getting a 1/2 dose of chemo this week. We will re-evaluate on Monday for next week's chemo.

Thursday evening and Friday Alex has been feeling pretty good. Her jaundice is looking much better and her liver counts are coming back to normal.

We hope for a good weekend. Patrick & Eddie are coming home...we miss them.

We had a great visit this week from Connecticut friends. Diane Hunter and Maya and the baby Matteo (We are sorry that Steve and Max didn't make it) came for a visit. We had a good time and took the train downtown to the Hard Rock Cafe one night for dinner.

It was great to see them. Matteo just had his first birthday party. In lieu of birthday gifts the Hunter's collected donations for Alex's Lemonade Stand Fund. They delivered a nice check to Alex on their visit.

We will give a full update this weekend.

I'll get right to the point here... Alex's scans went pretty well. Her disease is stable with no obvious growth or new tumors. Obviously, we would have liked to see some shrinkage of the tumors, but considering how quickly they were growing, just keeping them stable for a month is something to be happy about. The other thing to keep in mind is that she was only able to get a half dose last month due to high liver counts. She is scheduled to get chemo for 2 weeks again starting on Monday and she should be able to get the full dose this time. All in all, we are satisfied with the results but are hoping to see shrinkage the next time.

Alex is feeling pretty good today after having a rough week due to pain in her mouth from the dose of vincristine she received last Friday. It is amazing how different she acts when she is feeling good -- we all enjoy days like these and will make the most of this weekend. Today Jay is working, the big boys(Patrick and Eddie) are once again vacationing at Grandma and Grandpa's beach house, and it is unbearably hot and humid, so a trip to the mall may be the highlight of our day. Also, my friend Alicia who has an unbelievable way of getting people to give her things , made a couple of phone calls and surprised Alex by getting tickets for us to the American Idol concert in Philly on Sunday night. The tickets were donated by the producer of the American Idol tour (I think). Thank you Alicia! Anyways we are going with two of Alex's friends and her friend's Mom who is also a friend of mine-- it should be a lot of fun so let's hope for a fever free, emergency department free weekend!

I took Patrick, Eddie, and cousin Zachary up to Connecticut on the train yesterday. They will be spending a week at The Cape with Jay's family. I am sure they will have a great time. They are doing fine but are disappointed that July is almost over already. Summer is never long enough.

Alex's Lemonade Stand continues to keep us busy and the donations keep coming in. I do not have an updated total this week but I am sure we received at least $1000 in donations since the segments aired on the morning programs.

I am going to update the pictures this morning, so be sure to check that out.
Thanks to you all for checking in on us! Your support makes a huge difference to us.
Love, Liz

Saturday, July 26, 2003 7:45 AM CDT

Hello everyone,

I'll get right to the point here... Alex's scans went pretty well. Her disease is stable with no obvious growth or new tumors. Obviously, we would have liked to see some shrinkage of the tumors, but considering how quickly they were growing, just keeping them stable for a month is something to be happy about. The other thing to keep in mind is that she was only able to get a half dose last month due to high liver counts. She is scheduled to get chemo for 2 weeks again starting on Monday and she should be able to get the full dose this time. All in all, we are satisfied with the results but are hoping to see shrinkage the next time.

Alex is feeling pretty good today after having a rough week due to pain in her mouth from the dose of vincristine she received last Friday. It is amazing how different she acts when she is feeling good -- we all enjoy days like these and will make the most of this weekend. Today Jay is working, the big boys(Patrick and Eddie) are once again vacationing at Grandma and Grandpa's beach house, and it is unbearably hot and humid, so a trip to the mall may be the highlight of our day. Also, my friend Alicia who has an unbelievable way of getting people to give her things , made a couple of phone calls and surprised Alex by getting tickets for us to the American Idol concert in Philly on Sunday night. The tickets were donated by the producer of the American Idol tour (I think). Thank you Alicia! Anyways we are going with two of Alex's friends and her friend's Mom who is also a friend of mine-- it should be a lot of fun so let's hope for a fever free, emergency department free weekend!

I took Patrick, Eddie, and cousin Zachary up to Connecticut on the train yesterday. They will be spending a week at The Cape with Jay's family. I am sure they will have a great time. They are doing fine but are disappointed that July is almost over already. Summer is never long enough.

Alex's Lemonade Stand continues to keep us busy and the donations keep coming in. I do not have an updated total this week but I am sure we received at least $1000 in donations since the segments aired on the morning programs.

I am going to update the pictures this morning, so be sure to check that out.
Thanks to you all for checking in on us! Your support makes a huge difference to us.
Love, Liz

Friday, July 25, 2003 8:24 AM CDT

Hello again!

Just a quick update....Alex has a CT SCan today. We will let you know the results when we hear them.



Well, as most of you know, we made it to New York for our TODAY Show appearance with Matt Lauer. Alex was discharged from the hospital on Sunday and we went straight to the train station, arriving in New York around 4:00. NBC took care of us very nicely and we stayed in a very nice suite at the Essex House -- the kids (and parents) really enjoyed it. We arrived on time (no small accomplishment for us) and were interviewed live on air by Matt Lauer at 8:15 am. I apologize to those who missed it, but our time to appear was moved up at the last minute. If you did miss it, you can either view it at the NBC Today Show website off of the link that says FREE VIDEO or we can email you the link, since we have it. We got some great pictures with Matt and Katie. They both seem very nice and Matt made us feel very comfortable before we went on the air with him. Also, the kids briefly met the two kids who star in the Spy Kids movies and we got a really nice picture with them. I will try to get those pictures posted in the next day or so. We arrived home around 2:00 this afternoon. We are thrilled that everything worked out for us and that Alex was well enough to go.

The CBS Early Show showed their segment on Alex this morning also. This can also be viewed on the CBS Early SHow website. It is a really well done story about Alex, with some great video of Alex. A shorter version of it may appear on CBS Evening News with Dan Rather this week, but we don't know for sure. Keep your TVs tuned to CBS this week!

Alex is feeling o.k. Her fever is still hanging around a little and she is still showing blood in her urine, but overall, I think her condition is definitely improved. We are hoping to stay out of the hospital this week, especially since she starts her 2 weeks of chemo next week.

I will update again soon, but that is all for now.
Thanks for checking in on us.
Love, Liz

Monday, July 21, 2003 9:54 PM CDT

Hello again!

Well, as most of you know, we made it to New York for our TODAY Show appearance with Matt Lauer. Alex was discharged from the hospital on Sunday and we went straight to the train station, arriving in New York around 4:00. NBC took care of us very nicely and we stayed in a very nice suite at the Essex House -- the kids (and parents) really enjoyed it. We arrived on time (no small accomplishment for us) and were interviewed live on air by Matt Lauer at 8:15 am. I apologize to those who missed it, but our time to appear was moved up at the last minute. If you did miss it, you can either view it at the NBC Today Show website off of the link that says FREE VIDEO or we can email you the link, since we have it. We got some great pictures with Matt and Katie. They both seem very nice and Matt made us feel very comfortable before we went on the air with him. Also, the kids briefly met the two kids who star in the Spy Kids movies and we got a really nice picture with them. I will try to get those pictures posted in the next day or so. We arrived home around 2:00 this afternoon. We are thrilled that everything worked out for us and that Alex was well enough to go.

The CBS Early Show showed their segment on Alex this morning also. This can also be viewed on the CBS Early SHow website. It is a really well done story about Alex, with some great video of Alex. A shorter version of it may appear on CBS Evening News with Dan Rather this week, but we don't know for sure. Keep your TVs tuned to CBS this week!

Alex is feeling o.k. Her fever is still hanging around a little and she is still showing blood in her urine, but overall, I think her condition is definitely improved. We are hoping to stay out of the hospital this week, especially since she starts her 2 weeks of chemo next week.

I will update again soon, but that is all for now.
Thanks for checking in on us.
Love, Liz

Sunday, July 20, 2003 8:39 AM CDT

Hello everyone!
What a week we have had...

This is going to be a short one because we are leaving for NYC today to be on the TODAY show tomorrow morning at 9:05. They called on Friday and asked if we were available to finish the segment they started in May. I waited to let people know because Alex has a fever and more blood in her urine so she in the hospital. We are planning on going still (she is insisting) and they are going to discharge her this morning. If she spikes a fever again between now and when we leave, we will not be going, Also, if her cultures come back positive and we are in New York, we will have to come back home for antibiotics immediately and will not be on the show. If we end up not making it in the show, we will try to update as soon as possible. We are very excited, especially Alex!
So, spread the word since I do not have time to call too many people today.

Also, earlier this week Traci Smith from The Early Show came to the house wih a crew to film a segment to be shown this week (I suspect Monday) on The Early Show. So, be sure to watch The Early Show-- it ends at nine so you should be able to watch both. This segment may air on CBS evening news with Dan Rather sometime this week, but that is not confirmed. It also might be on the local CBS affiliate stations sometime this week. Traci and John, the producer of the segment, have been great to work with and very supportive. Alex and Traci really hit it off and she managed to get an "interview" with Alex for over an hour (mostly playing, some talking). It should be a really good piece.

We are all doing fine and Alex has been feeling really good until she got this fever.

Gotta go!
love,liz

Saturday, July 12, 2003 7:44 AM CDT

Hello everybody this is Alex. I finished this round of chemo on Friday. I feel good.

I got a new bike this week. It is purple and white. I practiced with it everyday after chemo.

I am getting my nails done for the first time at a salon today. I think I will go for blue or pink.

It is supposed to be a nice weekend. I hope to have some fun and stay out of the hospital.

My counts are still doing pretty good.

My fund is still getting donations, thanks for the help in funding cancer research.

My cousin Zac is still visiting, we are having fun.

Take Care
Alex

Monday, July 7, 2003 10:08 AM CDT

Hello to everyone,

Alex made it through the long weekend without going into the Emergency Room.

At our town's annual 4th of July Kids Parade the theme was Honor Your Hero. Patrick & Eddie decided to decorate our float to honor Alex. Alex was more than happy to ride on it. It looked very nice and they won 1st place in their category.

We also went to see the fireworks on the river in Philly on July 5th.

Alex is feeling much better, probably the best she has felt in 6 months. We hope that it continues.

We will let you know how this 2nd week of this new chemo goes.

Thanks for checking in. Your support is appreciated!

Yours truly, Jay

Thursday, July 3, 2003 5:16 PM CDT

Hello to everyone,

One week down(out of a 2 week cycle) of the new chemotherapy. Alex's mood has finally gotten better. She has felt pretty bad all week.

One trip to the ER on Sunday to get platelets and one trip to the ER Wednesday night because of a bloody nose we could not get stopped.

We hope to stay out of the ER this weekend. We are also hoping this new chemo will start working and shrink her tumors.

Her yellow coloring from liver involvement has improved some at the end of this week. Her Bilirubin numbers are also looking better (we hope this is a sign of tumor shrinkage).

Patrick and Eddie are finally back home after visiting family in Connecticut for two weeks. They have brought back their cousin Zachary to stay for a week or so. We hope to take him for some nice day trips around Philly this weekend.

BELOW is THE JUNE 30TH Update


I know many of you have been checking the website regularly for an update, so here goes.

Alex is doing okay. She has not had any fevers or any problems that would land her in the hospital. However, she has not been feeling well, as she puts it, she "feels bad everywhere". She did start her new chemotherapy (irinotecan) today, much to our relief. It may sound strange to some of you that we are happy to see her start chemo again, but it comes as a relief to us. As each day goes by and we see obvious symptoms of her cancer progressing (very yellow skin from her liver tumor and increasing blood pressures from her kidney tumor) we worry about what the cancer will do next. We also see how sad and tired she is and we want her to feel better and be happy again. Having said this, I am happy to report that she was in a great mood today, before we even left the hospital. Most of the mood improvement was probably attributed to her getting blood today (she was very anemic) but I would like to believe that the chemo is already starting to help her. We have seen her react positively and very quickly to many other chemotherapies. She is not able to get the Vincristine (another chemo drug) this week due to her liver counts, but we are hoping that the Irinotecan will work quickly so that she can get it next week. The Irinotecan only takes about an hour for her to get through her port, so even though we are going into the onco clinic everyday for 2 weeks, there shouldn't be too many long days.

The boys are still in Connecticut and are due to arrive home on Wednesday. I think they are ready to come home, and I know I am ready to have them back, I really miss them. It will be nice to have the whole family home at the same time -- it has been over 3 weeks since we have all been here together.

I guess that's all for now, I will update later in the week to let you know how Alex is tolerating the new chemo.(it can take a few days for the side effects to start).

Thanks for checking in. Your support is appreciated!

