Updated race information!

Hi everybody!

Kristin, the race director, sent out this information via the Active email option, however we don't think everybody got the email. So, we're posting this information here as well, so hopefully everybody will get it.

We are so excited about the awesome turn-out and we can't wait until Friday! See you there!!

Love,
Sarah

Early Packet Pick-up:
(We will take late registrations during these times too with an entry fee of $25.)

Wednesday, July 2, 2008, 6-8 p.m.
Dairy Queen
33720 Walker Rd
Avon Lake, OH 44012

Thursday, July 3, 2008, 12-2 p.m.
Swingos Grand Tavern
32858 Walker Rd
Avon Lake, OH 44012

If you are unable to pick up your race materials early, pre-registration check-in will be from 8-8:45 a.m. on July 4, 2008. We will also be taking race day registrations during that time, for an entry fee of $25.

Parking:

If you live in the surrounding neighborhoods, we encourage you to save gas money and walk or ride your bike over to the park. There are approximately 200 parking spaces for use at Walker Road Park. At 8:45 a.m. or when the Walker Road Park lot is full (whichever come first), the lot will be closed. Holy Spirit Catholic Church (410 Lear Rd, Avon Lake, OH 44012) has graciously allowed us to use their parking lot. Avon Lake City Schools has donated a bus and driver to shuttle racers to and from Walker Road Park. The shuttle will run from Holy Spirit to Walker Road Park from 7:30 a.m. until 12:15 p.m. The bus will not run from 9-10 a.m.

Kids Activities:

Just a friendly reminder that all children participating in the activities after the race must make a donation and have a waiver signed. If the child is registered for the race, the wristband is included, but we still need a signed waiver. We have many exciting activities planned: bounce house, animals from the Lake Erie Nature and Science Center and Columbus Zoo, face painting, sand box, cotton candy and snow cones, just to name a few! Hot dogs and drinks will be for sale for a small fee.

Door Prizes:

Carefully check out your goodie bags to see if it contains a winning door prize postcard! All prizes will be distributed on race day. We will be giving away some of the following items:

2-month Curves membership, Cleveland Browns gift package, gift certificates to: Winking Lizard, Playground World, First Watch, Copper Cup, Ironwood Cafe, El Metate, Rush Inn, and Absolute Dance, overnight stays at: Holiday Inn Select City Centre, Sheraton Suites Cuyahoga Falls and Crown Plaza Cleveland City Centre, Cleveland Indians tickets, a NASCAR lunchbox with Stewarts Electronics gift certificate, a spa package at Brown Aveda Institute, Agave gift card, 1-year subscription to Travel & Leisure and Food & Wine, Cleveland Zoo tickets, Cleveland Orchestra tickets, Ipod, autographed Z Cavaliers jersey, Cherished Teddies figurine and watch set, Dr Seuss books and stuffed animals, a custom decorated cake from Crazy Cakes and even more!

Hotel deadlines

Hi everybody!!

This is just a reminder that the hotel room blocks that we have set aside will be released this week. So, if you are planning on participating in the events on July 4 and think you will want to stay overnight, please call one of the two hotels ASAP. The hotel information is on Sophie's website on the events page...scroll down towards the bottom for locations and phone numbers.

The two hotels are:
Courtyard Marriott (JULY 3 ONLY): rooms need to be booked by JUNE 19
Hampton Inn (JULY 3 and 4): rooms need to be booked by JUNE 18

There are of course other hotels in the area, but these are two of the closest that had some availability and were willing to give us a discounted rate.

Thanks so much to everyone that has registered and/or donated! For those of you that haven't...you still have time!! Please visit http://www.smilesforsophieforever.org/ to register and/or donate!!

Love,
Sarah

Happy Anniversary?

Well the 6th of each month is normally a day I dread. I start thinking about it the night before and continue to think about it throughout the day. I hate that time keeps on going without Sophie. I long to be able to go back in time and change the course of events. I know I can't so the 6th of the month is often even more heartbreaking than all the other days when my heart aches of missing Sophie, and I replay the events of the day she died, which was now 8 months ago.

Today is different. Today I miss her as much (if not more) than I always do. Today though, I long to give her a hug and say thanks...why? Because I am so excited to say that just today we received the letter from the IRS stating our foundation paperwork has been approved, and we are now an "official" non-profit foundation!!!!! I know Sophie had something to do with us receiving this news today. We are more than excited. So in a way, today is a "Happy Anniversary." We owe a HUGE thank you to Peter VanEuwen, the attorney (and friend) who provided us the necessary help and guidance to get the paperwork submitted correctly, and in a timely manner. We are so blessed and grateful to know Peter. Without him, we might very well still be spinning our wheels, knee-deep in confusing paperwork!

The planning for our race is coming along great! We realize we have less than a month until the big day, and there is still work to be done, but with all the effort from so very many willing volunteers, we know it is going to be awesome!

In addition to the race (run and walk) we will be having some kids activities to entertain the little ones after the race. Our "activities committee" has been working hard at planning some fun things for the kids to do, and here are just a few of them: animals from the nature center, face painting, balloon art, magic shows, cotton candy machines, snow cone machines, the Life Flight helicopter, a giant bounce house, birthday cupcakes, and more!! All of this will be available to children who make a donation to the foundation in exchange for a wristband. Parents must accompany their child(ren) so that a waiver can be signed before the activities begin. For those children who have registered for the walk, or run, the wristband will be provided as part of the registration fee, but the additional waiver will still need to be signed on race day.

Those who have pre-registered for the event (those received prior to June 27) will receive a goodie bag, t-shirt, birthday cake, water, fruit, bagels, and 2 entries to the live drawing which will be held after the race. So far we have some cool things to give away, and I will update the blog in the next few days, once all the items have been collected. Here is a sneak peak: gift certificates to local restaurants and stores, gift baskets, tickets to an Indians game and more!

Those who register between from June 28 and July 4 will pay an additional $5, and unfortunately, we cannot guarantee the perks of "pre-registration" to those who enter after June 27.

There will be a DJ to provide music, as well as live music from some talented local high school students. We also will have fresh squeezed lemonade and jumbo grilled hotdogs for sale, in addition to our "Smiles for Sophie Forever" car magnets and headbands.

