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Wednesday, December 24, 2014 5:43 AM CST

Merry Christmas and a Happy Healthy New Year!
Sean is now 12 years old and an 11 year cancer survivor! He is very active, playing soccer and football, swimming and sailing, skiing, and enlisted in the United States Naval Sea Cadet Corp. He is also on the honor roll at school. His siblings are also all doing well.
Thanks for stopping by to check on Sean and our family.
God Bless, Love, Ellen

Saturday, January 12, 2013 10:07 PM CST

Wow! I haven't updated this site in so long, I forgot how to do it! Thankfully Sean is now 10 years old and is in great health. We are all doing well. Prayers for all of our Neuroblastoma friends and families. Happy New Year! Love, Ellen, Scott, Kathleen, Sean and Heather

Thursday, September 9, 2010 5:03 AM CDT

February 22, 2011
Sorely overdue for an update, but everyone here is just fine. Continuing to try to raise awareness and funds for childhood cancer causes. Sean is great, and I'll update soon.
Please continue to pray for our friends.
XO Ellen

September 9, 2010
Today is 7 years since I first heard the word NEUROBLASTOMA. Sean was 11 months old. Tonight Sean was at Scott’s football practice wearing his beach towel like a Super Hero Cape, flying around the field, like all “almost” 8 yr. old boys should be able to do. Please help us continue the fight against Childhood Cancer, and Neuroblastoma in particular. It is a such an aggressive Cancer.

Wequaquet Lake Yacht Club’s Alex’s Lemonade Stand
Our Alex’s Lemonade Stand raised about $1100.00 for Childhood Cancer. We sold paper lemons in advance of the stand, so that folks would know what it is all about. On the day of the Lemonade Stand, we also held a raffle. Thanks so much to everyone who donated items for the raffle and to everyone who helped with the stand or made a donation.

More Lemonade!
If you missed our Alex’s Lemonade Stand don’t worry. September is National Childhood Cancer Awareness Month, and there are at least 2 more stands planned. The first is on Sept. 12th at Marstons Mills Village Days. It will be across from the Library from 11am-3pm. Thanks to Margie and Janelle for hosting this annual event. The next stand is planned for the Barnstable Community School (the old Hyannis East) on September 19th at their annual Harvest Fest. Thanks to Mrs. Keenan and her multiage class for hosting this event again this year. You can also a donation in Honor of Sean to Alex’s Lemonade. Reference the stand code E68470. For more information or to hold your own stand, feel free to contact me, or check out www.alexslemonade.org

Help kids fight NB for free!
Vote here to help fund less toxic therapies for Children with Cancer, through Arms Wide Open Childhood Cancer Foundation. You can vote every day in September. Pepsi is giving away millions in grants. The top two causes will be funded and we are currently in 8th place. Remember to vote daily!
http://www.refresheverything.com/armswideopenchildhoodcancerfoundation
or Vote from your mobile phone

Text* 102653 to
Pepsi (73774)
*Standard text messaging rates apply.

The Hanson Kids
We had a great summer, but it went by much too fast for me. On June 14th we welcomed little Maize Grace Rodney, 3 months early, at 2lb, 3 oz. Congratulations to Tiffany and Courtney. Maize is still in the hospital, but is now up to 6lbs. and is doing great. She is still on oxygen and learning to coordinate her breathing with her eating. Hopefully, she will be home soon. Thank you for your prayers for Maize. Tiffany is keeping busy running back and forth to Boston to care for little Maize.

Also in June we got to go to the Alex’s Lemonade Symposium in Pa. The kids had a great time and we got to see lots of friends old and new, and to learn more about how Alex’s is helping kids. We got to visit with our cousins and to go to Hershey Pa, as well as having a history lesson at Valley Forge. While in Pa, we finally got to meet up with Connie and the Strayer kids. Connie and I have been friends since about 2003 when Sean was diagnosed, but we had never met. It was great to finally be able to “see” my good friends.

Scott was able to take sailing lessons at the yacht club and even won 3rd place crew for the “Little America’s Cup.” Thrilling for Mom, as I too won awards in the “Little America’s Cup” races in 1974! He also took golf lessons through the First Tee program. Kathleen, Sean and Heather were able to attend the Cape Cod League Baseball Camp with our favorite team, the Cotuit Kettleers, thanks to the Big Brother, Big Sister of Cape Cod program. We all enjoyed as many home games as we could and our team came is first! Congratulations to Coach Robert's, our friends Coach Scott and Coach Noah, and all of the Kettleers.

With the hot weather, there was lots and lots of swimming and many days of playing in the hose or someone’s pool. We also got to have lots of dinners on the deck, campfires and s’mores.

Back to School
Scott is in the fifth grade and the triplets are in the second. Scott has also started football, which has a very busy schedule. Kathleen, Sean and Heather want to play soccer, but I’m pretty sure I can’t do both as they are all on Saturday’s. I may have to think of something else.

Thanks for stopping by to check on us, and for your continued prayers. Please pray for our friends and their families too.
God Bless,
love, Ellen

Monday, April 12, 2010 1:41 AM CDT

June 11, 2010
Alex's Lemonade
Visit Sean in Cedarville, Ma. for the 5th Annual Alex's Lemonade Stand put on by our friends Jan and Joe. You can find a stand near you at www.alexslemonade.org
Thanks for helping kids put the "Squeeze" on Cancer!

April 30th
Sean's labs and Urine Catecholamines are w/i normal limits. Hooray! We had lots of fun over school vacation learning to go geo-caching! It's like a treasure hunt with a GPS. We also got to see Grammy, Uncle David and Sue, and some friends.
Scott took a golf lesson, and we did lots of hiking. We had a great time! We stayed a couple of nights at our favorite, White Mountain Hotel in N. Conway, NH.

Please continue to pray for out Neuroblastoma friends. Too many continue to relapse and die. It's Lemonade Season! Continue to look for your local Alex's Lemonade Stand and support Childhood Cancer!


Saturday, April 17, 2010 Great News~~
Sean's MRI is fine. He still has some mystery enhancement on the MRI but has been there and is stable. He no longer needs scans! Hooray! He was very brave getting 2 sticks for the IV. It really is amazing, he just holds his hand out and lets them do what they need to do without any complaints or fear. He was able to get through the entire scan of about an hour and 15 min. without any sedation. He used video goggles and watched a movie. He was very brave all cocooned in blankets and buckles inside the machine while it banged and hummed and clanged. It's very stressful to look down into the tube and barely see your baby with all the extra equipment all around him. This scan was a bit less stressful for Mom as I thought to bring a book and distract myself. He entertained himself while waiting by coloring with crayons on the sheets. (This is allowed at the hospital, but NOT at home.) He is quite the artist! It's so much fun to see what he comes up with. There was a shark, a nurses bag, a cherry pie and lots more. Next he took pictures of his stuffed Dalmation "Dottie" for the book he wants to write. It's called "Cancer Life".
He tucked Dottie in the bed, gave him an IV and checked his ears. Usually Monkey gets to go on these trips but this time he wanted Dottie. (I don't think Monkey was available when we were leaving for Boston.) Thank goodness for years of propafol. He actually looks forward to visits to hospitals. Maybe he will be a Doctor one day. He says his book is going to be for kids, so that they are not scared of the hospital. His labs and urine catecholamines are pending. Hopefully no little glitches to worry about this year, and we can be done and get back to raising awareness and funds for Childhood Cancer.

God Bless, and thank you all for the prayers for Sean and for my family.
Love, Ellen
XO


Scan time
Sean is due for his final scan this thursday. Please say a little prayer for Sean for a clear scan, and truly an end to this part of his journey. We are ready to move forward raising awareness and funds for Childhood Cancer!

On April 1 the song "If I Can Hold Your Hand", written by Andy Grube and sung by super-talented 12-year old Abby Miller, was released on www.artzuno.com. All profits from each $1.99 download of the song on the website www.artzuno.com will go to the Band Of Parents Foundation, funding new Neuroblastoma therapies at Sloan Kettering. Please take a listen to Abby's demo on the Artzuno site and download the song.
http://www.artzuno.com/homepagenews.aspx

Spring is here, and that means Alex's Lemonade!
Register today to host your stand for Lemonade Days - June 11th, 12th and 13th, 2010!
www.alexslemonade.org
You can host a stand any time of year, it's easy and fun!

Please continue to pray for our friends. God Bless, love, Ellen

Tuesday, February 2, 2010 0:36 AM CST

March 5, 2010
Sean's scan is scheduled for April 15th. Hopefully this will be the last one that he will need. I tried to attend the "Cure Me, I'm Irish" fundraising event tonight, but my car broke down on the way. Then a very strange thing happened. I'm alone on the side of the highway, getting nervous and trying to call AAA. My cousins from Boston, happened to be driving by. What are the chances of that? Anyway, they were able to give me a ride to the bridge, I got a ride home and called AAA and had the car towed. I was so sorry to miss this important Neuroblastoma fundraising event. Still I felt Angels around me as folks came to my rescue. I hope they keep up the good work, as I figure out what is wrong with the car, hoping it is something very small and inexpensive to fix! THANKS COUSINS, for coming to my rescue and thanks to my Angel friends for sending them my way!

Please pray for our friends, Will, Charlotte, Christopher, Sam, and so many more.

Please sign the guestbook, so that we know that you were thinking of us!

God Bless, love, Ellen
XOXO


February 14, 2010
Happy Valentine's Day
Please say a prayer for our friend Erik. He has won his cancer battle and is now safe in Heaven. Erik was dx w/NB at age 6yrs. He was NED for 13 years followed by multiple relapses and intensive treatments. He was inspiring and courageous and had most incredible Faith. www.caringbridge.org/visit/erikludwinski
Mom Donna, has also exhibited incredible Faith and Courage. She is an advocate for all of our kids and works tirelessly on researching Neuroblastoma. Please pray for their family.

The kids and I went out for Valentine's Dinner at Wimpy's. The girls were very excited to get dressed up in the new dresses that Mimi gave them. (My best Friend Libby's mom.) I got them pink crystal heart necklaces, for their Valentine. They wore their fancy shoes and diamond bracelets from Rellie's wedding. Next Sean wanted to dress up too. He put on his red Valentine Sweater along w/Khaki pants and penny loafers. He was so proud, he had me take a photo of his shoes. Scott was a bit less inspired, but also wore his red sweater, as did Mom. Next the girls put on a little make-up, and perfume. My little dinner party, turned into quite the event. Alysa met us there, which made her friend Scott very happy! We thought up Valentine words, like Roses, and Proposal, and Cupid, and had a lovely dinner! Special thanks to a Special friend, who saw me out with all the kids and took care of our check. Now that was a very Special Valentine Surprise for Mom! I hope you all had a Special Day too.

February 2, 2010 Happy Groundhog Day!
Here is a very long overdue update. No news is good news I guess. Sean is due for his last scan at the end of Feb or early March. He will have it in Boston, as I only have state insurance at present. Hopefully, all will be well, but If I have any ?'s, I'll also ask to have it read in NY. He is now a 6.5 yr. NB survivor.

January 24, 2010
Today is the day that Scott and I met 13 yrs. ago. Today we spent in NH skiing with lots of old friends that knew us both in the “olden” days.

Christmas 2009
Once again we had the Merriest of Christmas’s! We were invited to NYC by Candlelighters, and Lidia Bastianich of the cooking show “Lidia’s Italy”. We woke up early to see that Santa Claus came and opened our gifts. Next we were off to NYC. We arrived in time for a wonderful luncheon at Becco. We met Lidia and her family and we all got presents. We got to meet new friends and see some families from the Ronald McDonald house that we had not seen in a long time. After dinner we walked to Time Square and got the see the Crystal Ball that will be counting down the new year. We got lost going to the hotel in the pouring rain, but eventually made it. The next day we met our Special friend Barbara for a private tour of F.A.O. Shwartz with our own toy soldier Micah. He was full of personality as well as information. It was hot and crowded and it was so special to have a private tour. We even got to see a special dance on the giant piano that was in the movie BIG. Next we were treated to lunch at the boathouse in Central Park. It was so pretty with the frozen lake, with the rain bouncing off of the ice and creating a magical fog with the lights on NY in the back ground. Everything was decorated for Christmas and the whole experience was delightful! We went back to Barbara’s where each child got their own special limited edition ugly doll. We got lost again, but thanks to my co-pilot Scott eventually found the hotel. In the morning the kids went in the hot tub and pool. The staff at the hotel was great as the same 3 people worked all weekend, and they took great care of us! Thank you to Barbara, Cindy and Candlelighters of NYC for getting us to NY. Thank you to Lidia and her family for our Christmas gifts and for helping to raise awareness about Childhood Cancer. Thanks also to our old friends Carol and Bob, and the Stiles family for helping to make our Christmas Merry and Bright!
Thank you to all the other elves involved in making our Christmas magical. I so appreciate that we are loved and remembered at Christmas time.

After a few days of laundry at home, we were off to Grammy’s in NH, for our annual Christmas with Scott’s family. We went from the fast paced excitement of the city, right to storybook winter at Grammy’s house. The kids went skating on her pond, crosscountry skiing and snowshoeing in the yard, and riding on Uncle Davids snow mobile. Scott learned to drive it alone, and loved providing the snow taxi for everyone. Even Grammy ventured out to the pond to join in the fun. We had a bonfire in the yard, a yummy Turkey dinner and more presents with our family.

Since we have been home, our pond has frozen. Some years it does and some years it does not. We were able to go skating right at home. This is very cool and usually followed by enjoying some nice Hot Cocoa. Everyone is doing well at school and they all got great report cards. The triplets are learning to read and write and really enjoying it. School work seems to come easily to Scott, and he continues to do well and enjoy learning.

Last week, it was back to NH. I was not able to rent out my time share, and so decided to go and enjoy it. We were able to see lots of our old friends in the Jackson area. Even though we get to NH, we don’t always get up to Jackson. It was great to be among friends who knew us both in the “olden” days, as January 24th was the day that Scott and I met. My “pretend” niece Alysa came with us. We had a nice dinner at Steven’s house after skiing. The kids went sledding and watched a movie. Well, the kids ended up with some sort of stomach bug. Sean threw up for 24 hours. He was just getting over it when the other 3 got it, all within an hour. It was kinda horrible with everyone sick at the same time, and trying to get to the bathrooms. The laundry never stopped. Luckily Alysa has a good sense of humor, and we got through it all. So for 2 days, I never left the condo... ugh. We got to ski all together twice and She and Scott got to go one afternoon alone. Thankfully Uncle David secured some tickets for us at Cranmore, and Steven helped out with the lessons for the kids at Black. We had a great day at Black with friends, and finished off the week at Cranmore. This is where I learned to ski and have always really liked the mountain and atmosphere threre. Alysa’s Aunt Stephanie was my best friend. She taught me how to ski. Sadly, she passed away in 2004 just a few weeks before Papa Scott did. The triplets can now claim that they have been to the “top” of the mountain, and were all skiing independently from the top! Kathleen was a little freaked out by the high speed quad, and it was very cute watching her adjust to it. It really does feel like it is “taking off.” She was not really sure that this was a good idea at first, but looked right at home on the second ride up. We celebrated at the top with Hot Cocoa! We got to go to our favorite restaurant, the Shannon Door Pub for dinner and entertainment with more friends. Poor Alysa developed the plague on the last day, and had a less than comfortable ride home. I’m not sure she will volunteer to vacation with the Hanson’s again. On her last trip we ended up walking about 40 blocks in NYC in 100 degree weather, with 4 kids all piled up on the stoller. It’s always an adventure with us! That is for sure. I was very glad to have a second pair of hands this trip, and it was great to have someone to laugh with, while everyone was getting sick. You have to keep your sense of humor! These things happen! Back to reality now. I’m hoping we will get to go up skiing again. Thanks Dano, for making that a very real possibility!

Postcards
The kids class will be collecting postcards from around the world this year. A great way to learn Geography. Please send one if you can, we love to hear from you! Also please sign the guestbook so that I know who sent it when they come home from school so excited and tell me it was from someone who "we don't know." I know this takes an effort and I appreciate it!

Kathleen, Sean and Heather Hanson
Mrs. Ahnquist
West Villages School
760 Ost/W. Barnstable Rd.
Marstons Mills, Ma. 02648

We look forward to hearing from you and learning where you are from! Let us know if you would like one in return for your kids. Thanks!

Please continue to pray for our friends. There are many it seems that are having a very hard time right now. Erik is one, that is in need of your prayers.. http://www.caringbridge.org/visit/erikludwinski
He was diagnosed with NB at the age of 6. He was NED for 13 years, but since has had several relapses. We have been friends since I met his family in 2004 in Chicago. Please visit his site and leave a message of support. Erik is truly inspirational!
God Bless, Love, Ellen
XOXO

PLEASE: Sign the guestbook, so that we can know that you were here and checking on my family! God Bless, Love, Ellen

Sunday, December 13, 2009 1:01 AM CST

December 12, 2009
Happy Heavenly Birthday to Sean’s Godmother and my Best Friend Stephanie.

December 11, 2009
Happy Holidays!
We have been very busy this Holiday Season. The kids are at a great age for the Magic of Christmas! Historically, it seems someone or 2, 3, or 4, are usually sick at Christmas. This year we moved things up a bit and were able to celebrate early with my family at my sisters in NH. While there we were able to cut down our Christmas tree. It was cold and snowy, so only Scott my #1 Elf, was able to assist me. He is such a great kid and a great helper all year. The first tree we saw was perfect! And we got to have hot cider and cookies too! We had a great time with all the family. Uncle Scott even took Scott out hunting complete with an orange hat and vest. He was thrilled! Everyone has already had a visit to Santa or one of his Elves. Tonight we even saw the “real” Santa. He had a twinkle in his eye and was so Jolly, we just knew he was the real thing! The boys brought the tree in one morning without help, and probably would have had it in the stand by the time I got downstairs if it wasn’t for the fact that it was a bit too tall for the ceiling. The kids strung the lights and hung all the ornaments to surprise Mom! I even had a Jolly group sweeping and cleaning the kitchen the other night, while singing a made up song about “We are Butlers and Maids.” Everyone seems to have figured out that Santa is watching, and is trying extra hard to “be good.”
We have already had a bout with some sort of illness, so I’m hoping that this was our annual sick week and that we are done, but you never know. We have a very busy weekend planned with lots more Holiday fun!

Postcards
The kids class will be collecting postcards from around the world this year. A great way to learn Geography. Please send one if you can, we love to hear from you! Also please sign the guestbook so that I know who sent it when they come home from school so excited and tell me it was from someone who "we don't know." I know this takes and effort and I appreciate it!

Kathleen, Sean and Heather Hanson
Mrs. Ahnquist
West Villages School
760 Ost/W. Barnstable Rd.
Marstons Mills, Ma. 02648

We look forward to hearing from you and learning where you are from! Let us know if you would like one in return for your kids. Thanks!

www.Candlelighters.org
It’s time to purchase your gold ribbon for Childhood Cancer Awareness. For a donation of only $5.00 you can purchase a Gold Ribbon for the Tree in Washington, D.C. in honor or memory of a child with cancer. After Christmas, they mail you the ribbon for your own tree next year.

www.Candlelightersnyc.org
This year thanks to Lidia Bastianich there is also a Childhood Cancer Awareness tree in NYC for the first time, at the restaurant Felidia. You can visit Lidia at http://blog.lidiasitaly.com/ to learn more. Thank you Lidia and Candlelighters for raising awareness and helping kids.

Please continue to pray for our friends, especially the Sweet Family of OH. Angel Luke lost his life to NB in 2004. Grampa Sweet passed away last year. Tragically, Luke’s Dad Chris also passed away on Dec 3rd, 2009. Please leave a message of condolence or support at http://www.caringbridge..org/oh/lukesweet

Thanks for your continued prayers for my family. Please continue to pray for our friends in treatment and for all the families that have lost loved ones to cancer, esp at Holiday time.

God Bless, Love, Ellen
XOXO

Tuesday, November 3, 2009 8:39 PM CST

November 25, 2009
Happy Thanksgiving to all. We have so many things here to be grateful for. Sean continues to do well. Besides the usual colds and flu, everyone has been healthy. We are grateful to all our friends that continue to take care of us and think of us. Please continue to pray for my family and for all our friends. God Bless, Love, Ellen


November 24, 2009
Happy Birthday to Me! The kids gave me a great party. Heather wrapped everything in the house. Kathleen did a show for me. Sean made me a card and a kite, and Scott also wrapped some special household items. We played pin the tail on the donkey, and ate cake! Everyone had a wonderful night.


November 3, 2009

So many kids seem to be in need of prayers right now. Eric, Daxton, Danika, Noah, Ryan and probably many more. It’s so very sad to see kids fighting for their lives, and young families so burdened with illness.
Please continue to pray for our friends!

Special Request
5yr old Noah is battling Neuroblastoma, the same cancer Sean had. He had a relapse and his mother is having Christmas for him next week. He is very sick, and they have requested Christmas Cards early. Lots of them! If you would like to mail a Card to Noah, his address is
Noah Biorkman
1141 Fountain View Circle
South Lyon, MI 48178.
Please help make this Christmas Special for Noah. My card is in the mail!

Postcards
The kids class will be collecting postcards from around the world this year. A great way to learn Geography. Please send one if you can, we love to hear from you! Also please sign the guestbook so that I know who sent it when they come home from school so excited and tell me it was from someone who "we don't know." I know this takes and effort and I appreciate it!

Kathleen, Sean and Heather Hanson
Mrs. Ahnquist
West Villages School
760 Ost/W. Barnstable Rd.
Marstons Mills, Ma. 02648

We look forward to hearing from you and learning where you are from! Let us know if you would like one in return for your kids. Thanks!

Friday, October 2, 2009 2:11 AM CDT

October 8, 2009
HAPPY 7TH BIRTHDAY, KATHLEEN, SEAN AND HEATHER!

Happy Fall!

More Alex's Lemonade Stands, Hooray! More kids helping kids!

Mrs. Keenan's Multiage Class will sponsor it's 3rd Annual Stand at their Harvest Festival.
Saturday October 3, 2009 1-4pm
Barnstable Community Horace Mann Charter Public School (The Old Hyannis East)
165 Bearse's Way
Hyannis, Ma.
Next to the Brand New Ice Skating Rink.

There will also be an Alex's Lemonade Stand next weekend, October 10th, 2009 across from Christ the King Church in Mashpee, sponsored by the Mashpee Middle School Builders Club. This one will be held from 10am-5pm.

If you are on Cape Cod, we hope to see you at an Alex's Lemonade Stand soon. If not, You can still donate here on Sean's site at the link below.

09-14-09 Postcards
The kids class will be collecting postcards from around the world this year. A great way to learn Geography. Please send one if you can, we love to hear from you! Also please sign the guestbook so that I know who sent it when they come home from school so excited and tell me it was from someone who "we don't know." I know this takes and effort and I appreciate it!

Kathleen, Sean and Heather Hanson
Mrs. Ahnquist
West Villages School
760 Ost/W. Barnstable Rd.
Marstons Mills, Ma. 02648

We look forward to hearing from you and learning where you are from! Let us know if you would like one in return for your kids. Thanks!

God Bless, Love, Ellen
XOXO

Monday, September 7, 2009 4:31 AM CDT

09-15-09
Remembering Papa Scott today on his Birthday. We did not really mark the day in any Special way as Scott seems to really be missing him lately, and getting upset. I know it is better to let it out than to keep it in, but I want to let him talk about it when he is comfortable and not to push him. We miss him. The kids seem to be doing well in school and are happy with their teachers. Thanks to everyone who attended the Alex's Lemonade Stand or made donations online. Thanks for helping kids!
God Bless, Love, Ellen

09-14-09 Postcards
The kids class will be collecting postcards from around the world this year. A great way to learn Geography. Please send one if you can, we love to hear from you!

Kathleen, Sean and Heather Hanson
Mrs. Ahnquist
West Villages School
760 Ost/W. Barnstable Rd.
Marstons Mills, Ma. 02648

We look forward to hearing from you and learning where you are from! Thanks!

Lemonade-thanks to everyone who came to the Alex's Lemonade Stand yesterday and to everyone who made online donations. Thanks for helping kids~one cup at a time! Love, Ellen and the kids

09-12-09
National Childhood Cancer Awareness Day!

Alex's Lemonade stand tomorrow, Main St. Marstons Mills, 12n-3pm. You can also donate above on Sean's site, even a $1.00 donation is greatly appreciated.
Thanks for helping kids!

09-11-09
Remembering and praying!

Happy Labor Day!
Summer is coming to a close, and we had a busy one, even though it got off to a dreary slow start. We attended the Alex's Lemonade Symposium in Pa. Sean was a pedal partner for the Pan Mass Challenge in August. We attended lots of Cotuit Kettleer Baseball games and they even made it into the playoffs. We went swimming at the lake at the yacht club and in the ocean at Sandy neck. Everyone has learned to swim without their life jackets in the "deep end". All the kids are proud and working so hard at it! Now we are working on the backfloat and learning to dive. We had lots of fun swimming after Hurricane Bill and lots of rain after Hurricane Danny fizzled out. It's really amazing to watch triplets, plus one, learn to do things together. They teach each other, help each other and try to out-do each other. Everyone ends up learning in the end. The kids got to spend some time at Camp Lyndon at the YMCA and we got to go to Fenway Park to a Red Sox game. We had cookouts and S'mores in the backyard. We went to NH to see Grammy, Uncle David and Sue, and had lots of fun at Storyland. We also spent some beautiful peaceful days at White Lake State Park with perfect weather and more swimming. On the way home we stopped to see Auntie Katie and Uncle Scott and got to play with cousins Lauren and Holly. I hope the nice weather continues as we need to do more bike riding and we haven't yet had enough fried clams or ice cream. School will start on Tuesday. Scott will be in a new 4th/5th grade school and he is getting nervous. Kathleen, Sean and Heather are at the same building, but basically a new school group. Our town did a lot of rearranging and closed 3 elementary schools. On friday we went on a little tour to check out their new classrooms and meet the teachers. We were a bit behind on our summer reading, so they lined up the books tonight and we all sat together and read 11 books. (Actually, it was really fun, except for the part where I had to list the same books over and over on 3 reading lists.) I guess that will prepare me for all the paperwork, emergency cards etc. that I will have to fill out on Tuesday. I can't believe how much everyone has grown this summer. The time goes by so quickly. Scott is in 4th grade and the kids in 1st.

September is Childhood Cancer Awareness Month.
Wear your gold ribbons and spread the word. Many people have no idea what these kids and families go through with harsh treatments and severe side effects, or worse. My friends Margie and Janelle will be holding their 4th annual Alex's Lemonade Stand at Marstons Mills Village Days on September 13th. Please join us for a nice cold cup of Lemonade or visit www.alexslemonade.org to make a donation or find out how to hold a stand of your own. You can also make a donation right here on Sean's site in his honor. September 9th will be 6 years since his diagnosis with Neuroblastoma in 2003. We have lost so many friends with cancer since he was diagnosed. Please continue to pray for our friends who continue to fight and for the families of our friends who have been cured in Heaven. Please remember to support Childhood Cancer in some way in September, even if it is just by spreading awareness on your blog or facebook page. Sean is fine and other than the large scar up the length of his body, one would never guess that he is a cancer survivor at the age of 6, (almost) 7yrs.

Please continue to pray for our family and our friends. I miss Papa Scott and wish he were here with me watching our kids grow up, and so much more. Scott misses him a lot too, especially when he is tired or nervous, like at "back to school" time. God Bless and thanks for checking in on us. New photos on the "photo's" page. Im sure I will have some new school pics to post this week.
Love, Ellen
XOXO

Tuesday, July 7, 2009 3:41 AM CDT

July 28, 2009
Happy Birthday to Joyce!
We are getting ready for the PMC this weekend. Check it out!
http://www.pmc.org/about.asp?ArticleID=83
love, Ellen

July 17, 2009
Wishing I was at the Childrens Neuroblastoma Cancer Foundation Conference in Chicago. I didn't have a babysitter this year. I miss seeing all my NB family and friends there, as well as learning what is new in NB research! It's too much $ to bring the kids to fly and too far to drive or take the train. Pat does a wonderful job arranging it all.

Tuesday, July 7, 2009
It’s finally summer after weeks of rain. Hooray!
We recently had the pleasure of attending the Alex’s Lemonade Symposium in Philadelphia. We drove to Providence and took the train. The kids were pretty good and we even had a conductor that remembered us, from previous trips to Sloan when Sean was little. The Alex’s Lemonade shirts and hats may have given us away! We thought we would do some advertising and advocate for childhood cancer awareness on the ride. He sat right down and reminded me how to play Uno, which I had forgotten. Before you knew it we had new friends that joined it. It passed the time and was fun for everyone. The hotel was right near the train station, so it was easy to get to by taxi. It was great to see the Scott Family. I didn’t realize that Eddie and Joey are the same ages as my kids. I thought the symposium was fantastic. I thought that it might be hard to hold a conference for childhood cancer with general topics of interest to all, but they did a great job. The speakers were fantastic, I really enjoyed it. I learned more about PTSD which I definitely have and lots more about cancer past, present and future. It is always interesting to hear ?’s from other parents after the lectures. It was great to meet Aimee and her family. We have talked online since about 2003, but had never met. Sadly Connie was not able to attend. I may just have to drive to her house to finally meet her one day! I saw my friend Aspi, who I know from the CNCF conference in Chicago too. I also met many new families with kids with other types of cancer. Scott had a grand time with his new friends Sean (rhabdomyosarcoma), and his brother Patrick. The kids had fun with Leah (ALL) and many more. Shirley did a great job planning the event. The hotel staff were fabulous, especially with the kids. The kids room was great. They had Wi set up, playdo, lego’s, crafts of all kinds and a magic show. My kids did not want to leave. Everyone got to know one another and the kids played so nicely together. We sat with different folks at each meal and so got to just spend some time chatting with other families.
The food was fantastic and there was lots of it! Later Shirley and her boyfriend Pete kept the kids entertained with music, dancing and wild game of duck, duck goose! Everyone got to stay up late enjoying more lemon Rita’s water ice, which we don’t have at home. In the morning we had breakfast with Aimee, Neil and Zachary. Zach lost his twin brother Kendall to neuroblastoma. Another reminder that funding research is so important, and that kids can’t wait. Next we were off to tour the Historic district. We got to join in a muster and learn to hold our guns and shoot. We played old time games in a shady field. We saw Independence Hall and the Liberty Bell. I learned more about Ben Franklin, mostly from Scott. We got to see Carpenter’s Hall and learn about it’s history. (Interesting to me as Papa Scott was a Carpenter and in the union.) We also got to see the old printing press working, also fun for me, as my Dad was in printing and advertising when we were growing up and I remember his old printing presses. We found Ben Franklin's grave, where folks toss pennies onto it for good luck. We collected stars for our flags at “story benches”. What a fun way to learn history! Next we walked back and stopped at the Hard Rock Cafe for dinner. (We don’t have those here either.) We made sure to find the pictures of Michael Jackson and say a prayer for him and his family.
Back at the hotel, everyone was exhausted and fell asleep early! The next morning it was Dunkin Donuts and off to the train station. Again, the kids were very good on the train. They colored, ate, watched movies, and enjoyed watching the map on my phone as the “blue dot” moved along the tracks. They ran to the windows when the map showed water ahead to make sure that it would be there.
We arrived in Providence just as the rain stopped, and it seemed like such a quick ride home compared to our usual driving trips from NY. Thanks to everyone at Alex’s for putting on such a fantastic symposium. It was their first and I was very impressed!

Another visit from My NB family.
This week we had the pleasure of meeting some more of the Sweet Family. Gail, Julie, Chris, Todd and his girlfriend were all here. I’ve also known Gail since 2003 online and met her in 2004. I see her at the CNCF conference in Chicago each year. Her grandson Luke passed away from Neuroblastoma. Last July I got to meet Grandpa Sweet. He passed away last winter and I was so happy to have finally met him last year, after years of talking online and on the phone from Ohio. Grandma Sweet had never met the triplets and hadn’t seen Scott since he had just turned 5yrs. The kids loved them and had lots of fun playing with them. Luckily they have kids too and were understanding when mine were shooting them with water guns and the hose. Yikes.

July 16-19th is the CNCF conference that I always attend in Chicago. It looks like I may not get there this year due to baby-sitting issues. Ugh. That always makes things much more complex. It is a great conference and I’d highly recommend it if you have not been before.

I hope everyone had a nice 4th of July weekend.
God Bless, Love, Ellen

Thursday, June 11, 2009 0:57 AM CDT

Friday June 26, 2009
We are excited to be going to the Alex's Lemonade Symposium!

Saturday, June 20, 2009
Thanks to everyone who came out the the Alex's Lemonade Stand in Cedarville, it made over $3500.00. Please say a prayer for our friend Joe. He and his wife Jan run the stand. Joe was not able to attend as he was sick. He was just diagnosed w/CLL and is going through staging tests.

Nice article about Sean, who will be a "Pedal Partner" this year for the Pan Mass Challenge.

http://www.barnstablepatriot.com/home2/index.php?option=com_content&task=view&id=18284&Itemid=57

He will be a pedal partner for the team www.myfriendsforlife.org The funds go the the Jimmy Fund at Dana Farber Cancer Institute, but this group raises the money specifically for Neuroblastoma.

God Bless, Love, Ellen



Now it is Alex’s Lemonade time. I’m thinking that this year we will not have our own stand, but help my friend Jan who has a bigger one up in Plymouth. Donations can still be made in Sean’s honor on this site or at www.alexslemonade.org Please look for an Alex’s Lemonade stand near you or consider having one of your own. Childhood cancer is still grossly underfunded, and there is much work to be done.

Alex's Lemonade Stand~Cedarville, Ma.
This event is in memory/honor of:
In honor of Sean Hanson

Saturday June 13, 2009 10:00 am - 6:00 pm
Plans for our 4th annual lemonade stand are well underway at Shaw's in Cedarville and excitement is definitely in the air! With an ever increasing number of associates and friends involved, this proves to be our best year yet. Our giant raffle will once again be the high point of the day and includes such items as RED SOX TICKETS, a gas grill, an IPod Shuffle, a digital camera, regulation size basketball hoop, a bicycle, one night stay at a Cape Cod
B & B, a day of beauty at a local salon, and various gift cards too numerous to list. This year, along with face painting, balloon shaping, and caricatures, we will be offering a hot dog lunch. We guarantee lots of fun for a very good cause!

Location
Shaw's Supermarket Cedarville
2260 State Road Rt. 3A
Plymouth, MA, 02360
United States

Thanks Jan and Joe and all the helpers involved. We will definitely be there!

Also, my sister Kaite is having one at Madbury Days in New Hampshire, stop by and say hello.
Town Hall Rd.
Madbury, NH

Sunday, May 31, 2009 11:13 PM CDT

May 31, 2009

Sorry to take so long to update. The NB survivor party at Sloan was great. We got to see so many long term survivors of NB in one place. We also got to see all of Sean’s Doctors at a social visit instead of him needing to have check ups and tubies and scans. The kids had a great time, and got to play with some of their “NY” friends. They got to hear Dr. Cheung sing and to meet some of the World Series 1969 NY Mets. I was very happy to see Sean’s “roommate” Emily and her family. We met in 2003 when they both had their big NB surgeries. The kids had not met all of Sean’s Doctors, that they hear us talk about before. Next we went back to Ronald McDonald House to see some of our friends there. Back at the hotel we had a nice dinner. On Monday we got to see Barbara from Candlelight's of NYC and her little dog Uno. Next we went to the Museum of Modern Art where we walked around and had lunch with our friend Hope, thanks Hope. It was a very long ride home as it was dark and rainy. I even took a wrong turn in Providence! We made it safely though.

In May, we traveled to Vermont. The kids stayed with Auntie Debbie and I got to attend the NB symposium at UVM. It was very clinical, but nice to see old NB friends and to meet new ones. It is great to hear what is new in NB research and to see that relapsed patients are having more options. Still much needs to be done. It is great to see the parent involvement. Much of the research at Vermont is funded through www.magicwater.org. It was nice to hear Dr. André Bachmann speak. I met him at the Advances in NB research conf in LA in 2006. It was also nice to see Dr. Sholler and our own Dr. Cheung. The kids had a great time with Auntie Debbie, Uncle Dave and Cousin Keith. We got to go to the Ben and Jerry’s Ice Cream factory where the kids look forward to the “Sample of the day.” We also got to see Cousin Caitlin's house which is nearby and to celebrate Scott’s 10th birthday while we were in VT. The kids loved the tree fort and zip line and didn’t mind the Black Flies, nearly as much as Mom did. They came home with many more whelts than Mom who hid inside and watched from the window! The house and car are fully stocked with Benedryl spray.

Sean had some repeat blood work related to his last scan, and his scans were reviewed in NY and everything is fine. NY says he no longer needs to have scans, and Boston says that they will do only one more next year. Hooray, Hooray!

It is Baseball Season now and all 4 kids are playing Little League. Scott is on the Orioles and the kids on the Salem Volcanoes. I really enjoy watching them all play. May is also the anniversary of Scott’s death, and I miss him as much as ever. I wish he could be here with me, watching them grow up. Scott has now lived as long without his Dad as he did with him. He definitely got some of his Dad’s traits. He was sanding and staining the front step the other day, and he looked so much like his Dad with all the tools and a face mask on. I have a picture of the 2 of them working on the same step when Papa Scott first built it. It is sad, but also nice that he remembers working with Papa.

Our triplet friend Brady has his big surgery while we were in NY. He did fantastic and is doing fine recovering. He also has stage 3 intermediate risk. It was nice to get to meet him and his Mom and Dad.

Now it is Alex’s Lemonade time. I’m thinking that this year we will not have our own stand, but help my friend Jan who has a bigger one up in Plymouth. Donations can still be made in Sean’s honor on this site or at www.alexslemonade.org Please look for an Alex’s Lemonade stand near you or consider having one of your own. Childhood cancer is still grossly underfunded, and there is much work to be done.

Alex's Lemonade Stand~Cedarville, Ma.
This event is in memory/honor of:
In honor of Sean Hanson

Saturday June 13, 2009 10:00 am - 6:00 pm
Plans for our 4th annual lemonade stand are well underway at Shaw's in Cedarville and excitement is definitely in the air! With an ever increasing number of associates and friends involved, this proves to be our best year yet. Our giant raffle will once again be the high point of the day and includes such items as RED SOX TICKETS, a gas grill, an IPod Shuffle, a digital camera, regulation size basketball hoop, a bicycle, one night stay at a Cape Cod
B & B, a day of beauty at a local salon, and various gift cards too numerous to list. This year, along with face painting, balloon shaping, and caricatures, we will be offering a hot dog lunch. We guarantee lots of fun for a very good cause!

Location
Shaw's Supermarket Cedarville
2260 State Road Rt. 3A
Plymouth, MA, 02360
United States

Thanks Jan and Joe and all the helpers involved. We will definitely be there!

God Bless,
Love, Ellen
XO

Sunday, April 5, 2009 3:48 AM CDT

May 10, 2009 Happy Mother's Day
I'm planning on having a very special Mother's day with my kids. I'm also remembering my husband Scott who died 5 years ago today, May 10th. So much time has passed and the kids are getting so big. I hope he is with us in spirit, and able to watch them growing up. I'm so very proud of all of them, and I'm sure Papa is too! I just wish he were here "in person" to see them growing, learning, playing, and so much more. Praying for my Mom in Heaven and for all the Mom's who are celebrating Mothers day without their sweet babies who are also in Heaven this year. God Bless, Love, Ellen
XOXOXOXO

April 5, 2009

New York
This is a special trip to NY, as this is the first time (ever), that we are here for fun and for celebration rather than for a check up for Sean.
Sloan is having a Neuroblastoma Reunion Party! Another big landmark for the Hanson family is that I came with all 4 kids and no helpers this trip. It's a little scary as usually in the past I have been able to use strollers, leave 2 home, or take a friend with me to help keep track of everyone. Now the kids are just too big for the stroller. Last trip I figured out how to mount all 4 to the stroller and travel all over! I would have used the angel straps, but I forgot them at home. Even Scott likes an angel straps when we are in a crowded place in NY. Instead we are working on knowing Mommy's cell phone number and what to do it you are lost. Sean already got off alone on the wrong floor, but he remembered to stay where he was until Mommy came to back to get him! Brave boy, but we already knew that. He had to have 10 tubes of blood drawn last week to check on some random viral studies etc. related to some fluid showing up on his MRI. So far all is well. Amazing how the little kids can sit through anything for stickers!