Monday, June 30, 2003 10:33 PM CDT

Hello to everyone,

I know many of you have been checking the website regularly for an update, so here goes.

Alex is doing okay. She has not had any fevers or any problems that would land her in the hospital. However, she has not been feeling well, as she puts it, she "feels bad everywhere". She did start her new chemotherapy (irinotecan) today, much to our relief. It may sound strange to some of you that we are happy to see her start chemo again, but it comes as a relief to us. As each day goes by and we see obvious symptoms of her cancer progressing (very yellow skin from her liver tumor and increasing blood pressures from her kidney tumor) we worry about what the cancer will do next. We also see how sad and tired she is and we want her to feel better and be happy again. Having said this, I am happy to report that she was in a great mood today, before we even left the hospital. Most of the mood improvement was probably attributed to her getting blood today (she was very anemic) but I would like to believe that the chemo is already starting to help her. We have seen her react positively and very quickly to many other chemotherapies. She is not able to get the Vincristine (another chemo drug) this week due to her liver counts, but we are hoping that the Irinotecan will work quickly so that she can get it next week. The Irinotecan only takes about an hour for her to get through her port, so even though we are going into the onco clinic everyday for 2 weeks, there shouldn't be too many long days.

The boys are still in Connecticut and are due to arrive home on Wednesday. I think they are ready to come home, and I know I am ready to have them back, I really miss them. It will be nice to have the whole family home at the same time -- it has been over 3 weeks since we have all been here together.

I guess that's all for now, I will update later in the week to let you know how Alex is tolerating the new chemo.(it can take a few days for the side effects to start).

Thanks for checking in. Your support is appreciated!
Love, Liz

Tuesday, June 24, 2003 11:12 AM CDT

So far this year Alex's Lemonade Stand has brought in over $36,000 since June 7th for Pediatric Cancer Research. That brings the grand total for the Alex's Lemonade Stand to over $111,000. This is truly amazing.

Alex is out of the hospital! We are keeping our fingers crossed that she can stay out. We have to monitor her blood pressure very closely at home and adjust one of her medications accordingly.


Alex is not getting chemo this week, she will start her 10 day treatment next week because her counts were too low.


Eddie and Patrick are away for a week or so -- things are incredibly quiet here right now.

She is scheduled to start her new chemo, Irinotecan and Vincristine, on Monday, regardless of her counts, which are not yet recovered. Dr. Maris believes that this chemo will help Alex, if her body handles it o.k. If it doesn't work, or she can't tolerate the side effects, then we have surgery as an option also. It is also possible that we will still go ahead with the surgery even if the chemo is working (chemo is more effective with less bulky tumors). Dr. LaQuaglia at Sloane-Kettering has removed tumors from Alex 3 times before and we have a lot of confidence in him. He is an amazing surgeon, a great guy, with a legendary reputation for successful tumor resections. After looking at the films and talking to Dr. Maris, he believes he can remove the tumor probably without removing the kidney, and remove the liver tumor without damaging the liver. He also suggested that they do intraoperative radiation to the areas after he removes the tumors (this means that they radiate the areas while they can get a direct shot at them, before they "close her up")

Overall, her spirits are pretty good, knowing that she will be there every day outpatient for the next 2 weeks. I think she is nervous about the next phase of her treatment, since she knows it may include surgery. All of the presents and cards and words of encouragement really help her through these times (especially the presents, of course). Also, visits at the hospital really brighten her day-- special thanks to Grammy and Grampy, Kay Sweet, Gail Apfel, Carly and Jocelyn Hillman, Ligia and Andy Richter, and all of you who sent cards and presents to Alex. They are appreciated as much by me as they are by her -- I love to see her face when she gets the "surprise packages" and visitors.

As always, your support is greatly appreciated!

Love, Liz

Sunday, June 22, 2003 10:18 AM CDT

Hello again!

Alex is out of the hospital! We are keeping our fingers crossed that she can stay out. We have to monitor her blood pressure very closely at home and adjust one of her medications accordingly.


She is feeling pretty good, and enjoying her visit from Aunt Margaret from NYC for the weekend. A trip to see 'Finding Nemo' is in order.

My parents came to visit this week and were, as usual, a huge help. Eddie and Patrick are away for a week or so -- things are incredibly quiet here right now.

She is scheduled to start her new chemo, Irinotecan and Vincristine, on Monday, regardless of her counts, which are not yet recovered. Dr. Maris believes that this chemo will help Alex, if her body handles it o.k. If it doesn't work, or she can't tolerate the side effects, then we have surgery as an option also. It is also possible that we will still go ahead with the surgery even if the chemo is working (chemo is more effective with less bulky tumors). Dr. LaQuaglia at Sloane-Kettering has removed tumors from Alex 3 times before and we have a lot of confidence in him. He is an amazing surgeon, a great guy, with a legendary reputation for successful tumor resections. After looking at the films and talking to Dr. Maris, he believes he can remove the tumor probably without removing the kidney, and remove the liver tumor without damaging the liver. He also suggested that they do intraoperative radiation to the areas after he removes the tumors (this means that they radiate the areas while they can get a direct shot at them, before they "close her up")

Overall, her spirits are pretty good, considering she is leaving the hospital tomorrow, knowing that she will be there every day outpatient for the next 2 weeks. I think she is nervous about the next phase of her treatment, since she knows it may include surgery. All of the presents and cards and words of encouragement really help her through these times (especially the presents, of course). Also, visits at the hospital really brighten her day-- special thanks to Grammy and Grampy, Kay Sweet, Gail Apfel, Carly and Jocelyn Hillman, Ligia and Andy Richter, and all of you who sent cards and presents to Alex. They are appreciated as much by me as they are by her -- I love to see her face when she gets the "surprise packages" and visitors.

As always, your support is greatly appreciated!

Love, Liz

Friday, June 20, 2003 10:09 PM CDT

Hello again!

We are fairly certain that Alex is coming home tomorrow morning! The past couple of days she has really "bounced back" as we were hoping. Today she did not have a fever all day so we are keeping our fingers crossed that over night she won't spike again.

She is feeling pretty good, and looking forward to Aunt Margaret coming to visit tomorrow. We are going to try to sneak out (maybe without Joey) to see "From Justin to Kelly" (the American Idol movie) sometime this weekend. My parents came to visit this week and were, as usual, a huge help. Eddie and Patrick are away for a week or so -- things are incredibly quiet here right now.

She is scheduled to start her new chemo, Irinotecan and Vincristine, on Monday, regardless of her counts, which are not yet recovered. Dr. Maris believes that this chemo will help Alex, if her body handles it o.k. If it doesn't work, or she can't tolerate the side effects, then we have surgery as an option also. It is also possible that we will still go ahead with the surgery even if the chemo is working (chemo is more effective with less bulky tumors). Dr. LaQuaglia at Sloane has removed tumors from Alex 3 times before and we have a lot of confidence in him. He is an amazing surgeon, a great guy, with a legendary reputation for successful tumor resections. After looking at the films and talking to Dr. Maris, he believes he can remove the tumor probably without removing the kidney, and remove the liver tumor without damaging the liver. He also suggested that they do intraoperational radiation to the areas after he removes the tumors (this means that they radiate the areas while they can get a direct shot at them, before they "close her up")

Overall, her spirits are pretty good, considering she is leaving the hospital tomorrow, knowing that she will be there every day outpatient for the next 2 weeks. I think she is nervous about the next phase of her treatment, since she knows it may include surgery. All of the presents and cards and words of encouragement really help her through these times (especially the presents, of course). Also, visits at the hospital really brighten her day-- special thanks to Grammy and Grampy, Kay Sweet, Gail Apfel, Carly and Jocelyn Hillman, Ligia and Andy Richter, and all of you who sent cards and presents to Alex. They are appreciated as much by me as they are by her -- I love to see her face when she gets the "surprise packages" and visitors.

As always, your support is greatly appreciated!

Love, Liz

Tuesday, June 17, 2003 9:11 PM CDT

Hello again,

Alex is still in the hospital due to a fever spike. We are not sure when she will be home. It is possible that she will stay in for a while since she is indicating that she is most comfortable with that. She is pretty amazing when it comes to knowing what is best for her -- she even asked the nurse to increase her fluids tonight since she wasn't feeling well and she thought it might help!

The plan is to give her chemo next week and the following week, with the weekend as a break. If the chemo works, hopefully her blood pressure will improve and things will start to improve. If the chemo doesn't work we may be going to Sloane-Kettering for surgery to remove as much as possible of the tumors.

My parents are visiting (helping out) right now and Thursday they will take Patrick and Eddie to Connecticut for a visit with family. This was planned a while ago so the timing works out well for everyone.

We are doing fine, Joey is certainly adjusting to his "second home" at CHOP, and Jay is managing to spend nights at the hospital and days working. The boys are finished with school -- Eddie "graduated" from preschool (diploma and all) and Patrick is finished with 3rd grade. I can hardly believe that next year I will be sending Eddie off to school with Patrick. Alex insisted on attending school on the last day, so we went on a pass and she visited briefly with her friends and teacher.

Thanks for your support. I have updated the room number, address, and phone number below, for those of you who have been asking.

We will update soon,
Love, Liz

P.S. For results of Alex's latest CT Scan look at journal history at yesterday's entry.

Monday, June 16, 2003 10:58 PM CDT

Hello again,

Well, today brought good news and bad news.
The good news…Alex is coming home tomorrow morning, assuming all goes well tonight. Her blood pressure seems to be under control and the headaches have improved.
She is going to try to get to school tomorrow to see her friends and her teacher before the summer.

Unfortunately, the bad news is that her CTScan today showed continued progression of her cancer, with 2 new tumors in her pelvis and some growth of the tumors into her liver and kidney and in a bone in her back. Her blood pressure problems and the resulting headaches are due to the tumor on her kidney. If she continues to do well on the blood pressure medicines, we will move forward with chemo as soon as her counts improve. If her blood pressure starts to cause more headaches or increases to very high levels again, she may be headed for a surgery to remove her kidney and the tumor attached to it.

We are hopeful that the chemo will work quickly to reduce the size of the tumors and she will “bounce back” as always. She is very happy to be coming home, but a little nervous that her headaches will “come back”. Overall, she is in pretty good spirits now that her head is feeling better.

We appreciate all of your support. We will be sure to keep you all updated.
Love, Liz

FRIDAY, JUNE 13, 8:30 AM

Hi everyone,
Just a quick note... Alex is still in the hospital. Her headaches have improved but not gone away. She has had a very difficult week -- I feel so bad for her. She is on pain medicine and blood pressure medicine. They think the cause of the headaches is surges in her blood pressure. They increased her blood pressure medicine in hopes that in a couple of days, the headaches will resolve. She also , spiked another fever last night , which means she will definitely be in for a couple more days, at least.

Thanks for checking in, I will keep you updated.
Liz

P.S. For those of you who missed the lemonade stand, Fox News did a nice segment that you can view at www.Foxnews.com. From the home page you need to click on Fox Report. The story is in the right column, with a picture. (you have to sign up to view the video, but it's free)

MONDAY, June 8th
Hello again!

I thought I would let you all know that Alex is in the hospital with a fever and intermittent migraines. She had a CT Scan today and it did not show any tumor activity in her brain, which is obviously a huge relief. They are going to keep an eye on her fever and wait for blood cultures. Also, they are continuing to investigate a possible cause of the headaches. Either way we will be staying there for at least a couple of days. I will update when we know more.
Thanks again for your support!
Love, Liz

ABOUT ALEX'S LEMONADE STAND ON JUNE 7TH

We had a rain soaked Alex's Lemonade Stand on Saturday. Despite the rain we were overwhelmed with people coming by.

Saturday's Lemonade Stand set a record for Alex. She raised $13,216!

We are so appreciative of all of the people who came out to help in the pouring rain.

Some special guests were: Billy King from the Sixers, Phil Martelli (St' Joes Coach), Billy Hahn (LaSalle Coach), Fran Dunphy (Penn Coach), Mike Caron, his lovely wife Allison and beautiful daughter Olivia (From Wash DC), Todd & Family from CT, Aunt Margaret (from NYC). Also, our friends Carly and her mom Jocelyn, and Gwen Owens and her daughters.

We had lots of help from Alex's 1st grade class, Miss Hegarty, Alicia Kopp, Ligia & Andy, & Stefan Richter, Kay Sweet, Bill Campo & Family, John Gerben(Radio Ads, Tent, and so much more), lots of other helpers from Penn Wynne School and lots of others.

Also, a great group from CHOP came -- nurses, pharmacists, and Dr. Maris and his family.