Today, with the help of so many people dedicated to our cause, combined with our activegiving.com campaign, we have raised over $10,000 for the event. Our goal is $50,000 and to some, that seems crazy, but we set that goal with the motto "Shoot for the moon. If you miss, you will land among the stars." in mind. We still have time to raise additional funds, so if you feel called to do so, please visit http://www.active.com/donate/SmilesForSophie

In the works are some incentive prizes for individuals and/or teams who have achieved various fundraising goals.

Each member of a team, or individual who meets the following amounts, will be entered into a drawing for the prizes listed below. And they are pretty cool prizes! These are just some of the things we have so far, and more may be added as we receive them.

Fundraisers raising $2000.00 or more will be entered into each of the following drawings:

1. a Columbus Zoo family entertainment pack for 7 including a behind the scenes tour of the Jack Hannah Animal Promotions Complex valued over $1000.00
2. steak and lobster dinner for 8 prepared at your home by the chef from Delucas in the Park valued at $1000.00

Fundraisers raising at least $1000.00 will be entered into the following drawings:

1. 4 Indians club seat tickets valued at $440
2. a one night stay for two with breakfast at the Marriott Cleveland East

Fundraisers raising at least $750.00 will be entered into the following drawings:
1. Charles Scott Salon and spa $125 gift certificate

2. Little Gym of Avon Birthday party gift certificate valued at $225
3. I-Pod Nano with case

Fundraisers raising at least $500.00 will be entered into the following drawings:

1. an overnight stay for 2 with breakfast at the Cleveland Hampton Inn
2. one of 2 Sony mp3 players
3. one of 2 $100.00 Little Gym of Avon gift certificates
4. autographed Victor Martinez baseball

If you haven't set up an active giving fundraising page, you still have time, and your support will mean so much. If you need help creating, customizing, or updating your page, feel free to contact my sister Sarah at smiklaski@cox.net. She will be glad to help.

Our next planning meeting will be held at Swingos Grand Tavern in Avon Lake on Tuesday June 17, at 7:00. If you have ideas to share, all are welcome as we put all the final details into place.

If you are interested in helping the day of the event, please contact pkvaneuwen@oh.rr.com . We are in need of many volunteers, and would love your help. If you are volunteering, you can still participate in the event if you wish to do so.

More information will be coming soon regarding early packet pick-up.

Thank you to all of you who have continued to send thoughts and prayers our way. Please take a minute to pray for the families who are fighting the battle of pediatric brain cancer this very moment.

With your continued help, and support, we hope one day, the battle for these families will be a victorious one. We cannot wait to begin allocating the Smiles for Sophie Forever funds to families fighting this battle, as well as organizations like St. Jude who are working to find a cure for pediatric brain tumors.

Thank you again to all our supporters. God Bless you all.

How long is 7 and a half months?

I know today is not a "significant" date as far as milestones go for living without Sophie.  This month I had decided not to post on the 7 month anniversary just because I wanted to wait until it had been 7 and a half months, as a reminder of how short 7 and a half months is, and that Sophie only lived 7 and a half months after being diagnosed.  (Obviously it hasn't quite been 7.5 months just yet, but I wanted to post anyway.)  Many people say to me that they can't believe she's been gone 7 months already; like the time has gone so fast.  There are times when it seems that way to me.  But for the most part, I feel it, and remember it like yesterday. 

Think back to what you or your loved ones were doing on October 6, 2007.  If you, or your loved ones were given Sophie's diagnosis on a day in your "normal lives" of October 6, today you/they would be suffering like Sophie, and would be on your death bed paralyzed in every physical sense, and about to take your last breaths.  Most of us can't even remember what we were doing 7 and a half months ago.  But a DIPG diagnosis changes that.  You count every day. Not wanting to get to the 9-12 months past diagnosis knowing that the end may be near.  Then suddenly you take a turn for the worst, and then you are gone.  That is what DIPGs do, and that is why a cure needs to be found.  Everyday I remind myself that 4 years, 3 months, and 2 days is WAY too short of a life time.  My prayer is always that something good might come from Sophie's  pain and suffering.  Right now, we focus our efforts on the foundation, easing the burden on other families and raising money to search for the cure.

I want to say thank you to all of you who commented to my last post describing Sophie's last moments with us.  From all the comments and emails, I realized just how touched so many people were.  Many people have commented that it made them more aware, more appreciative, more dedicated to the cause.  When I write these posts, I do so with the goal of having something good come out of it.  I don't do it as therapy for me.  I don't do it so people we feel sorry for us.  I do it to educate the people about the disease that took Sophie's life, and to encourage people to listen to the calling to help try to save another child's life.  I thank those of you who show us your support by responding to the blog and encouraging us to continue to share the deep emotions that make this storm so real to the many of you who admittedly say you can't even begin to imagine living this nightmare.  And we also want to say thank you to those of you who have made positive comments about the new site.  Just the other day, a friend of mine, said she sometimes goes to the site just to listen to the song and look at the pictures of Sophie.  Again, we are honored that you take the time to comment.

Race planning is coming along.  Soon I hope to post all the details for the kids activities as well as some of the door prizes and fundraising incentives.  All of our committees have been working so hard to make this an unbelievable event; not just for the runners/walkers, but also for the children.  After all, it is in a sense a "birthday celebration" and I know Sophie would want the kids to have fun.  We have received many race registrations, but are still looking for so many more.  I wasn't surprised to see my Mom, Dad, sister and brother among the first to register.  They have been there to support me through thick and thin.  I was pleasantly surprised (and also very excited) to see the names of people who I haven't met registering.  And I have to say I was surprised that many of you who have told me you plan on participating haven't yet registered.  (You know who you are =0)  and it only take a few minutes.)  As Kristin and Katy's Team Fundraising page is entitled "DIPG - Don't Ignore, Please Give.  I encourage you to embrace that motto and give to the cause that could one day save a life.  

Magnets are still for sale on the site, for those of you who are interested in purchasing one for the cause.  If you live in near my Mom in Trenton, MI, or here in Avon Lake, near me you can now purchase them directly from one of us.  My sister is in the middle of a move to Washington D.C. so she has temporarily given us the supplies to manage while she gets settled.

I have to say that I have some sad news.  Little Ashley Boross lost her brain cancer battle this morning.  Everytime I hear of another child dying, my heart aches.  It aches for the parents left to grieve, and it aches for the life lost and what could have been.  Please remember Ashley and her family in your prayers.