Today
We had a nice ride to NYC. Everyone was mostly good. We checked in to out hotel, which is very nice. Next we hailed a cab and were off to meet our friends the Stiles at the Museum of Natural History. I think we first met Laura and her family on Cape Cod in the summer of 2006. We had a lovely visit with the sweetest little girl. We saw her and her Dad on one of our next visits to Sloan, but she was not feeling very well. Sadly Laura passed away on Dec 22, 2006. Last summer her Mom and Dad were on Cape Cod and came out to an Alex's Lemonade Stand for childhood cancer at the kids school. It was so good to see Mara and Tony. They had birthday presents for all the kids and everyone had fun. This trip we got to meet big sister Suse, who Laura resembles greatly. It is apparent that Suse also inherited "a gentle spirit". She carried Heather who was tired through most of the exhibits. Thanks so much Suse, I appreciate it! We got to see the giant exhibits of dinosaur bones that I had heard so much about. We also got to go to a special Butterfly exhibit. Kathleen especially loves butterflies. It was fascinating and you could even watch them working their way out of the chrysalis and spreading their wings. It reminded me of the story of the butterfly, which is one of my sisters favorites:

The story of the butterfly
A man found a cocoon of a butterfly.
One day a small opening appeared.
He sat and watched the butterfly for several hours
as it struggled to squeeze its body through the tiny hole.
Then it stopped, as if it couldn't go further.
So the man decided to help the butterfly.
He took a pair of scissors and
snipped off the remaining bits of cocoon.
The butterfly emerged easily but
it had a swollen body and shriveled wings.
The man continued to watch it,
expecting that any minute the wings would enlarge
and expand enough to support the body,
Neither happened!
In fact the butterfly spent the rest of its life
crawling around.
It was never able to fly.
What the man in his kindness
and haste did not understand:
The restricting cocoon and the struggle
required by the butterfly to get through the opening
was a way of forcing the fluid from the body
into the wings so that it would be ready
for flight once that was achieved.
Sometimes struggles are exactly
what we need in our lives.
Going through life with no obstacles would cripple us.
We will not be as strong as we could have been
and we would never fly.
So have a nice day and struggle a little and teach well.

Next we went to the Ronald McDonald House and were able to visit with our friends the Hartungs. The kids got to go to the playroom, and I had a nice chat with my friend Tim. I got to see Cain's music room and learn that he is soon to play at Carnegie Hall!

By now everyone was tired and we returned by "yellow cab" of course to our room on the Upper East Side. We are a little further North than usual and will investigate our new area tomorrow. Thanks to Wini and Joanne, at the Ronald McDonald House for helping us to obtain accommodations close by, and Special thanks to the Stiles family for a special day full of memories for the Hanson family!

I'm excited for the party tomorrow to see so many of our NB friends. Sean's first roommate Emily is thriving and I can't wait to see her. Of course I am missing Scott at these times. He was here with Sean and I on that first trip when we met Emily and her family. It is such a blessing that Emily is still with us and doing so well.

Please say a prayer for Laura, and all our Special Angel friends who we know are with us and watching over us. Please check out the
www.bandofparents.org (a group of Sloan parents trying to help kids) where donations can be made to ongoing research at Sloan Kettering. Also www.magicwater.org which supports vital research for NB at UVM. Also www.nbhope where I have been lucky enough to attend the NB symposium for parents each summer. Everyone is working together to find a cure for this sometimes devastating disease.

Please say a prayer this week for all of our Angel friends and the Warriors still in the battle and the brave Survivors of NB, many of whom continue the battle with secondary effects of treatment and the fear of relapse. Also for the Doctors, Nurses and Researchers from around the globe working fervently for a cure. Also prayers for my Sean and for our family are still graciously accepted. Please pray for our TRIPLET friend Brady, who has a story very similiar to Sean's, NB, stage 3 inter risk. He is having his BIG surgery on Monday. I am hoping to meet the family and to be able to be of some support. http://stepsforbrady.blogspot.com/

Thanks so much to everyone who helped us to find our way to Sloan in the first place and countless numbers of folks who helped it all to "happen" along the way. I'm excited to see all our inspirational friends tomorrow at the Reunion party!

Good Night, and God Bless, Love, Ellen and the kids
XOXOXO

Saturday, March 28, 2009 4:08 PM CDT

March 30th, 2009
New York
I'm trying to make plans to go to NYC this weekend for the Sloan Neuroblastoma Reunion party. Very tricky w/4 kids and an oversized vehicle to figure out. It sounds like many of our friends will be there!


Thursday March 26, 2009

Sean's Scan
Sean has his MRI on 3/9/09. The day went about as expected and was very long. First he was very brave getting his tubie in. He didn't even flinch. He took the rest of his po premeds like a champ. He received about 500 cc of fluid, that was going in full speed. The fluid is room temperature and feels cold going in. Sean was very polite in telling the nurse that his arm was not comfortable. He did get a hot pack, but I could tell that it was hurting him. He finally went in for his 2pm. MRI at 4pm. Initially I went in with him as he only had sedation and not the propafol that I prefer. I was afraid he might wake up and want Mommy. Well, I'm pretty tough, but when I saw him getting all strapped to the table, with things over his face and oxygen put on that he didnt like, I started to feel uncomfortable. Then he gets put into the machine with all the clanking and banging and noises like machine gun fire. I had no idea just how stressful this could be for Mom. I cannot imagine the kids who are receiving cranial radiation with their heads in a mask screwed down to the table. When I got the opportunity to leave and go get coffee, I did, thinking the scan would be over in 15 min. Well 45 min later, he was still in the machine. Apparently the machine broke down. Luckily he did not wake up until in recovery. Thankfully, I had brought a change of clothing after the >600 cc of fluid that he got. I got a copy of the scan and his labs while I was still there. I did not get a copy of the reading of the scan and still don't have it. He slept all the way home. I prefer the propafol as they go to sleep, wake up, and you go on your way. Maybe just a bit of fussiness. This way, they go home sedated and have to be watched, so that they don't get hurt. He was very brave throughout the day, as going to DFCI/Children's is really all new to him. He does not remember the previous times that we have been there. As far as I know the scan is good. It was sent to NY, but sadly I was told by Dr. Kushner that it will not officially read, as he is not on a protocol. The thing is he has never been on a protocol, our protocol was wait and see. Anyway, Dr. Kushner said that it is good, it just won't be read by radiology. Boston is waiting to compare it to the scans in NY. There are some area's of fluid around the spleen and liver that they seem to not be concerned about. Next he had an elevated WBC, so I had it repeated on Wed., as I was leaving for Ireland on Thurs and wanted to be sure he was ok. These labs were good, and so off to the next part of the story.....

Killarney, Ireland
I was able to travel, w/o kids, to my cousin Pamela's wedding in Killarney, Ireland. I went with my cousins from Boston. We had a great time and saw everything we wanted to see in Killarney and even got to Dingle. We had a great time at the wedding, which was just gorgeous. It was such fun to get reacquainted with the cousins and to meet the next generation of cousins, as my last trip was 16 years ago. Some of these kids were not born yet! I did miss my Dad, as it is his mothers house and family that I was visiting. I also missed Scott as he really wanted to go to Ireland, and we were planning to go to a family reunion in 2005 which never happened. We were really taken care of with loads of Irish hospitality. We got to tour all over Killarney. We got to see my grandmothers house which is still there, and to ride on a jaunting car, which is one of the family businesses. We saw Ross Castle, the Torc waterfall, Ladies View. The Black Valley, the Gap of Dunloe and Kate Kearney's Cottage. The weather was incredible the whole time, we were very lucky. Thanks so much to Cousin Pam and her family for making this all happen for me. Thanks also to all the helpers at home. My sister Katie came for the weekend. JoAnn had Scott over for a few sleepovers. Joyce took all the kids a few nights for the after school/dinner hours. Special thanks to rose for sleeping over with them. Also for Andrea, June and Libby-who thankfully happened to be off on the day that Scott was ill! And to Gael who filled in emergently to give Rose a break. It all worked out, somehow. Lots of logistics, but really, they were mostly in school.
They seemed busy enough to not even really miss Mommy much. That is a job well done. I did hear of many trips to the candy store, and so they were very pleased!
Home Sweet Home
Or so I thought. On my arrival Kathleen was beginning to get sick. Well this went on and on. It is now Thursday, so it has been a week. I've had all 4 kids home sick. One day I sent 2 to school, but by lunch, I had them back w/fevers. Some sort of flu with high fever, N/V, diarrhea, various aches and pains, severe H/A and at time stomachache. Now it has progressed to terrible coughs. I took Kathleen Friday and Wednesday and she now has an ear infection. Sean does too. Heather still has high fevers. Sean is sleepy and irritable. Scott has a bad headache. I'm writing it all down, as I really can't keep track of who had what/when. I wonder how the octomom will handle days like these. Meanwhile I have to say that I am sooooo glad that I am home to take care of my babies. It would be so stressful if I was not here. They don't get sick often, so I really can't complain. It's all routine things.

Thanks for checking in on us, and Please don't forget to sign the guest book.

Love, Ellen and the Kids
Scott A., Kathleen, Sean and Heather

Thursday, March 5, 2009 2:06 AM CST

March 5, 2009
Happy Heavenly Birthday to Sean’s Poppie, my Dad. His Birthday was yesterday. I miss him a lot.

Sean is due for his MRI. We will have to get it in Boston this year due to insurance issues. Everything is done a bit differently in Boston. He has only had one scan at Dana Farber/Childrens before. He will get sedation with a drug I am not familiar with. I still need to look it up. He will also be premedicated, as he has had a reaction to the MRI contrast in the past. This involves giving a dose at 1am, 7am, and 1pm. of a steroid type medication and a dose of benedryl. It also requires a restriction of food prior to the test. He can have some clear liquids in the morning I think. I have to look it all up again. It is stressful to change hospitals and routines when we have gotten so used to Sloan Kettering. His MRI is not until 2pm. also. Sean is a big eater, so I hope I can distract him from food long enough. While we are there he will have labs and urine for catecholamines. He is getting older now and remembers the last anesthesiologist who administered his propafol too fast. He calls her the "mean lady", as he remembers quite vividly how it burned. It is so nice when you get the extra nice person from anesthesia who lets him fall asleep with the mask, before ever placing the IV, never mind giving the propafol. It's kinda sad that they don't all do it that way. Anyway, I don't remember what the new drug is for sedation, I hope it doesn't burn. I also hope it works. The one time we tried to sedate Sean in the past, he got a boat load of drugs, but would not sedate and we had to cancel the scan and start over another day. He is a "big boy" now, so I hope everything will go smoothly. He is hoping to go on a date with Mommy after the scan, but we will have to see if he is still drugged and who is babysitting at home. I'm still hoping to get an "official" reading in NY as well as Boston, as his surgery was an incomplete resection. Something still shows on the scan (hopefully scar tissue), but I want it compared to the scans they have in NY, to make sure that is has not grown or changed. I still get a little nervous at scan time even 5.5 years out. I notice everytime someone's "leg hurts", or if anyone looks pale, etc. I hope I can get the results quickly. I think I have been spoiled at Sloan where I can usually get the results back the same day. Please pray for our triplet friend Brady~(site below). Also for Jared who is also due for scans and Cody, who is sadly very, very sick at home.
God Bless, and thanks for checking on us.
Love, Ellen


February 17, 2009
Please visit our new friend Brady. He is also a triplet and has been recently diagnosed with Neuroblastoma Stage 3 Intermediate risk with spinal invasion. He has just finished his first round of chemo. He also has a younger sibling, so there are 4 kids under age 2. Please stop by his blog with a message of support. God Bless, Love, Ellen
http://stepsforbrady.blogspot.com/

February 14, 2009
Happy Valentine's Day!
Love, Ellen, Scott A., Kathleen, Sean and Heather.

Sean's scan will have to be in Boston this year on March 9th. I'll still try to have it read by the radiologists in NY though. (insurance issues..ugh!)

Monday, January 19, 2009 2:22 AM CST

February 17, 2009
Please visit our new friend Brady. He is also a triplet and has been recently diagnosed with Neuroblastoma Stage 3 Intermediate risk with spinal invasion. He has just finished his first round of chemo. He also has a younger sibling, so there are 4 kids under age 2. Please stop by his blog with a message of support. God Bless, Love, Ellen
http://stepsforbrady.blogspot.com/

February 14, 2009
Happy Valentine's Day!
Love, Ellen, Scott A., Kathleen, Sean and Heather.

Sean's scan will have to be in Boston this year on March 9th. I'll still try to have it read by the radiologists in NY though. (insurance issues..ugh!)

January 19, 2009
Christmas was great for the kids. They had so much fun. The only little glitch being that everyone was sick. This seems to happen every year at Christmas. We missed Christmas with my sister from NH, AGAIN this year. I think we should really plan it for July, because this is becoming a bad habit. Kathleen and I had strep, Heather and Kathleen were vomiting. Scott and Sean had H/A’s etc. We are still passing germs around as Kathleen has strep again, Sean slept for a day but his test was negative. Anyway, now the whole family is being treated with antibiotics. We were able to go to Grammy's in NH and had great fun with our family there. It was bitterly cold, but the kids had a great time sledding on Grammy's hill. We also had a big bonfire and stopped in for Pizza at the Pizza Barn with the whole family. That is always fun. We may get up there again next week as I have a timeshare that I cant always get rid of in time... It's not my favorite thing, only because it is a lot of packing and up and down stairs a million times while the kids slide around on the ice. Also we can't actually ski, cause it costs too much. It is however up near Jackson, where we have friends we like to go and see. I'm very thankful to all the Christmas elves that helped to make our Holiday Special and Magical. Some great things came together with the help of special friends and everyone was thrilled to see what Santa had brought. They were very, very good this year! (mostly!) This week our pond froze. Some years it doesn't. The first time we skated on it, Papa Scott cleared us a big rink. It was so great, and he didn't even have skates. He ran to the store to get a used pair. Little Scott ran around on the ice with his rescue hero until he got brave enough to join in. The sun was shining throughout he trees and I was thinking how lucky I am. The other day, i was busy, but had seen folks on the ice. We walked down and the conditions were perfect. The sun was already going down, so we had to scramble. First we had to "find" the skates. Next we had to pray that we could still stuff little feet into them and still have fun. Luckily, most I had gotten big 2 years ago and everyone was able to fit into a pair. After tying 10 individual skates, and replacing a number of mittens, we were off. It's handy to own your own pond. We grabbed some bike helmets and plastic chairs to hang on too. The chairs slide well too, so I can give the kids rides. They also serve as seats for getting your skates on and off. Much warmer than the ice I was sitting on the first time I tried to lace my skate. The little kids have only been twice before, once at the rink and once on the pond 2 yrs. ago. I was shocked at how quickly they caught on. Kathleen was thrilled telling me that they don't need lessons. Heather was dancing and spinning on the ice. She got rid of her "chair" first. Sean was chasing me and shoveling snow. Scott the leader of the pack, took over Papa's job of clearing the ice, as he had seen his Papa do. As darkness fell, we scrambled some more to get 10 skates off and put away. Scott thank me and told me how much fun he had. I stayed behind a minute and said a little prayer for Papa, wishing he could be there with us. Later I uploaded the photos here on Sean's page. I was surprised when I clicked to see if they came up and noticed the date of our previous skating day on the pond in 2004. It was also on Jan 17th! (See view Photo section) Seems weird since as Papa Scott used to say, around here you have to skate "fast", as you never know when or if the pond will freeze or melt. I think it is a very cool coincidence and hope that Papa was in fact with us skating on the pond on Saturday. Our rink didn't look as professional as his did, but I told the kids to stop a minute and to see all that we had accomplished with teamwork, by ourselves. I was very proud of all of them. Still looking for a good job that will work with the kids hours at school, hopefully with insurance. Time will tell what direction I head in. Enjoy the snow and ice!
A Happy Healthy New Year to everyone. Too many children lost their lives in 2008. Please keep their families in your prayers.
God Bless,
Love Ellen
XO

Wednesday, November 19, 2008 2:14 AM CST

January 8, 2009 Reminder!
www.comicsforacure.org Tomorrow Jan 9th in Boston. Hope to see you all there! love, Ellen

P.S. I promise a Christmas update soon. We all had a nice Holiday. Kids were sick which seems to happen every year. Heather has a fever now. More soon! love, Ellen


December 17, 2008
I'm overdue for an update, but wanted to let everyone know about a comedy show/fundraiser here in Boston, to raise money and awareness for Neuroblastoma. Check out www.comicsforacure.org for more info. The Show is in Boston on January 9th at 8pm. at the Cutler Magestic Theatre. I hope to see you there!
Love, Ellen


December 2, 2008
Sean has 31 ornaments on his Lunch for Life tree. The kids are very excited and want to buy some ornaments for our friends. The donations go to the Children's Neuroblastoma Cancer Foundation. Thanks so much for helping to decorate Sean's tree!

We had a very nice Thanksgiving. Grammy came from NH, and big sister Tiffany was here too. We are busily getting into the Christmas Season. God Bless, Love, Ellen and the kids

November 18, 2008

Time is flying by and I can't believe it is almost Thanksgiving. Rellie's wedding was just beautiful and the kids all did a great job. They got a second wind and staying up dancing into the night. Congratulations Rellie and Bryon! The Angel's Hope (www.angelshope.org) auction seemed to be a great success. I came home with more than I planned to. My fault for thinking a 9 yr. old would actually "hear" me tell him to stop bidding at a hundred dollars with power tools and a shiny new bike to be had. We are now the proud owners of a new bike, leaf blower and power drill! As Scott was so quick to point out, it was for a good cause! Also he is a good boy and brother and deserves these things. (I just would have waited until I secured a good job first!) Oh well, we had fun and Angel's Hope has done so much for our family! Also, now Sean is in training to use the "old" leaf blower and is getting quite proficient. The kids work and play outside all the time together and it is so much fun to watch. After Halloween I found them all up a tree with a Halloween pumpkin full of candy hanging from a branch and candy wrappers littering the ground, so cute! They really are a "team" and I'm such a lucky Mom to have them and to get to watch them grow. I wish Papa was here to see it too, even though we know he watches over us. Everyone seems to be doing well in school. Scott won second place in a "Scary Story" Halloween contest in a local newspaper. Great timing as writing seems to present a bit of a challenge for Scott. He is good at it, but has trouble taking the time to sit and do it. He was so excited and proud, the timing was great to help him, hopefully, get past this obstacle! Poppie (my Dad) would be thrilled as he majored in journalism in school. Thanks to everyone who let Scott know that they saw his story in the paper. The kids are excited for Christmas and are counting down the days and making lists. This is especially scary for Mom who is still trying to secure a "good" job with insurance. I'm now a substitute school nurse, but there are not enough hours and no benefits. It will make a great second job, but I still need the first one!

Lunch for Life
It's already that time of year. The Lunch for Life Christmas trees are up and ready for decorating. Sean's already has 11 ornaments. Thanks Carol and Bob! Check it out! www.lunchforlife.org Donations go to the Children's Neuroblastoma Cancer Foundation. One lucky family will win a trip to Disney. Remember to use Sean's giving code 30971 to get even more ornaments and chances for us to win! (Wouldn't that be fun!)

Band of Parents
It's also Cookie time. www.cookiesforkidscancer.org
Purchasing these great cookies supports research specifically for Neuroblastoma at Memorial Sloan Kettering Cancer Center in New York.

Shopping Time (Copied from Austin's Page, thanks Tom)
It is time to think about holiday internet shopping and fundraising to find a cure for neuroblastoma and I wanted remind everyone about iGive (www.iGive.com) in addition to the Band of Parents online shop The BoP Shop (www.cafepress.com/bandofparents). A lot of people are shopping online anyway. We should make the most of it.

The Band of Parents raised nearly $6,000 through iGive alone last year just doing our usual shopping at no extra cost. Hopefully we can do even better this year. If you signed up last year you may want to refresh your memory on it, make sure you know your sign in and have not cleared the program off of your computer. For those of you who did not participate in the past this is how it works.

1. Using the computer that you plan on doing most of your internet shopping from go to www.iGive.com
2. Sign up for iGive.
3. Find the Band of Parents Foundation listed under causes and choose that as your charity.
4. Make sure your pop up blocker is turned off and your computer should be set to accept cookies.
5. Once you are signed up you can begin shopping.
6. To do this log in to iGive and then click on the "Shopping" tab at the top of the iGive page and then choose from any of the hundreds of stores listed there. You can do this from any computer.
7. If you are on the same computer you registered on any time you go to the web page of a participating shop a window will open showing the percentage that goes to the Band of Parents. If you purchase something the percentage will get logged.
8. The donation can be tracked on the top right hand side of the iGive page but may not appear there for a few days to a weeks.

How does it work? Online shops give commissions to other business whose web pages that refer customers to their shop. The purchase price is the same as if you had not used iGive but the commission goes to the charity.

Hints on how to make the most of it.
1. Magazine sales give the highest percentages
2. Consider making all of your travel plans through the participating sites. The percentages are low but travel air, hotel, rental car etc. can be pretty expensive so even a small percentage can add up to a big donation.
3. The area we earned the most on last year was through Amazon.com and Barnes and Noble
4. When a new shopper signs up the charity gets an additional $5 with their first purchase. (600 new kids with neuroblastoma this year x 10-100 supporters x $5 = $30,000 - $300,000 not including the percentage of what they spend) so spread the word far and wide.

Boston Fundraiser for CNCF
http://www.maj.org/P2009/cncf_comics.html#

Benefits the Children's Neuroblastoma Cancer Foundation,
http://www.nbhope.org
Friday, January 9, 2009
8pm
$55.00, $100.00
Plus Fees
http://www.comicsforacure.org/

Please keep our friends in your prayers as so many families are dealing with the harsh realities of childhood cancer at Holiday time.
God Bless,
Love, Ellen

Wednesday, October 8, 2008 0:56 AM CDT

October 8, 2008

~HAPPY 6TH BIRTHDAY TO KATHLEEN, SEAN AND HEATHER~

I can't believe how quickly time is passing and you are growing up. The Tooth Fairy has been VERY busy around here! We have been having to go to bed early at least once a week to wait for a visit from the Tooth Fairy!
Today we will celebrate the kids birthday with our Special friend Rellie, at the rehearsal dinner for her wedding on Friday. All 4 kids are in her wedding. (Check back for pics!) Congratulations Rellie! We love you!

Alex's Lemonade Stand
Once again Mrs. Keenan's class held a stand at the Fall Festival. We had some special guests. The Stiles family-http://www.caringbridge.org/visit/laurastiles- was on Cape Cod for the weekend and made a special trip to our school to see us, complete with their Alex's Lemonade shirts, and gifts for all the kids. It was great to see our friends again and to remember our Angel friend Laura who we had the honor of meeting in the summer of 2006. We also were visited by our friends Jan and Joe who also hold annual stands nearby. We actually met these friends through the Alex's connection and now visit each others stands. They also came bearing gifts for all us. Thanks friends, we always love to see you! The kids of Mrs. Keenan's multiage 1st and 2nd grade class did a great job with the stand and beat last years record for sales. There was a nice article in our local weekly paper. http://www.barnstablepatriot.com/home2/index.php?option=com_content&task=view&id=16032&Itemid=30

Fall
We made a quick trip to NH to see Grammy, Uncle David, Ashley and Sue. We went to the Blessing of the animals, the pumpkin patch where we go each year, we saw the Pumpkin People in the town of Jackson, NH., and we ate at our favorite restaurants. We got to play in Grammy's yard and pick vegetables and pumpkins from her garden. The weather was great the the foliage was just about at its peak. It was a quick trip but we got lots of our annual pilgrimages done and it was a nice change. We hadn't been in a long time.

School
Everyone is adjusting well to school and the kids are all making new friends. It is just great to see all the little minds at work. Their excitement for learning is so much fun to see. Big brother Scott is a great role model as well as a great teacher.

Angel's Hope
Angel's Hope "Spread the Light" Auction~Cape Codder Resort
RT. 132, Hyannis, Ma October 24th, 5:30pm. Silent and Live Auctions
www.angelshope.org
Tickets are $45.00 Dinner Buffet and Door prizes. Please join us for a great night out for a great cause. Angel's Hope supports families affected by Childhood Cancer and has done so much for our family.

A busy week
This is a very busy week with the kids birthday and Rellie’s Wedding. I'm sure there will be lots of great pics and memories to share.

Please remember to pray for our friends, especially the family of Brandon Loose who is free of Cancer in Heaven. http://www.caringbridge.org/pa/brandonloose

Thanks for checking on us and praying for us. Please pray that I find a job that will work for the kids and I soon!
God Bless,
Love, Ellen

Wednesday, September 10, 2008 0:40 AM CDT

September 18th, 2008

Alex's Lemonade Stand
Hosted by Mrs. Keenan's Class, 9/27 at the Marstons Mills East Elementary Fall Fest, 12n-3pm.
See the nice write up in our Paper, it made the front page! Thanks Kathy!
http://www.barnstablepatriot.com/home2/index.php?option=com_content&task=view&id=16032&Itemid=30

Angel's Hope "Spread the Light" Auction~Cape Codder Resort
RT. 132, Hyannis, Ma October 24th, 5:30pm. Silent and Live Auctions
www.angelshope.org
Tickets are $45.00 Dinner Buffet and Door prizes


Please Say a Prayer for the Swift family.
http://www.caringbridge.org/visit/madisonswift


September 15, 2008
Happy Birthday Papa, We Love You and We Miss you. Love, Ellen, Scott A., Kathleen, Sean and Heather XOXO

September 9, 2008
5 years from Diagnosis!
09/09/2003 Started with a routine checkup X3. A distended abdomen and an emergent U/S. Scott worked at Cape Cod Hospital back then in construction. I called him on the cell and was visiting with he and the guys when I got the next call. I was just explaining to him about the Mass that they found...next I was told to go straight to Boston to the Oncology Dept. before they closed for the day, and not to stop at home first. I was told it was probably a Wilm's tumor and the best kind of tumor to have as it was so treatable. (I still didn't "get it".) After checking in it was too late for an MRI and so we waited until morning. Meanwhile I had taken Scott A., then 4yrs. to school and never came back...hmmm. A thing that has happened to the poor kid more than once since. No wonder he sleeps in my bed and wants to know where I am at all times. After the MRI, I got the first talk, and heard the word Neuroblastoma for the first time! Neuro-what? He has what? Next was surgery, biopsy, confirmation of NB and a medi-po

rt. At first they thought he was NMYC , a negative prognostic marker and placing him in a high risk category. More talks..of chemo, double stem cell transplants, at least a year in and out of the hospital, radiation, etc. Meanwhile Papa Scott came so I could bring Scott to school in the morning, like normal, grab my computer and return to Boston. More talks with Papa Scott this time and a picture of the huge tumor on MRI, displacing major arteries, kidney and assorted other structures. I had read the reports, but there is nothing like a picture of your babies tiny body with a gigantic tumor inside. Scott's response..."oh my gosh, it's big isn't it..." and mine, "yup!" And so it began, and everything changed. Some things for the better, and some not. High dose chemo was started. Scott held him for the IV when I couldn’t. The computers powered up, and Auntie Gael and I read about Sloan at the same time, while on the phone. A consult was scheduled. Meanwhile, the final pathology came back... the NMYC did not appear amplified... Great news, Stop the chemo-(wrong dose for intermediate risk). Totally different plan. I still didn't get the first one..
The good news was the totally different prognosis. I know the stats don't matter, but intermed risk is significantly better than high. No guarantee, but much better. By now I was totally confused. I called Sloan for a consult and Dr. Kushner got right back to me. The consult was planned but then delayed as Sean spiked a fever requiring admission again. In Boston Sean was deemed inoperable. Mass General and Children's agreed. In NY surgery he was scheduled for surgery before I had been to the consult. More confusion. Thankfully, I already had a laptop and a yellow highlighter, not that it helped, but it made me feel better. We celebrated Papa Scott's last bday in Boston. We didn't know it would be the last. We actually had a great time, and I’m thankful for that. We walked to the public garden, saw the Swan boats and had dinner with my cousin. (While volunteers and a friend, played with Sean in the hospital and we tried to digest all this.) Next it was off to NY for consult, and to meet the amazing Dr. L, home for his 1st birthday cake with his triplet sisters, and back to NY the next day for pre-op testing and surgery. Luckily Papa Scott was able to come with us until we thought Sean was doing OK. Sean was in the hosp for 2.5 weeks. We came home on 10/30, back to Boston 10/31 to have a drain pulled, and got home just in time to go trick or treating with the kids. Time in NY with Papa, as strange as it may seem, was another gift. We had special "time" together, saw ground zero, ronald, sloan, ny presbyterian, central park, the boathouse, a few helicopter rides, watched movies, ate popcorn and in diners, and generally made the best of this bad time. He made me laugh, all the time, and kept things OK in my mind. Sean had a hard time, but came through it all.
We said grace before dinner tonight, and we counted out blessings. I'm been counting my blessings all day. And thinking of all the great friends we have made along the way. I've been thinking of our Angel friends and their families, there are so many that we have met and been touched by. I've been thinking of my NB family, and of how much they mean to me. I've been looking at Sean and listening to his funny stories. He makes me laugh too. And I've been thinking of Papa Scott. Wishing he were here to reminisce with me. To hug Sean with me. To talk with me. To be with me. It's been an emotional day. Heather lost a tooth tonight. Another milestone. She is thrilled to be catching up with Kathleen. They all went to bed early, so the tooth fairy will come. I’ve thought back about the last 5 years, the parts I can remember, and am so grateful for so many taking care of us all. I never did get all the thank you notes written. (for that I am sorry.) As Dad would say, “I have kids that love me, friends that love me, God loves me and I am blessed!)
Good Night, God Bless YOU, and Thank you from the bottom of my heart.
We have had it easy. Sean stopped Chemo. Please keep our friends in your prayers. These kids and families endure more than is imaginable, and always need your prayers. God Bless, Love, Ellen
XOXO

Please remember and pray for all the families effected by terrorism on 9/11/01, esp. our nurse friend Julie who took special care of Sean at Sloan.

Wednesday, September 3, 2008 11:49 PM CDT

*Happy Birthday to Uncle Peter and Auntie Gael*

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH!

We have been keeping very busy. The kids all started school. Scott is in 3rd grade and Kathleen, Sean and Heather have started kindergarten! Thanks to so many folks who have helped us along the way. We have been so lucky to have people that love us and help us in so many ways. They are such big kids. Kathleen has lost her 2 front teeth and we have a few more wiggly ones in the group. They all are excited about school and are having fun with friends new and old. We had a nice visit with Carolyn, Evan and Mom Jen, some friends we first met in NY. It seemed every time I went to NY that first year, they were at Sloan too. Carolyn was dx w/NB a few months before Sean. It was fun to visit with them on Cape Cod. Scott and I also were with them in Washington last year, and Jen and I have been to Chicago to the NB conference in the past. We went to the beach and had a fire complete with hot dogs and S'mores, and we also had an eventful day at Plimoth Plantation with the Colonists and Wampanoag Native People. We got caught in a violent thunderstorm in one of the homes. Luckily it was water tight, and we were in the company of a friendly and knowledgable Colonist. (I can't believe how much history Scott picked up during that chat!) He is now reading a book about Jamestown. I'm sure we will go a few more times and it is a 3rd grade field trip also. Scott will be very well prepared for that! There is lots more to share, but it is late. I wanted to post about the upcoming Alex's Lemonade Stands in Marstons Mills. The first is hosted annually by our friends Margie and Janelle and will be this weekend, Sunday, Sept. 7th on Main St. Marstons Mills at Village Days. The second will be hosted again this year by Mrs. Keenan's Multiage 1st/2nd grade class the the kids school, Marstons Mills East, on Sept. 27th 12n-3p. Another fund raiser is a Gift Basket Fundraiser done by our friend Danielle McCormick. Danielle lost her little son Ryan to Neuroblastoma in April of 2007. She has come up with a very moving fundraiser for the www.bandofparents.org which supports Neuroblastoma Research at Memorial Sloan Kettering Cancer Center in NY where Sean is treated. Scott and I had the honor of meeting Danielle in Washington D.C. last year also. We were there in support of the Conquer Childhood Cancer Act, which thankfully passed and was signed by President Bush recently. Check out the video below and look for Sean! Please consider taking a "chance" on winning one of these Special Gift Baskets by purchasing some tickets and help our little friends to have a fighting "chance."
In memory of Ryan McCormick, and all the Angel NB kids and their families, and with special thanks to Danielle.


If the video link isn't working you can get to it on Ryan's caringbridge.org page below.

video-
http://www.onetruemedia.com/share_view_player?p=6d4c607f8e73ccb36801f9

http://www.bandofparents.org
http://www.caringbridge.org/visit/ryanmccormick~ for more info.

Sean still has some prominent lymph nodes but we checked with Dr. Kushner and were told basically not to worry. He sure seems fine and is full of energy. Sept. 9th is 5 years from Diagnosis! Wow! Yahoo!
God Bless, Love, Ellen

(Don't forget to look for new pics on the photo page.)

Please say a prayer for Max and his family. Max is free of Cancer in Heaven.
http://mikulak.blogspot.com
http://mashedpotatoesforbreakfast.com

Wednesday, August 20, 2008 3:09 AM CDT

Happy 21st Birthday to Alysa! We love you and hope you have a great day!

Well, summer sure is flying by and we are getting ready for back to school. Scott will be in 3rd grade and the kids will go to kindergarten. Mom has not been very successful in finding a good job with the right hours close to home.. Ugh! Still working on that. I'm trying hard to use the least amount of babysitting possible as it costs alot and 4 kids can be a handful. Im not having much luck though.

Back to summer:
We have mostly enjoyed lots of Cotuit Kettleers baseball games. Scott did baseball camp and we all got to know many of the guys on the team. They are fantastic with the kids and I just can't say enough good things about the organization. It's so good for Scott and all the kids to be around the "guys". I get to watch the exciting games and see lots of folks who attend regularly like us. We have only been to the lake swimming once. Just this week we went to a friends pool, and then out to Sandy Neck beach. I don't know how the whole summer passes by and I miss it. I'm trying to cram a few things in to the last week. We haven't even gotten to NH. Somehow I am always busy and still can't keep up. Getting the kids off to camp, laundry, job hunting, lawn mowing, packing lunches, more laundry..we haven't even gone to the yacht club. Wait until I add "working"..ugh. Everyone here is healthy though and the kids are mostly happy! I'm putting off Sean's checkup with Dr. Sklar, as I have state insur. right now and don't think it will cover NY. (His long term effects ie: chemo effects, should be pretty minimal, as his treatment, other than the big surgery was minimal.) He does have a few swollen inguinal lymph nodes that we are watching. I would probably never notice this with one of the other kids, but you just develop such a hyper-awareness with your Cancer kid. Only Sean can go to "camp" right now as my voucher (helps w/cost) ran out before I got a job. That stinks, trying to tell one triplet he can go and the others can't. I have to keep him in so the others can go when I get a job. If I don't I go back on a long waiting list, and I'll need before and after school care x 4 kids. They all benefit from the structure and fun instead of driving around with Mom, watching me do errands or laundry, paying bills, sitting in the car and getting grouchy. We have to make sure that we don't have fun without Sean. Today he had a field trip, but wanted to stay home so he doesn't have fun without the girls. Please say a prayer that a good job comes up for mom soon. Working is so much easier than dealing with the crabby people that "say" that they are trying to help you, and then everyone seems confused and nobody has any answers. Ick! Actually, we have developed the "family laundry fold" and a few other games at home where everyone helps and we get the big jobs done fast. They are great helpers and love to "work". They have all kinds of adventures in the yard, digging holes and burying pipes and making water parks, etc.
I'm going to try to get them to the beach a few times in the next week, then I can take pics and remind them when they are old what a fun summer we had... I just realized tonight that I deleted the Chicago Neuroblastoma conference pics. I hate when that happens. Oh well, I better get some sleep. Tomorrow is another day.
Please continue to pray for our friends. So many kids in treatment and families impacted by cancer. Too many Friends around us dealing with it too. I'm so thankful for all the help that we have had along the way, I can't believe we have made it to kindergarten! Hooray! Sept. 9th will be 5 years since Diagnosis for Sean. He still has a bit of something there, along his spine, but we are watching it, and it doessn't seem to be growing. I'm sure I'll want to check another urine soon just for peace of mind.
God Bless, Love, Ellen
XO

Friday, August 8, 2008 11:47 PM CDT

August 8, 2008

Today marks 4 years since my Dad died. Non-small cell lung cancer. One of his favorite poems was "Don't Quit". He also taught us the "Kelleher's don't quit!" I've adapted it a bit and tell my kids that "Hanson's don't quit!" This is just one of many "Poppie-isms." (Poppie is what the grandkids called him.) "Poppie-isms" are the saying, poems, lessons that he repeated to all of us over and over. There were so many that we actually named them "Poppie-isms." An example is when I try to park someplace and it is crowded. Dad always said that there would be a place right at the front door... Well, my kids now encourage me to “keep looking Mom, remember the ‘Kelleher parking system!’ Sure enough, there is ususally one spot right in front of the door. Anyway, It's late, so here is one of Poppie's favorites...he lived and died by these rules, and most often found the silver lining...

Don't Quit

When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest, if you must, but don't you quit.
Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don't give up though the pace seems slow--
You may succeed with another blow.
Often the goal is nearer than,
It seems to a faint and faltering man,
Often the struggler has given up,
When he might have captured the victor's cup,
And he learned too late when the night slipped down,
How close he was to the golden crown.
Success is failure turned inside out--
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far,
So stick to the fight when you're hardest hit--
It's when things seem worst that you must not quit.
- Author unknown

God Bless you Dad, I miss you so very much.
I Love you,
Love, Ellen and the kids
Scott A., Kathleen, Sean and Heather

Saturday, July 26, 2008 7:52 AM CDT

July 27, 2008
Visit Nikki's blog, She is doing a blogathon, blogging for the www.bandofparents.org for Neuroblastoma. The site looks great! Please check it out and make a donation if you are able. Thanks Nikki! God Bless, Love, Ellen

http://bloggingforkids.shebecameabutterfly.net/

July 26, 2008

Chicago
Last weekend I was able to attend the Children's Neuroblastoma Cancer Foundation's Parent Conference. I have been going since 2004. I'm always a bit sad that Papa Scott never got to go, since we had purchased tickets that year and planned on going together. Instead I ended up taking Little Scott as he was sad and missing Papa and would not leave my side.. It is always great to see old friends from my Neuroblastoma family, and to make new friends too! We are all very lucky that the Doctors from all over the country are willing and able to come and give parents the latest information in research and available treatment options. There is a concurrent Grief session for Angel parents and it is nice that I get to keep in touch with the Angel parents that I have grown to love too. I stopped in to get some tips to help me and the kids with our own grief related to losing Papa and Darcie was great. I'll be contacting her to see what other resources she knows about that might be of use to us. Thankfully I know most of the folks in the session really well and knew they wouldn’t mind if I joined in for a bit. I have either met some of their kids or gotten to know them from their web sites. It is very sad that so many children continue to die despite ongoing efforts to come up with better treatments. Katie's mom Michelle who I met last year was not able to go as Katie is now at home in Hospice. Dustin and Janie both passed away this week, after heroic battles. There is also a Kids room at the conference, filled with volunteers. It was fun to sit in on a magic show and meet some of the children. I wish I could bring mine, but the cost would be to high and I'd be sure to miss a few lectures when someone wanted Mommy. If I'm buying plane tickets, I'd much prefer to bring them to Disney! Thanks to Christen and Gavin for making all my travel arrangements and driving us from the airport in their rental car. It was nice to see Melissa outside of the Ronald McDonald house of NYC, where she has been living for over 3 years... Thanks Pat for all your continued efforts for everyone. It is great to put the names and faces together as many of us already "know" each other from the NB lists. Thanks to Ruth and Auntie Katie for baby-sitting at home so I could go. I know the kids had a great time!

Summer
Scott is attending Cotuit Kettleers baseball camp. The guys are great and it is good for him to be around the boys! It's fun for all the kids when we go to the games. They usually get an ice cream or some popcorn and cheer on the team. The coaches let the kids help pick up the bases and clean up the field, riding in the golf cart, pictured above. They even like to help Coach Robert's clean up in the dugout! They play catch, run the bases and get as many autographs as they can! Mom gets to watch great baseball and everyone has fun!

Kathleen, Sean and Heather go to Whiz kids while Mommy looks for a job, hoping to get one with "mothers hours." Baby-sitters are hard to come by and expensive. They come home with piles of coloring pages to show me. Kathleen has callous's and blisters from the monkey bars and fire pole. Sean usually has a head full of sand. Heather tells stories about her new friends. It's fun to hear of all their adventures.

I'm hoping to get to NH again before school starts to see Grammy and Uncle David, etc. Our friend Rellie is home and working on some preparations for her wedding in October. She is my best friend Stephanie's niece. Steph also passed away in 2004. We met in high school when I moved to Cape Cod. She is Sean's Godmother. All the kids are in Rellie’s wedding. It happens to be right after the kids birthday so we will be crazy that week! It's all magical to be experiencing through the eyes of a child. It will be here soon, as summer sure seems to by flying by.

Thanks for stopping by to check on my family and our friends. I hope everyone is enjoying summer and making fun memories. Please continue to pray for our friends, and to support NB research. There is still a long way to go and research needs funding. The Conquer Childhood Cancer act has passed in the Senate and will go on to the President. Thanks to everyone who helped with this effort.

God Bless,
Love, Ellen
XO

Tuesday, June 10, 2008 2:42 PM CDT

June 9th, 2008

Alex's Lemonade~

National Alexs Lemonade Days and Our Friends
We had our Alex's Lemonade Stand for Saturday June 7th, at Botello Lumber, Rt. 28, Mashpee, Ma. (Cape Cod) Thanks to my faithful co-Lemonade host Joyce for getting it all together for us while we went to soccer and baseball. I can't remember how many stands we have been a part of, but we are in our 4th year with multiple stands/year. The kids were old enough this year to really help out. They chased folks down with Lemonade and Cookies looking for donations. It was very cute, I hope the customers saw it that way. They were so innocently looking for donations. There was a lot of team work, with one holding a cup and another pouring. Very impressive. Of course just putting on the yellow shirts inspires excitement and then blaring of the Lemonade Song. We ended up with about $450.00. It is great fun to see which folks make a special trip just to see us and make a donation, or to see the generosity of a stranger. Thanks to my Niece Christa for bringing them home, all sugared up to play in the sprinkler while we cleaned up. Special thanks to Botello Lumber for once again allowing up to hold our Lemonade Days stand at their store.