I also must thank all of the businesses and organizations that donated items for the stand. Especially, Valley Forge Auto Centers, and The Philly 6 Coaches vs. Cancer. I apologize for not mentioning everyone by name, but we are so appreciative of everyone who contributed in any way.

There were lots of media people here, from just about every Philly TV Station & Newspaper. The Today show was here to film for a piece later this month and Fox News will air a piece on their national morning show (I think) this week.

The one bad note is that Alex got a migraine headache and had to take a very long break from the stand. Hopefully some sleep will make her feel better.

We are heading into a rough week for counts but we will hope for the best!

Thanks to everyone! We are so grateful and fortunate to have so many supporters.

We'll keep you updated!

Love, The Scott Family

Tuesday, June 3, 2003 2:12 PM CDT

Alex's Lemonade Stand is this Saturday, June 7th (rain or shine).

Alex is getting chemo.(Carboplatin & VP-16) Tuesday & Wednesday this week. Her dose of Carbo has been adjusted because her counts were hit so hard last round. Hopefully she will be feeling well on Saturday for the Lemonade Stand.

Sunday, May 25, 2003 9:16 PM CDT

Hello to everyone,

Another quick update...

Alex is feeling good and will probably get chemo on Thursday and Friday. Her counts are just starting to recover but she is still needing platelets every couple of days. If her counts don't show much improvement in the early part of this week, then she will not receive more chemo until next week. I'll let you know.

We are busy preparing for her lemonade stand on June 7th. It is starting to come together... , we are cleaning up the yard, buying supplies, and working on getting items like lemonade,ice, a tent etc. donated by local businesses. Also, we are trying to get some items donated for a raffle that Patrick is taking charge of (we have already received Phillies tickets and some t-shirts and hats). We are also hoping to get some media coverage so that we will have a good turnout. The Today show is sending a camera crew to film the lemonade stand so that they can use it in a piece they are doing on Alex sometime later in June. (I will be sure to include the date of the Today show piece in a future update.) It should be a great day. Let's hope that Alex is healthy and the sun is shining on June 7th!

Thanks again to all of you for your cards, e-cards, presents and get well wishes when Alex was in the hospital. Alex received a very cute Cabbage Patch Kid from a woman and her son. This is kind of embarassing, but I lost the return address on the package and I would like to thank them. If the person who sent the package is reading this -- THANK YOU!!!! --- please email me.

That is all the news for now... the boys are all doing great. We are counting the days until summer vacation!

I'll update soon!
Love, Liz


P.S. The Philadelphia Foundation has named Alex their Philanthropist of the Year for 2002. She will receive the award on June 11th at their 85th anniversary celebration.

Tuesday, May 20, 2003 10:10 PM CDT

Alex is out of the hospital. She is feeling pretty good and glad to be home.

She will be getting another round of chemo at the end of next week.

We will give a more in depth update very soon.

Tuesday, May 20, 2003 10:10 PM CDT

Alex is out of the hospital. She is feeling pretty good and glad to be home.

She will be getting another round of chemo at the end of next week.

We will give a more in depth update very soon.

Monday, May 12, 2003 10:21 PM CDT

Hello to everyone,

Just a quick note to let you all know that Alex is still in the hospital and probably will be for the rest of the week. Just as we were discussing leaving last week, her blood cultures came back positive for bacteria. This means a minimum of 7 days of IV antibiotics. We were considering coming home and administering the IV meds at home but now she is having trouble with her port. Her implanted port is under the skin surface on the chest wall between her neck and shoulder. To use the port, the nurse inserts a needle through the top skin surface to access the port. Chemotherapy, blood and IV medicines can be given through this port and blood can be drawn from the port. Unfortunately, her port appears to be leaking, so she had to have a peripheral IV put in today to receive her fluids and antibiotics. Most likely tomorrow they will do an XRay to determine if the port needs to be removed and replaced, which is a minor surgical procedure but major enough to upset Alex. Anyways, her spirits are still pretty good, considering the events of the past week and a half.

The good news is that the blood in her urine has not returned and she is feeling good. Alex and I even managed to escape from the hospital to attend Cinderella at the Pennsylvania Ballet, so the weekend was not a total bust!


Thanks again for all of your support. We really appreciate it!
I will update again in a couple of days.
Love, Liz

Friday, May 9, 2003 8:54 PM CDT

Hi again,

Alex is still in the hospital but is doing better. The bleeding appears to have stopped but only time will tell. Her counts have dropped severely and as a result she spiked a fever today. This will probably prevent her from being discharged tomorrow as planned.

The good news is that she has been in a great mood thanks to lots of attention from us and support from all of you. She has had visitors, including Aunt Margaret who stayed with us to help out this week, our friend Ligia Richter, and our friend Kay, as well as a whole crew from her school - Ms. Apfel, Ms. Hegarty, Ms. Valentine, and Ms. Deasey. Thanks to all of you for visiting, it really makes her stay at the hospital special. Also, I have to mention that World B. Free of The Philadelphia Sixers paid her a special visit. We met him when he presented Alex with the Hometown Hero award at the Sixers game last October. He is a great guy and made Alex's day by surprising her with a visit and some special Sixers presents. I also have to thank everyone who sent cards, e-cards, and presents. The presents she recieves when she stays in the hospital play a huge part in keeping her spirits up and keeping her busy. Thanks to everyone!

The other good news is that her liver functions have returned to normal and the mass we can feel in her belly is definitely smaller than last week. This is all good evidence that the chemo is starting to work. For now, Dr. Maris would like to give it more time to work and hold off on radiation therapy. If her counts recover in time, she will receive 2 more days of the same chemo in a couple of weeks.

I also must mention that we were able to attend the Bald is Beautiful head shaving at Clara Barton Elementary school in Philadelphia. About 25 fourth graders and a number of adults (including Jay) shaved their heads to raise money for the National Childhood Cancer Foundation. Alex was the inspiration for the event and we were able to attend on a pass from the hospital. She had a good time, despite being a little tired, and managed to personally serve about 50 cups of lemonade to her friends there. The 4th grade class there has been a huge support to Alex this year and I think they are inspirational. They raised $6000 for the NCCF through this event! They also collected 700 toys to donate to the hospital and many of the girls cut their long beautiful hair to donate to Locks of Love for wigs for cancer patients. It was a great show of support and a reminder of the generous and caring nature of kids.

I will update when Alex is home (probably by Monday).
Once again...thanks for your never ending support and generosity. It makes a difference!
Love, Liz

Tuesday, May 6, 2003 6:07 AM CDT

Hello again,
I will try to give you an idea of what is going as quickly as possible here...
Alex's CT scan confirmed that the new treatment (Gleevec)was not working. She has two active tumors- one pushing up against her liver and one pushing up against her kidney. She started on a different chemo last week and handled it fine (no complaints except for nausea).

As a result of the increase in size of the tumors, Alex is having some problems with her liver and kidney at the moment.

Her liver is not a real problem yet, she has high bilirubin and her skin and eyes are a bit yellow. They will be watching this.

Her kidney has become the bigger problem at the moment and Alex is in the hospital right now due to excessive blood in her urine, which they believe is caused by the tumor pressing on her kidney.
The bleeding appears to have stopped for now but they want to keep an eye on her as her counts drop this week due to chemo last week. The concern is that as her platelets drop and as the tumor might possibly grow more, she may have quite a bit more bleeding. Hopefully,the chemo will "kick in" over the next couple of days and start to shrink the tumors thereby relieving the pressure on her kidneys and liver. If the chemo doesn't work quickly enough, she will be getting some radiation to the area soon. If the chemo does work, then she will get more chemo in few weeks and possibly radiation also.

She is feeling fine, with no complaints of pain at all, which is a good sign. She is not happy about staying in the hospital but is dealing with it surprisingly well. Her biggest complaint is boredom!
I will let you all know how she is doing.
Love, Liz
p.s. I wrote the address for the hospital and the phone number to her room below.

Saturday, April 26, 2003 11:44 AM CDT

Hi family and friends!

Sorry about the delay in updating, but I am doing my best here!
First things first, Alex is feeling o.k. She has handled the new treatment well and has no problem swallowing the 3 pills daily -- she washes it down with a little apple juice and 4 cheese Doritos. She has continued to need weekly platelet transfusions and has also needed a few blood transfusions. Her white count has not been knocked out as it was on the Topo/Cyclo so she has avoided hospitalizations for fevers. Unfortunately, it appears that the Gleevec is not working or at least not working well enough. Her first indicators (bone marrow biopsies and VMA/HVA values) were the same and somewhat worse, respectively. Just to refresh your memories, the VMA/HVA values are indicative of neuroblastoma activity and several months ago hers were normal or close to it. They have continued to rise and are now at 30 and 40, which is definitely out of the range of normal. We are also feeling a large mass in her abdominal region, which the doctor thinks is probably neuroblastoma. (She will most likely get a CT Scan to confirm it.) Overall, she is feeling pretty good, with a few complaints of belly pain and headaches. We will meet with Dr. Maris on Tuesday to see what the next step in her treatment will be -- I will let you all know.

Also, we attended the Volvo For Life awards last week in NYC. It was an amazing experience and we had a great time. The people from Volvo -- right up to the president and CEO, treated us very well and made us feel like VIP's. The people who worked with us from the production company and the PR firm were all so nice and just a great group of people. We stayed at the very cool W Hotel in Times Square, compliments of Volvo. Aunt Margaret met us there and took care of Joey while we went, (via our own driver), to the awards. We met so many exceptional people, including the other heroes and award winners. One of the most touching moments happened unexpectedly when Bao Xiong, one of the top 3 winners gave a beautiful speech about helping others and then called Alex up to the stage. She had her daughter present Alex with a hand embroidered blanket that tells the story of Bao's life and the struggles she has endured to get to where she is today. She wanted Alex to keep it as a sign of the difficult journey they share and to give her strength. It was a remarkable gesture from a truly remarkable person. In addition, the grand prize winner, Robert Young, introduced himself to us after the ceremony and gave Alex a very special bracelet that was given to him when he was diagnosed with a serious disease. He was told it would make him better and he wanted Alex to have it. It was such a personal and kind gift from another amazing person. I could write so much more about the night and the celebrities that were there but those two moments were the highlights.
Volvo gave Alex $10,000 for her Lemonade stand fund in addition to the $10,000 personal award. The North American President of Volvo personally presented Alex with her award and had many nice things to say about Alex. Volvo was clearly committed to this project and it showed in how considerate and helpful the people were who put the event together. We took a few pictures and I will post some of our favorites.

We had a nice Easter at our friends The Divers and that ended a great spring vacation for the kids. We didn't make it to Connecticut but we hope to in the near future.

Thanks to all of you for checking in on us and signing the guestbook. We check for entries everyday and appreciate all of your support.
Love, Liz

P.S. Alex and I changed the look of the page.

Friday, April 11, 2003 3:46 PM CDT

Hi family and friends!

I wanted to update on a couple of things...
First of all, Alex is doing o.k. She had a couple of tough weeks adjusting to the new treatment but seems to be feeling better this week and is back to her "old self". We do not yet know if it is working, and won't find out for at least two weeks. We have been spending considerably less time at the hospital which has been appreciated by Alex and all of us. I will let you know when she is scheduled for the next round of scans.

Alex's Lemonade Stand Fund continues to inspire us and others...
One of the most recent notable events was a visit to Clara Barton Elementary school in Philadephia. The 4th graders there have been learning all about neuroblastoma as part of their community outreach project. They invited us to the school for a "question and answer" session and made us feel so welcome. We had a great time--they gave Alex a microphone and the students asked her a lot of interesting questions. It was obvious that they really care about Alex and have learned a great deal about neuroblastoma and cancer. The culmination of their project will be a fundraising day for cancer research which will be called "Barton's Bald is Beautiful Day". A number of kids and some administrators are shaving their heads as a way to raise money and show support for kids with cancer. We are going to attend the event and bring lemonade for all. These 4th graders have put a tremendous effort into this project and I am very impressed and touched.
Another touching effort was made this week by a first grade class in Greenville, North Carolina. They had an Alex's Lemonade Stand this week and raised almost $200! Alex has been enjoying emailing with them and was very happy that they were holding a lemonade stand for her fund.
Also, this week we heard from the people at Volvo regarding the Volvo for Life awards. Alex, as most of you know was a top ten winner in their Top Hero Awards. We heard this week that she was not chosen as a top 3 winner by the panel of judges. However, the nice people at Volvo were so inspired by her story that they decided to give her a special award at their award ceremony in New York next week. They are sending us to NYC for the dinner next Wednesday.,hotel included, where they will present her with her award and a "big surprise" (I don't know what the surprise is). I will be sure to take pictures and post them as soon as possible. We are all looking forward to the trip, especially Alex.