I also have some heart warming news.  My good friend Jen has a daughter, Maria, who is 3 months older than Sophie.  This past month, her preschool - Red Bell - in Plymouth, Michigan held their second annual trike-a thon for St. Jude, and this year they decided to donate the money to St. Jude in Sophie's name.  We were touched, and honored.  The students raised $5360.00.  A friend of mine once told me that she read that it costs St. Jude 1.2 million dollars to run their facility for ONE day!  We know we were so blessed to receive the care for Sophie at St. Jude.  We thank the owner of the preschool, its staff and these children and their families for all their efforts, and hope they fully understand how every little bit helps a family at St. Jude with a child battling cancer. 

I spent last week up north at my parents cottage with Mom, Dad, sister Sarah, Baby Zach, and my little Sarah.  It was nice to get away, but strange being there as it brought back so many memories of the times we spent there with Sophie.  Sophie loved "grandpa's cottage"  and so it was hard to be there without her.  The week was a little rough, and then this Mother's Day was certainly a hard day for me.  Probably the hardest "holiday" we've had.  I could clearly remember every Mother's Day that I spent with Sophie, and couldn't get it out of my head that I couldn't give the little girl, who first called me Mom, a hug.  I do want to say thank you to those of you who thought of me on Mother's Day.  I read each and every card and email and thanked God for putting so many good people in my life.  My Mom bought me a rainbow/star garden spinner that I love, and Marc's sister Leslie made a contribution to St. Jude in my name and Marc's Mom, Susan Turner, in Seattle made a contribution to Smiles For Sophie Forever. Those were the best gifts.  So thank you to all of you who showed your love and support.  I truly appreciate it.

While my sister was here, I took advantage of her awesome painting skills, and I helped her paint my guest room a couple crazy bright colors and then I put the rainbow comforter I found on the bed.  I wanted to have a place that will always be "Sophie's Room".  I ordered some quotes to put on the walls.  These are the 3 I chose.  I think they are all so fitting and serve of the reminders we need every day.

"The work will wait while you show the child the rainbow, but the rainbow won't wait while you do the work."

"The soul would have no rainbow if the eyes had no tears."

"Somewhere over the rainbow, way up high, there's a land that I heard of once in a lullaby."

Every time I make a post, I never intend for it to be so long.  But once I start writing, I realize there are so many things I would like to share. Tonight I am too tired to even proof read, so please ignore my mistakes. I will leave you with this last story - it's a comment that we received on the blog.  I know many of you read through the comments, but for those of you that don't, I thought the shoes story, and the relation to all the "shoes" we will see on race day was worth posting for everyone to read.  It made me cry, as I related too well to the mother's sentiments. Pray for little Isabella.  

Marc and Emily,
I don't know any other way to get an email to you, but I wanted to share a story with you that a friend of mine shared in her blog. Monica Battle's 2 year old daughter, Isabella, has leukemia. They've been fighting since December 2007. I've kept up with Sophie's blog since the beginning and I'm keeping up with Isabella's. Monica shared a story in her latest that I think would resonate with you, especially Emily. I find that her observations and attention to detail match yours (you once talked about taking a walk and noticing a leaf or pinecone that Sophie would've liked or picked up, I remember that fine detail in your writing). And after you read this post I hope that you take a look at Sophie's shoes and thank the Lord that he blessed you with her, a Saint. She surely blessed my life here in Cincinnati, and I share her story whenever I can...perhaps even at your race in July everyone can look down at their (racing) shoes and see that by running they are contributing to such a wonderful cause, but most importantly to remember such a beautiful, beautiful girl.



"Isabella is sleeping and I am thinking…thinking…thinking…. I hope that you all are well and that your week is off to a good start. I found out today that we may be heading home as early as Wednesday this week. We go for a full body CAT scan on Wednesday morning and if her counts continue to rise we’ll be discharged. Isabella is still on three antibiotics and her regular anti fungal but she is feeling good. I’m not sure yet how much time we will have at home in between rounds, I’m hoping for another week. Thanks for the continued support for my family. It means so much to all of us.

Tonight I want to share a story with you.

Shoes
While shopping for a new pair of summer sandals for Isabella (she has outgrown her other ones since we’ve been here. Actually, she is growing like a weed), I over hear a woman talking about another child’s shoes. She mentions that she wished her kids could keep their shoes so clean. I politely smiled all the while silently thinking, get down on your knees and thank the Lord your children are able to get their shoes dirty. What I wouldn’t give for Isabella’s shoes to be filthy. Why? Because that would mean she could play like normal kids, she could get dirty and not worry about her counts, not worry about potential life-threatening bacteria … just play. Then I realized I needed to get down on my knees and thank the Lord. I know there are countless parents out there who would give anything to have their children’s shoes be “clean” because that would mean they are still here, instead they have been taken from this earth. Cancer changes everything. Even the way you look at shoes.

When you finish reading this take a moment and go look at your children's shoes and say a prayer of Thanksgiving for them. For "clean & white" shoes, filthy shoes, outgrown shoes, and to grow into shoes. Give thanks for your children's need for shoes.



Good Night All! Hold your loved ones tight!
Monica"


Love,
Sarah Regan
(Maria Holaday's past babysitter in Legend Hills)

God bless you all, and your need for shoes.

Race Registration Is Officially Open!

We are excited to announce that registration for the 1st Annual Smiles For Sophie Forever Walk/Run is open.  You can register online using the link (look for it under the "Upcoming Events" section) on Sophie's new site.  If you do register online using active, you will have the opportunity to become a fundraiser for this event; you can do this individually or you can form a team.  All you have to do is create a basic page, and email it to your friends and family explaining the event and why you are running, and then ask them to consider "sponsoring" you. We are currently in the process of forming incentives for top fundraisers.  We encourage you to consider this as a means to raise additional funds for our cause.  

If you prefer not to register online, you can mail in the registration form, that you can download and print directly from Sophie's site.  If you would prefer to have a form mailed to you, please contact pkvaneuwen@oh.rr.com.

We are so excited that the event is "now official" and can't wait to see the registrations rolling in!  We are asking you to tell anyone and everyone you think would be interested in running or walking to support our cause.

We are also excited to announce our first 2 corporate sponsors.  One is Key Bank and the other is Fairview Hospital.    We are so grateful for the support of our community.