My Friend Heather's stand in Methuen, Ma. was over $1100.00 at last check.

My sister Katie will be hosting one at Madbury Days, in Madbury, NH on June 14th.

My friends Jan and Joe not only visited our stand with a donation, but are also hosting one also on June 14th at Cedarville Shaw's supermarket in Plymouth, Ma., 10am-6pm. This stand will be complete with face painting, raffles, and lots of other fun activities. If you are in the Plymouth area, come on down. We plan to.

You can go to www.alexslemonade.org to see how to find an Alex's Lemonade Stand in your area, or how to host your own stand. It's easy and fun and so many kids with cancer need your help now. You can still donate directly from Sean's site or at Alex's site in his honor.

Thanks everyone for helping kids! Sadly many of our good friends have passed in the last few weeks. Spencer, Emily, Courtney and too many more. Others are enduring harsh treatments with harsh side effects. And those that survive, are doing all that they can to help their friends. Like Maddy Lewis in Amesbury, Ma. Hoping to once again be in the top 100 money making Lemonade Stands. Maddy is a 7 year NB survivor. And Don't forget the money from Alex's Lemonade goes to all kids cancer, as Alex realized that all kids want their tumors to go away.
So many kids need your help. Survival from high risk neuroblastoma with recurrence is very low and new treatments are way over due. There presently isn't enough funding for research. This can happen to any child, at any time, and happens much too often. Not only does it effect the child but also the parents and siblings. It is a family disease. Thanks for everyone who continues to help the cause by holding stands and to all the kind and thoughtful folks making donations.

First Communion
Scott made his First Holy Communion. We had a party back at the house and pretty much celebrated his bday that day too. Grammy came from NH as well as my sister Katie and family. Scott had a great day. Of course I was missing Scott a bit and the priest even mentioned that some of the kids had parents that had gone on ahead of them. I was very proud of Scott and I know that Papa is too.

Scott's 9th bday
The next weekend on his "real" birthday we all went to Toys-R-Us and he went on a Lego shopping spree. Mostly Indiana Jones sets. I figured this cost less than another party with too much sugar and stress. It was his idea and he had a good time. He also got the triple set of Indiana Jones movies for his bday from Carol and Bob. He has spent hours with his legos as he and Sean work on all the pieces and set it all up for an adventure. Later we had a few friends over to dinner. Of course he needed balloons and a game of pin the tail on the dino..this year.

Baseball
Scott is enjoying Little League and doesn't want to miss a game or practice. It is a great group of kids and parents and we all have fun. Soon school ends and Cotuit Kettleers baseball starts. It is Cape League baseball and the guys are great. He has camp the first week which is really fun because we all get to meet the players, and that makes watching the games so much more fun!

Soccer And Sandy Neck
The triplets are playing soccer. They are all good and have a lot of fun. Sean is very serious about being a "defender." Kathleen like to play goalie, and Heather just likes to play. Grammy was able to see both baseball and soccer games while she was here, as well as to take a trip out to Sandy Neck beach where I can let air out of the tires and drive down the beach. It was a great day and she really enjoyed it. Nice too because we were the only ones on the beach. We even found a sand dollar.

Postcards
Thanks to everyone who is taking the time to send Scott and his class postcards, (address above), for their class project. It is a great way for the kids to learn geography and about places and people around the world.
They are in the last week of school. When I find out which states they are missing I'll post it. Scott gets to keep the one's addressed to him and has quite a collection by now. Thanks so much for taking the time.

Thanks for checking on my family and our friends.

Prayers Please for our friends and their families..
Janie-http://www.caringbridge.org/visit/janie

Please sign the guestbook and say hello, I can see the hits go up but don't know who is checking on us...Thanks,

God Bless,
Love, Ellen
XO

Sunday, May 11, 2008 4:30 AM CDT

May 24, 2008
Happy Birthday to Scott! You are the best son and big brother ever. I'm so very proud of you! Papa is very proud of you too. God Bless you my son! Love, Mommy

May 17, 2008
First Holy Communion for Scott today! Many thanks to his catechism teacher, Mrs. Prygocki.

Next week (5/24) is his Birthday.

May 12, 2008
Our Pal Emily passed away peacefully today. She has been healed in Heaven. Please say a prayer for her sister Mary Grace, as they are twins. Emily shared her Flat Stanley school project with my kids as they are also Multiples. The kids had a lot of fun with the project. Sean said that he would love to be flat and travel around the world in an envelope. If I were flat, I would send myself to Florida and give a big hug to Mary Grace and her Mom and Dad. Also her classmates at school. Please say a prayer for our friend and her family.
http://www.caringbridge.org/fl/emilyadamson

May 10, 2008
Today is the day that Papa went to Heaven. I can't believe it has been 4 years. Sometimes it feels like forever, and other days I still can't even believe it is real. I didn't do much today to mark the day as we remember Papa everyday, and Scott does not like to dwell on it as it makes him too sad. I went to the cemetery yesterday alone and left flowers. Scott only likes to go there when we can "work" and yesterday it was raining. Papa would understand. Scott cried at bedtime and said he missed Papa's warmth. I do too. He put on one of Papa's t-shirts to warm him up and was fast asleep in minutes. Thanks to everyone who has given us so much love and support and continues to help us in so many ways. Thank you to Carol and Bob for thinking of me and for the gorgeous spring tulips that happened to arrive at just the right time.

Mother's Day
Happy Mother's Day to everyone. I've gotten my gifts early this year, as the kids are so excited, it seems to be Mother's Day weekend. Scott made me a beautiful candy dish with his "Big Brother" Tom today. It's made from beads of plastic and then heated into a dish. He was very excited and couldn't wait for me to open it. He told me about why he chose or did not choose each color. He also came home with yummy looking Mother's Day muffins all ready for our breakfast. The kids made drawings with thoughts on "My Mom". Each remembered that I like chocolate. Sean and Kathleen had my age as "91" and "81". Most days it feels like that! Heather had me at "33". They are very cute and are laminated so that I can look back at them when I really am "91". I've gotten many cards with love hearts all over them and others that we have to cut out in the shape of a love heart. Scott brought me home flowers he planted at school but thought that he really ought to take care of them since mine don't do so well. Kathleen, Sean and Heather also brought home plants from school, and it's not even Mother's Day until tomorrow. I wonder what the day will bring. Probably lots of squeezes (hugs) and kisses. Please remember especially today all the Angel Mom's who have lost their children and have to go on without them, as well as all the Mom's who are helping their children fight cancer and other illnesses.

Alex's Lemonade
Both Baseball and Soccer were canceled due to the rain. I had read about a thoughtful young man who was holding a Lemonade Stand and so we donned our Lemonade shirts and off we went. Chris Igo Jr. had heard about Alex from his Dad who works at Stacy's Pita Chips. Stacy's donates chips to be given out at the Stands. (I first tried them at one of our stands and now I'm addicted to the Garlic flavor.) Chris is 16 years old and races a minicup car, a 1/2 scale version of a NASCAR cup car. The kids love our Alex's Lemonade Stands and are getting to be professional Lemonade Hosts. It's fun to watch them get dressed up in Yellow and Pink Lemonade colors and sing the Lemonade song. We met Chris and his Dad and the kids had a great time climbing in and out of the race car while pouring themselves Lemonade and drinking it all. We learned about the races at Seekonk Motor Speedway and they sound like great fun on Friday nights. Chris even has the Alex's Logo painted on his car with his own version of the tag line, "Fighting Childhood Cancer one Lap at a time". It was a pleasure to meet them and we'll look forward to taking in the races. Thanks Chris for helping to raise awareness of Childhood Cancer and for helping kids! Thanks also for letting my kids climb all over your car and have an exciting day! For more about Chris see http://www.igoracing.com/index.html

National Alexs Lemonade Days and Our Friends
We have booked our Alex's Lemonade Stand for Saturday June 7th, 8am.-2pm. at Botello Lumber, Rt. 28, Mashpee, Ma. (Cape Cod)
My Friend Heather will be hosting one on Sunday, June 8th, 10am-4pm. at 192 Hampshire St. Methuen, Ma.

My friend Maddy Lewis will be hosting one Sunday June 8th at 12n, at 81 Congress St. Amesbury, Ma.

My sister Katie will be hosting one at Madbury Days, in Madbury, NH on June 14th.

My friends Jan and Joe will be hosting one also on June 14th at Cedarville Shaw's supermarket in Plymouth, Ma., 10am-6pm.

Please stop by and say hello if you are in the area, or go to www.alexslemonade.org to see how to host your own stand. It's easy and fun and so many kids with cancer need your help now.

Thanks everyone for helping kids!

Postcards
Thanks to everyone who is taking the time to send Scott and his class postcards, (address above), for their class project. It is a great way for the kids to learn geography and about places and people around the world.


Thanks for checking on my family and our friends, Happy Spring!

Prayers Please for our friends and their families..
Emily-http://www.caringbridge.org/fl/emilyadamson
Janie-http://www.caringbridge.org/visit/janie
Spencer-http://www.caringbridge.org/canada/spencer


God Bless,
Love, Ellen
XO

Thursday, May 1, 2008 7:54 PM CDT

May 6, 2008
It's been a very bad week in NB world. Please pray for our friend Emily, her twin sister Mary Grace and her parents Diane and Dave. We have had the pleasure of meeting them in NY. Mom is a nurse too and of course we both have multiples. Emily's NB is rapidly progressing and she is in the hospital on hospice care.
http://www.caringbridge.org/fl/emilyadamson

Also please pray for the family of my Nurse friend Chris. We worked together in Boston for many years. She passed away on Friday from Lung Cancer.
God Bless, Love, Ellen


May 5, 2008
Two little warriors gained their wings this weekend. www.caringbridge.org/visit/cooperproscia
and www.caringbridge.org/visit/courtneysaunders.
Bless their families.
love, Ellen


May 1st
We had a nice April School vacation. We went to the beach with our friends and had the best time. We even got a little sunburn. Sean likes to collect Clam shells and any other treasures we may come across. We found a huge buoy on the beach, drift wood, a bottle with no message, etc. It was warm enough to have a picnic, even though we do that all winter anyway. Next we decided (last minute) to go to NH to see Grammy. She didn't even know we were coming. We got sandwiches on the way and had dinner with Grammy and Uncle David. We got to check out Grammy's new patio~the shop out back lost it’s roof with the record snowfall and Uncle David has been taking it down, leaving a big slab of cement. Kind of sad to see it go. Next we went shopping for clothes X 4 for summer. Everyone got a bathing suit, sandals, etc. We stayed at our favorite place, the White Mountain Hotel in N. Conway, NH and everyone enjoyed the nice warm outside pool! We know the staff well, as my Dad did some business there and we have been going there for many years. It is so comfortable, and everyone there helps out and takes great care of us. On the way home we stopped at Auntie Katie's unexpectedly. She had to go out, but we stayed and ate and played with Maisy, her dog anyway.

Today is May 1st
It is the last day to burn, so while the kids were in school I burned what was left of the huge piles of logs and brush. This was Scott’s job, so even though I was glad to see things cleaned up, it was a little sad. The kids were in school so I didn't have my usual 4 distractions from reality. I even mowed the lawn and raked leaves.

Later we delivered the May Baskets the kids made in preschool. This was really fun and one of those times when it is extra special to have triplets. Each one filled their basket with chocolate kisses and choose a neighbor to deliver it too. The idea is to ring the bell or knock and run away. If you get caught you might get a kiss! The first house was Kathleen’s. These neighbors weren’t home but we left the cute little basket between the door. The next house was Sean’s choice. These folks didn't open the door right away, and it was hysterical to watch Sean and Scott take turns, and telling us, “I’m goin’ in!” The girls and I hid in the bushes watching. Lots of giggles as the door was finally opened and our neighbor could not imagine where the lovely basket arrived from. At the third house, Heather got cold feet and needed her big brother Scott for assistance. Of course he was a pro by now as he loves espionage and now had experience! These neighbors also didn't open the door right away, and we could see them looking out the window. More giggles as our neighbor thanked the “girls”. They have “girls” across the street, so the kids thought it was very funny that we “fooled” them, as we have “girls and boys” and live “down” the street. We we got home everyone went to their rooms to get in their jammies. To their sheer delight, there was a knock at the door and each received a tiny version of a May basket. They caught me though and I had to get lots of Kisses! Heather got me back a little later leaving me a chocolate kiss and getting caught on purpose, and Sean having eaten ALL his treats, surprised me with a quarter! He also got caught and Kissed!
Thank you Mrs. Blackwell and all the pre-K teachers for providing us with a very fun and exciting May Day! Thanks to our wonderful neighbors too for being good sports! See Pics.

Birthday Month
Happy Birthday to Libby, Tiffany, Auntie Debbie, Cousins Keith and Ashley, Ellie, Rose, Jenn and Sue.

Baseball
Little League has started and Scott got his new uniform! He is sleeping in it “again” tonight. His team is the Rivercats, and he has the same coach from last year which is great for Scott. He does not do well with change. How lucky is that! (See Pic)

Triplet News!
We had our first family bike ride down our street without training wheels! It was a big day! The kids are happy and I am blessed!

Postcards
Thanks to everyone who is taking the time to send Scott and his class postcards, (address above), for their class project. It is a great way for the kids to learn geography and about places and people around the world.

Please continue to pray for Austin and his family. He passed away at home on April 24th, see prev post. Also please pray for Emily, Katie, Dylan and all our NB friends and family.

Angel’s Hope Walk
Please join Angel’s hope in Harwich, Ma. this Saturday for the annual Walk for Hope. Angle’s Hope supports families of kids with cancer. Martha lost her own son Michael to a brain tumor. Everyone there has been wonderful to my family. Please join in the walk or make a donation if you can. www.angelshope.org

Thanks for checking on my family and our friends, Happy Spring!

God Bless,
Love, Ellen
XO

Saturday, April 5, 2008 6:41 PM CDT

May 1, 2008
Angel's Hope Walk is Saturday at 930am.
www.angelshope.org
Please help Angels Hope help families of children with Cancer.


April 25, 2008
Austin passed away last night~Cancer free, and surrounded by his family. He and his family never gave up and exhausted every possible treatment option. He is the youngest of 5 children who have incredible parents, both of whom are pediatricians. Please say a prayer for Brave Austin and his family. http://www.caringbridge.org/visit/austinmelgar

Tyler Stolp also passed recently, please say a prayer for his family as well.
http://www.caringbridge.org/visit/tylerstolp
God Bless, Love, Ellen

April 16, 2008
Dylan will have the rare opportunity to meet the Pope! Stay tuned at www.dylanhartung.net We are very excited for him!

April 5, 2008
Easter
We had a nice Easter weekend with another NB family. Dylan and his brother Cain along with Mom and Dad, Melissa and Tim were able to travel from the Ronald McDonald House in NYC to our house on Cape Cod. They are from Australia and have been living at the Ronald McDonald House for, I think it is over 3 years. I was thrilled that it all worked out and they were able to get away for a visit. They took the train and I picked them up in RI. The boys had planned months ago to play with nerf guns out in the yard, and that is just what they did as soon as they got here. We were able to get out to the beach, and although it was cold, the kids all had a great time climbing the sand dunes and collecting shells. Tim spread woodchips in our back yard and even did some burning. I took that opportunity to teach the kids about smores, Of course I had to taste a few, yummy! Melissa helped Scott to clean up and organize his toyroom. He loves his new space and has room to make forts. (He made a nice one today and we all watched TV in it.) We had fires in the fireplace each night and we all went out to dinner one night. We colored some easter eggs a
nd just hung out. The Easter bunny found all the kids and hid eggs all over the yard. All the kids got along well and seemed to really enjoy each others company. We hope they will be able to come again soon. Scott seemed to really miss Papa, I’m not sure if it is because he got to hang around with Tim for the weekend, or if his cleaned up toy room reminded him of watching TV with Papa. I think maybe both. I miss Papa too. He always says he misses his warmth and sometimes even sleeps with a hot water bottle to be warm and cozy.

Special Friends
Thanks to the special friends who made an extra effort to remember the kids this Easter. Carol and Bob and Mara and family sent the kids some very special goodies. Even the Easter Bunny sent the kids each a special card from Toledo, Ohio! Of course they love to get special treats in the mail, and Mom really appreciates the thoughtfulness and generosity!

The Tooth fairy
Heather has lost another tooth! She has a very cute lisp. Kathleen has a very wiggly one and will probably be next. They were all very excited and went to bed early so that the Tooth fairy could come~and she did~

Birthday Month
Happy Birthday to Libby, Tiffany, Auntie Debbie, Cousins Keith and Ashley, Ellie, Rose and Jen

Postcards
Thanks to everyone who is taking the time to send Scott and his class postcards, (address above), for their class project. It is a great way for the kids to learn geography and about places and people around the world.

Our Friends
Please continue to pray for our friends. Dylan-www.dylanhartung.net,
Austin-www.caringbridge.org/visit/austinmelgar Emily-www.caringbridge.org/fl/emilyadamson Katie-www.caringbridge.org/visit/katiekrize Tyler-www.caringbridge.org/visit/tylerstolp and so many more. Please pray for the family of Emin who is from Finland and passed away recently.
Special thanks to Auntie Debbie for checking in on Austins family and on attending his prayer service in VT. She told me about a beautiful rainbow that she saw outside the church.

Thanks so much for stopping by and checking on my family. I’m trying to figure out how to support us and what to do with 4 kids for the summer. I’m sure I’ll work it all out.

God Bless,
Love, Ellen
XO

Thursday, March 20, 2008 7:15 AM CDT

March 28, 2008
Please continue to pray for Austin and his family. His condition has worsened and his family is in need of prayers.
http://www.caringbridge.org/visit/austinmelgar

March 20, 2008

I finally got the results of Sean’s urine catecholamines and both are within normal limits. He is now 4.5 years from diagnosis. That is great news.

New Hampshire
We took advantage of a shorter school week, (teacher conferences), to go to NH and see Grammy. They have had tons of snow in NH. We have only had rain, in just about every storm. Sadly the building behind her house that we call the “shop” could not handle all the snow and ice and the roof caved in. I guess this was not an uncommon problem this year. She even had to have the roof of the house shoveled. The kids love to go see grammy and play with the toys at her house or learn to sew, (knit). They also love to play in the snow. Next we went to the hotel where my Dad used to do business. The White Mountain Hotel. We have been going for years and they know us there. The staff is all very helpful, and I feel comfortable going there with the kids alone. Scott made friends with a boy from Canada named Nish. They had a wonderful time, roaming the hotel, doing magic tricks and playing Ping-Pong. We went skiing at Cranmore where Uncle David works. The kids took skiing lessons and Scott took a snowboard lesson. Mom took a few leisurely runs, but mostly checked out what the kids were learning. By the end of the day though, Scott was sick. Back at the hotel, he was very sick. He also wanted quiet. The only choice was that he be brave, so I took the kids to dinner and ran back and forth to check on poor Scott. He was sick overnight, but still wanted to ski. I ended up taking him to the medical center in case it was strep. The little ones went back in a lesson. The strep test was negative and we decided it was best to stick with Mom for today, and by noon, Scott was back on ski’s. We made a miraculous recovery. At the end of the day, we found the kids, and thankfully, we also found our new friend Nish. Scott took Sean, Nish took one of the girls and I took another and up the lift we went. I was so happy to see that all of them could ski! And very well. So up and down and up and down we went. Mommy trying to keep them off jumps and out of the woods, as it is the first day and they don’t all have helmets, etc. It seems their young instructor thought it was fun to go over the jumps in the woods...yikes. They had the best time! I was really missing Scott, as he was the skier in the family, and it was a sunny beautiful day. He would have been so proud to see them all skiing. I thought of him all day, and hope that he was with us in spirit. It was nice to have lunch with his brother, Uncle David at the top of the mountain. The kids were pooped! Back at the hotel, we went straight to the pool and dinner before they fell asleep and we couldn’t. Scott stayed up late with Nish, doing magic tricks for other folks staying at the hotel. This night, all was well, and no one else was sick. We got up, and went back in the pool before heading home. Another great trip to NH. We never got to Jackson to see our friends there. A long day of skiing was as much as they could handle. I love that hotel because the pool is always warm and there is a restaurant in the building, not to mention, that everyone is there to help me if I need it.

School
The kids all got good news at their conferences and are doing fine in school.

Easter
This weekend, we are having company. We will have the pleasure of seeing Dylan and his family, and not at the Ronald McDonald House of NY. Instead, they are coming here for a weekend away. In fact, they are on the train now, and I’m picking them up in Providence this morning. Dylan and his family are from Australia. Dylan has high risk Neuroblastoma and has been living at the Ronald for over 2 years. To meet him see www.dylanhartung.net Im sure Dylan and Cain with have a great time, and I can’t wait to see Tim and Melissa. Better go get everyone off to school.

Conquer Childhood Cancer Act
Please help us pass the CONQUER CHILDHOOD CANCER ACT. This bill authorizes $30 million annually for five years to support pediatric cancer research. Imagine hearing your beloved son or daughter has cancer. 12,400 US families will hear these words each year. 35,000 US children are in active cancer treatment and 2,300 will die annually.

This is unacceptable when you consider we've spent 500 billion on a war overseas. 150 million over 5 years for the Conquer Childhood Cancer Act seems like a "drop in the bucket" in comparison. On the plus side, we have 52 wise senators supporting the CCCA. We need 8 more to reach 60, a majority to help pass this landmark legislation. Please honor those children that have been fighting for their lives and those who have earned their wings by taking 5 MINUTES to e-mail SENATORS that are NOT yet CO-SPONSORS. If this bill is not passed by 2008, it dies and we're back to square one.
Here is a list of states that need sponsors...Alabama (2), Alaska (2), Arizona (2), Colorado (2), Florida (2), Idaho (2), Iowa (2), Kansas (1), Louisiana (1), Maine (2), Mississippi (1), Missouri (2), Montanna (2), Nevada (1), New Hampshire (2), North Dakota (2), Ohio (1), Oklahoma (2), Oregon (1), Pennsyvania (1), South Carolina (1), South Dakota (1), Tennessee (2), Texas (1), Utah (2), Virginia (1), West Virginia (2), Wisconsin (2), Wyoming (2).
This brings us closer then ever to passage of this legislation.
Send a letter to your Member of Congress urging them to vote to pass the Conquer Childhood Cancer Act.
If you have a CaringBridge site, please copy and paste this info to your site. If you know someone who lives in one of these states, copy and e-mail it to them. If you're feeling ambitious, lead a letter writing campaign in your state that needs co-sponssors. One grandma sent out thousands of copied letters to family/friends in other states. All they needed to do was sign the letter and mail it in.
You can send an electronic letter at
www.curesearch.org
"The greatest use of life is to spend it for something that will outlast it." - William James (1842 - 1910)

With hope and thanks,
Love, Ellen Hanson

Please keep Emily, Austin, Katie and all our friends in your prayers.
God Bless, Love, Ellen
Happy Easter~
XOXO

Tuesday, February 26, 2008 1:42 PM CST

March 5, 2008
More good news for Austin~the cancer in his bone marrow has gone from 100 percent NB to 15 percent NB in 2 weeks! As his Dad said, Whoo Hooo! http://www.caringbridge.org/visit/austin melgar

Katie is feeling better too! Her tumor tissue was 50 percent dead and she is feeling better and laughing again!
http://www.caringbridge.org/visit/katiekrize

Please continue to Pray for Austin, Katie and Emily. I've met all 3 families. Thanks! Love, Ellen

March 4, 2008
Happy Heavenly Birthday to my Dad.

Amazingly good news for Austin and his family. Please continue to pray for them. It is so nice to be able to share good news!
http://www.caringbridge.org/visit/austinmelgar

March 3, 2008
Please say a prayer for our friend Emily-7yrs. She was diagnosed with NB at the same time that Sean was. We met them in NY after already becoming friends online. Emily has a twin sister, Mary Grace, and Mom Diane is a Nurse, (like me). They have just gotten news that Emily's cancer has very suddenly progressed rapidly and there are not options at present. They will be doing some radiation in hopes of keeping her comfortable. Please say a prayer for Emily and her family and for our friends Austin and Katie too. Their websites are below in the previous narative.
http://www.caringbridge.org/fl/emilyadamson
God Bless, Love, Ellen

February 26, 2008
Sorry for the delay in update. Getting into the back to school after vacation routine.

We’ve been to New York for Sean’s check up and everything went well. Thankfully, my friend Ruth came along. I’m pretty sure I would not have been able to do it without her. The kids were better about taking turns and sharing the 2 strollers. Ruth had not been to NY in years, so we tried to hit the high points. We went to Toys-R-Us and Times Square. We totally timed it wrong and so were unable to eat at Mars 2012 or Ellen’s Starlight Diner and returned to our old standby Finegan’s. We went out to breakfast and ran into Joanne and her grandkids. She is a good friend and it was fun to go to the Park with her and her grandkids. They had a great time playing together. Scott brought his scooter and loved using it on the streets of NY. The kids only got to use it when we were in the parks. We went on the Staten Island Ferry and hung around at Battery Park. The weather cooperated and it was almost 60 degrees! We made it into the Central Park Zoo which the girls had not seen before. Sean was tired and a bit naughty and it was great having 2 adults! He had to go outside and sit with the Sea Lions for a bit! We got hot dogs from a street vendor and peanuts too. We got to the Disney Store and FAO Schwartz, but they were too tired to get to the American Girl store, we’ll have to save that for next time. We walked by Rockefeller Center and Radio City Music Hall. We even got to watch the NYFD in action. There was a small wall fire in a store front. Lots of firemen to watch and just enough action to entertain the boys, and Mom. They painted hundreds of pictures in the playrooms at Ronald and at Sloan. I got to meet a few more families that I had only known online, and to visit with old friends too.

Sean was very brave getting his “tubie” and blood work. It is just part of the routine for him now. He sticks his arm out and looks forward to riding around on the IV pole. Scott was a great big brother and held his hand. The propafol stung going in, unfortunately he remembers that part and talks about it. He is getting older and asking more questions now, like “what if I wake up?” We got to talk to Dr. Kushner briefly in the hall and to see Dr. Cheung the next day. The MRI is basically unchanged. There is still something at L3-4. They didn't seem too interested in getting an MIBG or PET. I’d like to get one just to know if it is dead or alive. Anyway, it isn’t growing or shrinking at this point. We see Dr. Sklar again in August for long term effects, but they probably won’t do an MRI again until a year. His LDH continues to run a little high, but it always does, so I guess I’m getting used to that. As long as it isn’t trending up, I’m OK with it. I’m still waiting on the urine results. They usually take a week. We also got to see Dr. LaQuaglia and Carol in passing. He told me Sean is too old for a stroller. I guess he doesn't realize that it isn't really for Sean. It’s for his old mother with the bad back that is too old to carry him around after anesthesia and all over NY when he or his sibs gets tired and fall asleep on the sidewalk miles from Ronald. (It’s happened before!) We don’t use one at home! Actually, I don’t know how folks with kids live in Manhattan. I’m so used to hopping in my car...I hardly even bother with my coat at home. We got caught in the rain going to eat at Angels. The kids thought it was fun as they got to use umbrella’s while in the strollers and make a “fort”. Another item we never use at home. Luckily it was warm that night so it was not a problem. Ruth drove on the way home and I had the luxury of sitting in the back snuggling with the kids and watching movies. A little sad too, as that’s what I did when they were babies and got fussy and Papa was driving. Not an option now... We made it home in record time and got to settle in before school started on Monday.


Scott's class Postcard Collection
Last year was the first time a card was received from every state! Please help these 1st and 2nd graders to learn geography, reading and writing the fun way!
Scott Hanson
Mrs. Keenan's Class
MMEHMCPS
760 Osterville/W. Barnstable Rd.
Marstons Mills, Ma. 02648
Thanks to everyone who participated last year!

Thanks for checking on my family. Please continue to pray for us and for our friends.
http://www.caringbridge.org/visit/austinmelgar-back in Vermont for treatment after rapid progression of disease.
http://www.caringbridge.org/visit/katiekrize-just home from Vermont and also being treated for rapid progression.
God Bless, Love, Ellen
XOXO

Wednesday, February 6, 2008 1:16 PM CST

February 20, 2008
Please pray for Eden and Harrisons families. Two more Neuroblastoma Angels.

Sean's testing is done, but not results yet. Everything went smoothly and the kids are having a great time in NY. They don't want to go home! Sean was very brave getting his "tubie" in and it just seems routine to him. Scott is playing video games and the kids are painting, making pizza and playing in the toy room while we wait for an official "tummie check" with Dr. Cheung.
Thanks for checking on us. More later!
Love, Ellen

Please pray for the family of Carter Moore. He was only dx 7-8 months ago, but had aggressive disease that could not be stopped.
http://www.caringbridge.org/visit/cartermoore

February 6, 2008
We didn't end up going to NH and I lost some money on it, but it’s too much to go alone with all 4 kids. Sean’s check up is coming up and I’m sure NY with 4 kids will be adventure enough! He is actually sick this week with a fever to 103, and a headache intermittently. No one else has it (yet), thankfully. Saturday Scott had the Sacrament of Reconciliation, First Penance. I was really nervous, because he was really nervous, but he got very Brave at the last minute and did a great job! Afterwards we went to the cemetery and Lunch. I had gotten him a cake and white roses and I was surprised when he said that he wanted to bring the flowers to Papa in the cemetery. He chose one for Papa, Nana Doris and Poppie and then he ran all around spreading white flower petals so all the others folks in the cemetery could have some too! What a thoughtful boy. He doesn't usually like to go unless we are planting, raking or “working” in some form.

A Special Guest
We have the honor of having Emily Adamson’s Flat Stanley visit. Flat Stanley is the story of a boy he had a bulletin board fall on him. Now he can fit in an envelope and travel the world. The kids have had a great time with him. He got to make a snowman with the little bit of snow that we had left over, and he got to watch the Superbowl. We even got him a Patriots T-shirt. It wasn’t until later that we learned from Emily that he is really a Giant’s fan. Stanley was a good sport! He just loves Emily and Mary Grace and can’t stop talking about them. He is starting to get cold though as he had gotten used to the heat in Iraq and he keeps talking about going someplace warm....maybe Hawaii! Thanks so much Emily for sharing your Flat Stanley with the Hanson kids! (SEE PHOTO)

Scan Time
We will be off to NY for Sean's tests the week of Feb. 18th. I always get a little nervous at test time. It is a relief though when we get good news and don’t have to worry about complaints like my leg hurts or my head hurts...for a little while.

Scott's class Postcard Collection
Last year was the first time a card was received from every state! Please help these 1st and 2nd graders to learn geography, reading and writing the fun way!
Scott Hanson
Mrs. Keenan's Class
MMEHMCPS
760 Osterville/W. Barnstable Rd.
Marstons Mills, Ma. 02648
Thanks to everyone who participated last year!

Please pray for Emily www.caringbridge.org/fl/emilyadamson who has just finished a round of chemo, for Austin who is fighting relapse and the flu www.caringbridge.org/visit/austinmelgar, and for all our friends young and old fighting cancer.

Thanks for checking in on Sean and our family! And thanks for the continued prayers.
God Bless,
Love, Ellen
XOXO

Monday, January 21, 2008 1:07 AM CST

February 2, 2002~Happy Groundhog Day!

Phil Says Six More Weeks of Winter!

Phil's official forecast as read 2/2/08 at sunrise at Gobbler's Knob:

Here Ye! Here Ye! Here Ye!

On Gobbler's Knob on this fabolous Groundhog Day, February 2nd, 2008
Punxsutawney Phil, the Seer of Seers, Prognosticator of all Prognosticators,
Rose to the call of President Bill Cooper and greeted his handlers, Ben Hughes and John Griffiths.

After casting a weathered eye toward thousands of his faithful followers,
Phil consulted with President Cooper and directed him to the appropriate scroll, which proclaimed:

"As I look around me, a bright sky I see, and a shadow beside me.
Six more weeks of winter it will be!"

God Bless Scott~
This morning Scott will receive the Sacrament of Reconciliation (Penance)
My little son is growing up.

Congratulations to all the Hanson Kids on their excellent report cards!

January 21, 2008
We are settling in the the new year, and everyone is healthy.
January 16th, was the anniv of my Mom’s death, 30 years ago. I can’t believe I’m old enough to even say that. I didn't really mark the day in any special way, as Scott is getting older now and does not like to be reminded of such things. I just said an extra prayer myself. He is preparing for his first Penance in 2 weeks and then his first communion in May. He is not totally comfortable with the whole God thing and we are working on that. I’m not sure if he just thinks church is boring, or if it runs deeper than that. We are treading lightly and trying to get through his Sacraments in a Positive way.
Scott and I got go go see Blue Man Group with some tickets we got at the www.angelshope.org auction. He thoroughly enjoyed it and it was kinda fun to hear his totally unrestrained 8 year old laughter during the show. We also got to walk over to the public garden and see the Ducklings statues from the book “Make way for Ducklings”.
The weather has been pretty nice, and we keep avoiding snow. Scott has been out leaf blowing and we burned in the yard yesterday. (That is something he remembers doing with Papa, and so I’ve gotten brave and put it on my list of things to do.) We got quite a bit done and even snuck some hot dogs out for a weenie roast! I really miss Papa Scott at times like this. It’s a long weekend and I’m home with the kids. They had no school friday and have no school on Monday too. I know he would love to be here working in the yard and burning. I made hot dogs but he would have made his toasted sandwich things he always made in the iron sandwich maker that you put into the fire. The little kids helped briefly, but their real goal was to sit outside and get to drink a soda! Today is much colder. We went to church and then had a Sunday dinner and movie day.
All the kids are back in swimming lessons which they love. Scott also has cub scouts and CCD, which keeps up pretty busy. Next weekend is our timeshare weekend. I’m still trying to rent out the unit so I can go another time, if anyone is interested. It is at Attitash, near N. Conway N.H. If it doesn't rent I’ll go, since I have to pay for it anyway....It’s also the place Scott and I met on Jan 24, 1997. Lots of memories.
Sean’s check up will be coming up fast, its during February vacation, so I can take the kids. I don’t know If I have a sitter to come yet, so it could be quite an adventure!
Thanks again to all the folks who remembered my family again this year at Christmas. I am so grateful to the folks who “remember” us and understand the position that I am still in. So many thoughtful and kind folks continue to remember us in so many ways. I even had my oil change and inspection sticker covered by a very good friend of my Dad and family this week. Thanks Ed. I don’t think people can ever really understand how very thankful I am. God Bless, and A Happy Healthy New Year to Everyone.
Love, Ellen
XOXO

P.S. Please leave us a message in the guestbook so we know you were here. Thx.

Friday, January 4, 2008 8:42 PM CST

Jan 7, 2008
Please pray for Jillian and her family.
www.caringbridge.com/visit/jillianzuelsdorff

December 31, 2007 Happy New Year! 2008!
Sick kids/Christmas
All the kids took turns, some even twice, being sick with random illnesses. The net result was that I was way behind on Christmas Shopping and Wrapping. Kathleen had pneumonia, Heather had resistant strep, Sean had an ear infection, and all 4 had colds/coughs. We missed Christmas at my sisters in NH. We missed Christmas at my best friends families house on Christmas Day. Heather even missed Christmas Dinner, sound asleep and with a high fever. She had chicken noodle soup later and was just as happy with that. In fact, the other kids all joined her. (I hope this will not be a new tradition!) Auntie Gael came over on Christmas Eve and read the night before Christmas to us. Dad always did this, but Gael is the matriarch now! She helped us all spread Raindeer food on the lawn, and we checked the night sky for signs of Rudolph's nose. Scott tracked santa online all day until we say that he was headed over from Uncle Brian's in London to Ireland, and we knew it was really time for bed. Thanks to many elves, when we woke up, it was evident that Santa had been to our house. He had cookies and milk and even a few puffs of Poppies Pipe~ Kathleen, Heather and Sean got new guitars, pronounced “ca-tar”. Kathleen had ordered a pink one, but seemed pleased with the red ones she and Heather got. Sean got a black one. Scott got lots of Spy Gear. He also got a safety helmet from our arborist friends, at the Tree Doctor in Falmouth. This I learned doubles as a hunting, spying, and battle piece of attire. He ran around the house shooting things and generally had a wonderful time.
Thanks to so many wonderful elves....everything got done. Thanks so much to our friends at MOST-mothers of supertwins, Keeping Pace with Multiple Miracles and the Kern Family, and our friends at Sotherby’s Real Estate in Osterville for their continued support. Thanks also for all the other elves who made contributions to our swingset/Christmas efforts.
A few more days at home, playing and taking antibiotics and it was off to Grammy's for Christmas in New Hampshire. This is usually a great adventure because Grammy has lots of snow! The kids went sledding, built a cool snow fort with Uncle David and were pulled all around the yard in sleds by snowmobile. They were dripping wet, but kept putting their clothes in the dryer and going out for more. Sunday I did a little shopping as Scott had blown out his boots. We got back to a bonfire and more snowmobile trips. Grammy even hitched a ride out to the fire by snowmobile. I was very glad that I had left a pair of snowshoes here! Auntie Debbie and and I went out for a snowshoe walk into the forest and around the little pond that grammy has each day. It is so peaceful and pretty in the woods in winter. At bedtime I always tell the kids a story about the bears who live on Grammy's mountain. There are usually about 5 or so bears, and it usually reflects our own day somehow. They love to hear what Grammy's bears are up to. We are expecting more snow tonight, so I’m not sure on when we will be coming home. The kids all want to stay! That’s a sure sign of a nice Family Christmas..

January 4, 2008
On the way home poor Heather was sick again, 2 minutes from home. I think she must have just been car sick, she seems fine now, finally..
Even with everyone sick, we had a great Christmas, I’m very aware of how lucky we have been and how well Sean is doing. His next check up is in February in New York. A Happy Healthy New year to everyone. It means so much to me that so many continue to think of my family as time marches on, and we continue to live each day adjusting to living without Papa Scott. (Especially at Christmas time.) Thanks again to all of Santa’s Elves, we believe!
God Bless,
Love, Ellen and the kids

Friday, December 14, 2007 8:52 AM CST

January 4, 2007
www.bandofparents.org on Good Morning America (cut/paste)
http://abcnews.go.com/Video/playerIndex?id=4069205&affil=wabc

December 20, 2007
The new swingset is here. The kids were busily spreading woodchips under it yesterday after school. They love it and I do too! Hard to tell by the photo, but Kathleen has pneumomia, Sean has poison ivy, Scott was up all night vomiting. I think this happened last year too.... UGH. At least this was delivered a little early and didn't need wrapping.
Love, Ellen

December 14, 2007
Happy Birthday Uncle Brian!
Band of Parents www.bandofparents.org
The Cookies for Kids Cancer sale was great and all the cookies have been sold. Thanks to so many folks very hard work to pull off such a feat in a short time for the kids! Donations of course will still be accepted. Funds are directed to a new treatment being made available at Sloan due the the fundraising by Neuroblastoma parents. The current plan is to “humanize” the 3F8 antibody which is currently derived from mice, so that more kids will have this as an option.

Lunch for Life www.lunchforlife.org
It's that time of year again! Check out www.lunchforlife.org You can purchase an "ornament" for Sean's giving tree. For each $5.00 donation the child receives an ornament and a chance in a drawing to win a trip to Disney. Each donation produced a "giving code" that can be passed on. Donations made with the "giving code" produce additional ornaments. Sean's code is 207075. The funds raised benefit the Children's Neuroblastoma Cancer Foundation (www.cncf-childcancer.org). This is the group that hosts the Neuroblastoma Family Conference that I go to in Chicago. They also raise needed funds for Neuroblastoma Research. Neuroblastoma is rare, underfunded, and too often very aggressive and fatal. The treatments are harsh. We have lost too many friends to Neuroblastoma in the 4 years since Sean was diagnosed. Sean now has 21 ornaments on his giving tree! Thanks! The kids love to check the tree and see it “light up.”

Thanks so much to everyone for supporting all our NB/Cancer causes. These kids do not have time on their side!

Christmas
The tree is up and the house is decorated. Im trying to wrap while they are in school. Actually, we all had a family meeting and agreed that it would be OK for Santa to help Mommy to purchase a swingset this year.
They know not to have high expectations under the tree, as Santa has so many children to get presents too, and a swingset is so big that even Mommy has to help pay for it. My arborist friend was here yesterday removing some trees to make a new play area for the kids. It was a 1/2 day for Scott and the kids had no school. Scott was having so much fun, I let him skip school. He had the best day ever, as he got to help fell some of the big trees. He wore a protective helmet with ear protection. He learned how to take down a tree, and how not to. He learned how to tie a rope and both he and Sean were very helpful raking and carrying brush for clean up. They got to see the chipper in action. These kids LOVE to work. (And the boy time is good for them.) The girls were happy to watch from the window. Next we got a big snow storm. Everyone went out and made snow angels and Scott was playing “extreme snow sports”, like dumping snow over his head, and telling the kids to not “try this at home.”