I will update again after Easter.
Thanks for checking in!
Love, Liz

Saturday, March 22, 2003 1:58 PM CST

Hello again!

Just a quick note to update on Alex's scans this week. The week was a mixture of good and bad news. Basically, her scans showed that most tumor areas have remained stable with one tumor increasing in size. Her bone marrow aspiration looked pretty good and showed lots of healthy "pre-platelet" cells. Although the news could have been better, it also could have been worse so we are feeling o.k. about things right now.

The best news of the week is that she is enrolled in the Gleevec study and has already taken her first dose. Gleevec has been used with success in treating other types of cancer, especially CML, and we are hopeful that it may help Alex. It is easily administered and only requires Alex to take 3 pills once a day every day. She took her first dose yesterday in clinic and so far, so good. She will take it for a month and then we will repeat all of her scans and biopsies to decide if we should continue her on the study. At the very least, this treatment will give her a break from her monthly chemo schedule and weekly platelet transfusions since she can take it from home and it won't effect her counts as much. We will need to go to the hospital for a weight check and blood work twice a week but hopefully, the total time spent there will be far less.

I will keep you updated on how she is tolerating the new treatment and I will post new pictures of the baby next week.

Thanks for checking in!
Love, Liz

Tuesday, March 18, 2003 10:15 AM CST

Hello to everyone!

First of all, I have (finally) posted some pictures of Joseph and the kids. He is great -- so far he is a very easy baby, although his nursing schedule is pretty demanding. I am feeling almost back to normal and am enjoying having a newborn even more than I thought I would. The kids have had an easy time adjusting to their new brother and are very proud and protective already. Alex especially is enjoying him and spends lots of time holding him and helping out. My parents stayed until Friday which was a huge help to us and made our first 2 weeks very relaxed--Thanks Mom and Dad!

Alex has been feeling great and once again, breezed through her last chemo with some platelet and blood transfusions but no fevers or illnesses. This is a big week for us because she is having scans and biopsies to reevaluate her disease. We are hoping to get her into yet another study but we need to have the scans done before she can start on it. If she doesn't meet the eligibility requirements for it, then she will get chemo next week and we will try again another time. It sounds pretty likely that she will make it into this study, it is a drug called Gleevac (I am not sure about the spelling) -- I will provide more info. about the study as we know more. I will update with news on her scans at the end of the week so please check back.

Alex's Lemonade Stand continues to be a huge success. We have recently requested grants to go to Oncology Research at CHOP ($30,000), Toireasa's Dream ($5,000), Connecticut Childrens Medical Center ($5,000), and CHOP Child Life Dept.($1,000). The most recent happenings include a really nice donation from the Philadelphia 6 basketball coaches and a special presentation of the $1,000 check to her at their annual March Madness kickoff breakfast.Also, we found out this week that she is a top ten winner in the Volvo for Life awards. She receives a personal award of $10,000 for this and a chance to win $50,000 for her charity and/or a Volvo for life if she is selected as a top winner. For more info and to read her nomination, which was sent in by her Aunt Erin, go to the Volvo link below. Thanks Erin!

We are starting to think about her 2003 lemonade stand and will let you all know when we have a date.

Thanks for your patience -- I know my updates have been slow coming these days.
We will post her scan results as soon as we have them (probably Friday), so check back soon.

Thanks for your great support!
Love, Liz

Tuesday, March 4, 2003 9:31 PM CST

The new baby was born Tuesday 3/4/2003.

Mom and baby Joseph Michael Scott (7lbs 15 oz)are both doing very well. we will post pictures soon.

Alex, Patrick and Eddie are all excited about the new baby.

Friday, February 7, 2003 8:48 AM CST

Hello to all,

We have had a relatively quiet month here. Alex did very well through her last round of chemo. She received several transfusions due to low counts but was not sick or exceptionally tired. She bounced back quickly and we have actually had almost a week without going in for counts or platelets. She is scheduled for more of the same chemo on Monday through Friday of next week. Her latest VMA/HVA results show that her disease, although tremendously reduced, has stablized. Our plan is to keep her stable on the Topo/Cyclo until her name comes up for another study and then reevaluate and decide if she should switch. There is still a chance that the Topo/Cyclo will continue to reduce the disease and at the very least we can keep it stable until she is eligible for something else. All in all, we are happy with how well she is doing, and she certainly is enjoying herself.

We are all enjoying the new year and the "calm before the storm" (the storm being a new baby). Patrick is doing very well in 3rd grade and keeps pretty busy with karate and his friends. Alex is loving 1st grade and has made a lot of new friends this year. Her teacher, Ms.Hegarty has been wonderful about scheduling special activities around Alex's schedule, so she doesn't feel like she is missing too much.
Eddie is doing great and is looking forward to kindergarten registration at the end of the month. He will be happy to be in the same school as his big brother and sister next year. I am feeling fine and expect I will deliver the baby in about 2 - 3 weeks. I am not due until March 17th, but based on how I feel and my previous deliveries, I am betting it will the last week of February. Jay has been very busy between work, projects around the house, and trying to make sure I take it easy. Somehow, he manages to do it all without "breaking a sweat".

Alex celebrated her 7th birthday party on January 18th. She had a karate party at her karate school with about 10 girls and they seemed to enjoy themselves. Her birthday always is a special day, well, because it is her birthday and obviously an important day to her and our whole family. It also is a reminder of what she has been through and accomplished in her life. She was diagnosed 2 days before her 1st birthday, and completed her first surgeries on her birthday. I cannot believe it has been 6 years since we first heard the diagnosis and everything that went along with that. The support we have received from our family, friends, and strangers has been an inspiration to us and made a huge difference in our lives. We feel very lucky to have so many people who care about Alex and our family -- THANK YOU!!!

Finally, you should all know that Alex's Lemonade Stand is still receiving a tremendous response and seems to be picking up momentum that will carry right into her next stand in the spring. We have received over $40,000 in donations since November and we have received hundreds of letters and emails from all over the country (and world). I wish I could share all of the great letters and messages we receive because they really are very encouraging and touching. Among them have been many people who have lost family members to neuroblastoma, people who are currently dealing with neuroblastoma, and many long term survivors of neuroblastoma. A woman who is a neuroblastoma survivor and her 3 children are planning a "city wide" Alex's lemonade stand in Winsten-Salem, North Carolina. We have received hundreds of letters from people who read or heard about her story and took the time to send her a note of encouragement and a donation. We have also had many children write letters, cards, and even organize their own fundraisers. A local Philadelphia program that works with middle school kids in the cities to promote community service is planning a fundraiser for Alex's Lemonade Stand through one of the middle schools. She and I will be going to meet them in person hopefully in the next month or so. Also, a few other schools are planning lemonade stands in the spring in honor of Alex's Lemonade Stand. A large daycare center in New York is donating the money from their "hop-a-thon" to Alex's cause. A group of students from the middle school in our township has done an impressive job of putting together a fundraiser. The kids organized sponsors and ordered teddy bears with a tag that says "Awesome Alex". They are selling the teddy bears and donating the money to neuroblastoma research at CHOP. They got the whole school involved and even kicked off the fundraiser with an assembly! Needless to say, we are grateful beyond words for all of the support and efforts on Alex's behalf.

THANK YOU!!!!!!!!!!!!!!

Keep your eyes open over the next few weeks for a "baby udpate"!
Love, Liz

P.S. I finally updated the photo album.

Saturday, January 11, 2003 at 09:12 AM (CST)

Happy New Year!

Well, we made it through another month without a fever. Alex has been feeling pretty good, but has had a little virus that Eddie, Patrick, and I had over the Christmas break. Her main symptom was extreme fatigue and stomach upset, but fortunately, no fever. We had a really nice Christmas and did manage to get to Connecticut for a few days to visit with our family and our friends at Connecticut Children's Medical Center.

Alex is getting another round of chemo (topo/cyclo) starting on Monday. Dr. Maris is still looking out for new studies that Alex might qualify for, but for now we are going to continue with the treatment she has been getting. As far as we know, it is still working against her cancer and she is tolerating it pretty well.

I am thrilled to report that Alex's Lemonade Stand Fund has been receiving donations from all over the country (and a few from other countries). The outpouring of support has been overwhelming and the letters have been inspiring and very touching. I am saving all of them and trying to respond to as many letters and emails as I can. I must admit that it is difficult to respond to everyone but I assure you we are reading every letter and appreciate all of your support, more than words can express. To date, she has received about $40,000 in new donations since the articles were in the magazines in November. This month we will be donating all of the money to her "favorites" with the bulk of the money going to oncology research at CHOP and additional donations going to Toireasa's Dream and Connecticut Childrens' Medical Center. Thank you all for your support, it is amazing!

Also, Lucia Herndon from the Philadelphia Inquirer, included Alex in her "look back on 2002". She did a nice update on Alex and even included a picture. It was her original article that was a huge part of how successful Alex's Lemonade Stand was this year. I will update the links below to include her latest article (the link does not include the picture).

Everyone here is doing very well and keeping very busy. I am about 2 months away from my due date and feeling very good.

Thanks again for all of your support!
With love, Liz

Saturday, December 14, 2002 at 07:17 AM (CST)

Hello everyone,

Just a short note to let you know what is happening here...
Alex did not make it into the study due to unexpectedly high liver enzymes. Her platelets were 66,000 on Monday, which qualified her for the study so we thought we were in. Monday night we received a call that one of her liver enzymes was too high and we should try again on Wednesday. She almost made it on Wednesday but was still too high so we thought she might make it on Friday. Needless to say, by the time Friday came, her spot on the study was taken so her liver enzymes were no longer an issue. (Her enzyme level was typical of patients receiving chemotherapy and long term medicines, it does not mean she has a liver problem) Her name is still on the list and we may try again when her name comes up next time.

Anyways, she is going back on the Topo/Cyclo next week for four days. Hopefully she will tolerate it as well as she has in the past.


I will update again next weekend -- Have a great week!

Love, Liz

P.S. For those of you who have already sent "bribes" to Alex... Thank you! I am sorry you went through the trouble only to find out she didn't make it into the study after all.

Sunday, December 08, 2002 at 09:26 AM (CST)

Seasons Greetings!

Alex's scans went very well. Her scans showed significant improvement in all previous tumor areas. Her bone marrow biopsies looked much better, there were still a few cancer cells floating around, but her marrow looked much healthier overall. Her last VMA/HVA values (those numbers that indicate neuroblastoma activity) were down a little bit which is a final reassurance that the chemo continues to work against her disease. This is all excellent news and gives us hope that we are moving in the right direction!

We are still waiting to see if Alex is eligible for a new study. The drug is called Genasense and it has been successfully used in various "chemo-resistant" adult cancers. Basically, Genasense breaks down a particular protein that is found in high concentrations in cancer cells that have proven to be chemo resistant. After the Genasense infusion, she will be given relatively low dose conventional chemo, with the idea that the neuroblastoma cells will no longer be resistant and they will die off. I am sure many of you are wondering why we would switch treatments when she has responded so well to the Topo/Cyclo treatments. Dr. Maris and we have given this a lot of thought and we all feel that she has potential to benefit from this study, and there is not a high risk to her overall health (although there is obviously some degree of unknown and known risks in any study). Dr. Maris believes that it is going to take something "new and different" to cure her, since there is basically no evidence that the Topo/Cyclo combination has cured many patients. We are thankful that the Topo/Cyclo has worked as well as it has and are anxious to see if we can go even farther with something new. If the Genasense doesn't appear to be helping, then we have the option of returning to the Topo/Cyclo treatments. Dr. Maris has always taken "the big picture" into account when treating Alex and we know that he would not recommend switching her to something that he did not feel had real potential to benefit her. This was not an easy decision, but she was fortunate enough to be at the top of the list for this brand new study (Genasense has not been used on neuroblastoma patients before), and we all felt we might be making a mistake if we passed on it.

We will know on Monday whether her platelets meet the criteria (50,000 or over). They were 44,000 on Friday so there is a good chance she will make it on Monday. If she does, then she will be admitted to the hospital for her first treatment starting on Tuesday or Wednesday. She will have to stay inpatient for the entire first treatment (about a week), but should she continue on the study she will be able to receive the infusion from home starting with the second treatment. If her platelets do not meet the 50,000 cutoff on Monday, we will move forward with more of the same chemo she has been receiving (topo/cyclo) starting on Tuesday. Either way, we are lucky to have options that were not available to us in the past. There's that research money at work!