Thanks a million to all of you who are helping to make this event a success.

New website coming!!!

Well pretty soon, this will not be the "home page" for Smiles For Sophie anymore.

Once the new website is up and running, I will continue to post to this blog, but you will now need to access the blog by going to the new site at smilesforsophieforever.org OR smilesforsophie.com (we will redirect you to the new site automatically). The blog will now just be used for my updates. You can read the updates by clicking on the "blog" tab on the new website. All the previous links, magnet purchases, pictures, etc will be on the new site as well.

To me this is a big step, and we are excited, but it is also bittersweet in many ways.

We want to thank those of you who came to the planning meeting for the 1st Annual Smiles for Sophie Forever Run/Walk. We are so humbled by the number of you who are willing to help us, because you believe in our cause of searching for and finding a cure and supporting families who will battle this as we search for that cure.

Below I am posting our mission, so those of you who couldn't attend the meeting will know what our foundation is all about.

The mission of Smiles For Sophie Forever –A Foundation Confronting Pediatric Brain Cancer is threefold:

• to provide financial and emotional support to families burdened by pediatric brain tumors
• to promote a global awareness of not only pediatric brain tumors, but also an awareness of the lack of funding allocated for pediatric brain cancer research; and
• to provide financial support to St. Jude, where Sophie was treated, and to other viable organizations committed to the treatment and cure of pediatric brain cancer.

Our paperwork is submitted and now we wait. Hopefully with the connections we have, we will be able to get this pushed through sooner than later. Regardless of how long it takes, we will continue to plan for the race and pursue our mission.

Our next meeting will be held on Wednesday, April 30th at 7:30pm at Swingos Grand Tavern in Avon Lake. Everyone is invited, and we'd love your input and help, even if you were not able to attend the first meeting. We want to thank Swingos for providing us with appetizers and for allowing us to use their meeting space, and for accommodating the greater number of people that we thought were coming without blinking a eye. We cannot say enough good things about Swingos. They are truly committed to the community!

More information on the run/walk will be coming on the new website. We are still working on some last minute details with the registration form and the online registration link, so bear with us while we make the last few changes.

Once you are able to register online, you will see that you have the option of telling your friends and family about the cause for which you are running/walking and asking them to consider sponsoring you and your efforts, in order to raise additional money for our cause. We know this will continue to bring Smiles to Sophie FOREVER. Even though we know that pediatric brain cancer "won't make you smile."

Again, you will soon be able to read all the race details on the website and access the registration form as they become available, but in the meantime, here are a few answers to some questions we have been asked.

The race will start and end at the Walker Road Park in Avon Lake, Ohio.

This event is for families. There will be a shorter walk for those who are planning on pushing or pulling younger ones in strollers or wagons.

We are planning some super fun and exciting activities for children for after the race, as well as birthday cake for everyone!

In addition, we are currently looking into hotels in the area that might be willing to give us a group discount for the event, so that those who are coming from out of town will have a place to stay. (Thanks all you Cincinnatians and Michiganders!) Stay tuned to the new website for that information as well.

Again, I will post Kristin VanEuwen's information, as she is "heading" up this event. Feel free to contact her with questions, or if you would like to help, or if you have any thoughts or ideas to share. Again, thank you to everyone who has helped already. We fully realize that we could not be doing this without all the help from so many generous volunteers.

I hope you know that by helping us you really will make a difference in the life of a family battling pediatric brain cancer; ideally by helping us fund research for a cure, but if that cure has not been found we will find a way to help the families and ease the burden. We know that with all your help and fundraising efforts, we will one day see a cure for some type of brain cancer, which will in turn lead the way to a cure for all types of cancer.

Kristin VanEuwen: pkvaneuwen@oh.rr.com, 440-781-1179

I talked to the mother of Ashley Boross (another pediatric brain cancer warrior) yesterday. This family lives not far from us in Sheffield Lake. I never really thought that there would be any pain that would compare to losing Sophie, but after talking with yet another mother who is watching her child suffer because of a brain tumor, all those horrible feelings of despair came rushing back. It reaffirmed to me the importance of fighting this fight for all those children afflicted with brain cancer. I started this post on Tuesday, and today is Thursday. I took dinner over to Ashley and her family, so I had the privilege of meeting another fighter. What a sweet girl! Even though she was laying in bed, she was abe to speak to me in such a sweet polite voice. I am honored to have met her and her mother. You can read Ashley's story on at caringbridge.org. Her name is Ashley Boross.

Lastly, one more big thanks to Kristin, Mo and Katy for all they have done in coordinating the run/walk and also to Pete for providing the legal counsel and assisting with the non-profit paperwork. We still have lots to do but they have been vital in the progress we have made so far. We know God has placed these people in our lives for a specific reason, and helping us honor Sophie, and do what she would want us to do, is the best reason of all.

And of course, a special thank-you to Omar Trevino of Dios Design...he is the very generous volunteer who offered to take on building Sophie's new site. His sister is Donna Ferchill of the Jennifer Ferchill Foundation, and both of them have been so kind to offer us their help. We are more than grateful!

As you will see when you first visit the new site, there is a lot of information there. Obviously we had a lot of requests and Omar so wonderfully put our thoughts and visions into this great design. We hope you will love it as much as we do...we couldn't have envisioned a better way to honor our Sweet Sophie Girl!

The picture I posted was taken as we neared the end of radiation at St. Jude...one year ago tomorrow.

6 Months Without Sophie

First things first. For those of you who are looking for simple ways to make a difference, here are some things you can do.

Please take a minute to go to this website and sign the petition to get a pediatric brain cancer stamp created through the U.S. Postal Service. I think this idea is a great way to spread awareness, and really hope you might take a minute to help make this a reality.

http://www.thepetitionsite.com/petition/521710130

Also, please visit Grace's carepage. This update includes instructions on how to get pre-written letters emailed to you so you can send them on to our Congress people.

http://www.carepages.com/UpdateListing?pagenumber=2&seed=123608&ClusterNodeID=jb06&tlcx1=chp&tlcx2=1292605

Both of these things take just a minute, and could make a difference in the life of child with cancer.

Our first Smiles For Sophie Forever 5K Walk/Run meeting is still on schedule for this Wednesday April 9 at 6:30. It will be held at Swingos Grand Tavern in Avon Lake. Email Kristin at pkvaneuwen@oh.rr.com for more information. Everyone is invited, and we would be so grateful for your time and talent.