Thanks for checking in on Sean and all my family. I really appreciate so many folks taking care of us in so many ways. The kids are happy and we are so lucky to have so much love and support. Please continue to pray for all of us and for our friends.

God Bless, take time to enjoy the season, 10 days left!
Love, Ellen
XO

Friday, November 23, 2007 0:16 AM CST

December 13, 2007
Cookies for Kids’ Cancer News from the site...

"Today a mother's dream came true…to bake and sell 96,000 cookies to provide hope for her son and all of the other children fighting neuroblastoma. Due to the overwhelming support of so many generous people we are happy, and sad, to announce we have sold all of our cookies.

It has been an inspiring effort by so many and we are humbled by the response to our cause. Our goal was to raise a small part of the $2 million needed to fund the development of a new treatment at Memorial Sloan-Kettering Cancer Center for our children. With the dedicated help of hundreds of volunteers and generous supporters, we have managed to do just that.

We have a long way to go to reach the $2 million needed to fully fund the project and to realize the dream of providing better odds of survival for our children. Please consider making a donation in lieu of cookies by visiting our donation page. (www.cookiesforkidscancer.org)

Words cannot express our thanks enough, but here it is: Thank You.

We wish you and your family the happiest and healthiest of holidays."

December 11, 2007
Cookies for Kids on CNN
www.loneliesthour.org, click on CNN Video link

So glad to be seeing some press for Neuroblastoma, and hoping it helps to raise the much needed funds for our friends. (Notice I'm planning on Sean staying healthy,despite the fact that I had labs and urine tests sent today!) Dr. Cheung in the video is one of Sean's Doctors in NY!

December 8, 2007
New York Times
Cancer-Fighting Cookies

Shipping now: 96,000 (that’s 8,000 dozen) citrus shortbread, chocolate chip oatmeal, and snickerdoodle cookies for $30 a dozen from cookiesforkidscancer.org. From each sale, $26 goes directly to Memorial Sloan-Kettering Cancer Center, for research into pediatric neuroblastoma. Ingredients, work space, cold storage and labor were all donated by volunteers and New York City baking luminaries like Jacques Torres; recipes are from Sally Sampson, a cookbook author.

***Make your donation for kids now, and enjoy some yummy cookies or share them with a friend!


December 5, 2007
Thanks to everyone who is helping to decorate Sean's www.lunchforlife.org tree. He now has 13 ornaments and thus chances to win a trip to Disney! Don't forget to use the code below to for extra ornaments and chances, and thanks so much to everyone. Thanks also to our friends who are ordering yummy Cookies for Kids Cancer, or shopping at http://www.igive.com/welcome/warmwelcome.cfm?c=43475 for band of parents. God Bless, Love, Ellen

Monday 11/26 URGENT COOKIE NEWS!
I need to know if anyone is ordering cookies as they need an estimate for the dough. Please email me the # of boxes you will be ordering. Great news on shipping, the price has been decreased to $8.50 for the first box, $2.00 for additional boxes and free over 25 boxes.
Thanks so much for supporting our friends who so desparately need a new option.
Love, Ellen

Friday, November 23, 2007 0:16 AM CST
November 22, 2007
Happy Thanksgiving!
We have so very much to be thankful for. We had a nice day. A big breakfast. We raked and cleaned up the cemetary, which had lots of limbs down from the last storm. We visited with friends and then lit the fire and had a big feast! Kinda silly with one adult. Scott did have 2 servings also. We stayed up late in Mommy's bed watching movies and had a late night snack of pumpkin pie. Thanks to our neighbor Sylvia. Sean kept telling me he "ordered" that kind. Thanks to Rose for the Apple Crisp and to everyone who remembered my Birthday which is actually Saturday. (We usually celebrate it on Thanksgiving.) Thanks to everyone who helped us out with gift cards and a yummy Turkey for Thanksgiving. I very much appreciate everyone who remembered my family once again. The kids are happy and healthy despite a little cancer, and I'm so lucky to be able to snuggle in with the 4 of them and watch a movie. (I just need a bigger bed, they are getting so grown up!) The Tooth Fairy should be here again soon. Sean has another very loose tooth, and Kathleen has 3 that are wiggly. Heather still has a ways to go. Of course I have been missing Scott, Scott A. has been missing his Papa lately too, but then, we always will... I'm still so thankful that I met him and shared so much with him in a short time.
God Bless, Love, Ellen

November 20, 2007
Cookie update:
Shipping will be billed at $11 for the first box and an additional $2 for each box shipped thereafter. Orders of 25 boxes are shipped free. Thanks!
See next journal entry for cookie info.

Lunch for lIfe www.lunchforlife.org
It's time to decorate Sean's tree! He already has 5 ornaments. If you use the giving code 27075, extra ornaments are generated, and also extra chances to win a trip to Disney World. (I would love to win that, I'm dying to bring them while they are still young.) The funds support The Children's Neuroblastoma Cancer Foundation who does great things for all of our NB families.

Please get your cookie orders in ASAP as they are ordering the dough on Monday!

Thanks for helping us, and thanks for helping kids with cancer!
God Bless, Love, Ellen

Sunday, November 18, 2007 9:29 AM CST

November 20, 2007
Cookie update:
Shipping will be billed at $11 for the first box and an additional $2 for each box shipped thereafter. Orders of 25 boxes are shipped free. Thanks!


November 18, 2007

Band of Parents www.bandofparents.org
The band of parents, are a group of parents of children with Neuroblastoma. Neuroblastoma is an “Orphan” disease and is grossly underfunded. This group has banded together to raise awareness and funds for Neuroblastoma. In a very short time this group has done amazing things. Currently the group is working with the team of Doctors at Memorial Sloan Kettering in NY to develop novel therapies. The Dads of the www.loneliestroad.org have raised over $600,000. The website is up and running including the BOP online store. Many families around the country and the world are working together raising funds and awareness both individually and as a group.

Monday, November 5, 2007 3:28 AM CST

November 5, 2007

Once again it has been a long time since my last update. We had a very busy October. We were able to visit with another NB family from Dallas, and we were also visited by our special online friends Carol and Bob from California. These great folks adopted my family a few years ago, and we were finally able to meet them. We all went to the Boston Bruins hockey game where we were treated to Patrice Bergeron’s private suite. Scott, Sean and friends had a great time. The grown-ups did too! I got lots of great pictures and all my kids are now hockey fans! The girls stayed home where they had two tea parties and we brought them home new Bruin teddy bears. We all have Bergeron T-shirts and hats and wear them watching the games. Sadly, our new friend Patrice “37” got slammed into the boards a week later and is out with a broken nose and a concussion. We sure hope he is feeling better soon. It was so great to meet him and he was so nice to all of us! Next we got ready for fall by visiting Plimoth Plantation where the Colonists stay in character in the year 1620 and there is a Wampanog Indian village. We also toured the Mayflower and the famous but unimpressive Plymouth Rock. Bob even prepared a fall feast for everyone at our house. It is so nice to have put the names and faces together after all this time. Thanks so much guys for all the fun and memories!

Halloween
Scott and Sean were cowboys, Heather was a cowgirl and Kathleen was a “Pink Cat”. They galloped up the road on horses with Scott firing his cap gun to announce our arrival. I mentioned to Kathleen that Pink Cat’s don’t ride horses, and she very confidently told me, “This cat does!” Wow! Everyone got lots of candy and had a great time. We ended up with extra candy as we didn't get home in time to hand any out, oops! I even had luminaries ready. Next year, I’ll have to leave a bowl out.

Angel’s Hope www.angelshope.org
Sunday night we went to the Angel’s Hope Spread the Light Auction. Angel’s Hope is a local organization that helps families of kids with Cancer all over New England. See www.angelshope.org Sean is the Ambassador for 2007. The kids had a great time. Scott especially liked holding up his card and bidding on items. He also bid on some silent auction items and kept getting up to check on them. He was so excited!
Sean, Kathleen and Heather took to the stage. They enjoyed choosing the tickets for door prizes. Thanks so much to my sister Gael, Jen and Ruth and everyone else for coming out and supporting Angel’s Hope. They have really done a lot for our family! It was great to see everyone from our Angel’s Hope family.

Band of Parents www.bandofparents.org
The band of parents, are a group of parents of children with Neuroblastoma. Neuroblastoma is an “Orphan” disease and is grossly underfunded. This group has banded together to raise awareness and funds for Neuroblastoma. In a very short time this group has done amazing things. Currently the group is working with the team of Doctors at Memorial Sloan Kettering in NY to develop novel therapies. The Dads of the www.loneliestroad.org have raised over $600,000. The website is up and running including the BOP online store. Many families around the country and the world are working together raising funds and awareness both individually and as a group. The Cookies for Kids fundraiser will be ready soon....

Thursday, October 18, 2007 9:32 PM CDT

October 29, 2007
Grace Oughton is free. Her Dad Alec is one of the www.loneliestroad.org Dad's who rode his bike across the country to raise awareness and funds for NB. Alec, Crystal and Big Brother Landon, I am so sorry. Your family is an inspiration to all of us. Bless you sweet Grace,
Love, Ellen and the kids.
www.savegrace.com

October 27, 2007
Please say a prayer for our new pal, Boston Bruin Patrice Bergeron. He was knocked unconscious in the first period of the game tonight. We had the honor of meeting him and watching the game from his private box last friday night.
October 29, 2007
Patrice Bergeron suffered a broken nose and a concussion. He was discharged from the hospital on Sunday. We hope he is feeling better and back on the ice soon!

October 18, 2007
My gosh the time goes by, sorry it has been so long since I have updated the site.

Please pray for Lucas Tran and his family, he gained his wings this week. Also please pray for Grace. Her Dad Alec is one of the www.loneliestroad.org Dad’s who rode his bike across the country to raise awareness and funding for NB. Grace’s disease has progressed and she is now home with brother Landon and her family.

Washington D.C.
Scott and I went to D.C. with some other Cancer families to meet with our congresspersons. There was a press conference w/Rep. Deborah Pryce who co-sponsored the Conquer Childhood Cancer Act 2007. The legislation would authorize the appropriation of $30 million for each of the fiscal years 2008 through 2012 for childhood cancer. Please contact your Senators and Reps. There is contact information at www.loneliesthour.org under advocacy. Our kids can’t wait!
We had a nice trip and saw lots of old friends and met some new. I saw a friend, Joe who I just met in Chicago. Sadly, I learned that his daughter Lydia passed away on September 8th. A stark reminder of why we were there. Sean is doing fine, and I felt it a duty to go because there are so many children who are sick and have parents tending to them and cannot go. Dr. Kushner, Sean’s oncologist from Sloan Kettering was also there. We were able to take a tour of the Capital while we were there. Scott and I had an abbrieviated tour of the area. We were very lucky that my cousin Gerry and Wayne were able to pick us up and drive us by all the sights and to the hotel. We stopped for lunch and even went to the new Spy Museum! Scott was very pleased with his new secret message decoder. Thanks so much Gerry and Wayne. Thanks for everyone’s hard work to set up the meetings and arrange the trip. We were not able to stay for the arrival of the www.loneliestroad.org dads on Saturday, as we had to be home for an Alex's Lemonade Stand at Scott’s school.

Alex's Lemonade Stand
September 29th
Scott’s Multiage (1st-2nd grade) class held an Alex's Lemonade Stand at Marstons Mills East Elementary School during their Fall Fest. The kids worked in teams and made posters and artwork to advertise the stand. Children helped to set up the stand, poured lemonade, applied tattoes to each other, listened to the Lemonade Song, and generally had a wonderful time. They made over $550.00 dollars. They also counted and sorted the money on Monday. Thanks so much to Mrs. Keenan and Mrs. Rome, and all the students in Scott’s class for their contribution to the Alex's Lemonade Stand Foundation and for helping kid with cancer.

The Loneliest Road-www.loneliestroad.org
The Dads from the Loneliest Road campaign are home. The trip raised awareness and funds for Neuroblastoma and for research at Sloan Kettering related to the humanizing of the 3F8 antibody. There is much more to be done. We had the pleasure of meeting some of these families while in D.C. and have been following their stories. Please pray for Grace, the doctors have told here family that there is nothing more that they can do for her. She had been treated in Boston in the past and I had been following her story. I had the pleasure of meeting the family in NY in August. Meet all the families at www.loneliestroad.org Also check out the www.bandofparents.org

Coins4kids-www.coins4kids.org
Every penny makes a difference! Get a coins 4 kids piggy bank for your home or office! Each piggy even has a name! Visit this great site to see how else even pennies can make a difference for kids with neuroblastoma. Sean had the honor of being the July “kid of the month”. Here you can see photo’s and stories of some of our dear friends.

The Loneliest Hour (http://www.loneliesthour.org)
I’ve started a new web site to connect families that are newly diagnosed with Neuroblastoma to the resources that they may need. It is great to have everything linked in one place. I used to have to go to my list of web sites and go from there. I depend on my friend Jeb, who is the computer expert to get the job done. I really feel that it is a necessary “Jumping off” place for the newly diagnosed. Check it out and let me know what you think. It is early, and I think it will be fluid also. Let me know if you find things that you wished you knew at diagnosis and we will see if we can post or link them. It’s a fun project. I wish it was there back when I was saying “Neuro-what?”

Sean’s test results-Great News!
MRI-”No evidence of disease recurrence or progression when compared to August 22, 2006...
Stable minor contracted L3-L4 neural foraminal soft tissue most compatible with treated disease-scar.”
Urine catechomalines-Within Normal Limits
Neuro-Psych-Advanced in most area’s, needs OT to work on his fine motor skills.
His next set of tests will be in February.

More news~The Tooth Fairy!
Sean is very funny “Still” telling everyone we meet about his “News”, one tooth missing and another loose. He is very proud that he is growing up like his big brother and buddy Scott.

Me and the kids
We have been keeping busy. We went back up to see Grammy and to celebrate the kids 5th birthday. We went to see the Sandwich Fair, saw pumpkin people in Jackson, to Sherman Farm to see the pigs and cows, to Tibbetts Pumpkin Patch, which didn't have the usual crop this year, but we still got lots of gourds and even some corn stalks. We even went apple picking for the first time. Scott loved using an “apple rake” to get the apples from up high. All the kids (and Mom) had a great time. They also had a horse, ducks geese, chickens, etc. We had a great time, and the folliage was beautiful.

Kathleen, Sean and Heather are playing soccer. They are really starting to get the hang of it, and it is so much fun to watch!

Scott has started his CCD classes and seems to be enjoying them. He is doing well in school and seems to like it.

This week we are looking forward to going to a Boston Bruin’s hockey game. Thanks Carol for setting that up for us. I feel bad, but I’m not taking the triplets as it is a night game and 70 miles from home. I’ll try to take them another day. I am bringing two of my best friends who have kids Scott’s age. They will have a great time. These 2 families have really helped me these last few difficult years, and I’m looking forward to having some fun with them as well as our internet friends Carol and Bob who I am looking forward to meeting. Thanks once again to my friends at home caring for the kids so that we can go!

5 years old!
I am so blessed to still have all 3 kids here 4 years after the diagnosis of NB for Sean. October 10th was the 4 year anniversary of his big surgery, 11.5 hours. I’m so glad looking back that Papa was there with me. I can’t believe how old and grown up they are getting. I wish he was here to see them growing up. They are all smart, funny, mischievious, cute, and so on. They work together with Scott on all sorts of projects. They are my helpers too and I love them all to “Heaven and back”, as Heather would say.

Thanks for checking on Sean and my family, and for praying for us and our friends. I miss Scott and pray daily for continued strength and courage. (I also pray for a magical nanny to show up at the door!) Please remember all the kids and families fighting cancer, and do whatever you can to help raise awareness or funding!
God Bless,
Love, Ellen
XOXO

Check for new photo’s! They are all getting so big. Scott is 8yrs. and Sean, Kathleen, and Heather were 5 years old in October!

Sunday, September 23, 2007 9:49 PM CDT

September 23, 2007

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH!

Alex's Lemonade Stands
Thanks to Margie and Janelle for hosting another great Alex's Lemonade Stand at Marstons Mills Village Day! Thanks to everyone who volunteered or donated! My kids had more fun at Village Day than anyone else in town! Scott befriended the Blacksmith, and ended up “working” with him all day. Mostly I didn't watch, he loved it, but I was scared. Kathleen, Sean and Heather had a great time serving Lemonade, and then danced the afternoon away.

September 29th
Scott’s Multiage (1st-2nd grade) class will be holding an Alex's Lemonade Stand at Marstons Mills East Elementary School during their Fall Fest on September 29th from 12pm-3pm. Come on down for a nice cool glass of Lemonade and support these kids, helping kids.

If you cannot make it to the stand you can still donate through the link above.

The Loneliest Road-www.loneliestroad.org
(Not to be confused with the Loneliest Hour site which is for newly diagnosed Neuroblastoma Families-(see below), the Loneliest Road is about 5 Dads cycling across the country to help all of our kids.)

“On September 10th, 2007, five fathers will cycle 3700 miles across the United States, from Sacramento California to Washington DC. Their mission is to raise awareness and money for cutting edge treatments that can be used to fight an aggressive childhood cancer called neuroblastoma - a cancer that all of their children fight.
Neuroblastoma is very rare. Because it is rare, treatment options are limited and funding for these cutting edge treatments does not flow freely from large non-profit organizations. The funding for research and development of new therapies comes from parents and families like these, who are faced with limited options to save their children.
We ask that you join us and help raise the funds needed to save our kids. We can't do it without your help. We would like to invite you to follow our journey, to record the ups and downs, and to get the message out that we are willing to do anything to raise this money to help our daughters and sons. Travel with us on The Loneliest Road.”
See website to read the blog and see how you can help!

Coins4kids-www.coins4kids.org
Every penny makes a difference! Get a coins 4 kids piggy bank for your home or office! Each piggy even has a name! Visit this great site to see how even pennies can make a difference for kids with Neuroblastoma. Sean had the honor of being the July “kid of the month”. Here you can see photo’s and stories of some of our dear friends.

The Loneliest Hour (http://www.loneliesthour.org)
I’ve started a new web site to connect families that are newly diagnosed with Neuroblastoma to the resources that they may need. It is great to have everything linked in one place. I used to have to go to my list of web sites and go from there. I depend on my friend Jeb, who is the computer expert to get the job done. I really feel that it is a necessary “Jumping off” place for the newly diagnosed. Check it out and let me know what you think. It is early, and I think it will be fluid also. Let me know if you find things that you wished you knew at diagnosis and we will see if we can post or link them. It’s a fun project. I wish it was there back when I was saying “Neuro-what?”

More “NEWS”~The Tooth Fairy!
Sean lost his first tooth and the one next to it is wiggly! This was last month, but he still tells everyone we see his “NEWS!”

Thanks for checking on Sean and my family, and for praying for us and our friends. Please remember all the kids and families fighting cancer, especially in September, and do whatever you can to help raise awareness or funding!
God Bless,
Love, Ellen
XOXO

Check for new photo’s! They are all getting so big. Scott is 8yrs. and Sean, Kathleen, and Heather will be 5 years old in October!

Friday, August 31, 2007 1:20 AM CDT

September 18, 2007
Please pray for James Runde who is free in Heaven after a 2.5 year battle with Neuroblastoma. I had the honor of meeting them at Sloan. Also pray for Austin and Katie who have both progressed through treatments.

September 15, 2007
Remembering Papa Scott today on his birthday. Happy Heavenly Birthday Papa! We love you and we miss you every day. How lucky I am to have met you and had you in my life. How lucky I am to have our kids, each a part of you. Please watch over us, and the other Dad's on the Loneliest Road this week~
God Bless,
Love, Ellen


September 13, 2007
You can follow along with our friends traveling the "Loneliest Road" on You tube at http://www.youtube.com/results?search_query=loneliestroad
You can follow their blog at www.loneliestroad.org and click on blog at the top right. Please donate and pass on the links to your friends. Thanks, Love, Ellen

Thanks so much to everyone who helped or contributed to the Alex's Lemonade Stand in Marstons Mills. It made about $250.00 for childhood cancer research. Thanks to Janelle and Margie and your families for another successful stand!


September 9, 2007
Today is 4 years since Sean was diagnosed with with Neuroblastoma. I know how very lucky I am that he is here, and healthy to celebrate this milestone. We celebrate today by visiting our Neighbors Alex's Lemonade Stand. Visit us in Marstons Mills, or donate today above. Even a $1.00 donation helps. When life gives you Lemons, make Lemonade!


August 30, 2007

Please pray for the Boyte family. Lillie passed away on August 28th. She was a sweet little 3 yr. old girl who we stayed next door to on this last trip to Sloan. Her sister Hannah is 5 and played with my kids. She also has a new baby sister Eva. Lillie had an aggressive form of Neuroblastoma and a cure was not to be had. She is at Peace. http://www.caringbridge.org/visit/lillieboyte
Also please pray for the Swift family. Madison is from Ma. She passed away August 22nd from complications re: to her transplant for Neuroblastoma. http://www.caringbridge.org/visit/madisonswift

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH!

September 9th will be 4 years since Sean was diagnosed with Neuroblastoma. It was the day that changed all of our lives forever. Thankfully, Sean is doing fine. He is one of the very lucky ones. Neuroblastoma is the third most common childhood cancer. It can be extremely aggressive. Over 70r children already have metastatic disease at diagnosis. Over 50f children with High Risk Neuroblastoma will relapse. There is no know cure. We have met too many children who have died in the 4 years since Sean was diagnosed. So much more needs to be done. Please help us help our friends and support the folks who fund research for childhood cancer.

Alex's Lemonade Stands
September 9th (The day Sean was dx with Cancer in 2003)
Our neighbors and friends Janelle and Margie will be holding an Alex's Lemonade Stand on Sunday, September 9th from 11am - 2pm. They will be hosting the stand during Marstons Mills Village Day on Main Street (# 2145) across the street from the Marstons Mills Public Library and Liberty Hall.

September 29th
Scott’s Multiage (1st-2nd grade) class will be holding an Alex's Lemonade Stand at Marstons Mills East Elementary School during their Fall Fest on September 29th from 12pm-3pm.

If you cannot make it to one of the stands you can still donate through the link above.

The Loneliest Road-www.loneliestroad.org
(Not to be confused with the Loneliest Hour site which is for newly diagnosed Neuroblastoma Families-(see below), the Loneliest Road is about 5 Dads cycling across the country to help all of our kids.)

“On September 10th, 2007, five fathers will cycle 3700 miles across the United States, from Sacramento California to Washington DC. Their mission is to raise awareness and money for cutting edge treatments that can be used to fight an aggressive childhood cancer called neuroblastoma - a cancer that all of their children fight.
Neuroblastoma is very rare. Because it is rare, treatment options are limited and funding for these cutting edge treatments does not flow freely from large non-profit organizations. The funding for research and development of new therapies comes from parents and families like these, who are faced with limited options to save their children.
We ask that you join us and help raise the funds needed to save our kids. We can't do it without your help. We would like to invite you to follow our journey, to record the ups and downs, and to get the message out that we are willing to do anything to raise this money to help our daughters and sons. Travel with us on The Loneliest Road.”
See website for more details!

Coins4kids-www.coins4kids.org
Every penny makes a difference! Get a coins 4 kids piggy bank for your home or office! Each piggy even has a name! Visit this great site to see how else even pennies can make a difference for kids with neuroblastoma. Sean had the honor of being the July “kid of the month”. Here you can see photo’s and stories of some of our dear friends.

The Loneliest Hour (http://www.loneliesthour.org)
I’ve started a new web site to connect families that are newly diagnosed with Neuroblastoma to the resources that they may need. It is great to have everything linked in one place. I used to have to go to my list of web sites and go from there. I depend on my friend Jeb, who is the computer expert to get the job done. I really feel that it is a necessary “Jumping off” place for the newly diagnosed. Check it out and let me know what you think. It is early, and I think it will be fluid also. Let me know if you find things that you wished you knew at diagnosis and we will see if we can post or link them. It’s a fun project. I wish it was there back when I was saying “Neuro-what?” We have just added a guestbook, so please leave your thoughts and ideas there, or just stop in and say hello!

Sean’s test results-Great News!
MRI-”No evidence of disease recurrence or progression when compared to August 22, 2006...
Stable minor contracted L3-L4 neural foraminal soft tissue most compatible with treated disease-scar.”
Urine catechomalines-Within Normal Limits
Neuro-Psych-Advanced in most area’s, needs OT to work on his fine motor skills.
His next set of tests will be in February.

More news~The Tooth Fairy!
Sean lost his first tooth and the one next to it is wiggly! He whispers to me whenever we see someone, well everyone and anyone actually, to please tell them “the news”. It is very, very cute! He had lots of Tooth Fairy ?’s and I was glad when he finally fell asleep. The Tooth Fairy did know where he lived, and in which bed, and under which pillow to find his tooth etc. She was very generous and he got some “funny money”, just like his big Brother Scott gets! (Dollar coin, $2.00 bill, .50 piece) He is a little young to be losing his teeth and doesn't really get the value of his “rich stuff” like his brother does, but he is very excited to tell everyone the “news”!

Me and the kids
We are squeezing in lots of summer fun. We went to NH to see Grammy and Uncle David. We went on some short hikes in Grammy's forest, and to a waterfall. We went on a gondola ride to the top of a mountain and visited friends. We stayed at our favorite hotel where my Dad used to do business and went in the pool and hot tub. On the way home we went to Ogunquit, Me. We walked along the ocean and had lunch at Perkin’s Cove. I had been there with Dad, and on my 40th Birthday with Scott and Little Scott. August 24th was my anniversary and it was nice to be in places with the kids, that I had been to before with Scott. We walked over the pedestrian drawbridge there. Heather did not like the bridge going up with her on the wrong side! While trying to distract her and get her to stop screaming I turned quickly and walked full speed into a beam on the bridge and gave myself a very pretty black eye! Just in time for the start of school and to meet the kids new teacher! Very nice! My distraction technique worked wonders but my face is purple and green and the bump still hurts! I had been calling her “boo boo”, as she seems to be the one to always get hurt. I guess she takes after her mother! Back to school is going smoothly as Scott has his same teacher’s in his multiage class, and the kids are in their familiar preschool classroom with a new teacher and some friends from last year. They even have the same bus driver, hooray! I’m pretty sure this is about as easy as it will get for back to school.

Thanks for checking on Sean and my family, and for praying for us and our friends. I miss Scott and pray daily for continued strength and courage. (I also pray for a magical nanny to show up at the door!) Please remember all the kids and families fighting cancer, especially in September, and do whatever you can to help raise awareness or funding!
God Bless,
Love, Ellen
XOXO

Check for new photo’s! They are all getting so big. Scott is 8yrs. and Sean, Kathleen, and Heather will be 5 years old in October!

Friday, August 31, 2007 0:54 AM CDT

August 30, 2007

Please pray for the Boyte family. Lillie passed away on August 28th. She was a sweet little 3 yr. old girl who we stayed next door to on this last trip to Sloan. Her sister Hannah is 5 and played with my kids. She also has a new baby sister Eva. Lillie had an aggressive form of Neuroblastoma and a cure was not to be had. She is at Peace. http://www.caringbridge.org/visit/lillieboyte
Also please pray for the Swift family. Madison is from Ma. She passed away August 22nd from complications re: to her transplant for Neuroblastoma. http://www.caringbridge.org/visit/madisonswift

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH!

September 9th will be 4 years since Sean was diagnosed with Neuroblastoma. It was the day that changed all of our lives forever. Thankfully, Sean is doing fine. He is one of the very lucky ones. Neuroblastoma is the third most common childhood cancer. It can be extremely aggressive. Over 70

Sunday, August 19, 2007 9:19 PM CDT

August 19th, 2007 Happy Birthday Grinch!
Please pray for the family of Angel Carter Finger www.carterfinger.com and our new pal Lillie Boyte, http://www.caringbridge.org/visit/lillieboyte who is suffering from very aggressive disease.
Thanks, Love, Ellen

Sean
MRI-”No evidence of disease recurrence or progression when compared to August 22, 2006...

Stable minor contracted L3-L4 neural foraminal soft tissue most compatible with treated disease-scar.”
Urine catechomalines-Pending

New York-Con’t
Wednesday Aug 8th.
Well, sorry it took so long for the rest of the update! We set off in the early am from 73rd. street headed for 33rd street for one of Sean’s appt’s. What we didn't’ know is that there was a tornado in Brooklyn and that the bit of thunder I heard had something to do with a major downpour and complete flooding of all the subways. Therefore, one could not get a cab. Well, not knowing this, and will 4 kids and a sitter in the very hot and humid air, I kept walking but then stopping to try to hail a cab. Well we arrived by foot over an hour late for the appt. Apparently, everyone else was late too and it was no big deal. We did invent a way to get an 8 year old and a couple of 4 year olds on one stroller and another 4 yr. old on the other one. Poor Heather kept getting stuffed in the basket under the stroller which I very affectionately called “the caboose”. Sean and I endured the neuropsych eval while the others entertained themselves in the hot/humid air outside! Back at Ronald, I decided not to leave until after traffic. My helper had a bit of heat/kid exhaustion and so the kids and I headed off to Central Park. They wanted to see the Balto statue. The story of Balto the sled dog was one of my Dad’s favorites, and so this was most important to the girls, as the boys had already been. To see the history of Balto..(http://en.wikipedia.org/wiki/Balto) Anyway, off we went with Scott as my fearless helper with Heather as his fearless cargo. First we went to Central Park Zoo where I realized I was out of cash. Next we negotiated a few blocks in NY to find a bank and get cash. I couldn’t use the ATM, as I don’t know my own codes.. That all worked out and we walked by the toy soldiers at FAO. I’ll save that for another day. Back at the park we ate at the zoo, but were too late to go in. Next we found Balto and took many photo’s. We also found the Boat house, Alice in Wonderland and Hans Christian Anderson for more photo op’s. Back at Ronald with everyone intact, it was time to finish packing and get my car back. It was a pizza/craft night and that helped immensely. the kids ate with Alysa, who had regrouped, and made shinny sticky things that I had to pack at the last minute. My car is still sticky and sparkling, but most of the creations got stuck together and had to get thrown away...oh well, there will be other scan weeks, (I hope!) Off we went. The ride home was long as I forgot to make sure everyone went to the b-room. First it was Heather and Sean, and a happy meal. Next Scott woke up and had to go. Another happy meal, and so on. I hate “stopping” when I travel with kids. It can more than double the time. We got to RI to find a major not well marked detour. Thankfully Alysa, knows this area. Eventually, we made it home..sweet home. Lots of fun memories, and most importantly good news for Sean. We met lots of friends who we had been following online too. Please continue to pray for our friends. Especially, Lillie and Grace.

The Loneliest Hour (http://www.loneliesthour.org)
I’ve started a new web site to connect families that are newly diagnosed with Neuroblastoma to the resources that they may need. It is great to have everything linked in one place. I used to have to go to my list of web sites and go from there. I depend on my friend Jeb, who is the computer expert to get the job done. I really feel that it is a necessary “Jumping off” place for the newly diagnosed. Check it out and let me know what you think. It is early, and I think it will be fluid also. Let me know if you find things that you wished you knew at diagnosis and we will see if we can post or link them. It’s a fun project. I wish it was there back when I was saying “Neuro-what?”

Thanks for checking on Sean and my family,
God Bless,
Love, Ellen
XOXO

Wednesday, August 8, 2007 2:13 AM CDT

August 18, 2007
Please pray for Carter Finger and his family. Carter passed away tonight. We had the pleasure of meeting Carter and his family at Ronald in NY a number of times. I also had the honor of spending time with his Mom Rhonda in Chicago. www.carterfinger.com
Also please pray for our new friend Lillie, who has progressed and is planning to return home from NY soon with her family. http://www.caringbridge.org/visit/lillieboyte

August 8, 2007

Sean's Great News!
MRI-”No evidence of disease recurrence or progression when compared to August 22, 2006...

Stable minor contracted L3-L4 neural foraminal soft tissue most compatible with treated disease-scar.”
Urine catechomalines-Pending
Labs-Alk phos and LDH are a little elevated, but have been in the past.
Thanks to everyone for their prayers for Sean. NB can be such an aggressive sneaky disease, I'll probably never not be concerned, as it can come back. For today, I am just thrilled. The longer we are out the better the chances that it will not come back. I look back at his baby pictures in the hospital and know how special every day with him is!
(Bad as he is.., as Poppie would say.)
Each of them is a gift!


New York
Saturday
Our ride to NY was uneventful. I didn't stop at all, and that makes all the difference. My friend Melissa met us at the door. She has been living at The Ronald McDonald house with her son Dylan for over 2 years. This week her husband Tim and son Cain were able to join them, as they have moved to New York. Welcome to America Tim and Cain! We all went to dinner across the street.
Sunday
Sunday we were off to show Alysa and the girls a bit more of NY. We started at the Staten Island Ferry where we could see the Statue of Liberty, great views of the city, huge cargo ships and even a fire boat in the harbor. Next we were off to Ground Zero. We stopped in to remember firefighters and others lost on 9/11 at FDNY Station 10. I’ve been to Ground Zero and station 10 every year since we first came to NY for Sean’s surgery. When I was there with Papa Scott is “03” it was still closed. I went with Tiffany in “04”, Little Scott in “05” and “06” and now with Alysa and the kids in “07”. It is a working station with a nice memorial area. They leave the doors open and the guys are very friendly answering ?’s and even posed for pictures with us. Next we went into St. Paul's which is a church at Ground Zero. There they still have things people have left at the site in memory of family and friends. When the church was renovated, they kept the benches where firefighters and others came to rest or pray. There are dents and scuff marks from boots. They left them untouched in the restoration to remember 9/11. We got back to Ronald in time to go to a Brooklyn Cyclones Minor League Baseball Game. The kids were less interested in the game and more interested in the food and surroundings. We got to ride in a real NYPD Police Van with Officer Rick and Mike from Ronald. I enjoyed the sightseeing along the way and Scott even got to sit up front. The field is located at Coney Island. It was fun to get a glimpse of Coney Island, Nathan’s Hot dogs and even the Cyclone Roller coaster.
Monday
Monday, my feet hurt from walking. The burn on my foot is still sore and not completely healed. The kids played in the playroom at Ronald and then we went to Sloan to see Dr. Sklar. Sean is growing and doing fine in terms of Long Term effects as he had minimal treatment with only one round of chemo and the surgeries. We will see him again Next year. Next we went to the local park to see Kathleen's favorites, a pair of Elephant Statues that are fountains in summer. It started to rain, so it was back to Ronald to play and have dinner. We are staying in the room next to Lillie and the kids are having fun playing with big sister Hannah. We met some other friends that we have known for a long time “online”, but had not met.
Tuesday
Tuesday am. we were off to Sloan for Sean’s MRI. He was once again very brave about getting a “tubie” in his arm for anesthesia and contrast. He let the girls have a ride on his IV pole. The kids all love the playroom and had a long day there. Sean arrived back from MRI with a bright red face and arms. This hasn’t happened before. After a while it seemed to go away on it’s own. Around 3pm. when we hadn't seen Dr. Kushner I decided to leave. Just as I was about to take out his IV, I noticed him turning bright red again. He got some benedryl and we waited around until 430pm. By now the kids were coming unglued, and so we left without ever seeing Dr. Kushner. They did give me his MRI results and all his lab work and called later to check on Sean. I left his IV in in case of emergency, and he got another dose of Benedryl at 9pm. and seems to be fine. His Alk Phos and LDH are a little elevated, but have been in the past, and the MRI is basically unchanged. (Hooray!) We ate “noo-noo’s (noodles) in New York” across the street. The kids were tired and fussy, but a little ice cream helped to resolve it.

Big Brother
Scott has been the best big brother. He brought candy and army guys to put on the desk at Ronald. He calls the Army Guys, Sean's Troops and tells me that they blast cancer cells. We also thought that the kids who aren't allowed to eat could have a toy instead. He has been giving Heather piggy backs when she complains that her feet are tired, as I have 3 kids with little legs and only 2 strollers. We have also figured out how one of the kids can climb underneath in the basket for short periods in what is now called "the caboose". I'm sure it looks funny, but at times, It works!

The Loneliest Hour (http://www.loneliesthour.org)
I’ve started a new web site to connect families that are newly diagnosed with Neuroblastoma to the resources that they may need. It is great to have everything linked in one place. I used to have to go to my list of web sites and go from there. I depend on my friend Jeb, who is the computer expert to get the job done. I really feel that it is a necessary “Jumping off” place for the newly diagnosed. Check it out and let me know what you think. It is early, and I think it will be fluid also. Let me know if you find things that you wished you knew at diagnosis and we will see if we can post or link them. It’s a fun project. I wish it was there back when I was saying “Neuro-what?”

Prayers
Please continue to pray for our friends. Grace, Nick, Lillie, Dylan, Bronson, Austin and Chloe are all here in NY.
Please continue to pray for Sean and our family. Today is 3 years since my Dad passed away and went to Heaven to be with my Mom who died when I was 16. I really miss Dad when I'm in NY too, as he was so concerned about Sean and would call me every day. He wanted to come help me, but he was suffering himself from lung cancer. I know we have Angels watching over us and I am blessed. We have an early am appt. so I best get to sleep.

Don't forget to look for new photos!

Thanks for checking on Sean and my family,
God Bless,
Love, Ellen
XOXO

Friday, August 3, 2007 1:32 AM CDT

August 3, 2007

Sean
It’s time for another check up for Sean. This trip will include a long-term effects visit, an MRI to check on the residual something near his spine and a neuro-psych eval as well as blood work and urine testing for catecholamines. He looks fine and is full of energy and mischief!
It seems as though many of our friends will be at Ronald at the same time as we are. Please pray for lots of good news! Our friend Emily who is a twin has just gotten great news at her checkup after relapsing twice! Hooray! I hope there is a lot more good news this week to report.

Thoughtful Kids
Scott told me today that he is planning to make a patio, plant some flower beds and add a “water feature” at Alysa’s house. He is planning on getting paid for this work and then getting stuffed animals for the kids at the Ronald McDonald House. Alysa is my best friend Stephanie’s niece. She will be coming to NY with us again to help me with the kids. (She doesn't know about all the work Scott is planning for her house yet.) We stopped by there today. Scott swept and weeded and busied himself, just as his father would do. He just loves to “work”. I hope it lasts when he is a teenager. The boys got haircuts today. They like to get haircuts because you get a candy and a baseball card. Scott asked if he could please get his hair cut every week. This is the same child that would kick and scream and cause a huge scene over a hair cut when he was little. (If only I had known!) Everyone took 2 candies and 2 cards because they wanted to bring some things to the sick kids. Scott is planning to purchase some candy to put in the candy dish in the lobby at Ronald.

Baseball
All the kids are enjoying the Cape Cod Baseball League games. Scott is in his 4th week of Kettleers Baseball Camp. It’s really great for him to have special “boy time”. After the games the kids get autographs and can run the bases. They watch the game in anticipation of this great fun after the game. I think it has something to do with being allowed “inside” the fence. They all have autographed hats, balls, shirts and whatever else might be handy. They also have me trained to buy them an ice cream treat! Thanks to everyone at the Cotuit Kettleers for giving us the gift of Baseball this summer!

Falling apart
Well, the burn I got on my left foot in June is still healing. I stepped directly on a piece of hot charcoal~ouch. Thankfully, it was only one piece. It still is tender at times and is very slowly healing. The MRI of my knee shows a bone bruise or subchondral cyst. I’ll leave that one alone for now and repeat the scan in Sept. in hopes that it just goes away! I need Mary Poppins before I consent to surgery. The other knee and my back are also pretty creaky too, all indicitive of Osteoarthritis.

Summer Fun
We’ve been to the beach a few more times, as school will be here before we know it. Kathleen just loves to “schwim” and asks daily to go daily. They have been fishing, flying kites, used their slip and slide and visited with cousins and friends. This trip to NY will be the second for the girls, so they have some sightseeing catching up to do. I’m hoping to combine the check-up with some fun for the kids.

The Loneliest Hour (http://www.loneliesthour.org)
I’ve started a new web site to connect families that are newly diagnosed with Neuroblastoma to the resources that they may need. It is great to have everything linked in one place. I used to have to go to my list of web sites and go from there. I depend on my friend Jeb, who is the computer expert to get the job done. I really feel that it is a necessary “Jumping off” place for the newly diagnosed. Check it out and let me know what you think. It is early, and I think it will be fluid also. Let me know if you find things that you wished you knew at diagnosis and we will see if we can post or link them. It’s a fun project. I wish it was there back when I was saying “Neuro-what?”

Prayers
Please continue to pray for our friends. Grace, Nick, Madison, Lillie, Christopher, James, Carter, and Austin are just a few that come to mind having troubles with relapse or complications from the harsh treatments.
Pray for our friends who have scans this week to get good news. Please pray also for the many folks involved in the bridge collapse this week in Minnesota. Another reminder that life can change, in an instant.

Missing Papa Scott
Scott can’t wait to work each day. A friend is staining my deck. Scott spent one whole day sanding with a palm sander and didn't even take a break. Sean follows Scott and does what ever he is asked to do. He likes to “work” too. Scott is the Foreman and Sean is his Laborer. When there isn’t a real project going on they make up their own. They love to dig or rake or paint my house with water. The girls also like to work. Everyone helped to wash the railings on the deck and Kathleen can really swing a hammer, when Mommy lets her. Sean somehow got a hold of the clippers and cut down any branch in the yard that he could reach. I have lots of Holly trees and Kathleen told me that they were chopping down all the “sharp” tree’s. When Scott isn’t home Sean is the Foreman and Kathleen and Heather are the Laborers. Heather also likes to help Mommy with laundry and dishes. The kids remind me all the time that Papa is “with us”, I just wish that he was still “here” to teach them and “work” with them and see them all just growing up.