I know this has been a long one, so I will sign off now. Jay or I will update later this week to let you know if she made the study or not. If she is in the hospital I am going to have to ask for some assistance in the "bribe Alex" campaign I have already begun. Anytime she has to try something new I always remind her that she will get presents. Even little things like notepads, new pens, or some kind of small toy or activity really keep her spirits up and make her look forward to what might arrive the next day. We will let you know!


Also, Thanksgiving was great. Jay's parents surprised the kids with a visit from Connecticut on Wednesday and stayed through Saturday. We were all very happy that they came and it meant a lot to us to have family here to spend Thanksgiving with. It also made my life easier, since Grandma cooked most of Thanksgiving dinner.
We had a great time -- we went to the Thanksgiving parade, a Christmas lights show at Longwood Gardens, and just enjoyed ourselves.


Thanks for checking in,
Love, Liz

Sunday, November 24, 2002 at 06:04 PM (CST)

Happy Thanksgiving!

Things continue to go well here. We have had several visitors over the past few weeks. Aunt Patty, Uncle Andy, Danielle, and Chelsea came for the Veteran's Day weekend. We really enjoyed seeing them and showing them around Philly. Also, this weekend Uncle Dan, Aunt Xiao Heng, and Jason spent the day on Saturday. Aunt Margaret also came with them and she is staying until tomorrow morning. It is always great to have visitors, especially since we won't be making it to Connecticut for Thanksgiving, due to a hectic hospital schedule this week.

Alex is having a bone marrow biopsy on Monday, a MIBG scan on Wednesday, and a CT Scan on Friday. We are anxious to hear results from these tests, but will probably only have very preliminary results this week, if any. The purpose of the scans and biopsies is to get a clear picture of how her current treatment has been working and the status of her cancer. Sometime this week, another study may be opening and we want to have as much information as possible to make the right decision about switching her to the new study or staying with what we are doing. I will post the results as soon as we have all of them (probably not until the end of next week).

Other than the big week for scans, we are looking forward to a quiet Thanksgiving. We plan on going to the parade in Philly with our neighbors, the Monahans, on Thanksgiving morning. We will likely spend the rest of the day hanging around the house and eating. I am going to make a turkey and lots of other good stuff. Despite being disappointed that we aren't going to Connecticut, the kids seem to be looking forward to it.

Alex has been receiving so many beautiful letters, emails, and words of encouragement from people all over the country since the Power of Caring piece was printed. Her fund has received an amazing $17,000 (and counting) in new donations. Many people have sent her gifts, including a whole collection of nesting dolls, a blender, and 6 lemonade stands donated by a toy company. The letters and emails have been wonderful to read and I will be saving all of them to read again. The show of generosity and support continues to inspire me and we truly appreciate it.
THANK YOU!

I hope you all have a great Thanksgiving!
Love, Liz

Sunday, November 24, 2002 at 06:04 PM (CST)

Happy Thanksgiving!

Things continue to go well here. We have had several visitors over the past few weeks. Aunt Patty, Uncle Andy, Danielle, and Chelsea came for the Veteran's Day weekend. We really enjoyed seeing them and showing them around Philly. Also, this weekend Uncle Dan, Aunt Xiao Heng, and Jason spent the day on Saturday. Aunt Margaret also came with them and she is staying until tomorrow morning. It is always great to have visitors, especially since we won't be making it to Connecticut for Thanksgiving, due to a hectic hospital schedule this week.

Alex is having a bone marrow biopsy on Monday, a MIBG scan on Wednesday, and a CT Scan on Friday. We are anxious to hear results from these tests, but will probably only have very preliminary results this week, if any. The purpose of the scans and biopsies is to get a clear picture of how her current treatment has been working and the status of her cancer. Sometime this week, another study may be opening and we want to have as much information as possible to make the right decision about switching her to the new study or staying with what we are doing. I will post the results as soon as we have all of them (probably not until the end of next week).

Other than the big week for scans, we are looking forward to quiet Thanksgiving. We plan on going to the parade in Philly with our neighbors, the Monahans, on Thanksgiving morning. We will likely spend the rest of the day hanging around the house and eating. I am going to make a turkey and lots of other good stuff. Despite being disappointed that we aren't going to Connecticut, the kids seem to be looking forward to a quiet Thanksgiving.

Alex has been receiving so many beautiful letters, emails, and words of encouragement from people all over the country since the Power of Caring piece was printed. Her fund has received an amazing $17,000 (and counting) in new donations. Many people have sent her gifts, including a whole collection of nesting dolls, a blender, and 6 lemonade stands donated by a toy company. The letters and emails have been wonderful to read and I will be saving all of them to read again. The show of generosity and support continues to inspire me and we truly appreciate it.
THANK YOU!

I hope you all have a great Thanksgiving!
Love, Liz

Friday, November 01, 2002 at 04:18 PM (CST)

Hello to everyone,
What an eventful few weeks we have had...

First of all, Alex is doing well and made it through another month without an overnight stay at CHOP. She received her 15th round of Topotekan/Cytoxan this week and is feeling fine so far. Her latest VMA/HVA results (those numbers that are indicators of tumor activity) were basically the same as last month. Just to refresh your memory, these values are now in the normal (o.k. just about normal) range for a child of her weight. This means that the chemo is working, although she probably has some cancer left. She will continue to receive this chemo or possibly switch to something else, we are waiting to hear.

We went to the Sixers' game on Wednesday night and had an absolutely great time! They made us feel so welcome and treated us like VIPs. Jay, Patrick, Alex, Eddie, my parents and I arrived early and sat on the Sixers' bench during warm-ups. We met several of the players and they signed autographs and posed for pictures. We also met Bill Cosby briefly and had our picture taken with him.
They had provided us with 5 good seats in one of the lower sections. We were shocked when they surprised us with 2 additional tickets -- they were courtside about 4 seats away from half court! Alex and I sat in the courtside seats (I really tried to convince her to let Daddy have a turn sitting there). She also was "Fan of the Game" and she, Jay, and I stood in line with the team during the National Anthem. She also high-fived all of the players as they were introduced. During the first time-out they called her out onto the court and presented her with her "Hometown Hero" award. Alex's teachers--Ms. Hegarty & Kay Sweet, as well as the school principal Ms. Apfel were able to use the extra seats we had purchased. Alex was so happy they came and it helped to see familiar faces in the crowd.
I will post pictures as soon as I get some (our digital camera wasn't working)but Maggie Arganbright from the Sixers took a ton of pictures and will be getting us copies of them. Overall, it was a "once in a lifetime" experience and we are very grateful to the great people at the Sixers who made it possible. There is a picture of Alex receiving her award from World B. Free (I am not sure if that is the correct spelling) on the Sixers' website. I will put the link below.

She continues to receive a good response from the Power of Caring feature. The Sports Illustrated issue came out yesterday (it is the World Series issue with the Angels on the cover) and she has already received a great response. Thanks to all of you who have sent Alex encouraging messages, we appreciate your support and kindness. It is amazing how many truly generous and thoughtful people there are in the world!

I am feeling good and am happy to report that everything looked good on my ultrasound. The big news is that it's a boy! Alex was a little disappointed (to say the least) but she seems to be handling it o.k.. Her excitement about the baby has decreased but I am hoping it will return when the baby is born. I know she will be a great helper and she will be crazy for the baby. The boys were happy to hear they will be having another brother, although I don't think it mattered to them either way.

Halloween was the usual fun. Patrick was the Grim Reaper, Alex was a witch, and Eddie was a ghost. They had their annual parade at their schools followed by a party. We did the usual trick-or- treating around the neighborhood, with Shammy dressed up as a "little sister" for Alex. She wore a dress and sparkly headband and actually seemed to enjoy it. She didn't try to take it off or mess with it at all -- I think she doesn't realize she is a dog, she thinks she is a child! Overall, a fun Halloween.

We enjoyed having Grammy and Grampy here this week. They were a huge help to me because they spent the week taking care of Eddie (and Shammy) while we were at the hospital. They also did the grocery shopping and cooking, which are my least favorite chores. We were glad they could come to the Sixers' game with us and spend Halloween here.

Well, I think I have covered all of the big (and little) news.
Thanks for checking in on us and for your unending support. I promise to post new pictures as soon as I have some.

Love,
Liz

Saturday, October 12, 2002 at 08:12 AM (CDT)

Hello again,

Well, our streak of good luck continues with Alex having another good month. She had chemo last week and so far, she has not spiked a fever. Actually, her counts have held up fairly well, but I suspect they haven't hit bottom yet.
She hasn't had any tests or scans done lately, so we will assume everything is still going well, until proven otherwise.

She has maintained a pretty regular schedule at school, managing to attend about 3 - 4 days a week, except for chemo week. Her class and teacher sent her 5 cards the week she had chemo, which was a great way to let her know that they missed her. She also is continuing with karate and has now decided to join the school Brownie troop.

The boys are also doing well. Patrick really likes his teacher and seems to be making a lot of new friends. He has moved up to the Black belt class in Karate, which means if he sticks with it, in about 4 or 5 years he will earn his black belt. He is determined to continue to work towards his black belt and if anyone has the patience to do it, I think it is him. He has also joined the Chess Club at school -- the kids get together at the school twice a month and play against each other. Eddie is also doing well -- the nice thing about Eddie is that he is always the same! He is also enjoying karate and, like everything he does, he does it with enthusiasm. He goes to school 3 mornings a week and the hospital with us the other 2 mornings. The hospital has become a "second home" to him and he has very little trouble amusing himself there.

We participated in the Paws Walk for a Cure here in Philadelphia and the Terry Fox Run, both of which raised money for pediatric cancer causes. I have pictures of both, but we seem to have misplaced our camera-- I will post them as soon as I find it.

Alex's Lemonade Stand now has its own website, you can view it at www.alexslemonade.com. I will put the link below. Thanks to Mike Caron for doing all of the work on it and keeping it updated for us. The first magazine with the article on Alex hit the stands this week -- it is the November issue of Parenting. The picture is really cute and the article is well done. It will also run in the Nov. 4 issue of Sports Illustrated and the Nov.11 issues of Time and People, if you can't find a Parenting copy.

Some more exciting news... The Sixers are honoring Alex as a "hometown hero" at their opening home game on October 30th. I am not sure what exactly this means, but I know that they will call her out to half court at halftime and present her with something. It also means that we are going to the game (probably with very good seats) and the woman who called said that we may get to meet some players before the game. Grammy and Grampy will be visiting that week so they will come to the game also (not such good seats). It will be a lot of fun and I will be sure to tell you all about it.

I am having my ultrasound in 2 weeks and Alex and I are equally excited to find out what we are having. It will probably be in the next update.

Thanks for checking in on us, we always appreciate the support.
Love, Liz

Thursday, September 19, 2002 at 03:22 PM (CDT)

Hello everyone,

This will be a short one, since things have been pretty quiet here.

The school year has been going really well so far. Alex has been going to school about 4 full days per week, with the exception of her chemo week. She is loving first grade and making a lot of new friends. She made it through another week of low counts without a fever but did need platelets a few times as well as red blood. Other than that we have had an uneventful month in the hospital visits and news department.
Patrick and Eddie have adjusted to school with no problems and seem to be enjoying it (as much as you would expect them to).

The Houlihan's dinner was a success and they presented Alex with a check for $650 to kickoff Alex's Lemonade Stand Fund. We had a great time, although Alex wasn't feeling well because she had received platelets earlier in the day. The management was extremely nice and went out of their way to make Alex feel special. They decorated our table with giant balloons and flowers, which Alex thought was pretty cool. Thank you Houlihan's, especially Mike and Suzie. Also thanks to those of you who came to the dinner, we are so glad you did.

Things have been pretty busy around here with the construction on our house crawling to a finish. The kids should be sleeping in their new rooms next week (Patrick has been sleeping in a tent on a mattress in his new room for the past week). Once the addition is done we only have to survive the kitchen renovation and we can have our lives back!

I am feeling fine and should be getting an ultrasound in the next month or so. I will be sure to post the big news - boy or girl-- as soon as I know.

Our family is walking in the Terry Fox Run/Walk for cancer research here in Philadelphia on Sunday, September 29th. Terry Fox was an 18 year old boy from Canada who lost his leg to bone cancer in the early 80's. After he was done with his chemo, he was determined to run across Canada to raise money for cancer research. He ran for 144 days straight, averaging about 26 miles per day, stopping only for rest and meals. Unfortunately, his cancer returned, this time in his lungs, and he had to stop running before he reached his goal of running across Canada. However, he far exceeded his goal of raising 1 million dollars, by raising 24 million dollars for cancer research. He died 9 months later. For the past nineteen years, The Terry Fox Run, sponsored by Four Seasons Hotel, takes place all over the world and continues to raise millions of dollars for pediatric cancer research. Oncology research at CHOP is one of the beneficiaries of the money raised and Alex was asked to represent their cause. We will be walking, hopefully with some other people we know from this area. If anyone is interested in walking with us or sponsoring us in the walk, please let me know as soon as possible. You can probably tell that I have been very inspired by Terry Fox and his determination to do something no one would have thought possible.