We are making progress with IRS paperwork, the race and with the website. We are hoping that the information, registration and fundraising details will be posted by the end of the week. Thank you for your patience, and for the many inquiries about the details. We know it is going to be a fun day and a great birthday party for Sophie!

Well, what can I say. It's been another month. Another month without Sophie, another month in which children have died from a DIPG and another month in which more children have been diagnosed with brain cancer.

The pain of missing Sophie still stings my heart as it did the day she died. She will not be back, I will not wake up from this nightmare; those things will not change. However, I can only hope and pray that what happens to other children and families will change. I am steadfast in my desire to do something that might help these children and families and ultimately cure this disease.

Little by little I go through Sophie's things. Today I was looking through her nightstand. I found a couple old videos she used to watch in her room. I found her "Book of Colors" that she had made in preschool, and I found the book "The Night Before Christmas." That brought back so many memories, as we read that every night during the Christmas season of 2005 and 2006. When Sophie was just two and a half, she could recite that book and tell you what was coming next. I can still hear her saying, "mama in her kerchief and I in my cap" and "tore open the shutters and threw up the sash." This past Christmas I wondered what happened to that book as I got out all the other Christmas children's books while we were decorating. So, as I miss Sophie here every day, it's those little things that hurt the most.

I have so many good memories of times with Sophie; even those memories we made after she was diagnosed. I know those months weren't spent doing what we had always envisioned, but I can distinctly remember fun times I had with Sophie and how her laugh sounded and her smile looked as the disease progressed. The picture I included was taken exactly one year ago. We were at St. Jude. Sophie was a month into radiation; hindsight tells us she was doing well, while at the time, we thought she wasn't "getting better" fast enough. She and my Mom were having a party with many of the stuffed animals that had been sent to her. When I saw this picture, I noticed her puffy steroid cheeks, but then I looked past that to the beautiful smile she had.

I always smile when I think of her smile and when I remember a funny thing she said or did, but a lot of times I have a heavy heart when I think of what she went through. The worst time for me is at night; my mind is like a song on repeat as I replay time and time again all the things that Sophie, and our family endured during her battle. The other night as I was trying to fall asleep, I started to think about what was going through Sophie's mind, as she lost all of her physical abilities which would have allowed her to do what she wanted. I was laying on my back, and I thought to myself, this is how Sophie felt. Each morning she would lay in bed next to me and wait until something told me to wake up and look at her. Sometimes it was at midnight, other times at 4:00am, 6:00am or 8:00am. I thought about all the times she woke up waiting for me to wake up, maybe because she was thirsty, or needed her position adjusted or needed a cuddle; I pray to God there were not many times that I didn't sense her being awake, because she had no way of getting my attention. I like to believe that I always "knew" when she was awake, maybe it was a faint moan or something, because I swear that every time I opened my eyes, she would reach out that left hand to me. But if there were times she woke up and I didn't, I wondered if she just felt sad and laid there until she fell back asleep.

For a second I laid in bed and imagined what it would be like to lay there, not being able to talk, or sit up, or move your right arm or leg. The feeling sent a chill through my spine as I really grasped and realized how scared Sophie must have felt at times. That scared, helpless feeling she had, day after day, is all because of a tumor called a diffuse intrinsic pontine glioma, for which there is no known cure. If you stop what you are doing for a minute and put yourself in Sophie's shoes, imagine what you would feel like if you lost the physical ability to do everything you take for granted. You would not be sitting at your computer, typing, reading, taking a sip of water, going to the bathroom, scratching an itch, or having a way of notifying somebody if you were about to throw up (and if you were like Sophie, this was a daily occurrence.) I know she will never again have to experience those feelings, and as much as my heart aches for what Sophie went through, it aches too for those children who will actually experience what Sophie did.

Having gone through this battle with Sophie, and knowing and following the battles of other children with DIPG, it's obvious to me that there are different types of DIPGs. I say this simply because of the way and speed that the tumor progresses and how the symptoms of disease progression differ from one child to the next. DIPGs are usually grouped into one category because their pathology cannot be determined without a biopsy, which cannot be done until death, due to the risks, and even after death, many parents chose not to do a biopsy anyway.

I think about Sophie's last day here on Earth. Obviously her physical condition had deteriorated, and we could have known that her days were numbered. But because she seemed to be having a few better days, we thought she would be with us a while longer.

In fact, the afternoon that she died, we went to a picnic that was hosted by some of Marc's co-workers and their families. There, Sophie rode reclined in her stroller, and although she was a little apprehensive about where we were going, she enjoyed some bites of a hot dog, hamburger, chips, and even some ginger ale. I was surprised and impressed with how she was able to chew and swallow some food, as she had been having increased difficulty doing so.

I replay that day over and over in my mind because I had a hair appointment that day. I left the picnic and Marc stayed with Sophie and Sarah, and his Aunt Margaux who had gone to help. Over and over I tell myself I wish I had stayed and spent the rest of the afternoon with her. You know what they say about hindsight. When I returned home from my appointment, Marc was cleaning up a little because Sophie had thrown up. He had bathed her, and wiped up the mess on the chair and floor, while Aunt Margaux occupied Sarah. Margaux had Sarah up on the bed with Sophie and they were being silly. Sophie was trying to hold Sarah's hand, and it's a picture I will have forever in my mind.

I curled up with Sophie for a minute, and Marc left with Sarah to go to the store to get a new computer for me because my other one had crashed. Marc also often says he never would have left if he knew what was going to unfold later that night.
As I cuddled with Sophie, she fell asleep around 6:30. I got up and got a few chores done, and would periodically go in to check on Sophie. A few times, she had her eyes open and would reach for me like she always did, and I would lay down with her until she fell back to sleep. I thought this would be another "normal" night.

Marc came back with the computer, bathed Sarah and put her to bed, and began unpacking things. Around 8:30, my friend Andrea arrived because she was planning on staying with us the next day to spend time with Sophie and help out. We talked for a while in the kitchen, and then it was time for Sophie's PER treatment. Marc said he was going to bed (it was his turn to sleep in Sophie's room, while I slept downstairs with her.) I turned on the machine and went through the treatment. Sophie didn't open her eyes, but I was not surprised because there were times before that she would not wake up for the treatment if she had been sleeping.