Thanks for checking on Sean and my family,
God Bless,
Love, Ellen
XOXO

Wednesday, July 18, 2007 7:33 PM CDT

July 30, 2007
Please say a prayer for Angel Nathan and his family. He passed away yesterday. His Mom Susan was one of the first NB folks, from the NB list, that introduced herself to me in NY 3.5 years ago. He has an older and a younger sister, besides his Mom and Dad.
He was suffering, and is now at Peace.
God Bless, Love, Ellen


July 18, 2007


Baseball
Scott is in his second week of Cape League Baseball Camp with the Cotuit Ketteleers. Every morning he has a hard time starting out, but then really likes it. He did 3 weeks of camp last year. He is really improving. Today I got the kids a “T” so they can practice without me. I’m not a very good pitcher! We also got some bases. Of course it’s been raining since and Scott is dying to try out his new equipment. Coach Devin does a great job with Scott and I really appreciate everyone involved. The kids and I enjoy the evening games too. The guys are top college players and the games are free.

Hobbling About
Well, the burn I got on my left foot over 2 weeks ago is still healing. I stepped on a piece of hot charcoal~ouch. I still haven’t been back to the ortho guy re: my bad right knee.

Tooth Fairy
Scott last a tooth in NH and another last night. Sean has a wiggly tooth. The Fairy has been very busy!

Kids
Heather-Sean gave Heather a shove in the slippery shower. She cut her head over her left eyebrow. First we went to Cape Cod Hospital. The NP wasn’t confident and said they didn't have anyone from Plastics on call. I should have taken my own second opinion advice right then. I felt guilty when she said, She is a girl...she is fair...it’s on her face... And knowing that I go for Sean, I drove to Boston to Children’s. Another 3 hours or so and during that time I remembered that it is July. That mean’s the new docs are here! We ended up with skin glue by the new Resident. I should have stayed at Cape Cod and asked for the Doctor. Oh well. Heather avoided stitches, got a neat Dora Balloon, stickers, coloring pages, and she still thinks Hospitals are fun! That alone is worth the trip!

We haven’t been to the beach much between baseball and my burned foot. (It stings in the water, and if they are in, I am in.) We did go yesterday for a while and they had a great time. Alysa and Abby came so I had lots of helpers. Scott caught a fish last week and so is into fishing this week. Luckily someone else was there so I didn't have to take it off the hook. I have progressed reluctantly to touching the worms. They are also perfectly happy playing in the yard. A friend dropped off another “playhouse” his kids were through with and they have fun playing “Mommies and Daddies” outside. They also enjoy the swing set, although I’m not entirely sure it is safe. It’s very old and Scott had moved it temporarily to build the deck. Well, there it sits. I stabilized it as best I could and I think it’s ok for now. I’m thinking of getting a new one with a trap door, as it will also serve as Scott’s tree fort! We also went to a drive-in movie to see Ratatouille. The kids all stayed until the end and thought it was great fun to see a movie outside. Actually, the triplets have never even been to the theater.

The Loneliest Hour (http://www.loneliesthour.org)
I’ve started a new web site to connect families that are newly diagnosed with Neuroblastoma to the resources that they may need. It is great to have everything linked in one place. I used to have to go to my list of web sites and go from there. I depend on my friend Jeb, who is the computer expert to get the job done. I really feel that it is a necessary “Jumping off” place for the newly diagnosed. Check it out and let me know what you think. It is early, and I think it will be fluid also. Let me know if you find things that you wished you know at diagnosis and we will see if we can post or link them. It’s a fun project. I wish it was there back when I was saying “Neuro-what?”

Prayers
Please continue to pray for our friends. There are lots of kids we know having big troubles right now. Lillie has relapsed in her brain. http://www.caringbridge.org/visit/lillieboyte. Madison has had severe complications to her transplant. http://www.caringbridge.org/visit/madisonswift. Nick is doing much better after a bout with septic shock after chemo. http://www.caringbridge.org/visit/francafamily James is running out of options www.jamesrunde.com and Carter and Nathan are on Hospice. www.carterfinger.com http://www.caringbridge.org/co/nathanmichael

Coins 4 Kids
Visit Sean at www.coins4kids.org He is the Featured Kid for July. You can obtain a coins for kids piggy bank from the site and save your pocket change for the Childrens Neuroblastoma Cancer Foundation. The piggy banks are adorable and each has a name. Teach your kids about helping others and help kids, ~like Sean and his NB Buddies. As you can see by the websites above NB can be a very sneaky and aggressive cancer. All the kids need our help!

Still the Doctor's and Researchers are working hard. There is a group of parents from Sloan working on fundraising to humanize the 3F8 antibody. Currently it is derived from mice which presents a problem if you develop HAMA-human anti-mouse antibody too soon. This would open up options to lots of kids. Boston is working on setting up MIBG treatment so folks here would have that option without travel. There are lots of new things on the horizon. Less toxic therapies are needed.

Sean
Sean is due for his checkup in August. Right now I’m not concerned. He looks and feels well. He is full of energy and mischief. I’m just working on the logistics of traveling, baby-sitting or someone to help me with the kids in NY, etc. We are very lucky. The further we get out from diagnosis the better.

The kids are having a great summer and time is flying by. I hope each of you is having a good summer too, and having fun in some form every day!

We went to church on Sunday and then to the Penny Candy store. I met a nice lady at church who knew of us although we had never met. It was a nice reminder of how many folks from near and far have been thinking about us and praying for us, and taking care of us in so many ways. Linda the “Pizza Lady” also came tonight. She comes once a month with pizza and has been doing this forever! Thank you to everyone who has helped us these past few years. The kids are Happy and Healthy, and we are Blessed!

Thanks for checking on our family,
God Bless, Love, Ellen
XOXO

Tuesday, July 3, 2007 3:06 AM CDT

July 11, 2007
Please say a prayer for Lillie Boyte. She is a little girl that we met briefly in NY in Feb. She had a "routine scan" on Monday and then didn't feel well. It turned out that she has relapsed in her brain and had a bleed requiring emergency surgery. I'm sure her family could use some prayers and support right now.
http://www.caringbridge.org/visit/lillieboyte

Also please pray for Madison Swift. She is an 8 yr. old and has had complications during her transplant.
http://www.caringbridge.org/visit/madisonswift

Coins 4 Kids
Visit Sean at www.coins4kids.org He is the Featured Kid for July. You can obtain a coins for kids piggy bank from the site and save your pocket change for the Childrens Neuroblastoma Cancer Foundation. The piggy banks are adorable and each has a name. Teach your kids about helping others and help kids, ~like Sean and his NB Buddies. As you can see by the websites above NB can be a very sneaky and aggressive cancer. All the kids need our help!
Thanks,
July 3, 2007

Baseball
Scott received his Little League Trophy at a pizza party and skills session. He is very proud of it. We took lots of pictures. He was looking for people to show it too. That makes me sorta sad. We did go out to get some dinner to go, and he showed our restaurant friends with pride.
I wish Papa and Poppie were here, for him to show it to. We had to kind of hide it when we got home, as Sean will be all “too” excited and will break it in 10 seconds.

Hobbling About
Still Hobbling, although my burn on my foot is looking better. Every now and again it just hurts..a lot. It is healing nicely so far. I still need to call the ortho guy about my other knee.

Kids
The kids had a wonderful time while I was in Chicago. They went to the beach, out boating, etc. Scott even went tubing for the first time, and the report i

s that he LOVES it! They hardly missed me they were having so much fun. Tonight was Bingo at the Yacht Club. No, we didn't win. Kathleen didn't like that.

Children’s Neuroblastoma Cancer Foundation
I’ve just returned from the CNCF Parent Neuroblastoma Cancer Foundation Conference for 2007.It is actually 3 conferences at one. A giant playroom for the kids, a session re: grief for Angel Parents, and an informational session for Parents. We are very lucky that some of the best Neuroblastoma Doctors in the country participate! It is the only time that that many NB families are together in one place. I was able to see many old friends and to meet many new friends. Many of us have already been online friends and it is great to meet folks in person. Very special bonds are made and some of my closest friends are folks I met through the world of Neuroblastoma. There will be a great new parent handbook coming along in the near future. I enjoyed hearing all the speakers, but most powerful were the talks given by survivors Molly and Erik.
Thanks so much to Pat and Mark and the anonymous folks who helped to make travel and accommodations available to so many. It really is something I look forward to all year! Thanks to Ruth, my good friend and to Katie, my sister for looking after the kids at home.

The Loneliest Hour (http://www.loneliesthour.org)
I’ve started a new web site to connect families that are newly diagnosed with Neuroblastoma to the resources that they may need. It is really fun. I depend on my friend Jeb, who is the computer expert to get the job done. I really feel that it is a necessary “Jumping off” place for the newly diagnosed. Check it out and let me know what you think. It is early, and I think it will be fluid also. Let me know if you find things that you wished you know at diagnosis and we will see if we can post them. It’s a fun project. I wish it was there back when I was saying “Neuro-what?”

Thanks for stopping by and checking on us! I really missed the kids and Scott E. while I was away. In ‘04 Scott E. was supposed to come too. We had tickets. I ended up bringing little Scott A. as he has the same name and was pretty attached to my leg. Poor Scott never got to see Chicago. I know he would have loved meeting all those people. It’s so sad. Please continue to pray for our friends and our family.

Thanks, and God Bless, Love, Ellen
XOXO

Thursday, June 21, 2007 3:21 AM CDT

June 20, 2007

Angels Hope (www.angelshope.org)
The week we were lucky enough to go on a Pirate Adventure Cruise. The proceeds of the day were donated to Angel’s Hope, a New England Organization that supports families of children with Cancer. Martha lost her son Michael to a brain tumor. This organization has helped our family so much and we are very appreciative. Martha has become our friend. Sean has the honor of being the ambassador for 2007. We went on the ship with our friend lydsay who is also a cancer survivor. She was great with the kids and they all seemed to have fun blasting the “bad” pirate with water cannons, drinking grog, reading the map, finding the “X”, and raising treasure from the sea with a “heave, ho, heave, ho.” The weather was great and Mom had as much fun as the kids. Thank you Martha and Pirate Adventure Cruises for special memories made.

Baseball
Well, we missed quite a few baseball games in Little League due to various logistics like not being able to be in 2 places at one time. It was amazing to see the progress Scott has made this year. It is now time for Cape League Baseball. We went to our first Cotuit Kettleers Game. It was freezing cold, but the kids had fun and we stayed until the end. Scott seemed very happy to see his pal from last year Coach Devin. After the game he even took the time to play catch with Scott. The kids got to run the bases and even the umpire, our new friend, gave each child a ball of their own. What an incredible, kid friendly organization. Scott is looking forward to baseball camp with the Kettleers later in the summer.

Storyland
Next it was off to NH to go to Storyland with Grammy, Auntie Debbie and Uncle Dave, Cousins Keith and Ashley. Again the weather was good and everyone had a great time. More memories made. It’s another place that I’m really glad that I got to go with Scott and Tiffany when she was young, and of course it was Father’s Day.

The Beach
The next day we enjoyed a nice day at the beach with the family. Scott got to go off with one Uncle Dave or the Other all day. (Yes, we have 2 Uncle Dave's.) I hardly saw him, and I’m thrilled. He really needs to have male role models and to be able to go do “boy things” with the guys. We had a wonderful picnic that couldn’t have been better if we had actually “planned” the day ahead. The kids stayed in the water all day. Small problem on my part though..I went to turn a hot dog and stepped right on a hot coal. OUCH! I hobble to the lake and submerged my foot, but too late, the damage was done. I had burning pain for a few hours but thankfully that is gone. Now it is just a big inconvenience as It’s right on the bottom of my foot, and I have a big burn with a blister.

Hobbling About
Next I went for a check up for my aching knees. The right one he said feels “sloppy,” which is just how it feels to me. I’ll be getting an MRI looking for an ACL tear. Now I’m sporting a large blue knee brace on the right and trying to walk on my toes on the left. Inconvenient, but I have to keep hobbling about to get things done. I’ve been to get the groceries, and I’m just letting the lawn grow for now...The kids were great! Scott unloaded all the suitcases from the car from NH alone. They all made me a “sick bay” by arranging every stuffed animal in the house all around the edges of Sean’s bed and arranging pillows and blankets for my comfort. I am so blessed to have four thoughtful caring children who can work together and take care of their Mom. Each gave me hugs and kisses to make me feel better.

Children’s Neuroblastoma Cancer Foundation
I’m looking forward to the Parent’s Neuroblastoma Conference in Chicago. There I will not only get to hear what is new in Neuroblastoma Research but also get to see the many friends that we have met during this journey. I look forward to meeting “in person” many of our new friends from our Neuroblastoma Family. This will be the third time I am attending. It is run by my friend Pat who lost her son Nick to Neuroblastoma. She is a very Special person to put all this together for NB Families. Thanks Pat for all that you have done to make this possible.

Thanks for stopping by and checking on us! Please continue to pray for our friends and our family. Happy Father’s Day to Papa and Poppie in Heaven. We love you and we miss you.

Thanks, and God Bless, Love, Ellen
XOXO

Thursday, June 7, 2007 6:46 PM CDT

June 11, 2007
Alex's Lemonade
Our stand made over $1100.00. Thanks to Steve at Botello Lumber for making this stand possible. Thanks also to Bob McDonough for helping out with our new signs. We look very "official" now!
My sister Katie's stand in Madbury, NH made about $500.00. Jan made $1025.00 in Cedarville, Ma and Heather made $1778.44 in Metheun, Ma. Thank you to everyone who held, attended, helped or donated to a Lemonade Stand. If you missed it, you can still donate by clicking the Donate now button on Sean's site. Thanks so much for helping kids!


June 7, 2007

Alex's Lemonade Days
Hi folks, it’s that time of year again. National Alex's Lemonade Days are upon us. June 8-10. There will be stands all over the U. S. Our local stand is all set for Saturday, June 9th from 8am.-2pm. It will be at Botello Lumber Co. Rt. 28, Mashpee, Ma. If you are not able to attend, you can still help kids by donating. You can simply use the first giving section above. Click on Donate now. If you would like to attend an Alex's Lemonade Stand, you can find one in your area at www.alexslemonade.org. Also please consider hosting a stand at any time of year. It’s fun and it’s a great cause. Funds benefit Childhood Cancer Research.

Dana Farber Cancer Institute
This week I took a 3 day course at Dana Farber, Advanced Concepts in Pediatric Oncology. It was a great course and there were nurses from around the country there. I met a few nurses from CHOP who were familiar with some of our friends who have been treated there. It was nice to learn more about other types of Childhood Cancer that I am less familiar with. I was reminded of how sad it is for innocent little kids to have to suffer through both the Cancer and the toxic treatments as well as the many short and long term side effects. I was reminded that there have been great strides made for some types of cancer, but also that much needs to be done. Please consider donating this weekend to Alex's Lemonade Stand or having one yourself one day.

Kids
The kids are all good right now. They are all busy with end of School Activities and looking forward to summer. Thanks again to everyone who helped out with Scott’s class’s Postcard Project. The did receive a post card from every state! I appreciate all the card from near and far from friends we know and friends we have not met yet! Caringbridge has been a great communication tool for keeping people up to date on Sean and his health. It has also connected us with so many new friends from around the world. It is an amazing community of Special Friends.

Children’s Neuroblastoma Cancer Foundation
I’m looking forward to the Parent’s Neuroblastoma Conference in Chicago. There I will not only get to hear what is new in Neuroblastoma Research but also get to see the many friends that we have met during this journey. I look forward to meeting “in person” many of our new friends from our Neuroblastoma Family. This will be the third time I am attending. It is run by my friend Pat who lost her son Nick to Neuroblastoma. She is a very Special person to put all this together for NB Families. Thanks Pat for all that you have done to make this possible.

Thanks for stopping by and checking on us! Please continue to pray for our friends.

Thanks, and God Bless, Love, Ellen
XOXO

Thursday, May 24, 2007 5:14 AM CDT

HAPPY 8TH BIRTHDAY SCOTT!!

I hope you have the best day ever! We love you so much. You are Mommy and Papa's first born son. I can't believe you are already 8 years old. You are the best big brother to Sean, Kathleen and Heather that the kids could ever ask for! I am so proud of you! Your my big, strong #1 helper too. God Bless you and I hope you have a Sunny, Fun Filled day today!
Love, Mommy, Kathleen, Sean and Heather
XO XO XO XO XO XO XO XO XO XO XO XO XO XO

Friday, May 18, 2007 0:12 AM CDT

May 19, 2007
Please pray for Penelope and her family. She passed away this morning in her parents arms. She had a long uncomfortable struggle. Her parents efforts and her many experimental treatments will help countless others in the future. Bless you sweet Penelope.
love Ellen


May 16, 2007
Happy Belated Mother's Day to all the Mom’s out there.
We had a nice day. Friday I was invited to the kids Preschool for the Mother's Day Tea Party. My sitter Rose came along too. We enjoyed tea sandwiches and snacks and iced tea. The kids made the cutest cards with their photo in it and they painted the placemats. Scott made me a beautiful wooden paper towel holder with painted tulips on it. He made this with the help of his “big brother” Tom. Thanks Tom for always thinking of Mommy too! We had a big breakfast together and just hung out. Later I went to dinner with a friend. The kids made plaster handprints with the sitter. They are very cute. (Helpful Hint-do not put any plaster down your drain with this project. It clogs it!) Scott did all kinds of other helpful things, like doing some laundry or helping with the flood that ensued due to the clogged sink/dishwasher. Thanks to my neighbors who brought me a beautiful plant and to my friends that remembered me with cards and other thoughtful things on Mother's Day.


Recital
The kids had their ballet recital, The Magic Lamp. It was a great production and they all did a nice job and had no problem being “on stage.” (see photo)

Health
Sean seems better this week and is back to his wild self. He still occasionally c/o leg pains, but he is growing like a weed so I’m chalking it up to “growing pains.” Kathleen had a little “blue” spell and will be worked up by a pedi cardiologist. She has done this before and is asymptomatic, so I’m not really worried, at least not yet. Heather and Scott are fine, just bumps and bruises from playing outside.

Tiffany
Tiff is enjoying Virginia Beach, In fact she is enjoying it so much that she got Married last week. Hopefully, I’ll have a photo to post soon. Welcome Myrton to the family!

Fundraising
www.angelshope.org
The Angel’s Hope walk went very well and the kids had fun. I think they raised about $13,000.00 to help families of children with cancer.
CNCF www.cncf-childcancer.org
You can support the Children's Neuroblastoma Cancer Foundation by purchasing a NB bracelet at www.cncf-childcancer.org, or making a donation.

Alex's Lemonade
Alex's Lemonade Days are the first weekend in June. You can have a stand anytime, but this is the big “National” weekend. We will be having a stand at Botello Lumber Co. in Mashpee, Ma. June 9th from 8am-2pm. Please stop by for some nice cold lemonade and support children's cancer. You can also donate to our stand online at the firstgiving site above. To have your own stand or for more info, please check www.alexslemonade.org. **If we refer you, and you have a stand, we both get a signed copy of the book!** My good friend Heather is having one June 9th and 10th at 192 Hampshire St. Methuen, Ma. My sister Katie will host one in Madbury NH, also on June 9th. Thank you so much Katie and Heather for continuing to support Alex's Lemonade Stand in such a big way!

Papa
I miss him every single day. What can I say. The kids are growing so fast.
I know he is with us and the kids tell me so, but still...

Advocacy
President Bush has asked Congress to cut funds for Cancer Research
You can help by sending an e-mail to your local politicians. Log onto the following web site http://www.curesearch.org/news_and_media/news_article.aspx?id=4470 On the left it says "Take Action Now" and underneath you click on "Write to Congress." You enter your zip code, select your reps, and direct e-mail. There's a standard letter or you can compose your own.
Encourage your reps to pass the Conquer Childhood Cancer Act and to stop budget cuts to cancer research. (Included in the cuts are rare childhood cancers, Neuroblastoma IS considered a rare childhood cancer.)

Our Friends
Please continue to pray for Bryan, Matty, Kendall, and Ryan’s families. All children passed away recently. Also for all our Angel friends and their families. Please pray for Penelope who is on hospice and has been having pain and is home with her family. Please pray for Emily and Big James who have relapsed yet again with Neuroblastoma and for Grace, stage 3 NB, whose tumor has progressed again.

Thanks for checking on us and praying for us and for stopping by to say hello in Sean’s guestbook.

Scott's Postcards
The kids still need postcards from Kansas and Mississippi if you know any one from these states.

Mrs. Keenan's Multiage Class
Marstons Mills East Horace Mann Charter Public School
760 Osterville/West Barnstable Rd.
Marstons Mills, MA
02648

A Special thank you this week to everyone who took the time and made a special effort to send a postcard to Scott’s multiage 1st and 2nd grade class. He will get to keep “his” at the end of the year for his own private collection. I got to read a lot of the new ones this week. I think it is as much fun as the kids do, and I’m learning new things too! Go ahead and sign the guestbook and say hello!


God Bless,
Love, Ellen
XOXO

Saturday, May 5, 2007 1:59 AM CDT

May 10, 2007
Papa
It's been 3 years since Sean's Papa passed away. Today we will go to church, light a candle for Papa and our other Angel friends, go to breakfast, maybe plant flowers at the cemetery and remember him. We also have ballet recital rehearsal and baseball. I know he is with us in spirit. I just wish he could be here. He would probably be meeting us at baseball after work. He would be very proud of the kids. We all miss him and love him very much.
God Bless, Love, Ellen


May 8, 2007
Please say a prayer for Bryan and his family. He fought NB for over 8 years with a winning spirit. I met his Dad recently in VT. Bryan was doing well with his recent cancer treatment, but his body could not fight off a recent infection after so many years of treatment. http://www.caringbridge.org/ny/bryan
He would often receive platelets one day and be snowboarding the next. God Bless you Bryan, Peace and Strength to your family.
Love, Ellen

May 6, 2007

HAPPY NURSE'S DAY!
Don't forget to wish your favorite Nurse a Happy Nurse's Day today!


Scott's Postcards
The kids still need postcards from Arkansas, Iowa, Kansas, Mississippi, Nebraska, if you know any one from these states.

Mrs. Keenan's Multiage Class
Marstons Mills East Horace Mann Charter Public School
760 Osterville/West Barnstable Rd.
Marstons Mills, MA
02648


Sean
Sean went to Boston for his hearing test for long term effects. This was mostly due to the fact that he had High Dose chemo at 11 mo. old. He passed! Hooray. We met Auntie Gael for lunch in Plymouth. When we set off for home we learned that the bridge was closed, so we visited Plymouth Rock and the Mayflower. Sean enjoyed the Pilgrims in the gift shop and running around by the sea on a beautiful sunny day. The bridge reopened and soon we were home!

Baseball-Little League-Scott
Scott got his uniform today. He is very proud and we took pictures. I’m proud too, as he is hitting and catching the ball, and looks like he is having so much fun. Today is Opening Day! I asked him if he wanted to go and if I should somehow make arrangements and find him a ride. He told me that the Angel’s Hope Walk for Cancer was more important, and that he just hope’s that his team wins! Go Athletics!
How special is that! I’m so very proud of him!
He also passed his Karate test, and got his yellow belt.

Bike riding
Sean broke his training wheel. He is a maniac on wheels...and so I took them off. And off he went. Well Heather had to follow, and Kathleen couldn’t be left out. Each of them rode without training wheels! Poor Kathleen decided that this was toooo scary, although she did it, and so she went to our little bench to pout! Poor Scott was still at school, and had not accomplished this feat. Yikes. Being busy with the triplets, he has been shorted time on his bike with Mom. Well, after school, I met him with his bike. As Sean rode away, he had no choice...and off he went!
So all 4 learned to ride bikes without training wheels this week. How cool is that! (And all the same day!)

Fundraising
It’s that time of year again. If you are in or around NY. Please check out www.walkforkidswithcancer.org, May 12, 2007, NYC Kids Walk to raise money for MSKCC pediatric cancer research.

CNCF www.cncf-childcancer.org
You can support the Children's Neuroblastoma Cancer Foundation by purchasing a NB bracelet at www.cncf-childcancer.org, or making a donation.

Alex's Lemonade
Alex's Lemonade Days are the first weekend in June. We will be having a stand at Botello Lumber Co. in Mashpee, Ma June 9th from 8am-2pm. Please stop by for some nice cold lemonade and support children's cancer. To have your own stand or for more info, check www.alexslemonade.com. **If we refer you, and you have a stand, we both get a signed copy of the book! My good friend Heather is having one June 9th and 10th at 192 Hampshire St. Methuen, Ma. My sister Katie will probably hold one in Madbury NH, I don’t have the date yet.

Advocacy
President Bush has asked Congress to cut funds for Cancer Research
You can help by sending an e-mail to your local politicians. Log onto the following web site http://www.curesearch.org/news_and_media/news_article.aspx?id=4470 On the left it says "Take Action Now" and underneath you click on "Write to Congress." You enter your zip code, select your reps, and direct e-mail. There's a standard letter or you can compose your own.
Encourage your reps to pass the Conquer Childhood Cancer Act and to stop budget cuts to cancer research. (Included in the cuts are rare childhood cancers, Neuroblastoma IS considered a rare childhood cancer.)

Missing Papa
This week will be 3 years. I can't believe the little kids are 4.5 years. They are suddenly not babies, or even toddlers, but "big kids". I'm so sorry that Scott is not here with me, for all of us.

Our Friends
Please continue to pray for Matty, Kendall, and Ryan’s families. All children passed away recently. Please pray for Penelope who is on hospice and has been having pain and is home with her family. Please pray for Emily and Big James who have relapsed yet again with Neuroblastoma and for Grace, stage 3 NB, whose tumor has progressed again.
Thanks for checking on us and praying for us and for stopping by to say hello in Sean’s guestbook. A Special thank you this week to everyone who took the time and made a special effort to send a postcard to Scott’s multiage 1st and 2nd grade class.


God Bless,
Love, Ellen
XOXO

Friday, April 20, 2007 10:26 PM CDT

April 25, 2007
Sean has been perfectly fine ever since I made the call to the doctor! Thank Goodness!

Postcards
As many of you know, Scott's 1st grade class has a postcard project. Many of you have responded. He has literally received 100's of postcards from all over the world. His class is missing a few states. If anyone lives in, travels to, or knows someone in one of these states could you please take a moment to help complete their collection.

They still need postcards from Alabama, Alaska, Arkansas, Delaware, Indiana, Mississippi, Nebraska, New Mexico, North Dakota, Utah and West Virginia.

Mrs. Keenan's Multiage Class
MMEHMCPS
760 Osterville/West Barnstable Rd.
Marstons Mills, Ma. 02648
(sorry for the long address..)

Thank you to so many who went above and beyond the call of duty by sending personal notes and more. Also thanks for including Scott's friend Matty's class. (see previous post's) Sadly, Matty passed away from Hepatoblastoma. I'm sure your efforts were very much appreciated by Matty and his friends. Thanks so much for making learning geography fun!

Other kids news
All 4 kids learned to ride their bikes without training wheels this week! Also, Scott earned his Yellow Belt in Karate!

Thanks again, and God Bless, Love, Ellen
April 20, 2007
Happy Birthday Auntie Debbie!


Sick Kids
Thankfully everyone is back to being very healthy. Last week Sean vomited once or twice everyday even though he seemed to be otherwise perfectly fine. One night he woke up screaming in pain that his leg hurt and he could not walk. I gave him motrin and after only a few minutes he was fine. Naturally, (in the NB world), panic set in. I was thankful later when Scott woke up and said that his leg hurt too. (Growing pains?) Cancer parents can understand being thankful when another child is hurting so that you can assume your cancer kid is OK too. (Ugh!) Friday I called the pediatrician who told me to see how he was over the weekend, and he has been fine since. Still a bit concerning since he was also vomiting last month when I was in Vermont and seemed otherwise fine. Today everyone is good and so I chalk it up to normal childhood illness, at least for today..

Baseball
Scott likes baseball and has a bday coming up in May. I decided to get him tickets to a Red Sox game for a present. When I called surprisingly they only had tickets to opening day. Pretty exciting! He had a good time and the Red Sox won! He started Little League last week and had a great first day. He also got his report card, All A’s and 1’s for effort! Mom is very proud!

School Vacation
It’s vacation week, and so we were off to NH for a visit to Grammy and for some adventure. The kids enjoyed the snow and mud. We haven’t had much snow at home at all! As we drove away, one of the kids asked me If the house reminded me of Papa. Of course it does, and I miss him so. I’m thankful for all the good times we had and I’m glad the kids have made the connections. They were only 18mo. old when he died. The next day we went to a hotel where my Dad did business and we frequently stay. The kids love the pool and the place is familiar. It’s one of the places I am very comfortable going by myself with them all. Many of the employee’s remember us and Dad, and are very kind. As I was checking in Kathleen apparently elbowed Scott in the nose, and he came running in with blood everywhere. I’m sure they love to see me coming! It was a minor nose bleed that looked much worse than it was. We drove by Cathedral Ledge and watched some rock climbers high above. Scott noted a trail marker that mentioned a cave and so we were off in the mud and snow. I remembered everyone’s boots except mine! The kids loved it and each picked up a walking stick for the trip. The “cave” was pretty cool and with the snow melt and recent rains, the water was falling over the entrance. Next we were off to Jackson Falls where the river was raging. We always go to Jackson Falls and take pictures each time. It will be fun to look at all the pictures in different seasons as the kids grow. We visited with friends in Jackson and had pizza at Shannon Door. Back at the hotel we were off to the pool to practice the skills they are learning in swimming lessons. By then they were all pretty tired. We arrived home tonight in preparation for a busy day tomorrow. The little kids have dance, Scott is testing for his yellow belt in Karate, and later Scott has baseball.

Fundraising
It’s that time of year again. You can support the Children's Neuroblastoma Cancer Foundation by purchasing a NB bracelet at www.cncf-childcancer.org, or making a donation. Alex's Lemonade Days are the first weekend in June. We will be having a stand at Botello Lumber Co. in Mashpee, Ma June 9th from 8am-2pm. Please stop by for some nice cold lemonade and support children's cancer. To have your own stand or for more info, check www.alexslemonade.com. **If we refer you, and you have a stand, we both get a signed copy of the book! My good friend Heather is having one June 9th and 10th at 192 Hampshire St. Methuen, Ma. My sister Katie will probably hold one in Madbury NH, I don’t have the date yet. The Angels Hope walk for Cancer is May 5th, they assist families all throughout New England. They have helped over 560 families since 2001. They are locally based, but really a regional organization.
They help families of children with cancer and have done much for our family. This year Sean has the honor of being the Ambassador for 2007~you can see his cute photos on their web site under (http://www.angelshope.org/ambassador.html). The walk will take place in Harwich, Ma. on May 5th. You can contribute to Sean’s donation, or join us at the walk. More info is at www.angelshope.org under events.

Advocacy
President Bush has asked Congress to cut funds for Cancer Research
You can help by sending an e-mail to your local politicians. Log onto the following web site http://www.curesearch.org/news_and_media/news_article.aspx?id=4470 On the left it says "Take Action Now" and underneath you click on "Write to Congress." You enter your zip code, select your reps, and direct e-mail. There's a standard letter or you can compose your own.
Encourage your reps to pass the Conquer Childhood Cancer Act and to stop budget cuts to cancer research. (Included in the cuts are rare childhood cancers, Neuroblastoma IS considered a rare childhood cancer.)

Our Friends
Please continue to pray for Matty and Kendall’s families. Both children passed away recently. Please pray for Penelope who is on hospice and has been having pain and is home with her family. Please pray for Emily and Big James who have relapsed yet again with Neuroblastoma and for Grace, stage 3 NB, whose tumor has progressed.
Thanks for checking on us and praying for us and for stopping by to say hello in Sean’s guestbook. Prayers for the victims at Virginia Tech and their families this week as well.

God Bless,
Love, Ellen
XOXO

Sunday, April 8, 2007 0:10 AM CDT

April 11, 2007
Please say a prayer for Kendall and his family. He passed away tonight. He was almost 5 years old and leaves his twin brother Zachary. http://www.caringbridge.org/ny/kendall
God Bless,
Love, Ellen



April 8, 2007
Happy Easter!


Kids, cont...
Kathleen ended up taking her turn being sick a week later than everyone else.. All are well now!
Kathleen, Sean and Heather are in Dance class. They will have a show in May, I’m very excited. Today was picture day. Sean is the only boy and he looks great in his Black Outfit. He will be glad when he is older and has this photo of himself surrounded by pretty girls! Scott continues with Karate and is getting ready for Baseball Season. For his (early) birthday present, Mom got him tickets to opening day! Mostly he has been planning out all the food that he is going to eat! Tiffany is still in Virginia Beach and is doing well and sounds happy.

Easter
Kathleen woke up first. She spotted a few eggs outside, and everyone was up in a flash. We did baskets and breakfast and played outside. Ruth came over with baskets for the kids and her timing was perfect to join in on the Egg Hunt. It is much colder than it has been. That insprired Scott to do some Indoor sunbathing, and the idea caught on. (see photo's)
Later we had dinner. They are hoping for rain~new umbrella's, or some sun~to try out the new beach attire, or maybe some warmer temps~to play outside. Later we watched some video's the bunny brought.

Fundraising
It’s that time of year again. You can support the Children's Neuroblastoma Cancer Foundation by purchasing a NB bracelet at www.cncf-childcancer.org, or making a donation. Alex's Lemonade Days are the first weekend in June. We will be having a stand at Botello Lumber Co. in Mashpee, Ma June 9th from 8am-2pm. Please stop by for some nice cold lemonade and support children's cancer. To have your own stand or for more info, check www.alexslemonade.com. **If we refer you, and you have a stand, we both get a signed copy of the book! My good friend Heather is having one June 9th and 10th at 192 Hampshire St. Methuen, Ma. My sister Katie will probably hold one in Madbury NH, I don’t have the date yet. The Angels Hope walk for Cancer is local, they help families of children with cancer and have done much for our family. This year Sean has the honor of being the Ambassador for 2007~you can see his cute photos on their web site under (http://www.angelshope.org/ambassador.html). The walk will take place in Harwich, Ma. on May 5th. You can contribute to Sean’s donation, or join us at the walk. More info is at www.angelshope.org under events.

Advocacy
President Bush has asked Congress to cut funds for Cancer Research
You can help by sending an e-mail to your local politicians. Log onto the following web site http://www.curesearch.org/news_and_media/news_article.aspx?id=4470 On the left it says "Take Action Now" and underneath you click on "Write to Congress." You enter your zip code, select your reps, and direct e-mail. There's a standard letter or you can compose your own.
Encourage your reps to pass the Conquer Childhood Cancer Act and to stop budget cuts to cancer research. (Included in the cuts are rare childhood cancers, Neuroblastoma IS considered a rare childhood cancer.)

Blessings
Thanks to all our friends at Sotherby’s Realty in Osterville, Ma. Once again they have remembered my family with a fantastic Easter Basket. Thank you all for your thoughtful and generous contributions. The kids got all excited when we came home to a giant Easter Basket by the door!

Thanks for checking in on us and praying for us, and for all of our friends with cancer. Please continue to pray for Matty’s family. He passed away March 25th. Please pray for Penelope who has been having pain and is home with her family. Also for Kendall. He is a twin who is in the hospital. Please pray for Emily who has some questionable scans. I sure hope it is nothing. Emily is a twin too. There are many more facing relapse or end of life issues right now. It sure seems to be everywhere.
It’s been 3 years since my best friend Stephanie passed away. In a few weeks it will be 3 years since Scott passed away, and then Dad. I can’t believe it has been so long. I miss them all. I took Scott A. to Home Depot yesterday. Papa’s favorite store and I was surprised home hard it is for me to even go in there. I have to do it though. It’s Scott’s favorite too! The kids dance rehearsal is on the day Scott died. That should keep me busy.
I Hope everyone has a Happy Easter with Family and Friends.
God Bless,
Love, Ellen
XOXO

Tuesday, March 20, 2007 10:18 PM CDT

March 25, 2007
Our friend 7 yr. old Matty Dubuc passed away peacefully tonight at home. (Hepatoblastoma) Please say a prayer for Matty and for his family. He has a 9yr. old brother Chris and a younger brother Zachary. Please pray for Peace and Comfort and Strength for this family. Matty was a brave fighter who Believed and never gave up. He will be dearly missed. Fly High Matty!
http://www.caringbridge.org/visit/matty

March 20, 2007


Kids, cont...
All but Kathleen went to the doctor twice and ended up on antibiotics. Heather had to change antibiotics for a double ear infection and ?pneumonia. I even ended up on antibiotics for a sinus infection followed by a ct scan to see why I get them every 2-3 months.

Our trip to Vermont
Wednesday
I was thinking that I was very organized, not my nature, and due to the help of the baby-sitter who packed the kids. Well, she gave them a nice bath and put them in cozy jammies for the ride. She put them in the car and bucked them in for me. Thanks Amanda! About 20 minutes later, I realized that the kids got packed, but not the coats....ugh. I had gotten Scott out of School early, and was just barely going to get through Boston before the traffic. Well, If I was missing one coat, I may have kept going, but I was missing 3 coats, so I turned around. By the time I got going again, the kids had been in the car for an hour and I hadn't left yet. Next we hit 5:00pm. traffic perfectly, so that I was traveling at about 5 miles/hr. We got through Boston, eventually into New Hampshire and stopped at McDonalds, my least favorite place to eat. After dinner we were off again.
There was intermittent fog because there is still snow on the ground and it was warm out. Then it became severe fog. At some points I was practically stopped on the highway, with my head out the window. We were about 80 miles from our destination. I went probably 20 more miles and decided to stop at a hotel. It’s too scary at night in the dark, in the fog, alone with the 4 kids. At the first hotel, there was “no room at the inn.” The next place was inexpensive, but not totally clean. We stayed. The good news is the free wireless. Next at 5 am., Sean vomited. Oh my. I hope it was an isolated incident.
Thursday
We continued on to Auntie Debbie's, had lunch, and went off to the Vermont Teddy Bear Co. As we walked in, Sean vomited again...oops. Mom had to buy a new souvenir sweatshirt! He seemed to recover quickly and we all enjoyed the tour. Back at Auntie Debbie’s the kids enjoyed the snow and went sledding with Uncle Dave.
Friday
I went to the Neuroblastoma Symposium at UVM. There was a lot of old news and statistics and a little new news. Always, I enjoy meeting the new friends that I have made online, and seeing old friends that we have made during Sean’s journey with cancer. Interesting were cancer stem cell research, Nifurtimox-although it’s early, and a few other things that I need to continue to read up on to understand. Some of this info was presented at ANR which I was lucky enough to attend last June. It’s great to meet the researchers in person and be able to see what they are “thinking.” I was also honored to meet Syd Birrell and everyone got a copy of his book, “ya can’t let cancer ruin your day.” I always enjoy hearing the Doctors and Researchers speak. I just wish things would move faster toward a cure or at least more tolerable treatment. I also think these meetings are so helpful so that the folks involved can learn what each other is up to and to facilitate increased communication between all the parties. Next I was able to see my Niece Caitlin who is graduating from Nursing School at UVM this year and see her apartment and family. Later it was nice to join some of the parents, Doctors, and researchers at dinner and discuss things in a less formal atmosphere.
The kids stayed home with Auntie Debbie and played outside in the “powdery snow”, when Uncle David came home. They made a very cool snow igloo/fort. (See photo’s) Scott loved being able to use “sharp” tools and building. Also more sledding, climbing in the tree fort and using the “zip line”. Friday night we got about a foot of snow.
Saturday-Happy St. Patrick’s Day
The Leprechaun found us in Vermont! He left gold coins, pipe’s that were whistles for the boys and light up necklaces for the girls. Scott and Keith had left him a cool Leprechaun trap, complete with notes and letters and a cozy bed. He did get away, but it looked like he must have been in a hurry as he didn't answer the notes. I didn't even know they left notes, since I was at the dinner! Today we took Keith and went to the Ben and Jerry’s ice cream factory. Sadly, it’s under construction, so it was a bit of a ride to watch the video, but he kids liked their samples of “Dublin Mudslide” ice cream, just the same! Next it was back to Deb’s for Corned Beef/Cabbage, more Ben and Jerry’s and more playing in the snow.
Sunday
More playing in the snow, while Mommy packed up. I took the fast route home...Didn’t stop for anything and made it in less than 5 hours! I think it took 10 to get there, not counting staying overnight! I was so proud of myself to be home early, feed the kids and start unpacking. I was also glad to see blue skies and not a flake of snow to shovel in the driveway. Spring is in the air on Cape Cod. OOPS. Heather vomited all over my Claire Murray rug, IN her suitcase which was open, and IN Kathleen’s jewelry box...........ugh.

Normal childhood illness’s though, so I won’t complain.
Especially after checking on our friend’s web sites when we got home. Please continue to pray for Penelope, her Dad could not make the conf. in Vermont because she is sick. Also for Matty, who has been having a very tough time lately, as well as Kendall. His mom also wanted to go to Vermont and was unable as he is in the hospital.