I will sign off now. Thanks for checking in on us, we appreciate it!

Liz

Saturday, August 31, 2002 at 08:22 AM (CDT)

Hi everybody,

We have been enjoying the last weeks of summer. Here are some of the "highlights"...

First of all, great news once again about Alex's latest test results. Her VMA/HVA values (the numbers that give us an idea of the amount of tumor activity) are down even more. Her latest test, taken last week, indicates that her values are in the NORMAL range! This means that for her age and weight, these values are in the range of what would be expected for a child without neuroblastoma. What does this mean? Well, obviously she is doing quite well, and most importantly, she is feeling well. She will receive another round of the same chemo next week and we will reevaluate next month. She is due for a full set of scans and biopsies sometime in the next couple of months, and that will give us more information about what is happening with her disease. When Dr. Maris gave us the test results yesterday he used the same word we have been using for years to describe Alex - "amazing"!

The other big news, is that Alex's Lemonade Stand is now officially "open for business". We have set up Alex's Lemonade Stand as a component fund of The Philadelphia Foundation. The Philadelphia Foundation is a non-profit community foundation whose goal is to encourage philanthropy. We have set up a donor advised fund which will allow donations made to Alex's Lemonade Stand to be tax deductible. Donations can be sent directly to their office, they deposit them in Alex's fund and take care of all of the paperwork, tax returns, etc. We can request that they make a donation for a certain amount to the causes of Alex's choice and they send out a check. It is that easy! We went to their offices on Monday and they had Alex (and me)sign the fund agreement (but they let her keep the pen). They have a website and have already put Alex's fund on the front page of it. I will add the link below. Special thanks to my sister Erin, the non-profit guru, who told me about community foundations and how they work. Also, our friend Mike Caron has offered to set up a webpage for her fund, it will be called www.Alexslemonade.com, I will let you know when that is up and running.

Also, she had her interview with Jordan Hyman from Sports Illustrated. He came down from NYC for the day and did a nice job of making Alex feel comfortable talking and being herself. They are going to run the story in a special advertising section called The Power of Caring, sponsored by CIGNA. It is set to run in the 11/11 issue of Time, the 11/4 issue of SI, the November issue of Parenting and the 11/11 issue of People. They are also going to include information about her new fund and where to send donations.
We are hoping she will receive many more donations so she can continue to support Toireasa's Dream and other causes. I will let you know if the dates for publication change.

The first official event for Alex's Lemonade Stand is going to take place on September 17th. A manager from Houlihans in King of Prussia contacted me last week asking if it would be o.k. if they held a special dinner to raise money for her stand! He saw the article in the paper and a woman who works with him lives 2 houses away from us, so they thought they would like to do something to help her out. They are donating 15% of dinner sales on September 17th to Alex's Lemonade Stand. We, of course, will be going to the dinner, with Alex as the "guest of honor". I am still overwhelmed when someone offers to do something to help without even being asked. Houlihans is my new favorite restaurant (sorry Bertucci's).

We are all enjoying the last few days of summer. Patrick and Alex start school on Tuesday. Patrick is going into 3rd grade, with his best friend Stefan in the same class. Alex is starting first grade but will only go for an hour each morning next week because of her chemo schedule. She hopes to go at least for a little while each day. Eddie is back to preschool on Wednesday, he will go 3 days a week this year and then off to kindergarten next year. He celebrated his 4th birthday yesterday at, where else, Chuck E Cheese's. I will post a picture of him and Chuck E.

Please continue to sign the guestbook, we look forward to reading your notes.

Thanks for checking in on us,
Liz

Saturday, August 10, 2002 at 08:49 AM (CDT)

Once again, I apologize for not updating sooner. We have had a very busy summer and I am having trouble keeping up with everything.

First of all, Alex is doing very well. She has continued to receive Topo/Cyclo treatments every month or so. She is probably going to switch to a different type of experimental treatment sometime in the next couple of months, in the hopes of continuing to see more regression of the cancer. At that time she will go through all of her scans and biopsies again and we will know exactly how well she is doing. She just finished chemo on Thursday so I am sure she is heading into a week of low counts, fever, etc. but right now she is still feeling fine.

Our big family news is that I am expecting! I am due sometime in the middle of March. I am still in my first trimester (probably about 8 or 9 weeks). I am having an ultrasound on Monday to determine due date, so I will have a better idea exactly how far along I am after that. We are all very excited, especially Alex.

Alex's grand total for her lemonade sales is now over $17,000! All of this money has been donated to Toireasa's Dream, a fund dedicated to Neuroblastoma research at CHOP.You can read more about Toireasa's Dream by clicking on the link below.

The other "big news" is that Alex is going to be featured in a special advertising section of Sports Illustrated, Time, and People Magazine. CIGNA sponsors an article called "Power of Caring" which has always featured sports celebrities and entertainers who do a lot of work with their own or other charities. Alex will be their first story about a "local hero" -- it will reach over 100 million readers! The article will talk about the various causes that she has supported and her lemonade stands. We are in the process of starting a charity in her name, probably called "Alex's Lemonade Stand", so that the donations sent from the article will go directly to her charity. She, in turn, will continue to pass it along to Toireasa's Dream and other charities. She has expressed an interest in donating money to cancer research for other types of children's cancers, because, as she put it, "Kids with other types of tumors want them to go away too." We are very excited about this and she is also. I will let you know the details of her charity when I know them myself.

We had a great vacation at Jay's parents house in Onset,MA and my parents house in Rhode Island. We managed to take a week long vacation without one fever, hospital visit, etc. We all had a great time and hopefully will be able to do it again next year.

I promise to update sometime in the next couple of weeks.
Thanks for checking in,
Liz

Sunday, July 14, 2002 at 07:31 PM (CDT)

Hello to everyone,
It has been a while since I updated so here goes…

First of all, I have to say THANK YOU! For the incredible show of support for Alex’s Lemonade Stand. The day was a huge success – her total is now over $13,000 and counting! All of this money will go to Toireasa’s Dream through the Children’s Hospital Foundation. For more information on Toireasa’s Dream, click on the link below. We were busy from about 9 am until 5 pm that day and continue to receive cards with donations. I am always overwhelmed by how generous and supportive people are when they hear about Alex’s cause. The day was not only a fundraising success, but a wonderful memory and reminder of how many people care about Alex and our family. We honestly cannot express how grateful we are to all who donated, helped out, sent letters, and supported Alex’s cause in any way. She is already making plans for next year and she says it will “be even bigger”. I am not doubting her!

Also, I should let you all know that Alex is feeling well. The day after the lemonade stand we left for Rhode Island to visit Grammy and Grampy with a planned overnight stay in Connecticut on the way. We stayed over at Pam and Aaron’s house on Sunday night and Alex was up all night with a bellyache. I brought her into Connecticut Children’s Medical Center on Monday to have them take a look at her before we left for Rhode Island. Well, they took one look at her “bug bites” on her head and said she had chicken pox. She ended up staying over at her Connecticut hospital for 2 nights to receive IV medication to prevent complications from chicken pox. Overall, it was a very mild case and she is back to her old self now. She received 4 days of chemotherapy this week (more of the same treatment that she has been receiving) and is feeling fine so far.

The good news for the week is that her VMA/HVA values, which indicate how much tumor activity there is in her body, were stable since her last check in May. At this point, her values are at the lowest they have been since she was diagnosed 5 ½ years ago! This is very good news and we are hoping to see those numbers continue to decline over the next few months.

We have been taking advantage of Alex’s good health and enjoying the beautiful weather we have been having lately. We took the kids (including dog) camping for a night over the 4th of July weekend in the Poconos. We had a great time and will definitely be trying it again sometime soon. We are planning a vacation in Cape Cod with Jay’s family the last week of July with a stop over in Rhode Island on the way back. Hopefully, this will work out since Alex will be devasted if she misses another family vacation.

I will update soon and I will also upload some new pictures sometime this week. We are having problems with our computer so I can’t make any promises but keep checking back.

Thanks again for all of the support!
Liz

Sunday, June 23, 2002 at 09:39 AM (CDT)

Alex's Lemonade stand was a huge success. Thanks to all the people who donated their time and money. The total amount raised for Children's Hospital of Philadelphia (CHOP) Cancer Research so far is over $10,250 and still growing.

There was a huge turnout for the Lemonade Stand. All of the Philly TV stations were present and did stories on the stand. The GM from the Philadelphia 76ers presented a check.

It was Great!

Monday, June 17, 2002 at 09:53 PM (CDT)

Hello again,

I can't seem to keep up with all of the happenings lately but I am doing my best.

First of all, Alex has already received an overwhelming amount of donations for her lemonade sale. Her total so far is over $2200 with the sale still 5 days away. Many of you have sent donations and we sincerely appreciate your support. We are so lucky to know so many caring and generous people.

Most of the people reading this live too far to make it to the lemonade stand so I feel that I should mention how much support we have received from the community here.
First of all, I have a great group of friends here -- Ligia, Alicia, Eva, and Mary -- who have worked so hard to make the stand a success. They are responsible for all of the publicity Alex has received. They also have printed hundreds of flyers and posted them all over town. In addition, they have solicited donations from a number of local businesses, including Genaurdi's supermarkets, Rita's Water Ice, Wawa Stores, So Fun clothing stores, Krispy Kreme donuts, and Kinkos. They have been so dedicated to Alex and so supportive of me as well. In addition, there have been a number of individuals who have offered to help in anyway they can. The school principal, Gail Apfel, was responsible for making sure all of the students received a flyer about the stand. Patrick's former teacher, Mrs. Hegarty, bought hundreds of napkins and had her students hand stamp them with yellow paint. Arlene Leib-Kurtz, another 2nd grade parent, has passed along a very touching letter about Alex to a number of media contacts (she is in PR). In short, we have had an amazing show of support from the Penn Wynne community. I think we will have a good turnout on Saturday -- let's hope the weather cooperates!
The Philadelphia Inquirer printed an article about Alex and her lemonade stand. We have received a tremendous response from the article -- over $1000 has arrived in the mail over the past week. The letters and cards are so supportive and wonderful to read. A 10 year old girl in New Jersey was so touched by the story that she held her own lemonade stand on Father's Day and is sending the money to Alex. I have provided a link to the article and photo below, just click on the Inquirer link and it should bring you straight to the article.

Over the weekend we had a nice visit from Aunt Margaret. We all enjoyed her visit, which included lots of playing with the kids, 2-on-1 basketball against Jay, and shopping.

Sunday we celebrated Father's Day in style at The Phillies game. Mike Lieberthal, a catcher for the Phillies, donates tickets to the games to the Oncology clinic. It was a beautiful day and we enjoyed the game, even though they lost to Baltimore.

Tomorrow is the last day of school so the kids are very excited (as am I). We are looking forward to the summer and hopefully getting to visit with family and friends in Connecticut.

I will update again soon.

Thanks again for all of your support,
Love, Liz

P.S. I have posted a couple of new pictures.



INFORMATION ON ALEX'S LEMONADE STAND
Alex is having her 3rd lemonade stand to raise money for cancer research. She has decided to donate the money from this sale to a fund that has special meaning to us. In April, a friend of ours named Toireasa Barry passed away. She was 5 years old, and like Alex, had been fighting Neuroblastoma for quite some time. She was an extremely sweet and courageous girl and we were so lucky to have known her. Her mother has started an endowed fund through UPenn and affiliated with CHOP that is dedicated to Neuroblastoma Research at CHOP. The money we give to the fund will help to establish an ongoing source of funding for neuroblastoma research. Dr. Maris, Alex's doctor, was also Toireasa's doctor, and he is directing the fund. I understand that the fund already has received considerable contributions and we are hoping that Alex will be able to make a nice contribution of her own. She is really proud to be honoring Toireasa in this way, and I am very proud of her too. For those of you who would like to send a donation, the check should be made out to
CHOP/Toireasa's Dream
Send to: Alex Scott
267 Henley Road
Wynnewood, PA 19096.

If you would like more information on "Toireasa's Dream" check out the link below.
Thanks for your support!

Sunday, June 09, 2002 at 10:04 AM (CDT)

Hello to everyone,

We had a good week here, especially since this is the week that Alex usually ends up in the hospital with a fever. She has made it through this week (so far) without a fever. She received platelets on Wednesday and red blood on Thursday, and has had no other problems. She is heading into at least 2 weeks off, with visits for counts and the requisite platelet transfusions.