Andrea and I sat on the bed after the treatments and watched Sophie. Her eye began to water, and she made a few rustling sounds in her throat. I tried to wake her, but she didn't really respond. She briefly opened her eyes, and then I remember saying to Andrea, "Does she look blue to you?" She said to turn on the lights (because we only had the night light on). I ran upstairs and got Marc who flew down the stairs.

When we got back to the bedroom, it was clear that Sophie was blue, around her nose, and on her nailbeds. It took us a minute to get the oxygen machine going because we had had it for a couple months and had not had to use it. Once we figured that out, Sophie regained her color, but didn't open her eyes.

We tried to wake her, and although she never opened her eyes, she did squeeze my hand when I told her to squeeze it if she could hear me.

We called my parents in Michigan and told them how Sophie's condition had changed. They said they were getting in the car right away to head to Cleveland.

I called Megan and asked her to come look at Sophie and tell me what she thought. (We really hadn't had any "scary" times with Sophie up to this point, and were really just looking for reassurance that this was "normal.") Megan said she would come right away, and in the meantime we called hospice to come and look at her. Unfortunately, the on-call hospice nurse was at least an hour away, so we were on pins and needles waiting for a "medical" evaluation. When Megan got there, her initial thought was that Sophie "looked good." She said she thought her breathing was a little shallow, but nothing like how it gets at "the end." I was a little relieved and we just sat with Sophie still trying to rouse her.

At this time it was about 10:00pm. We rubbed Sophie's legs and hands and told her how beautiful and special she was, not knowing if this was our last chance to talk to her. We told her that it was okay to go and see Jesus, and that if she saw Him to not be afraid and that we would always be with her. We were afraid to move her because we didn't know if a change in position would cause the tumor to press on a place that would make breathing difficult. We had the oxygen going, but at one point she started to turn blue again, and then she stopped breathing. We just sort of sat there in disbelief, and then I began to panic and have the "oh no, this is NOT happening right now thoughts." Megan suggested to Marc that maybe he would want to start mouth to mouth. He did that a couple times and then she seemed okay. It amazed me how fast I settled down and went into "take care of Sophie mode" when all I really wanted to do was scream at the top of my lungs.

We talked to Sophie some more, and she began to make a few gurgling noises. We decided to use the suction and for the first time ever, the "stuff" coming up had a brown tint to it. I was frightened, although Megan said it can be like that if there is fluid in the lungs (which Sophie had not had up to that point.)

I remember really having to go to the bathroom but I was scared to leave her. I really thought I would have an accident if I didn't go, so I went, while Andrea kept yelling at me to hurry.

Right before the hospice nurse arrived a little after 11:00.pm, Sophie seemed a little better. At 11:17pm I mentioned to Marc that it was good, because we made it past 11:11. (With all the times we had been seeing 11:11, we had it in the back of our minds that would be the day or time something would happen.) She wasn't making the noises and her color was better. When the hospice nurse took Sophie's vitals, she said Sophie's pulse was not real strong and that her breathing was shallow. Soon after, Sophie starting taking these heaving breaths. I looked at the nurse with wide, scared eyes, and she said, "this is what happens at the end."

Megan encouraged me to place Sophie in my arms, even though I was afraid of hurting her or her breathing. Megan and Andrea and the hospice nurse left Marc and me alone with Sophie. Sophie continued to take a deep heaving breath (a sound I will always remember) every few seconds. Through our tears and shaky voices, we continued to hold her and tell her we love her. Marc sang his rendition of "hush little Sophie" that he had sung to her many times in her four years. I had a very hard time containing myself then, and I just prayed and prayed that she wasn't in any pain. Breath after agonizing breath, we tried to comfort her and said, "it's okay, Sophie. Mommy and Daddy are here. You'll be okay," I flash backed to all the days of doctors and nurses appointments when I told her the same things. I always felt that I was providing her with some comfort, but this time was different. I knew in my heart that the only way her suffering would be relieved, and that she would feel true comfort, was to go and be with Jesus. I told her over and over, that I would see her again, and to not be afraid. I asked her to watch over me and I think I even told her that in heaven she wouldn't have her "stupid" tumor.

As the minutes passed, the seconds between each breath became longer, and the breaths became softer. I remember thinking, "How long does this part last?" because I always thought it was a couple breaths and then no more. I was worried that Sophie was scared to "cross over" and I longed to be able to make the transition with her. We have never felt so helpless, and this day made the day of diagnosis a walk in the park. Sophie took a breath and then waited a good 10 seconds to take her last quiet Earthly breath. I was cradling Sophie like I had when she was first born when the hospice nurse came back in. She looked at Sophie and asked us if she could listen for a pulse. She did, and there was none. She declared the time of death 11:55pm October 6, 2007. (Megan later told me, that during the half hour when Sophie was struggling to breathe, she prayed to Maria, to "Come and help your friend Sophie." When we put the events in order, we realized that Megan's prayer took place minutes before Sophie left this Earth.)

At that moment, time stood still, the shock set in and I was literally in a daze. Much of what happened after that I barely remember.

I do remember trying to figure out what paperwork we needed for the biopsy. But I never left the room with Sophie. Marc held her for a while, and then people started coming. It was weird. Like when you have a baby, everyone comes to see you in bed, but this time, my baby was dead. It was odd. Marc and I desperately wanted to allow family to see Sophie one last time, but at the same time, the moment was so intimate, and one we knew we would never get back.

Fr. Tim came to the house, and he prayed with us. He shared some comforting thoughts and offered to help in any way he could. (We took him up on that, because we couldn't get the fax to go through, so he offered to go back to the church and wait for it, and then bring it back.)

Somebody asked if we wanted to wake Sarah so she could see Sophie one last time. We said, "No," knowing that we would never get her back to sleep. In that instant, we heard Sarah cry out loudly on the monitor and then go back to sleep.

Family came in crying and touching Sophie. Somebody eventually suggested that maybe Marc and I would want more time alone with her and that was nice. Sophie began to lose the color in her face, and the skin on her legs and feet became splotchy where the blood had pooled. And even though she was dead, I remember thinking how gorgeous she looked. She wasn't blue, more white, almost glowing.