Fundraising
It’s that time of year again. You can support the Children's Neuroblastoma Cancer Foundation by purchasing a NB bracelet at www.cncf-childcancer.org Lemonade Days are the first weekend in June. We will be hosting an Alex's Lemonade Stand at Botello Lumber, Rt. 28, Mashpee, Ma. on Saturday June 9, 2007 from 8am.-2pm. Come on out for a nice cool cup of Lemonade and help fund critical Pediatric Cancer Research. The Angels Hope walk for Cancer is local, they help families of children with cancer and have done much for our family. This year Sean has the honor of being the Ambassador for 2007~you can see his cute photos on their web site under (http://www.angelshope.org/ambassador.html). The walk will take place in Harwich, Ma. on May 5th. You can contribute to Sean’s donation, or join us at the walk. More info is at www.angelshope.org under events.

Advocacy
President Bush has asked Congress to cut funds for Cancer Research
You can help by sending an e-mail to your local politicians. Log onto the following web site http://capwiz.com/curesearch/home/ On the left it says "Take Action Now" and underneath you click on "Write to Congress." You enter your zip code, select your reps, and direct e-mail. There's a standard letter or you can compose your own.
Encourage your reps to pass the Conquer Childhood Cancer Act and to stop budget cuts to cancer research. (Included in the cuts are rare childhood cancers, Neuroblastoma IS considered a rare childhood cancer.)

Blessings
It was the first time to Vermont for me without Scott. Of course there are memories, like the Vermont Teddy Bear Factory, Ben and Jerry’s, fun times at his sisters house and so many more. I’m so thankful that I have those memories of good times together. It’s just that I thought we would have so many more. I feel so blessed to have the kids and in my own mind to be able to bring them to the places that I used to go to with their Papa. That way in the future I can show them pictures etc., and they will feel connected with Papa too. The triplets were only 18mo. old when he died and Scott was 4. They are so cute and adorable and I just love them so much. Thanks again to everyone who has taken such good care of us through these difficult times. I’m so blessed that despite a little cancer everyone is healthy~
God Bless,
Thanks for checking in on us and praying for us, and for all of our friends with cancer. It sure seems to be everywhere.
Love, Ellen
XOXO

Thursday, March 8, 2007 2:46 AM CST

March 8, 2007


Hello Friends,
We have had a week (actually more) of taking turns being sick. Scott has had a cough for a month. He has been to the doctor twice. Sean with a cold, vomiting and fever. He developed an ear infection. He went to the doctor twice. Heather had a high fever 104.8~scary, vomiting, cough, cold and now has an ear infection and ?pneumonia. While I was at the doctor for Heather and Sean, it was decided that Scott should also be on antibiotics for that lingering cough. Kathleen had a mild short lived cough and seems to have escaped the brunt of it. (She is also the only one that does not end up in my bed everynight.) She loves her cozy pink bed! Now I have a sinus infection (again). I’m on steroids and antibiotics and have an appt. next week to see why I keep getting them every 3 months, with pain in the same spot. Scott also went to the doctor for an incredible black eye. A little girl was swinging a little boy, who connected full speed apparently with Scott’s face. It must have broken a blood vessel, as the bruise goes above his eye, dark purple, down to his mouth, now yellow and green. Hmmm, I wonder what people think! All of this is good news, as all of it revolves around “normal” kinds of sickness, and not cancer.

Many of our friends are dealing with so much more.
Please continue to pray for Penelope (NB) and for Matty (hepatoblastoma), both are running out of options for treatment. Also for Kendall (NB), who is a twin, who has recently progressed despite treatment. Also please pray for Angel Bryce and his family. He passed away suddenly during a procedure related to his Neuroblastoma. I’m sure the family is still in shock. Also all of our other Angel friends and their families. We have made so many dear friends since Sean was diagnosed. Sadly, many children that we have met have passed away in the 3.5 years since I found out what the word Neuroblastoma means. Many have become our Internet family. I’m looking forward to seeing many of them in Chicago in July for the Neuroblastoma Parent Conference sponsored by www.cncf-childcancer.org And please continue to pray for all the NB warriors who are fighting for life everyday.

We will also be going to Vermont in March to hear Dr. Maris, Dr. Mathay, Dr. Sholler, Dr. Modak and others. I’m looking forward to another opportunity to hear some of the most important Doctors in the country addressing Neuroblastoma. There is still so much to be done. I’m glad this time it’s on the east coast so that I can drive. I’m also looking forward to meeting more of my Internet friends, in person. Aunt Debbie lives near there and my niece Caitlin is in nursing school at UVM. It is a long ride with the 4 kids in the car, but hopefully I can plan it so that they can sleep part of the time. They will miss some more school, but hey, life is very educational. So is Travel! Thankfully Aunt Debbie has taken the day of the consortium off to play with kids, so that I can attend.

Scott is doing very well in school, I’m so proud of him. He got all A’s on his first report card that actually uses letter grades, and all 1’s for effort!
He is in enrichment groups for Reading, Math and Art. He also has a “Big Brother” now. Thanks Tom, for all that you do.
Kathleen, Sean and Heather have a school project involving Pet Rocks. We went to the beach today to bring home our new pets. (Scott has one too! Actually, he has two!)
We had to measure them, describe them and decorate them. Next we have to name them. It was freezing today at he beach, but other than obtaining out pets and some friends in a (freezing, windy ) location it has been fun. I specifically drove to a beach where we would have a great selection. We watched coast guard boats and fishing boats at work up at the canal. I’m sure these new friends will keep us entertained until the weather warms up a bit. Heather chose a tiny rock, Kathleen's is triangular, Sean’s is round and Scott’s is big. It’s actually really fun to see what colors they want to paint them and to watch these rocks take on a personality given to them by their new owners.

Fundraising
It’s that time of year again. You can support the Children's Neuroblastoma Cancer Foundation by purchasing a NB bracelet at www.cncf-childcancer.org I’m sure we will be having another Alex's Lemonade Stand or two. Lemonade Days are the first weekend in June. The Angels Hope walk for Cancer is local, they help families of children with cancer and have done much for our family. The walk will take place in Harwich, Ma. on May 5th. You can contribute to Sean’s donation, or join us at the walk. More info is at www.angelshope.org under events.

Advocacy
President Bush has asked Congress to cut funds for Cancer Research
You can help by sending an e-mail to your local politicians. Log onto the following website http://www.curesearch.org/news_and_media/news_article.aspx?id=4470 On the left it says "Take Action Now" and underneath you click on "Write to Congress." You enter your zip code, select your reps, and direct e-mail. There's a standard letter or you can compose your own.
Encourage your reps to pass the Conquer Childhood Cancer Act and to stop budget cuts to cancer research. (Included in the cuts are rare childhood cancers, Neuroblastoma IS considered a rare childhood cancer.)


God Bless,
Thanks for checking in on us and praying for us,
Love, Ellen
XOXO

Sunday, February 18, 2007 2:53 AM CST

February 28, 2007~Happy Birthday to Jeb!
Please keep Matty and family in your prayers. He isn't feeling well, has a fever, and Mom and Dad are spread thin with 2 brothers to care for. http://www.caringbridge.org/visit/matty

February 19, 2007
We went skating on our Pond today. I've only done this once before with Papa and Scott in Jan '04. This time we didn't have to shovel. They all did well. Sean and Heather enjoyed rides on our lawn chairs. Kathleen was anxious to learn to skate on her own. We hear some ominous ice noise and that was enough for today....
A sunny day, just like the last time. I remember Scott had to go buy skates. I sat in the sun in the same green lawn chair, thinking how lucky I was to live in such a beautiful spot with my family.
I'm still lucky. Lucky that Sean is here to have the opportunity to skate with us. Sad though that Papa is not.
We all had fun and went in for hot cocoa and to warm up.
Please keep our friends in your prayers.
See photos. Love, Ellen



February 14th, 2007
HAPPY VALENTINE’S DAY!

Thoughts on Sloan
We are fresh back from Sloan Kettering for a check up for Sean. He saw Dr. Sklar re: long term effects. He will have a hearing test to compare to the baseline test that he had at MGH at diagnosis. He also needs a Neuro/Psych eval re: to having high dose chemo at a very young age. Chemo works best on rapidly dividing cells. At 11mo. old, your BRAIN is a mass of Rapidly dividing cells! That is exactly why I went to Sloan at Dx for a second opinion. I wasn’t comfortable giving chemo to my baby. For high risk neuroblastoma, the prognosis is such that it is not a choice. Sean was thought to be high risk, and we started the chemo. 3 days later it was determined (after 3 days of high dose) that he was really intermediate risk. The “usual” treatment would have been 4-8 rounds of moderate dose chemo, (not high). Sean was also deemed “inoperable”. It was then that I was sure I needed a second opinion. At MSKCC, we met Dr. L. He gave us a surgical option that we did not have in Boston. Both Papa Scott and I were comfortable with him right away despite the risks we were given re: the surgery. There is also a remote risk of a secondary cancer, leukemia. Today, I am reminded of how thankful I am that we ended up calling Sloan as soon as we did. There may still be long term effects, but so far we have avoided the short and long term effects of having chemotherapy. The cancer may come back. He looks fine, and acts fine. I still worry some, but much less than in the past. For the first time, I’m feeling like he will be OK. I also know that life does not always happen the way that you expect it to, and that it is very important to live each day as it comes, no matter what. For Today, things are good. His labs were good, and his LDH was the best it has ever been!

About the trip
I decided to take ALL the kids this trip. The girls had never been to NY with Sean. I have almost always taken Scott, so that there was one less to watch at home. Thankfully, my (adopted niece), Alysa was able to come with me and hold a hand or two, or more. We drove, and being Sunday got there in no time. I dared to take a drive and we were able to go down to battery park and back up by ground zero and then up by central park.
Once we were settled in, we hopped in a taxi, 6 of us with 2 strollers and were off to Time Square to Toys-R-Us. The boys wanted to show the girls the giant T-Rex. I have to say, the girls are much braver than the boys! Scott used to hide behind the army jeep nearby. We walked around a bit, but the kids were fading and it was cold. Back at Ronald they enjoyed Crafts and made Valentines. Scott likes the free video games, as we don’t have those at home. It was great to have a second pair of hands as I could run out for milk or to get us pizza without bringing the kids with me. I also got to visit with Melissa for a bit. Melissa has been living at Ronald for over 2 years with her son Dylan. Most of Monday was spent in the playroom at Sloan. The kids did crafts and had a great time. I was able to meet Ryan Malarkey and Mom Kim as well as Grandpa Henry. We saw Dr. Sklar and Dr. Kushner. Next we went to St. Catherine’s Playground where they ran and played and got some of that energy out.
We stopped for late lunch at Finnegans and then back to Ronald for a rest. More playroom activities and crafts and video games for Scott. We slept in a bit in the morning, packed up and went to Cafe Luca for lunch. By the time you get 6 people dressed and packed and fed, the day is pretty much gone. We loaded up and set off for home before the big storm. Other than seeing a crazy accident at the toll both, and maybe a fire in the distance, the ride was unremarkable. I was glad to be home. I wish we could have done more sightseeing for Alysa, but it’s hard with all the kids and not enough strollers. It was also too cold to be outside for any length of time. Anyway, the experience of Sloan and Ronald were new to her. Maybe she will help us again in August when Sean is due for Scans and urine tests again.

Neuroblastoma
I was able last week to hear Dr. Maris at Grand Rounds at Children’s. I love to go and hear the doctors speak. To hear what’s new. I’m also usually reminded of what’s not. There has been very little real progress for NB in 15 years. The treatments are toxic, high dose chemo, stem cell transplants, arsenic, thalidomide, targeted radiation, “hot” antibodies, etc.
Relapsed NB has no known cure. All treatments are experimental. It is amazing how aggressive the NB can be through all of this. I’ll be going to Vermont in March to hear Dr. Maris, Dr. Mattay, Dr. Sholler, Dr. Modak and others. I’m looking forward to another opportunity to hear some of the most important Doctors in the country addressing Neuroblastoma. There is still so much to be done. I’m glad this time it’s on the east coast so that I can drive. Aunt Debbie lives near there and my niece Caitlin is in nursing school at UVM.

Please continue to pray for Penelope (NB) and for Matty (hepatoblastoma), both are running out of options for treatment. Also for Kendall, who is a twin, who has recently progressed despite treatment.

Thanks Alysa, so much for helping us. We love you and had fun going on an adventure with you. I could not have managed everyone alone and am so grateful that you could come.

Thanks to everyone who continues to pray for my family. I’m grateful for all the support that we have gotten. I’m so lucky to be able to be home with the kids at this time. I’m still trying to figure out what job would work best for me. At this point I still think I’d come up short with sitters, daycare costs, etc., but I’m working on a plan.

I miss Scott everyday. Things are so much easier with 2. Mostly, I miss my best friend. I know his spirit is with us, but the kids are growing and changing so fast, and I’m sorry that he can’t be with us physically day to day to do all the things that we had planned. It’s also hard to not have him here to talk to, or to ask him what he thinks about this or that. Today I was thinking that he would be outside with Scott A. As usual, he was hammering away and building something with Sean as his laborer. Scott would have made the grill cheese sandwiches and been overseeing the job site and teaching Scott and Sean the tricks of the trade. I just miss him.

God Bless, Love, Ellen
XOXO

Monday, February 5, 2007 4:18 AM CST

February 5, 2007
Please keep our friend Matty and his family in your prayers. They have received bad news yet again as his lung tumors have grown and multiplied. He is an amazing kid and they are a special family. http://www.caringbridge.org/visit/matty

Also please pray for Penelope who has been struggling with her NB treatments and has had a rapid decline in her physical health. She too has a special family that has done so much for her and for others as she continues her battle.
http://www.caringbridge.org/ny/penelope



February 3, 2007

I was able to take the kids skiing for the first time. My timeshare didn't rent for the whole week, so I decided to use it. We got to see Grammy on the way up and on the way back. The kids love to go to Grammy's. The first day was too cold to be out, so we checked on tickets etc. The next day I put the little ones in a lesson and when they were settled Scott and I headed to the top. Scott loves to go to the “top.” We took the “Easy Street” down from the top. It’s a nice long trail that winds around the mountain. He listens carefully (thankfully), and is really skiing well. Papa and Grampy Bill were avid skiers. That’s why I feel it is so important for the kids to get to go, at least enough to learn while they are so young. I only had1 1/2 hours until the lesson was over, so Scott and I got in as many runs as we could. The next day we did the same. In the morning though I took all four over to the “magic carpet”, like a moving sidewalk and a gentle slope. I was kind of afraid with all four going up thinking, “how will I get them all down?” Well, they got off one at a time and before I even got to the top they were all skiing down. So up and down we went for an hour. I had fun watching them all, and they had fun skiing with Mommy and Scott. Scott (7) took Sean (4) and it was so cute watching him giving Sean “lessons” and Sean trying to follow him along. As soon as I got them all back for their lessons Scott and I headed to the top. It was colder today and they had already been out for an hour, so I was worried about it they could endure the whole lesson. Uncle David works at Cranmore. Papa used to work there years ago too! David waited for Scott at the top and got his picture taken. He was leaving work, so Scott got to see how he goes “down” on the chairlift. Scott and I skied down the back of the mountain, which has always been one on my favorite trails although it is very short. The lift there is old too, and I remember it from years ago. My friend Stephanie taught me to ski at this mountain in high school. I have lots of fun memories there that this old lift suddenly brought back. After a few more runs, I told Scott about Aunt Stephanie’s favorite trail, “Rattlesnake.” Really I wanted him to go on some harder terrain and not get too used to “Easy Street”. Off we went and he did fine. I think he liked the name of the trail. At the bottom we went to check on the kids. Sean and Kathleen had had enough. Heather wanted to keep skiing so I left Scott with her at her lesson and walked back with the other two. It’s a long flat walk back to the lodge for tiny legs. 15 minutes later the rest of the gang came along. It actually wasn’t nearly as bad as I had anticipated with all 4. I have to get them going so we can all go and not have the expense of the lessons. Uncle David made many calls and gave us his free tickets, thankfully he was able to save me a lot of money. Thanks Uncle David! Scott met David and went home with him to do boy stuff, “burning”. I got everyone’s suits and we went over to David's hot tub. The kids love that and are so cute. They also have been good listeners and know when we are doing “dangerous stuff ie: me taking four kids when 3 don’t swim, into pools, etc.,” to listen to Mommy. Sean has been pretty naughty lately. He thinks it’s funny and likes the girls to follow him getting into mischief and doing sneaky stuff. I’m so glad that he will listen when we are doing “dangerous stuff.” We had a great dinner that was completely unplanned and everyone had fun. The kids enjoyed Ruby the dog, which kept them entertained so the grown-ups could talk.
They love the condo because they are allowed to use the couch cushions to make forts. On the way home I hit traffic in Boston, as I usually manage to do. We stopped for dinner. They were tired and didn't eat well. Sean spilt his milk 3 times. Thankfully, the waitress was good and likes kids. They had lots of fun going to the bathroom every few minutes and even did a cute dance under the hand driers that I caught on video. Pretty funny. We got home and everyone helped unpack the car. I hear my Dad when I’m telling them “Everyone works until the work is done.”
Thank goodness for suitcases with wheels. It makes unpacking so much more fun for four year olds. Sad to not have Scott with us, as I looked over and was picturing him sitting in the chair at the condo on the day we met, or to come home to the house in darkness. Somewhere far in the recesses of the mind, I still somehow wish it were a dream and I’ll wake up one day and he will be here. Heather told me the other day that Papa is right here, “he is in my love heart.” She held her tiny hand to her chest.
They missed 2 days of school, and will miss more for out trip to NY for Sean’s check up and again when I go to Vermont, but I figure our travels and experiences are educational too. Sean will be seen by the long term effects Doctor at Sloan. I don’t expect many as his treatment has been minimal with 3 days of high dose chemo and the 2 surgeries. I just hope that it never comes back, so far we have really been blessed. I know I will always worry. Right now he is full of energy and looks great so I’m not worried this time. He won’t have a scan until August. Please say a prayer for our friends. Dylan from Australia is still at Ronald where they have been living for over 2 years. His Dad and brother are at home and come whenever they can. I’m sure we will see other friends and meet new ones. And I’ll think of all the friends we have met who no longer have the need to be there as their children are Angel’s now in Heaven. So sad that there are so many in the 3 years since Sean was diagnosed.
God Bless,
Love, Ellen
XOXO

Wednesday, January 24, 2007 4:26 AM CST

January 24, 2007

Today is a special day! It is the day that Scott and I met 10 years ago. I can’t believe it has been 10 years! Thank you Steven and Lisa for introducing us! How lucky I am that we met! I had 7 1/2 years of Scott is my life and the rest of my life with Scott in my heart. I miss him everyday and still his not being here does not even seem real. I miss laughing with him. He had a dry sense of humor, and no matter what else was going on, he could always make me laugh. Like Scott, I miss his “warmth”. It’s still so strange to me as I look back and read my own words in this journal that he could be here one day with us, at the mall or at the beach and then suddenly be gone, forever. I feel so blessed to have met him, that I have all of the kids, who are each a part of him, and that I have the memories that I do. I’m so thankful that Sean is doing so well, and that all the kids are healthy. Knowing that Neuroblastoma can be such an aggressive cancer reminds me everyday to be thankful for what I have. I guess that God has a plan. I certainly don’t get it and know that I’m not meant to. I pray that Papa is somehow with us and watching over us. I just wish that he were here. I miss him.

Thanks for checking on us and praying for us, and for our friends.
God Bless,
Love, Ellen

Tuesday, January 9, 2007 11:22 AM CST

January 12, 2007
Please say an extra prayer for Little Penelope and her family. Her Neuroblastoma has continued to progress despite heroic efforts. http://www.caringbridge.org/ny/penelope
Thank you and God Bless,
Love, Ellen



January 9, 2007
A Happy Healthy New Year to Everyone

We all had a wonderful Christmas despite the fact that I was not prepared due to being at the FDA meeting and losing some precious Christmas “time”. Thankfully The Elfin magic continued throughout the Season at the Hanson Household.

Scott made be a beautiful Christmas Birdhouse with his big brother Tom. It has Christmas Tree’s with ornaments and a little sign that says Santa Claus in Scott’s writing. He is very proud of it and Tom tells me he just loves spray paint!

Carol and Bob sent lots of goodies which the kids just loved. They all have new books and stuffed animals from Dr. Suess and other fun stuff.

The multiples group Keeping Pace with Multiple Miracles remembered us and Sean has taken possession of a new Big Wheel. He races around the deck making car noises and it is just perfect.

Big Brother Big Sister remembered us with more goodies for everyone.

Sotherby’s Real Estate Employee’s where my sister works remembered us.

We even had a secret Santa leave something for everyone hanging on the door.

Most touching was another cancer family who had had a generous donation to their own fund and then decided to share it with our family.
Then knowing about the chaos it Christmas time, called to be sure that I had received it! How Special is that!

So you can see that we truly had a magical Christmas. It’s great fun for Mom as I believe and really don’t know what is in the packages!

Thanks to all the other elves that remembered us by putting a little magic for the kids fund into their holiday cards. I am truly blessed. Words alone cannot express my gratitude.

Lunch for Life
Thanks to everyone who helped to decorate Sean’s giving tree, helping lots and lots of children with cancer.

For the New Year we went to Grammy's for Christmas in NH. We got just enough snow to really make it a winter wonderland. The next day was warm and the kids were out sledding and snowmobiling around the yard all day. Scott enjoyed using sharp tools, helping with a giant bonfire, driving the snowmobile and doing other dangerous guy things with his 2 Uncle David’s. He told me that Indians are considered men at age 7 and that he is 7 and 3/4! I so appreciate the “man time” for Scott, but it also makes me miss Papa Scott to be at his house with the kids and the reality that he’s not nor never will be there with us again, except in spirit.

Please continue to pray for our friends. Anthony who was 16 yrs. old passed away this week from osteosarcoma. Laura passed just before Christmas from Neuroblastoma, and another little girl names Mallory only a few hours later. I met another family who lost a little boy named Cian. He was diagnosed at 5 months and was gone 7 weeks later from Neuroblastoma. Many of our friends are being treated for relapse or progression for which there is no cure. All treatments are experimental. We also seem to have a steady stream of newly diagnosed kids.

Sunday night I got to go to a Friends For Life NB parents dinner at Dana Farber Cancer Institute. It was great to see what's going on right in here in Boston for Neuroblastoma Research. There is much to be done. It was also a comfort to see that there were some long term survivors in the group!

Thanks again for your continued support and prayers,


God Bless, Love, Ellen
XOXOXO

Wednesday, December 20, 2006 4:38 AM CST

December 24, 2006
Thanks to so many for making our Christmas Merry and Bright!
Merry Christmas~
Love, Ellen and the kids
XOXOXO

December 22, 2006
Our friend Laura passed away this morning. We were able to visit with her this past summer when she was vacationing at the Cape. I also got to see Laura and her Dad in NY at Sean's last check up. Please say a prayer for her Mom and Dad and for her sister. Laura is at peace and free of Neuroblastoma. http://www.caringbridge.org/visit/laurastiles if you would like to leave a supportive message. Please also remember Angel Sophia and her family. Sophia gained her wings 12/23/04 at the tender age or 4yrs. http://www.caringbridge.org/ma/sophiamarie

God Bless, Love, Ellen

December 20, 2006

Ho! Ho! Ho!
The kids are getting excited for Santa and Christmas. We have been busily learning Christmas Caroles and the Story of Christmas. I was away last week to speak at an FDA meeting. Leaving for a week at Christmas is tricky, but not nearly as tricky as having a sick child at Christmas. Thank you Ruth, Rose and Amanda for taking care of the kids. A challenge I’m sure. (I don’t usually leave all 4 of them home for that long, I usually have Sean and Scott with me in NY.) I really appreciate everyone's help. Thank you Ruth for decorating the tree for me while I was away. What a pleasant surprise. I love Christmas and Christmas lights. I’ve been wrapping furiously and it looks like I’ll get most of it done. Some of the Christmas cards may be New Years cards, but that’s ok.

The Elfin magic has already begun here at Hanson Headquarters. We received 3 large boxes from Carol and Bob, Thank you. We received some much appreciated gift cards from Scott’s school. Scott was able to make a special present for Mommy with his big brother Tom. (I wonder what it is?) Lots of friends have remembered my family again this year. It really does bring tears to think of so many people thinking of us. Thank you, thank you, thank you.

I keep showing the kids the movie about Santa Clause coming to town. Sean doesn't seem to appreciate the potential hazards in not being a “good boy” at this time of year. I’m still working on him, he was a tiny bit less naughty tonight, so there is hope!

Scott is in first grade, but actually it’s a combined first and second. I’m having to field a lot of questions....then it’s so cute when he explains it all to his siblings.

Tiffany’s boxes got in the mail thanks to some help wrapping from Amanda. Phew. Glad that’s done in time. (I did forget a few things Tiff, so I’ll be sending another box...)

Everyone has been to the doctor for their month long cough’s. I’m embarrassed to send them to school. The Dr. says that they are fine.
I did get some medicine for poor little Heather. She coughs and chokes at night. I don’t know if it helps or not.

Lunch for Life
It's that time of year again! Check out www.lunchforlife.org You can purchase an "ornament" for Sean's giving tree. For each $5.00 donation the child receives an ornament and a chance in a drawing to win a trip to Disney. Each donation produced a "giving code" that can be passed on. Donations made with the "giving code" produce additional ornaments. Sean's code is 19512. The funds raised benefit the Children's Neuroblastoma Cancer Foundation (www.cncf-childcancer.org). This is the group that hosts the Neuroblastoma Family Conference that I go to in Chicago. They also raise needed funds for Neuroblastoma Research. Neuroblastoma is rare, underfunded, and too often very aggressive and fatal. The treatments are harsh. We have lost too many friends to Neuroblastoma in the 3 years since Sean was diagnosed. Please help kids! These kids do not have time on their side! Thank you so much Carol for being the first to give in Sean's name! I really appreciate your thoughtfulness and generosity!
*Wow! Sean now has 77 ornaments, Thanks Everyone!

Scott’s class is still doing a postcard project, collecting postcards from around the world. His friend Matty, who has Hepatoblastoma is also in 1st grade and is doing the same thing.

Please continue to pray for our friend Matty. He has 15 more lung tumors and has started a new treatment plan. His tumors have been chemo resistant.
Scott’s Postcard address is:
Mrs. Keenan's Class
Marstons Mills East HMCS
760 Osterville/West Barnstable Rd.
Marstons Mills, MA 02648

And Matty’s is:
Matty Dubuc, Grade 1A
St. Louis School
77 Boisvert Street
Lowell, MA 01850
Matty’s web site is http://www.caringbridge.org/visit/matty if you would like to follow his story.

Thanks everyone for checking in on us at this busy time of year. I really appreciate the notes folks leave in the guest book. I’m really missing Papa Scott. Please continue to pray for our friends. Many of the Neuroblastoma kids have relapsed or progressed lately. There is no know cure for relapse, and many of our friends are in the hospital. Please say an extra prayer for Austin and Laura, Please continue to pray for Sean and for our family. And please pray for all of the Angel Parents that are going to celebrate Christmas without one of their children this year. It breaks my heart, and I hope that they can hold on to some happy memories to get them through.

Enjoy the holiday season!
God Bless, Love, Ellen
XOXOXO

Thursday, December 7, 2006 4:55 AM CST

December 7th, 2006

Last weekend we went to the Angel’s Hope Christmas weekend. It is an all inclusive weekend for Cancer Families. The kids had a great time. There was food, a Magic Show and a Movie. In our room we found a gingerbread house, and many other surprises. That is Scott’s favorite part, as we have been here twice before. Scott remembered that the first year when Papa was here, it was snowing. I’m always surprised when he remembers details because he was so little. It was the first snow of the year. I’m thankful of the memories we have of being all together as a family. He remembers going in the pool with Papa too, and where he was sitting. This year, all the kids and Mom were able to enjoy the pool. The kids are all in swimming lessons and thought it was great fun to go in the big pool with Mommy. Mommy thought the hot tub was nice! At the end of the weekend is a buffet luncheon with a very special guest, Santa Claus. He has a gift for each child. Scott is sporting a new Red Sox watch, Sean has a new front end loader, and the girls have new ballet and fairy dress-up clothes. They were thrilled! Martha does an amazing job of coordinating all of this. She is an angel mom and lost her son Michael to a brain tumor. Unfortunately, Angels Hope will cease to exist this year.

I’m so thankful for all they have done for us. Through Angel’s Hope, we had our dinner made and delivered by volunteers for months after Sean was diagnosed and again after Papa died. She was able to get my front yard fence donated, so that the kids would have a safe area to play. (I’m thankful for the fence, every day, as we live on a pond.) Papa Scott was in the process of building one when he died. She also sent gift cards, personnal cards and a quilt for Sean. I hope that Martha will keep in touch and be able to enjoy more time with her family. Thank you so much Martha, for all that you have done for me and for my family.

Tiffany is doing well and enjoying her time in Virginia Beach. She is working at a restaurant. Santa needs to get some packages on the way soon!
Scott is enjoying Karate. Kathleen, Sean and Heather have just started a dance class. Thankfully, everyone has been pretty healthy.
We are busily decorating the house for Christmas, luckily I put the outside tree lights on when it was still warm. I won’t put up the big wreath in the front window this year. It’s too hard to find someone to put it up, and even harder to find someone to take it down. That is a little sad for me, as Scott put it up or took it down lickity split and washed the windows while he was up there. I didn't realize how tricky it is to manuever the ladder there until I had to do it. I almost took out the front window, and I’m not strong enough to handle the ladder. Other years I had friends or relatives help, but it’s just not worth all the effort. We have a new light up raindeer instead! Papa would like that. I miss him. Scott told me yesterday that Papa didn't want to be in Heaven, he wanted to be here with his family. He misses him too.

Lunch for Life
It's that time of year again! Check out www.lunchforlife.org You can purchase an "ornament" for Sean's giving tree. For each $5.00 donation the child receives an ornament and a chance in a drawing to win a trip to Disney. Each donation produced a "giving code" that can be passed on. Donations made with the "giving code" produce additional ornaments. Sean's code is 19512. (Don't forget to use the code.) The funds raised benefit the Children's Neuroblastoma Cancer Foundation (www.cncf-childcancer.org). This is the group that hosts the Neuroblastoma Family Conference that I go to in Chicago. They also raise needed funds for Neuroblastoma Research. Neuroblastoma is rare, underfunded, and too often very aggressive and fatal. The treatments are harsh. We have lost too many friends to Neuroblastoma in the 3 years since Sean was diagnosed. Please help kids! These kids do not have time on their side! Thank you so much Carol for being the first to give in Sean's name! I really appreciate your thoughtfulness and generosity!
*Wow! Sean now has 59 ornaments, Thanks Everyone!

Scott’s class is still doing a postcard project, collecting postcards from around the world. His friend Matty, who has Hepatoblastoma is also in 1st grade and is doing the same thing.

Please continue to pray for our friend Matty. He has 15 more lung tumors and has started a new treatment plan. His tumors have been chemo resistant.
Scott’s Postcard address is:
Mrs. Keenan's Class
Marstons Mills East HMCS
760 Osterville/West Barnstable Rd.
Marstons Mills, MA 02648

And Matty’s is:
Matty Dubuc, Grade 1A
St. Louis School
77 Boisvert Street
Lowell, MA 01850
Matty’s web site is http://www.caringbridge.org/visit/Matty if you would like to follow his story.

Thanks everyone for checking in on us at this busy time of year. I really apppreciate the notes folks leave in the guestbook. Please continue to pray for our friends. Many of the Neuroblastoma kids have relapsed or progressed lately. There is no know cure for relapse, and many of our friends are in the hospital. Please continue to pray for Sean and for our family.

Enjoy the holiday season!
God Bless, Love, Ellen
XOXOXO

Saturday, November 25, 2006 2:38 AM CST

November 23, 2006

Happy Thanksgiving!
I hope everyone had a special day. We stayed home and had a nice Turkey Dinner. The kids aren’t so big on turkey though. I had 2 plates and have lots of leftovers. The kids had mostly yogurt! We lit the fire and watched movies up in Mommy’s bed. It is still weird to not have Papa here to do the cooking and carving. Scott A. carved the turkey this year, with a little help from Mom.

November 24th, 2006

Today is my birthday! Another day that is is still weird that Papa Scott is not here to celebrate with me. A couple of years ago Little Scott told me that my birthday was boring. Being aware of that, I bought myself a cake and flowers for the kids to give me. Next they were looking for the presents to unwrap. I hadn't thought of that. Luckily others did. I started the day with a visit from my good friend Joyce’s Dad. They have adopted me, since Dad died and always remember my birthday. That made my cry. Next Rose, one of the baby-sitters came over with a gift and card. Next another friends Debra showed up with another gift and card. It was beginning to look like a party would happen after all. I met my friend Jenn, who gave me more flowers and a cake. I did a few errands and went home. My babysitter Amanda also had a gift and card. My sister Gael came over with a gift and another cake. Now I had 3 cakes. The kids decided that we needed pin the tail on the donkey and balloons, and so off we went. On the way home they thought we needed pizza for a birthday party, and so I called the pizza man, while they set the table and decorated.

We had a lovely pizza party and opened gifts! We played a baseball form of pin the tail on the donkey with a ball and glove. They all won and got to eat the giant lollipops that I had gotten in NY and forgotten to give them. I lost and they all giggled! I got a singing birthday card and so next we had a dance! Everyone got in their jammies and we had Birthday cake with a singing candle and even a knife that sings “Happy Birthday”. We had a nice fire in my beautiful fireplace that Papa built, I only wished that he could have been here. I got some new jewelry from a friend which was extra special when the little kids all decided that I looked just like a princess! I think I’ll spend all my birthdays with 4 year olds................
Next it was up to Mommy’s bed for more movies and everyone (pretty quickly) fell fast asleep! I miss Scott so much, every day. It’s very lonely to not have him to talk to (in person, I talk to him all the time.) I’m thankful that all the kids are healthy, and that we can be home together for my birthday. (On Scott’s last bday in 2003, we were at Mass General).

Please say a prayer for our friend Matty. He has 15 more lung tumors.
They have been chemo resistant and he needs prayers. Today is his brother Chris’s birthday too!

Scott’s class is doing a postcard project, collecting postcards from around the world. His friend Matty, who has Hepatoblastoma is also in 1st grade and is doing the same thing.

Scott’s Postcard address is:
Mrs. Keenan's Class
Marstons Mills East HMCS
760 Osterville/West Barnstable Rd.
Marstons Mills, MA 02648

Please say a prayer for Mrs. Keenan, who is out with surgery.

And Matty’s is:
Matty Dubuc, Grade 1A
St. Louis School
77 Boisvert Street
Lowell, MA 01850

Matty’s web site is http://www.caringbridge.org/visit/matty if you would like to follow his story.

Thank you so much to everyone who has taken the time to send postcards. I really appreciate it, and so do all the kids who are learning so much from this project.

Lunch for Life
It's that time of year again! Check out www.lunchforlife.org You can purchase an "ornament" for Sean's Lunch for life giving tree. For each $5.00 donation the child receives an ornament and a chance in a drawing to win a trip to Disney. Each donation produced a "giving code" that can be passed on. Donations made with the "giving code" produce additional ornaments. Sean's code is 19512. The funds raised benefit the Children's Neuroblastoma Cancer Foundation (www.cncf-childcancer.org). This is the group that hosts the Neuroblastoma Family Conference that I go to in Chicago. They also raise funds for Neuroblastoma Research. Neuroblastoma is rare, underfunded, and too often very aggressive and fatal. The treatments are harsh. We have lost too many friends to Neuroblastoma in the 3 years since Sean was diagnosed. Please help kids! These kids do not have time on their side! Thank you so much Carol for being the first to give in Sean's name! I really appreciate your thoughtfulness and generosity!
*Wow! Sean now has 36 ornaments, Thanks Everyone!

Happy Thanksgiving! So very much to be thankful for! And thank you for thinking of me on my birthday, and for thinking of my family.
God Bless, Love, Ellen
XOXOXO

Thursday, November 9, 2006 12:09 AM CST

November 23, 2006
Please say a special prayer for Matty and his family. He has 15 new lung tumors and his tumors have historically been chemo-resistant. His family and his doctors are looking for a new plan. http://www.caringbridge.org/visit/matty

Happy Thanksgiving to everyone!

Love, Ellen

November 8, 2006
We ventured up to NH again 2 weeks after our last trip! Grammy's birthday is Nov. 10th. Auntie Debbie, Uncle David and Cousin Keith were able to go over from Vermont and Uncle David, Sue and Cousin Ashley were around, so we decided to go too, and we surprised Grammy with an early Birthday Celebration. We got to go back to Jackson, NH for another picnic at the waterfall, and to see the Pumpkin People that are around town. This time though, the weather had turned cold and the river was high. It was kind of fun for Scott to see the same picnic spot with the river running so much higher than it had been. We went to a pumpkin celebration in town and were pretty much the only ones braving the cold. Scott and Cousin Keith enjoyed carving huge pumpkins while the little kids slept in the car and Auntie Debbie, Uncle David, Grammy and I drank hot cider by the fire. We all had a really good time and then went back to Grammy's for birthday dinner. It was a quick trip, just overnight, but it seemed so easy after sitting in traffic for hours just 2 weeks before.

The kids had a nice Halloween. Scott was an army guy and the kids were little chicks. We visited Scott’s school for a parade, visited friends and of course Trick or Treated. The kids were very tired. They got lots of loot, and were very happy by the end of the night.

Last weekend we visited Plimoth Plantation with our friends Jenn, Drew and Nathan. We visited with Wampanoag Indians and English colonists in the year 1627. The weather was beautiful and the kids had a great time running and playing. We are getting into the spirit for Thanksgiving.

Scott’s class is doing a postcard project, collecting postcards from around the world. His friend Matty, who has Hepatoblastoma is also in 1st grade and is doing the same thing.

Scott’s Postcard address is:
Mrs. Keenan's Class
Marstons Mills East HMCS
760 Osterville/West Barnstable Rd.
Marstons Mills, MA 02648

And Matty’s is:
Matty Dubuc, Grade 1A
St. Louis School
77 Boisvert Street
Lowell, MA 01850

Matty’s web site is http://www.caringbridge.org/visit/matty if you would like to follow his story.

Thank you so much to everyone who has taken the time to send postcards. I really appreciate it, and so do all the kids who are learning so much from this project.

I’m attempting to do the usual fall clean up, which can be pretty overwhelming. I rake and rake and the leaves just keep falling. The kids have fun “working” outside, and I just do the best that I can. I still miss Scott every single day, I guess I always will. I can’t believe the “babies” are now such “big kids”. Sean even has a wiggly tooth!

I took the Oncology Nurses Society chemotherapy administration course recently. It was very interesting, you just don’t want to be “living” it. I’m not sure yet what I’ll be doing with my new found knowledge, but it makes the research and reading make a little more sense.

Happy Fall! Thanks for the continued thoughts and prayers, and thanks for checking in on us.

Please continue to pray for our friends. Erik was treated in Boston. He relapsed 13 years later. He is just married and has had extensive treatment and has just relapsed again. Matty is doing fine after his arm amputation and is undergoing more chemo.

God Bless, Love, Ellen
XOXOXO

Thursday, October 12, 2006 11:38 PM CDT

November 3, 2006 Please pray for a new Angel. 5 yr. old Hazen is now at Peace in Heaven. Please say a prayer for his parents Scott and Suzan. We met them in Chicago and also in NY. God Bless, http://www.caringbridge.org/visit/hazen


October 12, 2006

3 years ago, Scott and I were in NY with Sean as he was recovering from his 11 1/2 hour surgery with Dr. LaQuaglia.
4 year’s ago, Sean was 4 days old and trying to learn to breath and eat on his own.
My gosh what a busy 4 years we have had.

Today, I celebrate that he is healthy and strong with no evidence of cancer except for the long scar. I am so very grateful!

The kids and I went to NH for the long weekend. The traffic was horrendous, but we managed to have a good time. We drove up to Jackson, NH to see the pumpkin people. Everyone in town gets into it and they have displays of “Pumpkin People”, doing all sorts of fun things. We had a lovely picnic at Jackson Falls and took lots of pictures. The kids were very good about coming with me one at a time to jump across the rocks, etc. Sean is the scariest, as he is a little too fearless, and fast! Next we went to the Pumpkin patch for pictures and each one picked out several gords, pumpkins and squash. This is another place that Papa Scott had taken us to. I was surprised this year when the little kids knew that we had “been here before.” Saturday night we had a nice Birthday dinner with Uncle David, Sue, Cousin Ashley and Grammy. Everyone enjoyed Birthday Cake and ice cream! Sunday, we went to the Sandwich, NH Fair. I have been in the past a few times with Grammy and with Papa Scott. Of course there were lots of memories and I was sad that he was not there with us, except in spirit. The kids got to see lots of animals, a parade and they enjoyed a pony ride. It was a very long ride home due to traffic but the foliage was beautiful! We always have a good time in NH, I just wish it were a little closer. Grammy actually grew her own gigantic pumpkins, so this year each one has an authentic, home grown by Grammy, real live Pumpkin! Cool!