This week was pretty busy due to end of school activities. On Friday Alex and I attended the Penn Wynne School awards assembly. Alex and Matthew Ganon, another patient at CHOP and student at Penn Wynne, presented a check for $6000 to CHOP for oncology research. This is the most money the school walk-a-thon has ever raised and we are very grateful for this show of support. Special thanks to those who sponsored Patrick, especially Kerri, Grandma, and Ruslan and all of The Java Joint customers, who together donated $300 towards Patrick's pledges.

Also this week, Alex participated in the Kindergarten Science Fair at Penn Wynne. Her project was called "My Heartrate". She charted changes in her heartrate during and after various daily activities. She did a great job on it and, of course, she insisted on doing almost all of it herself. I will post a picture of her with her project in the photo album.

The big news this week is that The Philadelphia Inquirer article about Alex and her lemonade stand was published! We thought it was going to be in next Sunday's paper, so we were quite surprised to see her big face in full color. I have provided a link to the article and photo below, just click on the Inquirer link and it should bring you straight to the article.

Thanks to all of you for your very generous donations to Alex's lemonade stand. She has now collected $575 dollars. There are also going to be 4 other lemonade stands on the same day in various places, with all of the money going towards Alex's fundraising. Once again, for those of you who do not know, Alex is having her 3rd lemonade stand to raise money for cancer research. She has decided to donate the money from this sale to a fund that has special meaning to us. In April, a friend of ours named Toireasa Barry passed away. She was 5 years old, and like Alex, had been fighting Neuroblastoma for quite some time. She was an extremely sweet and courageous girl and we were so lucky to have known her. Her mother has started an endowed fund through UPenn and affiliated with CHOP that is dedicated to Neuroblastoma Research at CHOP. The money we give to the fund will help to establish an ongoing source of funding for neuroblastoma research. Dr. Maris, Alex's doctor, was also Toireasa's doctor, and he is directing the fund. I understand that the fund already has received considerable contributions and we are hoping that Alex will be able to make a nice contribution of her own. She is really proud to be honoring Toireasa in this way, and I am very proud of her too. For those of you who would like to send a donation, the check should be made out to
CHOP/Toireasa's Dream
Send to: Alex Scott
267 Henley Road
Wynnewood, PA 19096.

If you would like more information on "Toireasa's Dream" check out the link below.

That is all for now. I will update again next week.

Thanks for all of your support,
Liz

Sunday, June 02, 2002 at 08:52 AM (CDT)

Hi everyone,

Alex just completed another week of chemo with no problems at all. She is handling the treatments really well but her bloodcounts are still getting hit hard and taking a long time to recover. This round was only 4 days due to Memorial Day so hopefully her counts will "bounce back" a little faster. Sometime in the next few days her counts will hit bottom and she is likely to end up in the hospital for a day or so, but we will see. Other than that, she is doing very well and is very active, which usually is a good sign that her cancer is not giving her problems. She will have another VMA/HVA urinalysis this month and I will be sure to post the results.

We have been enjoying the beautiful weekend weather. Last weekend, Meg MacDonald (Meg Deneen)and her family came to visit for a few hours on their way back to Connecticut. We had pizza and a visit from the ice cream truck. We all had a great time and we hope to see them again soon. I just wish I had remembered to take pictures! We also had an overnight visit from Joe Musco which is always fun. He helped Jay build a new stone walkway in front of the house and we went mini-golfing and to the batting cages. Overall, it was an excellent Memorial Day weekend and a great way to head into a chemo week.

Yesterday, we went swimming at our friend Carly Hillman's house. We met Carly and her mother, Jocelyn, at our Friday clinic visits to CHOP. Carly is 9 years old and is being treated for Leukemia (ALL). She and Alex became fast friends, as did Jocelyn and I. We haven't been swimming since Alex started her chemo last summer and the kids were very excited. They all have improved in their swimming abilities (which means they are not all clinging to me in fear) so they may learn to swim yet! It was so nice to see Carly and Alex both looking so good and doing well. I have posted a new picture of the kids and Carly.

We have been having a lot of fun with our puppy, Shammy. She is a part of our family already and we all love her. Eddie said he loves her so much that he is going to marry her when he grows up!

Alex's lemonade sale has already brought in $100 in donations and it is 3 weeks away! For those of you who do not know, she has decided to donate the money to a fund that has special meaning to us. Last month a friend of ours named Toireasa Barry passed away. She was 5 years old, and like Alex, had been fighting Neuroblastoma for quite some time. Her mother has started an endowed fund through UPenn and affiliated with CHOP that is dedicated to Neuroblastoma Research at CHOP. The money we give to the fund will help to establish an ongoing source of funding for neuroblastoma research. Dr. Maris, Alex's doctor, was also Toireasa's doctor, and he is directing the fund. I understand that the fund already has received considerable contributions and we are hoping that Alex will be able to make a nice contribution of her own. She is really proud to be honoring Toireasa in this way, and I am very proud of her too. For those of you who would like to send a donation, the check should be made out to
CHOP/Toireasa's Dream
Send to: Alex Scott
267 Henley Road
Wynnewood, PA 19096.

If you would like more information on "Toireasa's Dream" check out the link below.

Thanks to all of you who have already donated. We are very grateful to know so many generous people.

Love, Liz

Saturday, May 18, 2002 at 06:54 AM (CDT)

Hello again,

This is just a short note to share some good news...

Alex receives monthly "tests" for tumor activity, which is indicated by elevated levels of HVA/VMA in her urine. The latest results were amazing -- one of the levels was slightly above normal, and the other was in the normal range! When she started this chemotherapy last August, her levels were over 100, they have continued to come down after each cycle of chemo, and they are now in the low to mid 20's. The high range of "normal" for a child her age is the high teens to mid twenties. We are obviously very happy about this news and hope to see those numbers go even lower over the next couple of months.

Also,this week, we received a call from Lucia Herndon, who writes a weekly column for the Philadelphia Inquirer. She is going to feature Alex and her lemonade stand in the June 16th edition of the paper. Alex is having another lemonade stand on Saturday, June 22. This will make her lemonade stand a huge success. She has decided to donate the money to a fund that has special meaning to us. A few weeks ago a friend of ours named Toireasa Barry passed away. She was 5 years old, and like Alex, had been fighting Neuroblastoma for quite some time. Her family has started an endowed fund through UPenn and affiliated with CHOP that is dedicated to Neuroblastoma Research at CHOP. The money we give to the fund will help to establish an ongoing source of funding for neuroblastoma research. Dr. Maris, Alex's doctor, was also Toireasa's doctor, and he is directing the fund. I understand that the fund already has received considerable contributions and we are hoping that Alex will be able to make a nice contribution of her own. She is really proud to be honoring Toireasa in this way, and I am very proud of her too. For those of you who would like to send a donation, the check should be made out to
CHOP/Toireasa's Dream
Send to: Alex Scott
267 Henley Road
Wynnewood, PA 19096.

If you would like more information on "Toireasa's Dream" check out the link below.

I'll update soon,
Liz

Sunday, May 12, 2002 at 11:13 AM (CDT)

Hi everyone,
Happy Mother's Day to all the mothers who are reading this. I am using my "alone time" to update this journal, so I will try to be quick.

Alex is doing fine. She finished her latest cycle of chemo without too many problems. She did get her usual fever when her ANC hit zero, which indicates her ability to fight off infections. She felt awful and actually told the doctor that she wanted to stay over. It turns out, she told Jay later, that she wanted to watch cable TV. So we checked into "Club CHOP" for some pampering and R&R and left refreshed the next day. She has the next 2 weeks off, except for the usual clinic visits and platelet transfusions. She will get another round of this same chemo after Memorial Day. Dr. Maris has decided it is best continue on this chemo (Topotekan/Cyclo) since it has worked so well for her. He also talked to some other doctors about how well patients tolerate being on the topo/cyclo combination long term. He had some concern because she has received 10 cycles already and he usually only gives 6 cycles. However, one doctor confirmed that he has been treating a female neuroblastoma patient for 36 months with this same chemo. and she is doing fine. I was joking with Alex and I said she'll be 20 years old and I will be driving her in for chemo once a month. She yelled "no! Don't say that!" I thought she was mad that I was teasing her about getting chemo but then she yelled "I will be able to drive myself then!"

In between chemo and the hospital stay, Grammy and Grampy came to visit -- which was perfect timing. We went to a place nearby called Longwood Gardens. It is a 1000 acre garden comprised of outdoor gardens of all types and a huge greenhouse with room after room of different types of flowers, trees, and bushes. It really was amazing. The kids seemed to enjoy it and we will definitely go back again.

Last Sunday we picked up our puppy! She is doing really well and seems to be settled in already. We are all enjoying her so much. She gets a lot of attention and seems to be loving it here. She is sweet but also very playful. She has learned to sit when told and go into her crate pretty reliably when told. The housebreaking is taking a little longer but she'll get there. The first few days she was jumping on the kids a lot but she has already improved with that. She is of course, putting her mouth on everything, including fingers and toes. The kids are learning that she will stop usually if they either yelp "ow!" or say "no biting" and give her one of her dog toys to chew on. I think she will be a great dog for us. I will post a picture of her and Alex in the photo album.

Also this week we decided to go forward with our plans for an addition on the house. We are adding on a 4th bedroom, a mudroom, a bigger garage, and converting the existing garage into a family room and powder room. The contractor is drawing up the plans now and construction should begin sometime in June. This means that, hopefully, by the end of the summer we will have an actual room for our guests to sleep in. I hope any of you feel welcome here anytime.

Also, Alex is going to have another lemonade stand in June, I think. We have to work out the details and the date. We haven't figured out exactly how we will sell the lemonade over the internet but we are working on some ideas. I will let you know when it is happening and so forth.

I guess that is all of the news we have for now. Thanks for checking on us.
Love, Liz

Saturday, April 27, 2002 at 08:00 AM (CDT)

Hello again,

I guess it has been a while since I have updated so here goes...
Alex did end up in the hospital for a couple of days after I last updated the journal. She spiked a fever on Monday (the 15th) and we spent 2 nights at CHOP. She received the usual antibiotics and once her fever was long gone (24 hours), and her cultures were negative for infection, we were discharged. Other than a few visits for platelets, blood, etc., we have been staying away from the hospital since. Her counts took a little longer to recover this time but she is feeling well now. She even managed to go to school on Friday for the first time in over 2 months. She also went to karate twice this week with her brothers and loved it! In the usual Alex style, she informed me that "nobody better try to mess with us(meaning Patrick, Eddie, and herself) or they'll be sorry". Such confidence after 2 classes! I am posting a picture of them in their karate suits so be sure to check that out.

She will get her next (and possibly last) round of Topotekan/Cyclophosphamide starting on Monday. Once again, Dr. Maris is considering switching her to a different treatment for a little while to see if we can continue our success. The new drug would be a new oral chemo that she can take at home and does not affect her counts. His goal here is to continue to shrink the disease without having to spend so much time at the hospital. We will find out more later this month.

We are counting down the days now until we get our puppy. We have FINALLY decided on a name! The winner is Shamrock --suggested by Patrick. We are going to call her Shammy. In case you are interested, the final three names were Shamrock, Cassie, and Molly. We took a family vote and Shamrock received 4 votes to Cassie's 1 vote (yes, I was the only one who did not vote for Shamrock). This weekend we are going puppy shopping for food, toys, crate, etc. and we will probably bring Shammy home next Sunday.

Also, as far as a fundraiser goes, we are going to help Alex hold another lemonade sale. Penn Wynne school is going to donate their walk-a-thon money to OncologyResearch at CHOP,as I mentioned previously. In addition, Alex will hold another lemonade sale sometime this spring or early summer. A great group of "moms" has offered to help us out and we are working on ideas and press coverage. We really want to make this a huge success and I am sure it will be. I will let you all know about the details.

I guess this concludes our news for the past couple of weeks. Kind of boring, I know, but boring is what I strive for -- a nice normal, boring life!

Take care,
Liz

Saturday, April 13, 2002 at 07:44 AM (CDT)

Hello again,
Here is the latest and the greatest...
Alex's chemo went really well. She did not have headaches or nausea during her treatment. Her counts crashed this week, which is entirely expected. She received a platelet transfusion on Wednesday and a red blood transfusion on Thursday. Her ANC, which is an indicator of how well she can fight off infections, etc., was 80 on Thursday and I am guessing probably 0 (or close to it) today. We have been nursing a low grade fever since last evening and probably will be going into the Emergency Room for admission sometime today. The rule is if her fever hits 101.5 she will automatically be admitted for at least an overnight stay for fluids, antibiotics, etc.
(They also have some kind of rule about having 3 consecutive readings over 100.5 but we tend to conveniently forget that one as long as she is feeling o.k.) At any rate, she hit 101 this morning but is back down to normal now. If she goes up to 101 again today, we will be spending the day in the E.R. and probably the night in the hospital. Either way, she really is doing fine and she typically gets these fevers when her ANC hits bottom.