We had to decide on what funeral home to call. And then they arrived in no time. And we waited, and waited for the paperwork to come through for the biopsy. Many times, when the process was taking so long, I thought about saying "forget it" but we didn't. Side note- When we first agreed to the biopsy, I understood that a small sample wold be taken using a needle inserted at the back of her head. When I saw Sophie the first time at the funeral home, I was able to see a thick rope like stitching from ear to ear. (You really had to look close for this; not everyone could see it.) I wondered why that was there, and later learned that they had taken the entire tumor. It's pretty morbid to think of your four year old daughter's skull being opened, but when I think about it today, six months after her death, a part of me is relieved that we did get that tumor out of her head!

After a few hours..it was around 3:00am. We felt that it was time to let her go. How I made that decision, I will never know, because the minute she was gone, I wanted her back. Marc carried her outside with everyone watching. I am thankful that it was the middle of the night, because it would have been quite an ordeal. I was shocked and saddened to see a hearse in my driveway. The funeral director got the stretcher out and said to lay her down when we were ready. Marc did and we tucked her all in up to her chin. It was a little chilly, and I felt strange not putting a coat on her.

The hospice nurse called Marc and me over for one last signature to authorize the biopsy, and said, "I am sorry for your loss." and then that was it.

We stood next to the stretcher and talked to her for the last time. I remember feeling like she wasn't really there in her body, yet that she was watching over us from one of the many stars in the sky that night.

Everyone was still watching us. Unless you have lost a child, you won't understand this, but Marc and I couldn't say anything to anyone. We just wanted to be alone. We didn't even know what to say to each other. I felt as though I wasn't really there, like I was watching this happen to somebody else.

My parents offered to follow the hearse down to the hospital in Akron, with my specific directions to make sure they took good care of Sophie. It was strange not going with her to the hospital, because I had taken her to every visit. I wanted to go too, but I just didn't have it in me. I don't think I watched them pull away. We went inside, and then we asked everybody to leave, except my friend Andrea because we were worried about her driving back to MI all alone at 4:00 in the morning.

When we got back inside, I immediately started cleaning. We wanted everything that had to do with this illness gone, we took all the hospice equipment and medicine out to the garage. The kitchen was messy from all the people in and out. I just felt empty and didn't know what to do. I remember picking up water bottles and wiping down the counter. I wasn't tired, I was going on adrenaline. After I did all I could find to do, I laid down in bed and cried. I cried like I never cried before. I remember thinking, "I cannot believe this just happened." I knew in my mind that Sophie had been dying since the day she was diagnosed, but something prevented me from really grasping that, as we went through all the motions of caring for her day to day.

I realize there are just some things in life we will never understand, and this whole ordeal is one of them. What I have come to understand, is that there is a lot that we all can learn from this, and a lot we can do to help those afflicted and to search for a cure.

When I went with Sarah to the cemetery yesterday, the sun was shining and there were ducks and geese in the pond. The snow had melted and I really felt a sense of comfort being there. Maybe because it was a little warmer, and I didn't worry about how freezing cold it must be six feet under. Sophie is with me every day and gives me guidance when I need it most. Not many people are as lucky as I am to have the honor of being the mother of a saint. I love you and miss you Sophie Girl!

To Ponder

I just got around to reading this devotional and thought I would put it out there in case it hits home to you like it did to me. It's often easy to feel sorry for all that has happened, and wonder why it was our daughter and family that was burdened when it seems like there are so many "healthy and normal" families out there. I can always use a reminder that God is in control, and created me for a purpose. Some days I feel like I am fulfilling that purpose better than others, so reminders are good.

2008/04/02


The Captivity Of Discontent
by Jon Walker


“I don’t say this out of need, for I have learned to be content in whatever circumstances I am. I know both how to have a little, and I know how to have a lot. In any and all circumstances I have learned the secret [of being content]—whether well-fed or hungry, whether in abundance or in need.” Philippians 4:11–12 (HCSB)


*** *** ***

The Apostle Paul, who was blessed with great privileges – but also beaten and stripped of everything he had – taught that true contentment must be learned: “I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.” (Philippians 4:12, NIV)


He teaches that God gives us strength to be content. This is an important spiritual truth to learn because if wealth, good looks, or the seemingly perfect spouse brought lasting contentment, then Hollywood would be filled with some of the most content and happy people on earth. But it’s not.

What does this mean?

Don’t compare yourself to others – When you compare your life with someone else’s, the only place it can lead is discontent. There will always be people who appear to be better off than you, but you don’t know their real circumstances.

I recall counseling a husband many years ago, who said he wished his wife could be more like so-and-so, and he named a woman in our congregation. What he didn’t know was that the woman was an alcoholic who was causing awful heartache and stress for her family and her husband. That’s why the Bible says it is unwise to compare ourselves with others or even with ourselves! (2 Corinthians 10:12)

Be grateful for who you are and what you have – Learning to be content requires that you stop any “when and then” thinking – “When I am ___________, then I’ll be happy.” (You fill in the blank.) You may actually be content for a little while but then someone else or something else will come along and drain the contentment from your life.

But listen – you are unique. God created you to be like nobody else, so why would you want to be anyone else? God is perfect, and you were his perfect choice to be you! Understanding that is a huge step toward being content with your life.

And then look at all the things God has given you. So often we allow what we don’t have to dominate our focus to the point we forget the many, wonderful things we already have – not only material things, but far more important blessings, such as family and friends.

Give yourself to others – If you will begin giving yourself to others, sharing what things you do have, sharing your time and your talents, you will find yourself learning to be content. Helping others will give you an appreciation for what you have and who you are but, more importantly, you will find yourself growing in contentment. Why? Because God designed us to serve and share with others and until we do that, we will feel great discontent.

Focus on things with eternal value – The real secret to becoming content is to focus on the things that have eternal value. It may be a familiar teaching to you, but Jesus said we should store up our treasures in heaven, and not on earth “where moth and rust destroy, and where thieves break in and steal.” (Matthew 6:19–21, NIV)


Think about the things in your life – What will last forever? What will last at least for your lifetime? What will last only a few short years, or months, or days? Based on eternal value, what things are most important in your life? Where – and with whom – should you invest your most time and energy?

By reorganizing your life around eternal priorities, you will find yourself growing in contentment, as you live according to God’s design and purpose.
© 2008 Purpose Driven Life. All rights reserved.
Pastor Jon Walker is a writer for www.GraceCreates.com.