The kids have been enjoying their new bikes, especially Sean, the Fearless! Today I got each of the kids a beta fish! I let you know how that goes, as they don’t know about it yet. It will be fun to hear the names that they come up with.

Saturday, I plan to have a Birthday Party for the kids on the Deck. Sean requested a party on the deck, and since I am so happy that Sean is here to have a 4th Birthday, a party on the deck it will be! I hope the weather is nice for them.


Scott’s class is doing a postcard project, collecting postcards from around the world. His friend Matty, who has Hepatoblastoma is also in 1st grade and is doing the same thing. So if you haven’t bought yours yet, why not get 2! That’s double the kids who will be learning and feeling the excitement of receiving something in the mail! Thanks to everyone who has participated so far. Scott alone has received over 50 postcards, and I heard that Matty’s are coming in in droves too. I enjoy looking at them as much as the kids. Thank you so much for participating in this project.

Scott’s Postcard address is:
Mrs. Keenan's Class
Marstons Mills East HMCS
760 Osterville/West Barnstable Rd.
Marstons Mills, MA 02648

And Matty’s is:
Matty Dubuc, Grade 1A
St. Louis School
77 Boisvert Street
Lowell, MA 01850

Matty’s web site is http://www.caringbridge.org/visit/matty if you would like to follow his story. He has a fantastic family, 2 brothers, and a cancer that seems to be resistant to chemo. Right now his brain tumors are stable, he has new lung tumors and he needs extensive surgery for his wrist tumor, probably amputation, and probably on Friday. Please keep prayers for Matty coming, as he is one tough kid and he Believes! Please pray for his family too.

Thanks to everyone who thought of the kids on their birthday! They really enjoy hearing the messages left in the guestbook and always ask “which one is mine?, when they see graphics. Thank you for checking on us and for visiting Sean’s website. Thank you for caring and for praying.
Happy Fall!
Love, Ellen and the kids
XOXOXOXOXO


XOXO

Sunday, October 1, 2006 7:32 AM CDT

October 8th
HAPPY 4th BIRTHDAY TO KATHLEEN, SEAN AND HEATHER!


October 1st
I took Scott to the fundraiser for Matty’s family. It was great to see such on outpouring of support! There were clowns, and a silent auction, lots and lots of people, and of course Birthday cake! Happy 7th Birthday to Matty!

Sean, Kathleen and Heather have their 4th Birthday coming up on Sunday, October 8th. I can’t believe they are going to be 4 years old. I don't’ know where the time went. They are such big kids now. I am very Thankful that Sean is here and healthy! We did a little early birthday shopping and they all have their very own bikes! We went up and down the road twice yesterday. (see photo) Sean really loves it and speeds along yelling “Weeeeeee!” Heather somehow must have bumped her tooth recently. I don’t know what happened, but her front tooth is turning black...Oh well, I can think of worse things happening.

They love school and get right on the bus. (see photo)

Scott is liking school too. He also started taking the bus home. He was a little jealous of the kids getting to ride on a school bus, so he is signed up now too. We can meet him at the end of the road and I can bring his razor scooter that he got in NY from Joanne. Thanks, Joanne! He is looking forward to his class helping to build a nature center. He has drawn out all the plans for it. I wonder if Mrs. Keenan knows that!

Scott’s class is doing a postcard project, collection postcards from around the world. It is very exciting and a great way to learn geography, reading, and other tid bits from around the world. Thank you to everyone who has taken the time to buy and mail a postcard to Scott’s class. His friend Matty, who has Hepatoblastoma is also in 1st grade and is doing the same thing. So if you haven’t bought yours yet, why not get 2! That’s double the kids who will be learning and feeling the excitement of receiving something in the mail! Scott’s Postcard address is:

Mrs. Keenan's Class
Marstons Mills East HMCS
760 Osterville/West Barnstable Rd.
Marstons Mills, MA 02648

And Matty’s is:
Matty Dubuc, Grade 1A
St. Louis School
77 Boisvert Street
Lowell, MA 01850

Matty’s web site is http://www.caringbridge.org/visit/matty if you would like to follow his story. He has a fantastic family, 2 brothers and a cancer that seems to be resistant to chemo. Right now his brain/lung tumors are stable and he needs extensive surgery for his wrist tumor. Please keep prayers for Matty coming, as he is one tough kid and he Believes!

The boys have gotten tons of postcards from all over. It is very exciting. Thank you so much for taking the time to make these boys feel special~

Order your Vineyardvines.com fall catalog. Vineyard Vines supports childhood cancer by supporting rallyfoundation.org and others. On page 101 you will find 4 adorable kids sporting their Vineyard Vines polo shirts! Thanks Erika, for including the Hanson 4 in the catalog. They think that is really cool!

There has been a lot of sad news on the list serv lately. Please pray for the families of Angels Christi and Erin and for all the children fighting for their lives. Lots of our friends have relapsed Neuroblastoma. There is no cure and no established treatment protocol for relapsed Neuroblastoma. Everything is experimental.

Well, I better go clean out the garage, so that I can fit these new birthday bikes inside!

Thanks for thinking of our family and for checking on us. Thanks Carol for the boxes that you sent. We haven’t opened them yet...but they sure are curious!

God Bless, Happy Fall!
Love, Ellen
XOXO

Saturday, September 23, 2006 1:07 AM CDT

Please say a prayer for yet another Neuroblastoma Warrior. Erin also passed away this week. She and Christi had played together at CHOP. So very sad. Two new Angels in Heaven.

Happy 7th Birthday to Our friend Matty!


September 22, 2006
Scott and I had a big day yesterday! My friend libby gave us Red Sox tickets. Scott was very excited. We wore our Red Sox shirts and hats and brought a Red Sox backpack. At security, the nice man put a ball in my backpack to make up for having Scott dump his soda. That was a nice surprise for him. He enjoyed the game and really watched it! We were there for Big Papi’s two record breaking home runs! It was a thrill just to be in the crowd. Of course we ate fenway franks, and a lot of other “junk”. The game was a shut out against the Minnesota Twins. We got to see “Wally”, the green monster and took lots of pictures. We stayed right until the very end. Well, it turns out that the Rookie players have to dress up like girls and go out to the road to hitchhike! It was very funny. I’m just learning baseball myself, so I didn't know the Rookie players. We did get some autograph’s and I looked up who they were later. We didn't get home until 1230 am. so I let him go to school late this morning! What a lucky boy. Thanks Libby, we had a blast!

Scott’s class is doing a postcard project, collection postcards from around the world. It is very exciting and a great way to learn geography, reading, and other tid bits from around the world. Thank you to everyone who has taken the time to buy and mail a postcard to Scott’s class. His friend Matty, who has Hepatoblastoma is also in 1st grade and is doing the same thing. So if you haven’t bought yours yet, why not get 2! That’s double the kids who will be learning and feeling the excitement of receiving something in the mail! Scott’s Postcard address is:

Mrs. Keenan's Class
Marstons Mills East HMCS
760 Osterville/West Barnstable Rd.
Marstons Mills, MA 02648

And Matty’s is:
Matty Dubuc, Grade 1A
St. Louis School
77 Boisvert Street
Lowell, MA 01850

Matty’s web site is http://www.caringbridge.org/visit/matty if you would like to follow his story. He has a fantastic family, 2 brothers and a cancer that seems to be resistant to chemo. Right now his brain/lung tumors are stable and he needs extensive surgery for his wrist tumor. Please keep prayers for Matty coming, as he is one tough kid and he Believes!

Kathleen, Sean and Heather are enjoying preschool. I got the bench in the picture and put it out by the mailbox. This is now called, “the bus stop”.
They actually shock me, that they get up, dressed, grab the backpacks and go. I did buy a cubby like they have in school to hang the coats and backpacks up. It works pretty well! It is a 1/2 day program, and they are fried when they get home. They are so exhausted, I can hardly keep them up for dinner. Then they seem to get their second wind? I wish I did.

I’m hoping to go to the fund raiser for Matty and his family on Sunday. It is also Matty’s 7th birthday. Please continue to pray for the Dubuc Family.

It is still difficult to even believe that Papa is not here. So much still needs to be done around the house. I wish he could play catch with Scott or watch him do karate. I wish he was here for the first day of school, or to hear about a baseball game. Mostly, I just wish he was here. I miss him, every single day. I guess I always will. Sean is doing fantastic, and Papa is watching over us.

Thank you so much for checking on us, our family and our friends and for contributing to www.lunchforlife.org, www.alexslemonade.org, www.cncf-childcancer.org so that more kids like Christi, Matty, and Sean and their families may not have to suffer in the future. Thank you to our friend Linda, the pizza lady. She still brings pizza to us on the 3rd Thursday of the month. Isn’t that so nice! Also to Bob and Olli who continue to baby-sit for the triplets most friday afternoons, just because!

God Bless each of you!
Love, Ellen
XOXO

Friday, September 15, 2006 6:19 PM CDT

September 19, 2006 Happy Birthday Maura! I hope you had a fun day.

On a very sad note, our friend 9 yr. old Christi (see below) passed away this morning at CHOP with her parents Angela and Shayne by her side. She also leaves a little sister Shayla. Please keep the Thomas's in your prayers for peace and comfort for everyone. Another huge loss for our Neuroblastoma Family as many of us get to know each other over time.


September 15, 2006
HAPPY HEAVENLY BIRTHDAY TO PAPA SCOTT!
We started the morning by getting the little ones on the bus. Little Scott and I then went to breakfast. I had hash and eggs in honor of Papa. Scott got a nice Mickey pancake and a fruit cup. Next we went to church to a mass for Papa Scott. The only reason Scott A. likes to go is that he likes to light the candles after mass and put the money in the container. That’s OK. I’m just glad he will go with me now and again. It seems we only make it to church on the days that we have memorial masses said, (which is far too often). I dropped him off to school and went off to help a friend with Lung Cancer-ugh, more cancer. The little ones are completely fried after school. They don’t really take naps, but need to. Everyone is asleep and it’s only 645pm. I just hope they sleep all night, so I can. Scott is off to the first big football game of the season, in the rain, with his “big brother”. Scott told me he is really “too old” to be a big brother and is more like a dad. He had requested very specifically a “carpenter”. Luckily his big brother, who is lawyer, also has a shop. They are working on some sort of race car..(?)

Tiffany called earlier in the day to wish me a “Happy Day!” She is still in Virginia beach and seems to be doing alright. I’ll call her back later for a more detailed update. I’m very much missing my digital camera, which is lost, and I may have to cave soon, and order up a new one. It’s just hard to do, as that one WAS new...just before I went to the Neuroblastoma Conference in LA. UGH! I’m very attached to both my camera and computer.

The Alex's Lemonade Stand hosted by my neighbors Janelle and Margie, went very well. Thank you to everyone who helped and to those who made contributions, bought jewelry or the Alex's Lemonade Books. My kids had a great time!

Scott’s class is doing a postcard project, collection postcards from around the world. It is very exciting and a great way to learn geography, reading, and other tid bits from around the world. Thank you to everyone who has taken the time to buy and mail a postcard to Scott’s class. His friend Matty, who has Hepatoblastoma is also in 1st grade and is doing the same thing. So if you haven’t bought yours yet, why not get 2! That’s double the kids who will be learning and feeling the excitement of receiving something in the mail! Scott’s Postcard address is:

Mrs. Keenan's Class
Marstons Mills East HMCS
760 Osterville/West Barnstable Rd.
Marstons Mills, MA 02648

And Matty’s is:
Matty Dubuc, Grade 1A
St.Louis School
77 Boisvert Street
Lowell, MA 01850

Matty’s website is http://www.caringbridge.org/visit/matty if you would like to follow his story. He has a fantastic family, 2 brothers and a cancer that seems to be resistant to chemo. Right now his brain/lung tumors are stable and he needs extensive surgery for his wrist tumor. Please keep prayers for Matty coming, as he is one tough kid and he Believes!

Please pray also for another Neuroblastoma Warrior named Christi. She was diagnosed with high risk NB one year before Sean. She and her family have fought valiantly for 4 years and Christi and her family need your prayers. http://www.christithomas.blogspot.com

Thank you so much for checking on us, our family and our friends and for contributing to www.lunchforlife.org, www.alexslemonade.org, www.cncf-childcancer.org so that more kids like Christi, Matty, and Sean and their families may not have to suffer in the future.

Sean’s urine tests came back within normal limits. His next checkup is not untill February and his next MRI is not until next year. I am feeling very blessed and am so thankful to all the folks that have helped us along the way.

Happy Birthday Papa, I so wish you were here with me today, and everyday!
The kids miss you too! Heather stuck her leg out of her covers the other night to show me how much she has grown...she said “I wish Papa was here Mommy, cause I want to show him too!” I reminded her that Papa is “with” us and loves us very much. Scott told me that he missed Papa today after church, and Kathleen had a long conversation with his photo, talking to him and rubbing the glass. Sean was fast asleep all cozy with his monkey, and I need to call Tiffany back, but she sounded good also~Thanks Papa for watching over all of our babies.

God Bless each of you!
Love, Ellen
XOXO

Saturday, September 9, 2006 9:40 PM CDT

September 9, 2006
Today is the day that Sean was diagnosed with Neuroblastoma. It was just a routine checkup. They sent him for an ultrasound. Scott was working at the hospital that day. As I was meeting his coworkers, I was called on the cell phone to go straight to the Oncology unit at Mass General Hospital. I cried for 3 days, as they told us he was Nmyc amplified and started high dose chemo. 3 days later, they told us the final pathology was a mistake and stopped the chemo, figuring he had probably received an intermediate dose. He was not nmyc amplified. They still felt that the tumor was inoperable, and that Sean needed to continue with chemo for 4-8 rounds. Next we went to Sloan for a second opinion. This opinion was radically different from the first one. In NY they felt that they could operate, although the surgery would be “Life Threatening”. He said that part over and over to make sure that we “got” it. We flew home so that Sean could celebrate his birthday with his sisters and two days later he had surgery with Dr. L. It was 11 1/2 hours long and he was in the hospital for close to 3 weeks.

Today we went to the pool with Jay and Billy. The only evidence of cancer is the long scar running up his body. He swam and played and ate a hot dog, hamburger and chips and chased the soccer ball around in the yard with his siblings. It was an emotional day for me. I’m so happy that Sean seems to be fine, but I miss sharing the good news with Scott. As I go over it all in my mind, I remember how Scott was here. He went with Sean to get the IV when I could not listen to him cry all wrapped up in a papoose any longer. He stayed overnight at the hospital so that I could go home to see Scott. I was so concerned that he went to school, and I never came home. (how ironic, that only months later, he would get up for work, and never come back). We spent Scott’s last birthday at Mass General when Sean was readmitted with fever. He sat by the window watching helicopters come and go or boats going by on the Charles River.

I should be rejoicing that Sean is healthy and I truly am. I just really miss Scott today too. My car needs brakes. It can’t get done until next week. It’s something Scott could probably fix. He did the brakes on the truck. I guess it is just September. He is not here for the first day of school. I have to write Deceased on all the school papers under Fathers Name. I don’t really have an emergency contact. All that stuff. I just miss talking with him about my day. About decisions. About celebrations. About Sean’s good news.

Please continue to pray for our friends. Especially for Christi, who is in a lot of pain with neuroblastoma. For Penelope, Erin, Sam, Matty and for families everywhere who are suffering.

Please support Alex's Lemonade Stand in Marstons Mills tomorrow 12-3pm. Please help to find a cure for Pediatric Cancer.

Sean is all tucked in his bed with his blankie and his paci and his monkey!
We have angels watching over us. God is good and I am blessed.

Love, Ellen
XOXOXO

Tuesday, September 5, 2006 10:57 PM CDT

August 30, 2006
Today is Scott’s first day of school! We went yesterday to see the classroom so that he is not too overwhelmed. He already knows some of the kids in his class from last year. It is a multiage class of first and second graders. I really like the teacher. She seems very into her job. Tomorrow I take the triplets to see their classroom. Originally they were to be split 2 in one class and 1 in the other. I did not like this idea at all, as one child would feel left out or different. I also don’t think it is a good idea to separate them from me and from each other on the same day. They too have already experienced loss, and I think it is too much at once. Thankfully, I spoke with the director and there was room in one of the classes. I had asked the triplet moms online and I was interested to find that 100% of them kept the kids together in preschool. One group is 8 and going into the 3rd grade together. How lucky they are to be able to be going to school together and to have each other. How lucky am I to have all of them. I miss Scott everyday. The kids do to. I miss having him to talk to about all kinds of things. He didn't even always answer,
but he was here, and he was a good listener. Scott says he misses his warmth at night. I do too. Please say a prayer for our friends, especially Christi and Penelope.

September 5, 2006 HAPPY BIRTHDAY AUNTIE GAEL AND UNCLE PETER!
Today was the triplets first day of preschool. They get to ride on the school bus! Sean said he wasn’t going, but was a very big boy buckling his own seat belt. Kathleen was great, and is planning to get a boyfriend and lots and lots of girlfriends. Heather was excited and the first one dressed, she however burst into tears and needed her “frog” and off the bus went with her screaming...ouch! I went to school with pages and pages of paperwork later and she was fine. They lined up to get off the bus and all seemed very proud to be in school like Big Brother Scott! WE will see how it goes tomorrow. I am very lucky to have Rose who came over very early to help me with the kids.

More Lemonade
There is an Alex's Lemonade Stand in Marstons Mills this weekend at Village Days. It is run by our friends Janelle and Margie. Please drop by for a nice cool glass of lemonade and support Pediatric Cancer Research. There is so much work to be done. Many of our friends are in difficult positions right now. Christi has progression and severe pain. She was friends with little Alex. (http://www.christithomas.blogspot.com) Matty has progression of Hepatoblastoma. Both parents are in very difficult positions with decisions to make that no parent ever should have to make. (http://www.caringbridge.org/visit/matty) Penelope, Erin, Sam and so many more are in need of prayers. Please help in any way that you can and support Pediatric Cancer Research!! The kids cannot wait!

Thanks so much for continuing to pray for Sean and for our family. I know everyday how blessed I am with Sean’s good health. Papa Scott is watching over us. (So are many of our friends and neighbors!) Thank you!

God Bless,
Love Ellen
XOXO

Unfortunately, I have lost my Digital Camera, which I am very attached to. I keep thinking it will “turn up”, but it hasn’t, so you will have to wait for the old film to develop to see new photo’s for now.....

Thursday, August 24, 2006 10:20 PM CDT

August 23, 2006

We walked up to Sloan to visit some friends, and then to Ronald. Scott did not want to miss the sidewalk sale that they have everyday. (Just like his father.) I got to see my friend Joanne, and Scott and Sean got to shop. They were very happy with their purchases, and Scott got a really extra special gift from Joanne. He also wanted a Ronald key chain for his new backpack for school. We walked back to the hotel, dropped off the stroller and went to Serendipity to meet with Shirley and Simon, who is a long term Neuroblastoma survivor, and a really cool kid. After lunch we went to Dylan's candy store, another famous spot. By then the kids were fussy so we returned to the hotel. Sean would not nap, and when I finally gave up and put him in the stroller, he was fast asleep! Scott and I walked back up to Sloan to get Sean’s reports etc., and then to the Disney store the Long was. We walked for miles, but the traffic was heavy in that direction and it seemed like too much work to unload and load a sleeping Sean into a cab along with the stroller and all the other gear! We went to the Disney Store and they each got some pirate things. We ate hot dogs from the street vendor and walked back to the hotel. They both wanted orange sorbet tonight served in a frozen orange. Scott decided that he wanted a New York Cheese steak sandwich. He liked the steak, but not the onions bread or cheese. Good thing we already had hot dogs.

August 24, 2006
We woke up and Scott used his new Scooter a friend gave him to scooter to breakfast. We ate at a diner close to the hotel. It happened to be one I had been to with big Scott. Although I didn't know where it was. I just walked up the street and there it was. It’s called the Ritz, and of course Papa made a big joke of that, as I like fancy places, and he liked diners. (Kinda nice as today is my anniversary, and I was already feeling like we have angels watching over us.) Next we grabbed our stuff and headed to the train station. Once there I discovered that I did not have the tickets. They were back at the hotel...and new ones are full price. Luckily Charlie the redcap put in a good word for me with the conductor, and he let us on the train. Getting off the train, I somehow lost my phone. An Amtrak supervisor found it and is mailing it back to me...ugh. Small matters in the cancer world and definitely par for the course for my trips to NY. Minor inconveniences compared to some in the past, but it seems to always be something! We made it home and its so nice to have everyone together!

We got to see lots of our old friends in NY and some new friends too. I was surprised to learn that Sean’s photo is in a couple of places on The Sloan web site, www.mskcc.com So not only did we get good news, but he is also a celebrity and in the company of his very gifted Dr. and friend, Dr. LaQuaglia.

Please say a prayer for our friend Stevo tonight. He is 16. His mom died a few years ago from colon cancer, and last week his Dad died suddenly. Also please keep Sean and our family in your prayers along with all the other kids and families dealing with cancer.

There is no place like home,
God Bless, Love, Ellen
XOXOXO

Tuesday, August 22, 2006 6:43 PM CDT

8/22/06 Prelim test results in NY are all good!!!!


August 21, 2006
We started our journey, early, thankfully. My car is too tall for the garage with the thule on the roof. We had to park a few blocks away and of course it cost a little more. The nice man helped us on the train, and got us a good seat. I always use the “nice man”, ever since Papa got stuck on the train. (See prev journal). Well the train was delayed as the acela before us on the track had a problem and had to be unloaded, then we had to pick up lots of passengers. Luckily we were not in a hurry. Sean actually had a nice nap, and the train man, gave me computer lessons and cleaned up my desktop! Scott was a great helper and was actually able to hook Sean’s suitcase onto his own and manage them both, while I took mine and the stroller. We are quite a site at Penn Station. A nice young man who was sitting with his girlfriend took our picture and then helped us all the way to the taxi stand with the luggage, and would not take a tip. There are so many good people out there! The hotel room is great. It is actually a small suite, so the bedroom is separate and there are 2 TV’s! We walked up to the hospital as we know our friend Laura in an inpatient. She had been to Cape Cod this summer and we were able to visit with her and her parents. Kids can’t visit but we left her off some small Cape Cod things and the boys played in the playroom. Sean also spotted Dr. Mike and gave him a big wave! We went to the church across the street St. Catherine of Siena. We said our prayers and lit candles for Sean, for our friends and for loved ones. Next we walked up to Ronald where we met Melissa and Dylan who are from Australia. We all went to dinner across the street and then went back to Ronald where the boys played army. Make a Wish was hosting a dinner, so we stopped by there for more ice cream too! Back at the hotel we checked out he rooftop restaurant where the boys can see the lights of the city and even go outside. At home it sounds like the girls are having a nice Girls Only time with Ruth! Please continue to pray for Sean, our family, and for the many kids with cancer. There has been lots of bad news lately on the Neuroblastoma list-serv and here at Ronald and Sloan. So many families fighting for life. The boys went right to bed. I Better too! God Bless and Goodnight!
Love, Ellen and the boys.
XOXO

Thursday, August 17, 2006 3:57 AM CDT

August 21, 2006
We are off to NY for a check up for Sean. They boys are up and ready for the train. I'm wishing Scott was here to drive us. Kisses for the girls, and we are off. Please pray for Sean and for all out friends, esp jarot, who is in Heaven, Sam who has just relapsed, Laura who is at sloan, and Penelope and Christi. Blessings, Love, Ellen





August 17, 2006

The latest big news is that the triplets will be going to preschool through head start. I’m very happy that they have been placed at Centerville Elementary as my friend Ruth works in that school. They also can go on the bus, which will make driving Scott to school a little easier. It will sure help with the costs of baby-sitting and give me time to actually get some laundry (maybe), grocery shopping and errands done without being tethered to my kids or paying a sitter! Hooray! Every little bit helps. Even though I am afrain I will miss them and am horrified about getting everyone up and out. I have 2 night owls like myself. Heather and Scott. It will be an adventure for sure!


Thanks to the Cotuit Kettleers for a fantastic summer, but for also enhancing Scott’s reading skills. He is now reading the yearbook, checking on stat’s etc. It’s all very exciting and good for him.
Summer will be over before we know it! Sean, Scott and I will be going to NY in next week for Sean’s checkup. I always get nervous just before we go and notice every “my tummy hurts” and “my foot hurts”. It is comforting to know that he will be having scans and Urine catecholamines soon. After scans, presuming they are good, the next few “my something hurts”, can just go by unnoticed. Thank you to Ruth and June who will be watching the girls at home.

I have poison ivy “still” and spreading. I’m on to a medrol dose pack next. It’s silly but sometimes I even try to weed. It’s a joke to think I can even make a dent in it, and I always end up with poison ivy, every year. I can’t do everything and I think I’ll put weeding back at the bottom of my “to do” list! It’s just that Scott kept things looking nice, and I like it that way. (I like lots of things as they used to be. :(

My kids are still grieving for Papa, each in there own way. Scott says that he would like to have a step-Papa...... from the Carpenters Union. Kathleen tells me that in “her” Heaven, there are 4 buttons. If you push the red button, you can come back. “Does Papa have a button Mommy?” “No, Kathleen, he does not have a button, but he loves you very, very much and can watch over us whereever we are.”
Sean, being a boy, just says “Papa is dead”. “Yes, Sean, Papa is dead. Papa and Mommy love you very, very much, you are Papa’s special boy!” Heather says, “When I get very, very, very old, and I go to Heaven, I’m going to rub Papa!” She has to rub my face when I go out. She wants to hold hands from the back seat in the car, and If she can’t reach, she will use her foot. She tries to be physically touching me all the time. She will lay down and suck her thumb and rub whoever is nearby. Mostly Sean. They are great pals. I’m still grieving too. I miss Scott every day. He had a great sense of humor. I’m also really missing Dad. I bounced everything off of the 2 of them. I’ve never been good at decisions. And then I miss Steph, just for someone to talk to and joke with. We talked on the phone many times aday, mostly about nothing and just having fun. The cancer thing is isolating. The death thing is isolating, and the triplet thing although NOT isolating, and I love them to pieces, but limits options as they do come up due to the babysitting issue.....ugh.

Then again, I am so blessed, that Scott and Heather love me so and want to stay within view. Sean too, says that he is staying with Mommy and not going to school. Heather tells me that she will go and If I miss her, her love will be in my heart! Kathleen is ready to go and paint and draw and dress up like a princess. She is the most independant, but also wants me to go to sleep holding her hand. She also thinks maybe I should drive them, like I do Scott. They are mostly very, very good. (Loud, but good.) They are all adorable and despite a little life threatening cancer, healthy! I love them to pieces, and don’t know where I would be without them.

Tiffany sounds great and is loving living in Virginia Beach. She likes her cousin/roommate, and it sounds as if all is going well there.


As the 3 year from diagnosis day comes up this September 9th, I am reminded how lucky we have been that we are here, that Sean is not paralyzed, that he is healthy, when so many of our friends that we have met along the way are now in Heaven. Please continue to pray for Sean and our family. Just after this date is Papa’s birthday on Sept 15th. We spent his last b-day at Mass General Hospital. Please continue to pray For Matty, Laura, Christi and for all our friends fighting cancer and their families. Also for the many families who have lost their Angels to cancer despite a valiant fight, and who now have to fight to go on without their babies. There are far to many!

God Bless,
Love, Ellen
XXXOOO

Thursday, August 10, 2006 2:29 AM CDT

August 10, 2006

We have been keeping busy with the usual summer stuff, baseball-thanks to the Big Brother Organization, swimming lessons and on occasion even the beach! Heather's Godparents are on Cape Cod. We had a nice lunch at the beach with Maura, Jerry, Barbara and Andrew, followed by a trip to the Candy Store. Each child came out with a shopping bag just full of every sort of goodie! thank you so much Auntie Maura, they have been entertained for days!

The latest big news is that the triplets will be going to preschool through head start. I’m very happy that they have been placed at Centerville Elementary as my friend Ruth works in that school. They also can go on the bus, which will make driving Scott to school a little easier. It will sure help with the costs of baby-sitting and give me time to actually get some laundry (maybe), grocery shopping and errands done without being tethered to my kids or paying a sitter! Hooray! (I think) Every little bit helps. Although I will probably miss them!

Summer will be over before we know it! Sean, Scott and I will be going to NY in 2 weeks for Sean’s checkup. I always get nervous just before we go and notice every “my tummy hurts” and “my foot hurts”. It is comforting to know that he will be having scans and Urine catecholamines soon. After scans, presuming they are good, the next few “my something hurts”, can just go by unnoticed. Thank you to Ruth and June who will be watching the girls at home. I toyed with bringing them all, but then I chickened out!

I have poison ivy again. It’s silly but sometimes I even try to weed. It’s a joke to think I can even make a dent in it, and I always end up with poison ivy, every year. I can’t do everything and I think I’ll put weeding back at the bottom of my “to do” list!

August 8th was 2 years since Sean’s Poppie died, my Dad. We went to church where a mass was said for Poppie and Nana Doris with Auntie Gael, and Cousins Caitlin and Christa, to the cemetery and to Dunkin Donuts. I really miss my Dad as he came over daily and was tying so hard to help me with the kids. I talked to him daily on the phone. I was just reading one of his favorite poems and thought that I would share it. It somehow seems to fit the cancer world so many of our friends are living in....with promises to keep, and miles to go before you sleep...

Robert Frost
Stopping By Woods on a Snowy Evening

Whose woods these are I think I know.
His house is in the village though;
He will not see me stopping here
To watch his woods fill up with snow.

My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.

He gives his harness bells a shake
To ask if there is some mistake.
The only other sound's the sweep
Of easy wind and downy flake.

The woods are lovely, dark and deep.
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

As the 3 year from diagnosis day comes up this September, I am reminded how lucky we have been that we are here, that Sean is not paralyzed, that he is healthy, when so many of our friends that we have met along the way are now in Heaven. I'm so thankful that I had my Dad here for the 3 months after Papa Scott died. My Mom died young and my Dad understood what I was/am going through. Please continue to pray for Sean and our family. For Matty, Laura, Christi and for all our friends fighting cancer and their families. Also for the many families who have lost their Angels to cancer despite a valiant fight.

God Bless,
With miles to go before I sleep,
Love, Ellen
XOXO

Sunday, July 23, 2006 1:54 AM CDT

July 25, 2006
**Please say an extra prayer for our friend Matty with Hepatoblastoma, (http://www.caringbridge.org/visit/matty). He has had yet again, another emergency brain tumor surgery. He seems to be doing well, but his cancer is resistent to treatment and he could use some prayers. Thanks, Love, Ellen

July 23, 2006

It seems that it was fundraising week around here!

Alex's Lemonade Stand alexslemonade.org
The Lemonade Stand went well and was fun. The kids got to come for awhile. I actually haven’t gotten time yet to count the money but it is around $400.00 I think. Scott and I bought a new table that folds up and is lightweight at his favorite store Home Depot. It worked out well and I think I will get another. We had a raffle for a gift basket and a gift certificate to a local restaurant, thanks Wimpy’s. Our next door neighbors won the gift basket which had a lemonade beach bag and some goodies for both adults and kids. Our neighbors actually gave the kids back all the kid goodies and Scott was particularly excited, as he had been eyeing the water balloons! The little ones enjoyed pouring some Lemonade and it won’t be long before I have 4 full time Lemonade Hosts! Thanks so much to everyone who stopped by to see us and for supporting Alex's Lemonade Stand. (see photo)

Kicks for Cancer
Saturday July 22, 2006 kids raised money for Cancer through the Pan Mass Challenge at Villares Karate Studio in Mashpee. The Pan Mass is a bike ride across Massachusetts and Joe who owns the studio will be riding. Kids and a few adults were sponsored for the number of karate kicks they can do in a set amount of time. Scott and some of his friends participated! Scott did 308 kicks! Congratulations Scott! Mommy is very proud of you! Kathleen and Heather even participated when the little kids decided to join in! Sean laid on the floor sucking his pacifier and watching with Mommy! (see photo)

Rally Across America rallyacrossamerica.org
We were honored today to meet some outstanding young people who are raising money for pediatric cancer. Austin and Tom are riding their bikes 5,000 miles across America. They started out in Atlanta, Ga and were in Boston this week. I contacted them, just to say hello, and it turned out that they would be on Cape Cod today. They made the trip from Orleans to Mashpee and joined us at “Kicks for Cancer”. Nick is with them, and is doing a documentary on childhood cancer. We also got to meet Erica of Vineyard Vines. Vineyard Vines is one of their sponsors and there happens to be a shop in Mashpee right near karate. I think the Rally kids enjoyed talking to fellow bicycle rider and fundraiser Joe! After visiting at Vineyard Vines we all went out to lunch at the Popponesett Inn. It’s on the Ocean and it was a bit windy which makes for good waves. The kids had Shirley Temples and Ice cream. After our late lunch the kids enjoyed playing outside with the big kids. They ran is circles and laughed and played “you can’t catch me..” etc. Well, the big kids tired out my little kids! (We also started the day with Scott’s swimming lesson and a birthday party prior to kicks for cancer and meeting the rally boys.) Sean and Heather fell asleep in the car at about 530pm. Scott really wanted to go to the Kettleers baseball game but the 2 kids were asleep. I parked in the handicapped spot for a minute and let him get out to see the radar gun the scouts use to see how fast these guys can pitch. I knew it was scout day. We didn't last long as a nice man in a wheelchair asked me to move my car. (Oops! You see we are not really handicapped, it just feels that way sometimes with a 7 yr. old and 3yr. old triplets. I couldn’t park any further away as I knew Sean and Heather were not going to wake up anytime soon, and I can’t carry 2 at once. Scott did get to say hello to coach and see the radar gun, so he was happy! We got home, I carried in Sean and Heather, fed and showered Kathleen and Scott, carried Sean and Heather up to bed....and they are still asleep! They all said the best part of the day was running around in the parking lot and when Austin lifted each one up to touch the bikes! They also autographed a t-shirt for Scott and at his request a dollar bill! Kathleen asked me if I could please call them to come over to our house to play another day and Scott asked if I could just pack the car and we could go along with them for the rest of their trip! I told him that we could continue to follow their journey online, and you can too. Please support our new friends Austin and Tom as they Rally Across America. (photo above)

Scott- More Baseball
Scott will be doing baseball camp again next week. He didn't do it this week because he didn't feel well on Monday. Sean and Heather had fevers and Kathleen was kind of lethargic too. It is still his favorite new thing. Last friday at the end of camp week the kids and players all had a little party with a slip and slide, and he got a bat with his name on it. He also got a new Kettleers t-shirt that he wears most every day! (see photo)

Sean, Kathleen, Heather
Sean’s next appointment for an MRI and a Renal U/S are in late August. He will have his urine for catecholamines and other labs done then too. He seems to be very healthy. He weighs 40 lbs. Kathleen weighs 30lbs. and Heather 28lbs. Heather still has 18mo. clothes that fit. She is growing but remains the “peanut”. I thought about bringing all the kids to NY this trip, but after a few meals out lately, and lots of naughty behavior, I’ve reconsidered. I’ll be taking Scott as usual, as it is one less to keep track of at home and he is good company for Sean. I always start to worry a little at scan time, but it is also a relief to find out that things are good, and I can ignore any little complaints for the next few months. I am always very aware of how very lucky Sean has been so far on this journey. September 9th will be 3 years from diagnosis.

Tiff
Tiffany is still loving Va Beach and it sounds like she is having fun and out dancing every night!

Prayers/Our friends
Thank you for your continued thoughts and prayers. I heard the door tonight and for a split second thought, “Papa’s Home.” It’s so weird how something so normal as a door opening can bring reality and grief right back into focus. Then I remind myself that he is home in Heaven and is with us all the time in our hearts. Please continue to pray for our friends. Neuroblastoma can be very aggressive. We have met kids with all kinds of cancer and so many of our friends and their families are needing to fight so hard right now. Many of the available treatments are harsh. Too often the outcomes are poor. Please pray for our friend Laura who is recovering from MIBG and has scans next week, for Christi who has once again, progressive disease and also for our friend Matty who is fighting Hepatoblastoma. Matty also has progressive disease.
http://www.caringbridge.org/visit/laurastiles
www.christithomas.blogspot.com
http://www.caringbridge.org/visit/matty
God Bless, and Thanks
Love, Ellen
XOXO

Tuesday, July 11, 2006 9:27 PM CDT

July 11, 2006
Alex's Lemonade Stand
Scott will be hosting an Alex's Lemonade Stand, locally, on July 15, 2006 at the Osterville Baptist Church, Main St. Osterville, at Osterville Village Days. This is the 10th or 11th local stand that we have been involved in. Scott is now a Veteran Alex's Lemonade Stand Host!
Please stop by and see us for a nice cold cup of Lemonade and help Kids fight Cancer! Funds raised benefit all types of Pediatric Cancer Research, “One cup at a time”. For more info, to order books, or jewelry, or to host a stand, check out alexslemonade.org, or follow the link below. You can also contact me directly for more information! Remember, “When life gives you Lemons, Make Lemonade!” Thank you young Angel, Alex Scott for coming up with this fun way for kids to help kids.

Kicks for Cancer
Saturday July 22, 2006 kids can raise money for Cancer through the Pan Mass Challenge at Villares Karate Studio in Mashpee. Kids can be sponsored for the number of karate kicks they can do in a set amount of time. Scott and some of his friends will be participating!

Scott
Monday
Besides making signs and coming up with new fundraising ideas for his Lemonade stand, Scott has also been busy with karate and baseball. He is this week attending the Cotuit Ketteleers baseball camp. We had a fun time going to a game tonight where “coach” gave him a ball from the game! Thanks coach! Scott continues to have a hard time with new things, can become overwhelmed, and always wants to know where Mommy is! Can’t blame him. He has experienced a lot of life in a short time. He seems to like baseball and I was very proud today that despite his anxiety, he did not quit! He is also taking swimming lessons and doing well with that!
Tuesday
What a difference a day makes! Today at baseball, I had to take all the kids and I told him that I could not stay with him every minute. He went right off with his group and had a great day! He told me that he “knows” the kids now. At the end of the clinic they play a game. He had some great plays and was very proud! On the way home from Karate, he noticed the “Game Tonight” sign, and so I did a u-turn and took them all to the game. It was a great game that ended in a tie! He is thrilled to know some of the players and be friends with “coach”. I had told him that the guys teach clinic, go to practice and have games every night. Today, we went to clinic, lunch, played at home, karate, and a game, kinda like the players. He told me he is going to play baseball every day all summer and go to games every night. He had the biggest grin and told me that we can do it like a pattern! I’m not sure I can keep up, but I think the Cape League baseball is the greatest! There is no admission fee for the games, and he sees other boys and has a great time!

Big Brother
After months of waiting, Scott now has a “Big Brother” from the Big Brothers/Big Sisters organization. This is something that is very important to me. My Dad who died 3 months after Scott E. was very concerned with Scott having a Male influence in his life. I also think it is important for him to have some “Scott Time”, without Mom, and to realize that this is Ok, and that I will still be here when he gets back! He also gets to participate in the baseball clinic due to the Big Brother Assoc.

Sean
His next appointment for an MRI and a Renal U/S are in late August. He will have his urine for catecholamines and other labs done then too. He seems to be very healthy. He is developing his fathers sense of humor and cracks me up. He does very silly things, and then says, “How do I Look?”, with a big grin! He also is the most mischievous one, and the girls just go along with him! He told me tonight that he just can’t help it, when I’m not looking, he just wants to do naughty stuff.

Sean, Kathleen and Heather
The kids are growing like crazy! They are all in swimming lessons and have adjusted to that nicely. They have really developed individual personalities and are all very funny. Also cute, snugly, lovable, and very loud! They were great at baseball all morning, which is really long for 3 yr. olds, and they were good at the baseball game tonight. I would not normally even think I could bring them, but we went as I was driving by, and they lasted the whole game! Coach even posed with the kids for some photos!

Tiff
Tiffany has moved with a Cousin to Virginia Beach. She has gotten a job and sounds great. She says she really likes being on her own.


Prayers/Our friends
We were thrilled this week to be able to spend some time with Laura. She is having treatment for Neuroblastoma in Pa., but was visiting Cape Cod with her family. Despite having to take 2 trips to Dana Farber for lab work, and a lot of rain, it sounded like they were able to enjoy the trip. The kids enjoyed walking with Laura to the beach and watching her open some small gifts so that she will remember her time on Cape Cod! It is always nice to put the names to the faces and meet the kids and families that we have been praying for!
Thank you for your continued thoughts and prayers. Please continue to pray for our friends. Neuroblastoma can be very aggressive. We have met kids with all kinds of cancer and so many of our friends and their families are needing to fight so hard. Many of the available treatments are harsh.
Often the outcomes are poor. Please pray for our friend Laura, and also for our friend Matty who is fighting Hepatoblastoma. God Bless,
Love, Ellen
XOXO

Thursday, June 22, 2006 3:08 AM CDT

June 22, 2006
Alex's Lemonade Stands
Our Mashpee Lemonade Stand made about $300.00 for Pediatric Cancer Research. Despite the rain, we were under cover at Roche Bros. and had a good time. Thank you again to Carol, Charlotte, Aiden and Stephen, Christa, Joyce and Meghan for Volunteering your time for our worthy cause. The “next” Alex's Lemonade Stand Locally will be July 15, 2006 at the Osterville Baptist Church, Main St. Osterville, at Village Days.
Please stop by and see us for a nice cold cup of Lemonade and help Kids fight Cancer! Funds raised benefit Pediatric Cancer Research. For more info, to order books, or jewelery, or to host a stand, check out alexslemonade.org You can also find a Lemonade Stand near you, or make a donation directly.