We are not sure what we will be doing for her next treatment, but probably more of the same chemo. I will certainly update as we have more info.

Other than our frequent visits to the onco. clinic, there is not too much going on here. Patrick started little league last week with Jay as one of his coaches. He was very excited because he fielded a ground ball and tagged 2nd base to make the first out of the game! He and Eddie also started karate a couple of weeks ago and they both really like it so far. Alex has decided now that instead of ballet she would like to take karate so I may be signing her up this week. I will be sure to post a picture of them all in their karate outfits (as soon as I take one).

I am still planning on attempting to run the Philadelphia Marathon in November to raise money for Neuroblastoma research. However, a group of friends here has decided to join forces with me and they are trying to talk me into putting my time and fundraising efforts elsewhere. They have some great ideas to raise money for neuroblastoma and we are meeting here on Monday morning. I will let you all know what we decide to do. I know that the elementary school here does an annual walk for a cause and this year they have decided to raise money for oncology research at CHOP. All of the children will get sponsors and walk laps around the school. They are planning on donating the money in honor of Alex and another 6 year old boy, Matthew, who happens to live on our street, who is battling Leukemia and also goes to CHOP. This will be a great fundraiser and they hope to raise several thousand dollars! Research and experimental trials have been so crucial in Alex's fight with neuroblastomaa and they hold all of our hope for her future as well. I can't tell you how happy I am that the Home School Association thought of Alex and Matthew and all of the kids who benefit from cancer research.
Bottom line, expect me to be calling on anyone who can spare a dime (or just their time) to help us in our fundraising efforts.

And last, but certainly not least, we are very excited about our newest family member, Grace Flynn (sorry, I do not know the middle name yet). Congratulations Tom and Chris, and big brothers and sisters Matt, Megan, Brian and Helen! That brings my kid's grand total to 23 cousins -- I am sure a few of you can help us reach 25!

Thanks for checking in.
Love, Liz

Monday, April 01, 2002 at 11:11 PM (CST)

Hello Everyone!
We have a few things to catch up on this week...
The bad news is that one of Alex's biopsies did show cancer cells. The good news is that the other one did not. Although this is disappointing, it is still an improvement over 6 months ago(when both showed cancer cells), so do not despair! She started another round of Topo/Cyclo chemotherapy today and did fine. This is the same chemo that she has been receiving for the past 8 months so we are hopeful that it will continue to do the job. I am optimistic that the rest of this week will go well -- she will go in for chemo. everyday. I thought she might complain about starting up again but she was a very happy patient today -- she is truly amazing!

We had a great visit to Connecticut and enjoyed seeing so many of you. I miss all of you so much. Unfortunately, Eddie ended up getting sick on our last day of visiting, so we ended up missing the West Hartford people (you know who you are). We will be sure to see all of you the next time, before anyone throws up!

We finished off our week with a visit to our puppy. Sue was nice enough to let us come see the puppies and visit for a little while. The kids held just about every puppy there and were really gentle with them. The puppies were, of course, very cute and sweet. We are very excited about bringing ours home in May. Check the photo page for a photo of one of the female pups.

The kids got up early on Easter to find that the Easter bunny did remember to hide some eggs and other goodies for them. We had a very relaxing and quiet day. I cooked a ham and related food items,bread, apple pie, etc. (I know some of you are shocked). I have to give credit to Jay for cooking some of the best mashed potatoes this house has ever produced. Alex is giving credit to Grandma for giving Jay the "mashed potato" gene.

Well, that concludes my news for the week. I will be sure to write more soon.
Thanks to all of you for checking in on us.
Don't be shy -- sign that guestbook!
Take care,
Liz

Friday, March 22, 2002 at 11:21 AM (CST)

Hello again,
We are on a roll here! Alex's aspiration and biopsy went very well yesterday. She was very nervous beforehand but did very well. She was only under anesthesia for about 20 minutes ( the aspiration and biopsy only take about 10 minutes ). She woke up, sat up, and immediately asked for her basket of candy they had given her before the procedure. Also, so far, she has had no pain at the site. We are especially happy to see this, since she had so much pain following her last aspiration in July.

Our exciting news for this week is that the preliminary results show normal marrow! Her last aspiration showed lots of cancer cells so this is the best result we could have hoped for. The biopsy result will not be back until next week. There is a chance that the sample taken through aspiration could look normal and the biopsy may show cancer cells, but we are encouraged so far.

The other good news, which is consistent with good, clean marrow, is that her counts continue to improve. She did not receive any blood products this week again!

Dr. Maris is waiting to hear about a new experimental drug that may be available within the next week or so. He is trying to decide if he should leave her on the Topo/Cyclo or switch her to something else while it is available and her counts are recovered. We will talk with him more next week. Either way, she will receive some type of treatment, starting the Monday after Easter.

We left the clinic today with no plans of returning until next Friday. I can't tell you the last time that happened. So, the kids and I are heading to Connecticut this weekend for a nice 4 day stay. We hope to be seeing many of you in the next week.
Take care,
Liz
P.S. Thanks for signing the guestbook, we love hearing from so many different people. No final decision on the dog name yet but we are leaning towards Cassie. We are going to visit her in a few weeks and will probably decide for sure at that point.

Sunday, March 17, 2002 at 07:58 AM (CST)

Hello again,
We have had another great week here. Alex is feeling remarkably well and it is so good to see her so happy. She did not receive any type of blood product this entire week! For those of you who do not know, due to all of the treatment she has received in combination with the fact that her bone marrow had a lot of neuroblastoma in it, she has been receiving 1 - 3 transfusions a week for the past 2 years. This week, not only did she not need platelets or blood, but her counts actually went up. Her platelet count is still nowhere close to normal but it is a step in the right direction. We are hoping this is a sign that the chemo. has cleaned her marrow up a bit. She is scheduled for a bone marrow aspiration and biopsy on Thursday and we will have some results Friday. I will be sure to update as soon as I can.

Also, this week, our puppy was born! We weren't sure if it was going to work out, because there were 9 males and 3 females in the litter and we were #5 on the list for a female. However, the breeder, Sue Shaw, called one of the families and they agreed to take a male instead. Sue was also supposed to keep one of her female pups but she has generously offered to let us have it instead. Thank you,Sue! We are all very excited to go visit her in about 4 weeks. We won't be able to bring the puppy home until some time in May but it will be worth the wait.

We concluded the week with a visit from Aunt Margaret, which is always greatly anticipated. We took advantage of the beautiful spring weather on Saturday and drove down to the Jersey shore for the day.

Well, that all for now. I will be sure to update later in the week.

Alex says hello and thanks for all of the great name suggestions. She is enjoying your messages in the guestbook.
Also, the litter has an Irish theme, so any Irish name suggestions would be helpful. We haven't picked a name yet, so keep them coming.
Take care,
Liz

Friday, March 08, 2002 at 02:22 PM (CST)

Hello to all!

I am thrilled to report that we had some good news today about Alex's CTScan. The most active tumor area, in her abdomen, appears to be reduced by about 50%. Also, her neck area appears to be clear of tumor. At this point, reducing the tumor at all is considered a success and this amount of reduction is amazing. She is going to get another 2 weeks off before her next treatment. In that time she will have a bone marrow aspiration and biopsy to see how much neuroblastoma she has left in her marrow. She is probably going to continue on the same chemo. she has been receiving since it appears to be working.

Overall, she had a decent week. She received a blood transfusion today -- she knows herself so well that she actually asked if she could go in for blood because she "wanted more energy". She went the week without needing platelets but most likely will need them on Tuesday. Other than that, a "normal" week.
Her fantastic teacher, Kay, has been visiting her everyday and Alex is breezing through kindergarten. She is up to almost 8 hours of 1-on-1 instruction with Kay and seems to be enjoying it. For now, she has decided that going to school is just "too tiring" so we will continue to have Kay home school for a while. The school principal and district have been most generous in making sure that Alex receives as much instruction (and TLC) as she will allow them to give her.

Thanks to all of you for checking in. We all enjoy reading the guestbook at least twice daily. The name suggestions have been great and Alex is writing them all in her notebook. Special thanks to Aunt Pam for suggesting Princess Poofy Pooferpooper, Alex has moved it to the top her list but I have a feeling it is going to get vetoed by Jay and Patrick. It has been particularly enjoyable for Jay and me to hear from some of you Java Joint people. It is nice to know that you are still thinking about Alex and our family after all of this time.

Once again, thanks to all for checking in,
Liz

Friday, March 01, 2002 at 06:47 PM (CST)

Hello everyone,
Just a quick update. We did get a preliminary report on Alex's MIBG scan. Basically, they noted significant improvement in most areas (yeah!) but one area showed "increased uptake" which might indicate increased tumor activity in that area. Please keep in mind that this is a preliminary report and we do not have any details or a final reading. Her oncologist, Dr. Maris, will be back on Monday and he will look at the films himself and give us more details. She also has a CTScan on Tuesday which will give us more information. Overall, we are happy with the preliminary report but are anxious to hear the final analysis and recommendation. At any rate, she is feeling good and had a pretty good week for counts (just received platelets today). We hope her counts continue to improve over the next week, since this will increase the number of studies for which she is eligible.

I will be sure to update the journal as soon as we have more complete information. Thanks for checking in and have a great weekend!
Liz

Sunday, February 24, 2002 at 09:10 AM (CST)

Hello to all,
We have had a great week thanks to our visitors -- Jack, Lisa, and cousins Katie and Bailey. They arrived Wednesday and stayed here for 2 nights. We then took a "mini-vacation" with them and stayed the weekend at the Philadelphia Marriot downtown. I think everyone had a fantastic time. Alex loved having girls to hang out with -- they put make-up on, did their nails, played Barbies, and did a lot of holding hands (all things she has a hard time convincing her brothers to do). We went to a couple of museums, went swimming, and realized how much we miss seeing them!

Alex is feeling pretty good. She made it through the week with only 1 platelet transfusion and a few minor headaches. We have decided to watch the headaches a little longer but I sense that a MRI is looming in the not too distant future. We have a big week ahead of us as she is scheduled for a MIBG scan on Wednesday. This full body scan will give us a pretty good idea of how active and where her cancer is right now. We will probably get preliminary results by the end of the week. I will update you all as soon as we hear something. Her CT scan is not for another week with other tests likely to follow.

Once we have a better picture of her disease, we will decide which treatment option is the best. So, as of right now, she is not scheduled for any treatment in the next few weeks. Yippee!

Thanks to all of you for the great response to our website. Alex is really enjoying the journal entries and checks for new puppy name suggestions every few hours. Keep them coming!

A note from Alex: Hi, everyone. Good morning. Thanks for signing the page. I bought a new polaroid camera with my very own money. It cost me $9 on EBay. I want to be a photographer. Goodbye. ALEX

P.S. We have posted a new photo of the gang at the museum.

Monday February 18, 2002 7:36 PM CST

Hey guys! Alex is taking name suggestions for her new puppy (hopefully coming soon). She is compiling a list of possibilities and would love some help. The puppy will probably be a girl, black or brown, Curly Coated Retriever. You can email names to us or post them in the guestbook.
Thanks!
Liz
P.S. We also uploaded some photos. You'll have to bear with me while I work on getting the size right and getting rid of the red eyes.

Sunday February 17, 2002 10:49 PM CST

I hope to update this web page regularly as we have news to share about Alex. This will be a busy month for my updates since she is due for all of her scans -- CT Scan, bone scans, MIBG scans, and Bone marrow biopsies in about 2 weeks. If all goes reasonably well, we should be deciding the next phase of her treatment. I will be sure to update the page with the results from her scans.

She has just finished her last dose of the Topo./Cyclo. chemotherapies that she has been receiving for about 7 months. Overall, she is doing pretty well. She had a rough couple of weeks due to migraine-like headaches but seems to be improving daily. If the headaches continue this week she will get a MRI to rule out any "strange happenings" in her brain. For those of you who don't know, she already had a CTScan of her head to check for cranial pressure due to neuroblastoma on her brain and that showed a perfectly normal brain. (I guess she takes after me after all). Anyway, we are hoping that she will continue to feel better this week and the MRI won't be needed.

I will keep you updated, so please check back from time to time.
Take care and thanks for checking in,
Liz

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