The next story is one I heard at Sam's funeral, and have been meaning to share. I've seen it two times since the funeral and I am taking that as my sign that I really should share it.

The Dragonfly Story
Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, …scurrying over the soft mud on the bottom of the pond.
They did notice that every once in a while one of their colony seemed to lose interest in going about with its friends. Clinging to the stem of a pond lily, it gradually moved out of sight and was seen no more.
"Look!" said one of the water bugs to another, "One of our colony is climbing up the lily stalk. Where do you think he's going?" Up, up, up it slowly went...Even as they watched, the water bug disappeared from sight. His friends waited and waited but he didn't return.
"That's funny!" said one water bug to another…
"Wasn't he happy here?" asked a second…
"Where do you suppose he went?" wondered a third…No one had an answer. They were greatly puzzled.
Finally one of the water bugs gathered his friends together. "I have an idea. The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why."
"We promise," they said solemnly.
One Spring day not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up he went. Before he knew what was happening, he had broken through the surface of the water and fallen into the broad and free lily pad above.
When he awoke, he looked about with surprise. He couldn't believe what he saw. A startling change had come over his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings...The warmth of the sun soon dried the moisture from his new body. He moved his wings again and suddenly found himself flying about in great curves. As he flew through the air he felt exhilarated in the new atmosphere.
By and by the new dragonfly landed happily on a lily pad to rest. Then it was, that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! Above the water, he had become a dragonfly, swooping and dipping. There they were scurrying around just as he had been doing some time before.
Then the dragonfly remembered the promise. Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water…
"I can't return!" he said in dismay. "At least I tried. But I can't keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I'll just have to wait until they become dragonflies too. Then they'll understand what has happened to me, and where I went."
And the dragonfly winged off happily into his wonderful new world of sun and air...


God Bless You All.

I'll post again on the dreaded 6th.

Save the Date!!!!!!

Announcing the First Annual Smiles For Sophie Forever 5K Run/Walk!!!!!!!!

We are so excited to share with you this preliminary information about the first event we will be having as a part of our new non-profit organization that is currently in the works.  We are hoping that the State and IRS paperwork will be approved sometime very soon!

The run/walk will be held on the morning of July 4, 2008 here in Avon Lake, Ohio.  This idea has been in the back of our minds for some time now, and we weren't sure how to go about it. But after some tremendous support and encouragement from some very special people, we decided to make it a go.  Many of you know that Sophie was born on the 4th of July and we thought this was a perfect way to celebrate her first birthday in heaven, as well as launch our latest endeavor...Smiles For Sophie Forever  --- A Foundation Confronting Pediatric Brain Cancer.

The picture I posted was taken in May of 2006 when Marc ran the Cleveland Marathon. Marc stopped when we met him along the route to have his picture taken with Sophie in the rain.  Sophie was excited to wear the "Run Daddy Run" shirt and I know on July 4th, she will be watching us and saying, "Run, Supporters Run!"

In addition to the Run/Walk on July 4th, there will be other ways for adults and children to have fun; in case you aren't a runner or walker.   We want this event to be for the entire family so we will have something for everyone and of course we will have either a giant birthday cake, or tons of cupcakes!

We do realize that this is a holiday weekend and a time for family, celebrations and traditions. But it is our hope that you will realize the importance of our mission of raising awareness and funds to cure pediatric brain cancer, and to help those afflicted.  Perhaps this event could become one of your new "traditions" as we plan to hold the race each year on July 4th.

We are currently seeking volunteers to help with our cause.  We need help with planning the details of the event, as well as volunteers to work on race day.

If you are interested, in helping, please contact Kristin Van Euwen at pkvaneuwen@oh.rr.com or 440 781-1179.

We will be having our first planning meeting on Wednesday April 9, 2008 at Swingos Grand Tavern on Walker Road in Avon Lake.  We will start the meeting at 6:30pm.  If you are planning on coming, please RSVP Kristin, so we know how many to expect.  If you cannot be there at 6:30, please feel free to come any time after.  We'd be honored if you would share this information with anyone who might be interested in helping with our cause.

We thank you all ahead of time for your commitment and dedication.  Of course we would like to give a huge thank you to Kristin Van Euwen and Mo Loesch for all the work they have done already!

Also, while I am thanking people, we want to express our gratitude to those of you who have bought the "Sophie" magnets.   In addition to our family and friends, many "strangers" have bought them too, and that is awesome!  Just the other day I was driving and saw a magnet on the back of a car that I did not recognize, and that made my day.  I love to know that awareness is being spread by people who we've never met!  Thank you! Thank you!  There are still magnets available, so if you would like one, we encourage you to place your order.

Each holiday without Sophie is difficult.  On St. Patrick's Day, I remembered that last year we were at St. Jude and Sophie participated in a few activities in the patient lobby.  I vividly remember her wanting to stop at the "nail painting station" where she picked the brightest green they had.  She was so excited, even though she was tired after having just woken up from sedation/radiation.  This St. Patrick's Day, Marc and I went to pick out the memorial monument for Sophie's grave.  Boy how things have changed.

We have been receiving Easter cards from so many very thoughtful people.  And we are thankful for the support and prayers you send our way.

Last Easter we attended the Easter Vigil for Marc's confirmation.  I remember Sophie was so excited to put her Easter dress on and have her hair curled.  She was so good in church even though it was a long service.  We miss her so much.

Happy Easter to all of you.  May you realize the miracle of this day, and how truly blessed we all are.

Don't forget to save the dates: July 4th, 2008 and April 9, 2008.

Website Help

Well, we are still in the process of making the changes to Sophie's site and have all our ideas in place, but we've realized we need the help of a willing professional. This current site is really just a template and we can't quite make the changes to it that we'd like, to really honor Sophie's memory and focus on doing our part to help find a cure.

We know many of you check in on this site regularly, so we thought we'd start here. If you or anybody you know would be willing to donate or discount your/their web design services, please contact Sarah at smiklaski@cox.net. Although we've been trying to teach ourselves and pick through the computer language, we think it would be months before we'd ever get anywhere. And we don't really want to delay any longer as I've been saying I wanted to change this site since November. Plus, we're slowly working on more and more fundraising events and ideas and want a good place to get the word out. We so greatly appreciate any generosity in helping our cause.

Thank you!