Scott
Scott has enjoyed Baseball this year. He was on the Cotuit Keteleers team, which is named after our local Cape League team. His team was invited to the opening day of their season. They were invited onto the field and each childs name and number was read over the loud speaker. Scott and his friends had a wonderful time running about and chasing down the players for autographs. Next time I’ll remember to bring a pen!

My first grader
I took Scott out to lunch to celebrate the last day of school and kindergarten graduation. He is excited to have the teacher that he requested for next year. It’s a multilevel class of first and second grade.
He also got a great report card!

Sean
Sean still has a slightly swollen lymph node that I am watching. It’s probably nothing and he seems fine. You never stop worrying about Neuroblastoma, though. His next appointment for an MRI and a Renal U/S are in late August. He will have his urine for catacholamines done then too.

Tiff
Tiffany has moved with a Cousin to Virginia Beach. She has gotten a job and sounds great. She says she really likes being on her own.

Kathleen and Heather
Both girls are fine except for allergies. One or another was up each night with post-nasal drip, which makes them cough and then throw-up. No big deal when you know what chemo would be like.

Summer fun
After Scott’s baseball game on Sunday, we headed up to NH. We stayed at Grammies for a few days and then at the hotel. On Sunday, we went to Storyland with Cousin Ashley and Grammie. I think it was the hottest day of the year so far. In the middle of the day, I went on a ride that spins, followed by a ride that bumps and developed a bit of heat stroke, with wooziness and nausea. I had to go sit on the floor of the airconditioned store while the kids played with Jack-in-the -box’s. After awhile I recovered enough to go on the bamboo shoots and Dr. Geysers wild ride. The kids just loved this! It’s a big round raft that bobs through water, while you are being squirted or sprayed or splashed by this or that. It actually felt great to get all wet and cool off! We went on this a few times and closed the park! Next we were off to Uncle Davids for dinner. Kathleen and Sean both fell asleep, but Heather had a great time in the little pool on the deck with Scott. I actually forgot to tell Uncle David Happy Father’s Day until later. We said our Father’s Day prayers for Papa and Poppie and left Roses at the cemetary before we went to NH. Everything about NH including Storyland reminds me of Scott. I’m sure he was with us in spirit, but I so miss having him here to see the kids grow and play day to day. Monday we played at Grammies and had Froot Loops for breakfast. I bought some once and now they associate Froot Loops with Grammies, so now I always bring some and they think it is such a treat! Next we went on a short hike to Diana’s Baths. They did fine and were good listening about climbing on the wet rocks etc. It was a little disappointing to find a large sign and benches along the way. When we were young, you had to look for a white fence and find your way throught he woods. There were no benches parked along the way. The only problem was that it is black fly season, which I had forgotten about. We are all covered in itchy bites. Tuesday we drove up to Crawford Notch to The Willey House. Scott was interested in the story of the storm of 1826 that created a huge mudslide. The slide actually unearthed a huge rock above the house causing it to split around the house which remained safe. Unfortunately it is summised that the family ran, as everyone was lost. Across the street at the river, we fed the ducks and went on another short and buggy hike. Next we were of the Stephens House. We didn't know if they would be home but they were and we had a nice visit. The kids were able to play with Daniel and Maive and we also got to see Stephen, Tish, June and Emma and Neville. Back at the hotel we met Lisa for snacks in the bar. Kathleen was able to see both of her Godparents Stephen and Lisa in the same day. Stephen and Lisa introduced Scott to me in 1997. Both visits were too short, but I was glad to see my NH friends. Later was the pool and hot tub at the hotel. The kids were very good for me and followed all of the Hanson Pool rules. It’s a bit tricky to take 4 young children who do not swim to the pool alone. Now that they are mostly potty trained, going to the bathroom seems to be a big thrill and adventure which is also tricky as all 5 of us have to go together. We made it home safely tonight and everyone helped to empty the car. I’ll worry about laundry and unpacking tomorrow. The kids are at a wonderful age. Of course, I think every age is wonderful, but they are really cute and funny now. They are also old enough now that Scott can really play with them. They all take care of each other, holding hands and making sure everyone is safe. I love them so much and am truly blessed. Sean is strong and eats like a football player.

Prayers
Thank you for your continued thoughts and prayers. Please continue to pray for our friends. Neuroblastoma can be very aggressive. We have met kids with all kinds of cancer and so many of our friends and their families are needing to fight so hard. Many of the available treatments are harsh.
Often the outcomes are poor. Please bless the families of Jacob and Laura as they learn to live without their child, brother or sister by their side. Also please say a prayer for Kevin and his family who have just lost their Dad. Their Mom passed not long ago.
God Bless,
Love, Ellen
XOXO

Tuesday, June 6, 2006 11:06 PM CDT

June 12th, 2006
I'm sad to read that Jacob Duckworth (our triplet friend) passed away last night. He is now cancer free and pain free. I'm so very sorry for his brothers and all his family.
http://www.caringbridge.org/fl/jacob
Bless them. Love, Ellen

June 13, 2006
More sad news as Laura, a beautiful young girl from Ma. also gained her Angel Wings after a long battle, since 1987 with Neuroblastoma. Prayers for Laura and her family.
http://www.caringbridge.org/ma/lauraashley
Love, Ellen



June 6, 2006

Alex's Lemonade Stand

Update: Our stand today made $235.00. Thank you to everyone who volunteered or made a contribution! Thanks for helping kids! (See new photos!)

It’s that time of year again. It’s the National Alex's Lemonade Stand Weekend. There will be Lemonade Stands all across the country. We will be having our Alex's Lemonade Stand at Roche Bros. in Mashpee, Cape Cod, Ma. Saturday June 10th, 11am.-3pm. (I hope.... a Nor’easter is forcast!) My sister Katie will be hosting one in Madbury, NH and my friend Heather will be hosting one in Metheun, Ma. Thanks so much to all the folks that have volunteered to help out. I hope the weather cooperates, because it really is fun and Scott is excited to again be a Lemonade Host!
Please stop by and see us for a nice cold cup of Lemonade and help Kids fight Cancer! Funds raised benefit Pediatric Cancer Research. For more info, to order books, or jewelery, or to host a stand, check out alexslemonade.org You can also

find a Lemonade Stand near you, or make a donation directly.

Fundraising
Check out Goodsearch.com You can type in a charity and .01 will go to that charity with each search. If enough folks use it, it will help. Please support Childrens Neuroblastoma Cancer Foundation to help Sean and his friends. I put it on my toolbar so that I remember to use it. You can also check to see how much money is being donated.
Thanks for your continued support.

Scott’s Birthday
Scott is officially a big kid now. He is 7yrs. old. (Hard to believe!) We had a pizza party on his birthday and this pas
t weekend he had a party with his school buddies at a ceramics place where he painted a baseball statue. Everyone had a really good time and it was really easy on Mom! A few of his friends could not go, so the little kids came along. They were all very good and enjoyed the painting as well as the cake. Thanks Abby for coming along to help us!

Summer Fun
The kids are ready for summer. We have been busy with baseball, karate, and end of school activities. It’s great to be able to get out with the kids. We live on a quiet road with a cul-de-sac. It’s so cute when all 4 get on their various vehicles and race each other around the circle! We have been on walks, to the beach, in the front yard, the back yard, etc. We have been learning a bit about birds from our neighbors, and Scott’s kindergarten class. This weekend we went to a sheep festival. It was really fun. We went on a hayride that was pulled by a big tractor, saw chickens, plenty of sheep, ladies spinning wool into spools of yarn, etc. It’s still alot of work, but much easier to go out now that they can get in and out of the car. They really are very good and love to go on adventures with me. When we stay home they just get into mischief!

Sean
Sean has a fever tonight, but Heather had one last week, so I’m thinking it’s probably some kind of bug. Last week I took him for a checkup as he has a swollen lymph node on one side of his neck. He is probably fine, but things like that make you really worry with your cancer kid. I bring them to the doctor for any little thing now. I used to wait and see, now I just go, even when I know they are probably fine. It’s always nice to have them checked. His next cancer checkup is in August. He is getting older and talks about his doctors and his cancer now. He knows that Mommy saw Dr. Kushner in LA and talks about how Dr. Mike took his tumor out and threw it away. I was getting ready for the Lemonade stand the other day and the kids all went upstairs and came down all dressed in Yellow. They are so funny and cute, and I am blessed!

Prayers
Thank you for your continued thoughts and prayers. Please continue to pray for our friends. Neuroblastoma can be very aggressive. We have met kids with all kinds of cancer and so many of our friends and their families are needing to fight so hard. Many of the available treatments are harsh. Please say an extra prayer for Matty (www.caringbridge.org/visit/matty) his bloodwork is indicating that his cancer is back and his treatment options are very limited. Also for our triplet friend Jacob who is very ill and on a respirator. (www.caringbridge.org/fl/jacob)
Please think of Angel Alex and her family this weekend, and visit a Lemonade Stand to help kids with cancer everywhere!

God Bless,
Love, Ellen

Wednesday, May 24, 2006 3:31 AM CDT

May 20, 2006 Los Angeles, Advances in Neuroblastoma 2006 Conference.

The flight to LA was fine, unfortunately, I did not have a window seat and heard that I missed a fantastic view. I arrived at the Hilton to meet Diane and we went off to Universal Studios for a fun filled afternoon. We saw the back lot tour and a few other special effects shows etc. We met Sponge Bob, Dora and Diego, as well as Spiderman. Wednesday was the start of the conference. The first two sessions were on Tumor and Cell biology which is rather complex. We met up with the other “parents” that were here, and started to seek out and speak to the many Doctors that we are familiar with. Eventually, we met many researchers from around the world who are working on cancer and the problem of Neuroblastoma. It was absolutely fascinating to be in the room with so many folks so deeply committed to the cause of NB. It was an Honor to be able to attend. Everyone also seemed happy to see some parents there, esp the lab folks who never actually “see” a patient! Everyone was extremely nice! I got home on Sunday morning. Auntie Katie said everyone was good while I was away. Uncle Scott got Scott some matching Carhart work pants and let him hold his chainsaw and wear all his safety equipment. That was a big hit! He needs “boy time”. Thanks to all the baby-sitters that kept things in order here so that I could go. More on the conference later. (See Photo Page)

Today is Scott’s 7th Birthday, May 24.
That’s the day that Papa Scott and I became a family. It’s the day the #24 became even more significant. We met on the 24th. My bday is the 24th. We got married on the 24th. The babies were born on the 8th. (8X3 babies=24) It’s the day Scott started to call himself Papa. (Tiffany calls him Daddy.) We had birthday eve last night. He opened his present from Carol and loved his new dvd’s. (Thanks so much Carol.) We made cupcakes for school and a big cake for tomorrow night. He put on his party hat and posed for this photo! Tonight we will have a small family get together and he will have a party with his school mates later. He is very excited and it should be a fun day! (More Photo's on Photo Page)

Alex's Lemonade
Don’t forget about National Lemonade Days for Kids Cancer. Out stand will be at Roche Bros, in Mashpee. June 10, 11am-3pm. Let me know if you would like to volunteer. I could use some help and some company!

I’m so glad to be home with the kids. They are so cute and I love them so much. I wish Papa was here. Each holiday or birthday just reminds me that he isn’t. Traveling too. He would have driven me to and from the airport, and answered the phone when I called to say how it was going! I miss him everyday, but some days are worse than others.

Well, I better get to sleep. It’s a big day today! The little ones are all excited too! Good night and God Bless, Love, Ellen

Monday, May 15, 2006 5:15 AM CDT

May 15th
Wednesday was 2 years since Scott died. I’m still in a bit of shock even 2 years later. I’m glad to see that Paxil is in the news, but it is 2 years too late for my family. We had a Mass said last saturday and Scott and I went to Mass Wed morning. We then went out to breakfast and had some Hash and Eggs, In honor of Papa. I let him stay with Mom and go to school late. After school we all went to the cemetery and planted flowers even though it was raining. The kids were so cute as we all held a white rose and said a prayer for Papa. We left 6 white roses, One from each of us. We even left one for Nana Doris and Poppie too. It’s just sad that such little ones have to be at the cemetery instead of playing and waiting for Papa to get home from work.

Mother's Day May 14
We had a nice Mothers Day. I can’t help but think about 2 years ago which was the day before Scott died. The kids made breakfast including ice pops and candy. They were so excited with the menu that they forgot to give me one. Tiffany left a giant card. Big Brother Scott helped sign the names on it. They then taped candies from Christmas that they had found to decorate it. Next I got a giant card Scott made at School. It included at picture of me that he insists looks like “Elvis” and a why I love Mom story. It also had a giant picture of flowers in a vase. My good friend Jenn came over with a plant, a gift for my trip and card. The kids were very excited. She then helped me clean and organize the kitchen for about 4 hours while the kids played. I am a pack rat, but now I really have no time, and it all gets so overwhelming. Now I can feel more comfortable leaving some counter space for sitters to cook and care for the kids. What a great friend, to spend her own mother’s day at my house cleaning! Thank you Jenn, I love you! I hope you got to relax when you got home. Later, the kids organized and presented my Mother's Day Parade and Show. It included a karate show/dance, basketball and tap dancing! Very cute. I love my kids so much. They are all thoughtful and cute! Also soft, warm and cuddly!

Lemonade
The Alexs Lemonade Stand will be June 10, 2006 at Roche Bros in Mashpee. Funds go to support pediatric cancer research. You can mail a donation directly here if it is easier. Address below. I'll need some helpers, but will get back to that next week. Let me know if you might be available to help! I'll also need a sitter for the little ones.

LA
I'm getting ready to go to LA to the Advances in Neuroblastoma Research Conference. I'm excited but nervous about the travel. It's hard for me to leave all the kids. I'm with them so much and I'll miss them. The logistics of getting ready with sitters, karate, baseball, rides to and from school, etc. are very tricky. Thank you everyone who is helping out so that I can go. It will be nice to have a live in one day (hopefully) to be a constant in the house. Auntie Katie is coming at the end of the week with her own small kids. Auntie Gael, and her kids Caitlin and Christa who will both just be getting home from school have promised to help out. Thanks to Joyce for taking Scott to school/karate, and his teacher for taking him home. I'm just getting ready to start packing.

Please continue to pray for our family and for our friends with cancer. There have been many Angels recently and many who are battling relapse, for which at this point they say there is no cure.

I hope all the Mom’s out there had a special day too. I think of all the Mom’s who have lost children and pray that they can feel their child's love and presence.

God Bless, Love, Ellen
XOXOXO

Please remember to sign the guest book. It is such a comfort to know that so many are thinking of us and checking on us and especially praying for us.

Thursday, May 10, 2006 6:40 AM CDT

May 10, 2004
Two years ago today, Sean's Papa Scott joined all the Angels in Heaven. Papa, We Love you and we Miss you! ~So Much
Love, Ellen, Tiff, Scott A., Kathleen, Sean and Heather XOXOXOXOXOXO


Thursday, May 4, 2006
Hello Friends, Sorry it's been so long without an update. Sean continues to do well. You would never know, it you didn't know!

Easter/Baseball
We all had a nice Easter. Tiffany took the kids out the night before so that I could finish up. Luckily, one of my best friends, Libby showed up just then and helped me out. The bunny arrived and the kids had a great time. We had a no fuss dinner of the worlds smallest ham. Tiffany was able to stop by in time to hide some eggs and Gael and Cousin Christa came over too. Later the girls put on their Easter dresses and we went to see Steph’s sister and Mom. The kids got more Easter baskets and were even treated to individual “bunny” cakes. Scott had the best time, as Alex played catch with him the whole time. He got a baseball and glove from the bunny. We are a little short on men around here, and Scott just thrived on the male attention and boy talk. Alex told him that his pants had grass stains like a “real” ball player. Scott was looking for his “grass stain” pants for the first day of baseball. He called Ruth and told her all about it, and then called Uncle David to see if baseball is in the genes. It turns out it is, as Grampy Bill coached the kids. All this made the first day of baseball a breeze for me. Scott is not very good at change or starting new things! Thanks Alex, I really appreciate your time and Scott sure did too!

Funerals
I had two funerals to attend Easter week. Please say a prayer for Deacon Stanley and his family from our parish. Deacon Stanley was instrumental in getting help for my family when Scott Died. He also lost a daughter to cancer. Please say a prayer for my friend Kevin's Mom and his family. She died very suddenly, after surviving a stroke many years ago. His Dad is also very sick with Cancer. More Angels watching over us!

Los Angeles/NB Conference
I’m excited to be going to the Advances in Neuroblastoma Conference in LA in May. I had a free ticket from last years Parent Conference and my friend Diane did too. We will both be going, although on different airlines. I hate flying and it will be hard to get on a plane to LA leaving all my kids home. I am excited however to meet the world renowned experts on Neuroblastoma. I have met some of the speakers before in Chicago. It’s also pretty tricky to find baby-sitters 24/7 while I am gone, and it’s such a long way that you lose a day on each end of the conference for travel. Thanks to everyone who is helping out with baby-sitting, especially Ruth who stays overnight and my sister Katie who will come so that the kids can feel “at home”. Auntie Katie has 2 little ones of her own, so I still need sitters, but she will be here at night and the kids may not miss me quite so much with cousins to play with.

Alex's Lemonade
It’s Spring and so that means that it is the beginning of Lemonade Season around here. I will be offering Alex's Lemonade Books for sale at Scott’s “Movie Night” at the elementary school on friday night. I figure that it is still hard for me to hold stands with so many little ones underfoot, so I will work on increasing awareness, and maybe get this next generation to hold some stands of their own. I will be holding a stand for Alex's Lemonade Stands National Weekend June 9-11. Ours will be at Roche Bros. Supermarket, Mashpee, Ma. for the second year. It will be on Saturday June 10th from 11am-3pm. I’d love to have some help if anyone is interested in volunteering. Thank you Roche Bros! My sister Katie will be holding her annual stand at Madbury Days in Madbury, NH. Thanks to everyone in NH for becoming involved. My friend Heather will be having one in her front yard. She already has close to $700.00 in donations and the stand is not until June! Nice work Heather! For more information, or to hold your own stand, check out alexslemonade.com or contact me. It is really a fun thing to do and the funds go to Pediatric Cancer Research!

Angel’s Hope Walk/Pirate Adventure
Angel’s Hope is an organization that supports families of children with Cancer. They have done so much to help us. Gift/Phone cards, meals, they even got our front yard fence donated. Please help this worthy cause if you can. I will not be at the walk as Scott’s Mass is at the same time. I will be at the Pirate Adventure, on the 24th and helping out on the 25th. You can check out angelshope.org or contact me for more info.

6th Annual Walk of Hope
Saturday, May 6th 10:00 am
Sign-in begins at 9:30
Harwich Community Center

Pirate Adventure Cruise
Saturday & Sunday, June 24th & 25th
Hyannis, MA
Tickets $18
Reservations Required
Departure times: 9:00, 10:30, Noon, 1:30, 3:00 & 4:30
To make reservations, or for more information, please call 508-430-0202

May
Well, it’s May. It’s coming up on two years without Papa Scott here with us. I am actually still in shock over the whole thing. We will be having a Mass said in his name on Saturday at 9 am. I miss him every single day still and I guess I have come to realize that I always will. I loved him so very much, and he was my best friend. I’m sorry for the kids when they do something new or as I watch them growing up without a dad. It’s even harder when they ask me why the other kids have a Mom AND a Dad. I remind them that my Mom died too, not everyone does have a Mom and a Dad, and that they are so lucky to have a Mommy and a Daddy that Both loved them so very much. Scott has karate two nights and now baseball one night and one day. I’m very busy, but realize too, that I busy myself on purpose. It’s just a very hard time of year for me. Two years ago we took the kids to the Zooquarium and out to lunch. This week Scott had a bday party there. I ended up taking the kids out to lunch (at the same restaurant, because it is there), and then back to the Zooquarium to the same sea lion show that we went to with Papa two years ago, shortly before he died. We sat in the same seats. They took pictures on the same little train. Papa liked to work outside and garden. At this time of year we are outside. All the things that Papa planted are coming to life. Many of the plants are from his first home in Melrose and then were transplanted to NH, and then to our house. Everywhere I look, I think of him. The back yard never got finished, so we are busy moving dirt and filling in an area that Papa started to put grass seed down. The kids keep playing on the swing set, which was placed where it is temporarily so Scott could build the deck. It is totally unsafe and not balanced. Naturally, they want to swing. If he were here, he could straighten it out..or throw it away and we would probably have gotten a new one by now. I have lots of happy memories, but it is May. I cannot help but think of him, A LOT. He loved Spring, and working outdoors. He did all the grilling and put tiki torches all around the deck. Those have rotted, and I’m working on replacing them. I’ll be glad when school is out and we can go to the yacht club and the beach and play. Thanks so much to our friend Paul who came over today and took down my Christmas wreath. I guess I shouldn’t put it up next year, since I can’t get it up or down alone. Then there is Mothers Day. Another reminder that I don’t have Mom, Dad or Scott. He died the day after Mothers Day. I know they are all in Heaven and watching over us, I just wish they were here! I do however have my kids. They are beautiful and funny and wild and silly and busy, and that’s what keeps me going. Next is Scott’s 7th birthday which is both happy and sad for me, it’s too close to the time that Scott died. He is growing so fast and is so cute playing baseball and doing karate with a big grin and no front teeth. I just think I’ll feel a little better when we get into June. I hope so.

Prayers
Please continue to pray for our friends. I am fully aware everyday, how lucky I am that the kids are healthy despite a little cancer. I know what I could be having to do everyday arranging for sitters and going to Boston like so many others for treatment. Please think of these kids, and stop by the Lemonade Stands this summer. Or have one of your own. Many of these kids don’t have time to wait for a cure. They need it now. Thank you for continuing to check in on our family. Thank you for the continued prayers. God Bless you and your family, Love, Ellen

Friday, April 28, 2006 03:18 AM CDT

Happy 21st Birthday Tiffany, We love you very much and hope you have a very special day today!! Lots of Love, Ellen, Scott A., Kathleen, Sean and Heather

Sunday, April 9, 2006 0:40 AM CDT

April 8th, 2006
We are in NH. This is “Yahoo” weekend at Wildcat Mt. in NH, sponsored by Dana Farber Cancer Institute. I packed yesterday and then picked up Scott at school. We met Auntie Katie and Cousins Lauren and Holly on the way for dinner. Next it was on to Grammy's where everyone stayed up too late. This morning we played at Grammy's and went down back to play in the “shop”. Scott thinks it’s Papa’s shop and loves to go there. Really it’s Grampy Bill’s although he too is in Heaven. It actually belongs to Grammy but has a vast collection of everyone's stuff. There are all kinds of fun things for little kids to see and play with. We came home with 2 new cans with every kind of nail in it! We checked into our favorite hotel, which was a very nice coincidence. Apparently, they could not arrange last years place for Yahoo weekend. I’m thrilled because this is the place where Poppie did business and we have been here many times on “trade” in the past, thanks Poppie. I am familiar with the staff and they are familiar with the Hanson children. (I’m sure they enjoy to see us come, and enjoy to see us go!) We ended up with a beautiful suite. It has 2 queens and a queen pull out couch. I had to laugh when all 4 kids snuggled in the same bed, with Mom. I did do a little rearranging! We went up to Wildcat and got to see our friends from Last year Matty and Chris and family. This year baby Zach got to come too. Like our kids. Last year only Scott and I came. They all ran and played and ate and had a really good time. Please say an extra prayer for Matty. He has Hepatoblastoma (liver cancer), has had a liver transplant, relapsed with a brain tumor and a wrist tumor, had more treatments and XRT and today found out he has a fx wrist and that the tumor has grown despite his current treatment plan. I’m so happy that despite a trip to Boston to the hospital this morning they still made it to Yahoo weekend, in NH! Please pray for Matty and his family. Scott went to his very first Red Sox game last year with Matty and his Bother Chris thanks to our friends at the Jimmy Fund, (DFCI). Visit him at http://www.caringbridge.org/visit/Matty and maybe leave a supportive message in the guest book. After enjoying an Italian dinner we returned to the hotel where we all went in the beautiful outdoor pool! They all stayed up too late again. Tomorrow is another day. God Bless and Good Night, Love, Ellen and the kids. (Scott A., Kathleen, Sean and Heather.)
Poor Tiffany is at home working! We love you Tiff, love, El

April 9th, 2006
We made it up to Wildcat just in time for breakfast. Scott was excited to ski, but our friends Rick and Ashley went out for a run to check it out and came back with an injured wrist and I was told not to let Scott ski. (Happy Birthday Rick, I’m glad we got to see you guys!) It was just as well and much better than getting hurt. It had rained alot last night and the slopes were all icy. All the kids had fun as they had entertainment for the kids all day. It took mine awhile to warm up to it all but they had fun all day. They hardly ate because they were too busy playing. Scott had his face painted like batman, which he did last year too! We came back to the hotel for a nap, which only Heather took, and Uncle David, Sue and Ashley came up, so Scott got to go in the pool with cousin Ashley! Next we went to the Red Jacket for a dinner and dance. The kids had a great time dancing with hoola hoops, etc. Scott is very cute, he keeps coming up with ideas that he can do to make kids happy. He talks about having a show for them or learning to make things with balloons or dressing up like a clown or learning to face paint. Hopefully, in the future he can do some of these things. It is really fantastic when you see all the kids just having fun and running and playing on the dance floor and you know what these little kids have been through.
Please say a prayer for our friend Hunter. She has just completed 2 years of chemo for ALL and relapsed after being off treatment for only 2 mo. Her siblings don’t match for a BMT and so she is in for another 2 years of treatments. Mom is running in the Boston Marathon on Monday. Best Wishes Katie! You can check on Hunter at www.caringbridge.org/ma/hunter

Thank you to our friends at Dana Farber for arranging for us to be able to take this trip. Thanks to everyone at Wildcat for everyone's hard work putting an incredible weekend together for kids and their families. Speicial thanks to my friend Linda, who always takes extra good care of the Hanson Clan.

Please continue to pray for all our friends with cancer. It’s so hard to see innocent children have to endure what they do. We are working on plans for some Alex's Lemonade Stands. Please remember these kids and pray for them. Sean is doing fantastic, and we are blessed.
God Bless, Love, Ellen
XOXO

Friday, March 24, 2006 11:05 PM CST

Hello Friends, Sorry it has been so long since I have updated. All of the kids got sick with vomiting/diarrhea and the boys also had fevers. First was Heather, then Sean who sort of stayed “sickish” as we say here, then Kathleen and finally Scott. It was 10-12 days before they were all over it. Poor Scott even missed school on St. Patrick’s Day. No Corned Beef for us! Luckily Auntie Katie and our friend Carol had sent the kids some St. Patrick’s Day things, or we would have missed the holiday completely. (Thanks so much for thinking of us!) Scott also c/o sore throat and ear ache. Both were fine, but while we were out to the doctor, we had to stop at school to pick up his Leprechaun trap and see if he caught any of the Little People. No Leprechaun’s were to be found and his teacher actually told us that they are very elusive and that she has not been able to catch one in ten years being a teacher! One did leave some candies behind in his trap though. Mom didn't know much about this “new” holiday, until Scott woke up sick at 4am. and wanted to go downstairs and see if the Leprechaun came. Luckily he went back to bed while Mom scrambled, and sure enough the Leprechaun did come here. He left the kids some chocolates in our decorative baskets that have shamrocks on them. (Phew!) Those of you with preschoolers, be prepared. The kids were sick from about March 10th to the 20th. Since then, its just been catching up on laundry and getting back to the day to day stuff like making a meal that doesn't include Jell-O. I’m fully aware of how lucky we have been so far, that Sean did not have to continue to endure chemotherapy. I could be dealing with the side effects of chemo day to day, and have the lingering concerns of long term effects, as so many of our friends do. I did get his MRI report, and there is still a little “something” there, again mildly improved. Dr. L says that he may always have something there. As long as it does not grow or change we continue on the path that we are. The further out we get from diagnosis, the better. I’ll continue to be cautiously optimistic as Neuroblastoma can also come back. The last few days have had shown some signs of spring and I am so grateful to be able to get everyone outside. We have been raking, digging, hammering, running, jumping, climbing, etc. All a little tricky for me after 10 days getting up and down from a tiny stool for sitting with toddlers by the toilet. (I actually did something to injure my knee.) Along with Spring comes Lemonade weather on Cape Cod. March 9th we attended the first Alex's Lemonade Stand of the season. It was held at Carver High School, and as you can see by the photo, the kids were excited to dress in Lemonade Outfits and go on an outing. We went with our friend Diane. Her daughter Sophia, like Alex, lost her life to Neuroblastoma. National Lemonade Days are June 9-11th this year. Funds benefit Pediatric Cancer Research. For more information check out alexslemonade.com. Anyone can have a stand and its really fun. It can be large or small, long or short. Any donation helps children, “one cup at a time”. I’m sure we will be having a stand, but I’m not sure where yet. If anyone has an idea, or wants to help out, please let me know. Please continue to pray for our friends, Emily and Kendall, both are twins being treated for relapse, 8 year old Christi, who has had rapid progression of disease despite aggressive treatment, Dylan who is still living at the Ronald McDonald House in NY, but who is from Australia, Jacob, Matty, and so many more! Please continue to pray for our family. I’m still struggling with finding a job with benefits and figuring out the childcare logistics. It’s instinctive to want to ask Scott (Papa), or my Dad , what they think, or to want to call Stephanie just to talk. I also think of my Mom, who died in 1978. She would have thought the kids were terrific, and would have helped with baby-sitting. Those of you with baby-sitting Moms and Dads, don’t forget to thank them! Spring also brings with it the anniversary of Steph’s death (Thurs.) and five weeks later Scott’s, and all the reality that comes with it. I’m very grateful for the friends that have stood by me and continue to “listen”. I’m grateful too for my large internet family/friends who continue to be supportive. I’ve met so many new friends since Sean was diagnosed with cancer, and the random acts of kindness are just incredible. Every kindness is noticed and appreciated. Thanks so much for checking in on us, and Happy Spring to all of you!
God Bless,
Love, Ellen
XOXO

April 2, 2006 Sad News
Please say a prayer for Cam, Courtney and Nick who have all gained their angel wings today. All 3 battled Neuroblastoma. Nick was at the NB Conference with us in Chicago in July. He was dx in 1996, and has been through more treatments than anyone I think, Many of them phase 1. His death actually came as a shock as he was NED (no evidence of disease), and in the hospital for something else, probably related to all the treatments that he has had. Nick was 16yrs. old. He was very Brave and an Inspiration to all of us! It's a loss that will be felt throughout the NB community. God Bless you Nick and God Bless your Family~You are a Hero!

Monday, February 20, 2006 11:20 AM CST

FEBRUARY 19, 2006
Friday night, Scott and I went to Disney on Ice, Incredibles. He had a great time. We were trying to figure out the MBTA trains. Luckily, we came upon a very nice man. I’m not sure if Tom is in the habit of adopting folks, but Lucky for us, he adopted us for the night. You see he happens to work at the Garden. He took us from one train to the next, made sure I did not lose Scott, and even told us where to eat. We moved our seats for a better view, which he assured us would be OK, and at the end of the show we thanked him. Next thing we know he is waiting for us at the stairs and kept us company as well as directing us from one train to another again on the way home. He even waved to us, as he got off at his exit off of the highway. Thanks Tom, we enjoyed your company and I really appreciate the help. Thanks also to Renee of Triplets, Moms and More for securing the tickets in the first place. Saturday was very busy trying to pack and play with the kids, feed them, do errands, etc.

Sunday
Daphne came over early to help with the girls and I got the boys packed up. We actually got to the train REALLY early. (Which never happens with me), so we changed trains and took the Acela. Scott calls it a “bullet” train and he was thrilled. Naturally, I was missing Scott to handle the baggage, and put me on the train. I made sure someone helped us on as I was having flashbacks on Scott getting “stuck” on the train by accident, (see previous journal, it’s always an adventure!) I had visions of the kids getting on, and me watching the train pull out of the station, while I handled the suitcases. It all went smoothly, and mostly they were good. Scott watched a movie and Sean and I ate and looked out the windows and went for walks. We got off the train with no problem, found the taxi and the hotel, which is a few blocks south of the hospital and Ronald where we usually stay. I immediately asked for an upgrade with 2 beds and a view, just like Poppie taught me. (Thanks Poppie!) Our room has a view of the Queensboro Bridge, The Roosevelt Island tram, and the East River. (All of these remind me of Papa Scott for various reasons as thankfully he was here the first two times that we ever came to NY.) I thought of Poppie too, knowing that if I were able to call home and talk to him tonight, he would tell me some history or story about the bridge. When I have internet access, Scott and I are going to look it up. There is a photo of Dad, Stephanie, Papa Scott, Sean and I in front of the helicopter that brought us to NY for the first time in September of ‘03 when we were so worried about Sean. Who would ever think that by September of ‘04 only Sean and I would be left. Hopefully, we will both be here for a very long time to come. Sean napped while Scott and I checked the place out and made it home. Next we ventured out into the city. We took the tram over to Roosevelt Island, just for fun, as the city lights were coming on. We took the local bus around the island and returned across the river on the tram. It occurred to me that we were having a “transportation” day. We had been in the car, on a train, in a taxi, in a tram, and on a bus not to mention on our feet and in Sean’s case in a stroller. That’s quite a day. Next we went to eat at a place that Sean and I have been before, California Pizza Kitchen. It is very kid friendly, with crayons, a coloring and activity book and free refills on the drinks. Scott really liked his Caesar Salad complete with goldfish instead of croutons. I think that will be a new favorite at home. Knowing that Sean cannot eat in the morning and being in NY where Sean’s cancer problem becomes much more “real” for me, the question about desert is always answered with a “yes”. Scott usually also joins Sean in being NPO (nothing by mouth) in the morning, not wanting to tempt his brother. Both boys had hot fudge sundae’s, Sean’s complete with a brownie. Sean enjoyed his brownie sundae so much that it elicited comments from other diners! When we are in New York, I tend to fall into the “Life is Short” mentality. I’m thankful that I can tell the boys about the different things “we” did, when Papa was in NY with Sean and me. I’ve always been a bit adventurous and spontaneous, but it has definitely been exacerbated by life circumstances. Scott is my best helper, and I think it makes him feel very grown up. He likes to hold the doors or carry the suitcase even when there are others willing and able. He also takes care of Sean, helping him with his hat or offering big brotherly bits of wisdom. We had a nice day, and I try to create happy memories, as Sean is getting older and more aware of what a visit to Dr. Mike might mean, “ouchies”. The last time we were here, he was able to have the anesthesia started BEFORE the IV with an inhalation agent. I’m hoping we can do the same tomorrow.
God Bless, love, Ellen
XOXO

Monday February 20, 2006
The day didn't exactly go smoothly, it never does. My “no ouchie” plan didn't go too well. They did agree to using the inhalation agent before putting in the IV, but it was a different anesthesiologist. The last one talked with Sean and gently told him to blow up the purple balloon, etc. This one held him down with the mask to his face, which turned into 4 people holding him down while he cried with the mask over his face. It is a holiday, and I wondered if she usually does pediatrics. I just hope he doesn't remember it. Some time later I realized that he probably needed labs and a urine for catecholamines and that it had not been ordered. Dr. Kushner said we can go without the labs. I hope Dr. LaQuaglia doesn't want any, as the IV is out. We will see him tomorrow after the Renal U/S. They put on the urine bag, but it leaked, so I put another one on tonight at the hotel. Too soon to tell if it’s going to leak. We got to see some old friends, and meet some new ones too. We got to meet Emily and MaryGrace and their parents, Sydney’s Dad, Jenna and her family, and to see Dylans Dad and Hazen with his parents. When we left clinic we walked to Ronald where we met Melissa and went to have a drink with her. Sean had Shepard’s pie and ate like a horse, and Scott just had a “double” serving of ice cream. They were both wound up from being couped up all day. We walked back to the hotel and everyone had a very late nap. Scott wanted to go out on the town, but settled for “movie night”, as it was much too late. We watched a DVD on the computer. I was worried about them getting hungry but we had soda and hor’deurves (goldfish), and they were fine with “room service” by Mom. Hopefully, I can get the results of the MRI tomorrow. I don’t have internet access in the room, but I can use it intermittently at the hospital. The girls are fine at home and had a special night out with Ruth, who thankfully always is willing to sleep over when I’m in NY even though she works and has 2 jobs. Better get myself tucked in. Good Night and God Bless. Love, Ellen

Tuesday February 21, 2006
We went to the hospital and got Sean’s Renal U/S which he was very good for. We waited most of the day to see the Dr. Scott actually loves the playroom and asks to go to the hospital when we have free time. We saw our favorite doctor, Dr. Laquaglia, who said that the MRI has No evidence of disease and also that the Renal U/S was good. The greatest risk for Sean is in the first 3 years, so the plan is for one more check up in 6 months and then we can go to Yearly MRI’s. The urine for Catecholamines is pending. It takes about a week for this test. Once we left the hospital, which was late, we grabbed a cab and went to the Staton Island Ferry. (It’s Free!) Poppie had told Papa Scott and I to go in 2003. We didn’t get to go that night and the next day was the Big Crash of the Ferry. Just a little history. Anyway, we boarded the boat just at sunset. We got to see the Statue of Liberty, Ellis Island, and go for a boat ride. When we got back we walked up to ground zero. The little fire station that is right at ground zero is back in operation, and the subway is running. I gave Scott a little history, while trying to keep it age appropriate. Next we went back to the room as it was late, and they were fussy. We got sandwiches delivered, which is strange to me, and very convenient. Everyone got cozy and watched TV. We had a busy afternoon, but got to see a lot of NY that they had not seen before. This morning, we ate at the “Tramway Diner” where the boys could watch the trams come and go. We grabbed a cab and were off to a quick visit to Central Park. Thankfully it warmed up enough to really enjoy walking around. We found the ice skating rink, and then the Carosel. We all rode on the Carosel, enjoyed watching the horse drawn carriages and vendors, and even made a quick trip through FAO Schwartz. Scott’s favorite was climbing on the “really tricky” rocks. We rushed back to get our bags and were off to Penn Station. We are on the “Regional” train now, and although it is quite different from the acela, the boys are having fun. Thank goodness for Sticker books. I’ll have to turn over the laptop now for movie time. We had a successful trip. They had a nice Vacation, and I can’t wait to see the girls!
11pm. We are home! Hooray!
It is still really weird to come home and have Papa Scott not be here. He just belongs here with us, and I miss him.
Thanks again to everyone who helped out with the girls. I feel so much more comfortable going to NY at this point, where they have a Neuroblastoma Team. It's all they do, and I ALWAYS see a Doctor. I really appreciate all the thoughts and prayers too. Please keep all our friends in your prayers too. It's just heartbreaking to see so many little children dealing with Cancer. I need to figure out a job and childcare soon. I wish I could think of a way to raise money for kids cancer, and get paid at the same time. I'll have to work on that one! God Bless, love, Ellen

Friday, February 17, 2006 10:19 AM CST

Hi, I hope everyone had a happy Valentine's Day. The kids had lots of fun. They woke up to a decorated table with little gifts and cards. They had fruit loops (which I never buy). Scott had a party at school and the kids and I went to lunch at Wimpy's. Later after Karate, we went to Daphne's for more gifts and candy. We got home late and everyone was tired, so I guess busy was good. My sister left a beatiful plant for me. I was missing my big Valentine, but am so blessed to have all the little one's and to be able to watch the magic of a holiday through their little eyes. Scott and I are now getting ready for the Incredibles on Ice tonight, thanks to the triplet group here that was able to get discounted tickets. Sunday, Sean and I will be off to NY. This time we will try the train again. The Ronald McDonald house is having some renovations, so we are staying in a htotel. I'm hoping that will simplify things some, where we will not have to bring the linens, etc. Please keep our friends in your prayers, especially Christi, Penelope, Kendall, Emily, Jacob, Matty and Dylan.

Thanks for your continued support and prayers.
Love, Ellen
XOXO

Wednesday, February 1, 2006 1:17 PM CST

January 30, 2006
I have time share in NH. I haven’t figured out how to trade it yet, and it didn't rent, so I figured I may as well use it. I took all the kids. That's quite an undertaking. Thursday we drove up to Grammy's. We called Auntie Katie (also in NH) at the last minute and met her and Cousins Lauren and Holly at TGI Fridays, on the way. The kids had a great time and we were very happy with the kid friendly service! Friday we visited w/Grammy and then went to the time share. Saturday we went to the mountain and signed Scott up for Ski School. He skied all day and had a great time. Tiffany was able to come this trip too and taught her boyfriend Taylor how to ski! Grammy met us there and helped me look after the kids. Luckily it was a bright sunny, unusually warm day, and we were able to stay outside all day. Sunday we got a late start, but went back to the mountain. Scott really, really, wanted to ski. At the last minute I put the kids in day care and went with him for 2 hours. We had a great time, and he was thrilled that he got to ski with Mom. I was thrilled too, to see how well he was skiing. We got to go to the top and take pictures! Always a “thrill” to go to the “top” when you are 6yrs. old, so you can tell your friends back at school! Two hours was actually plenty for Mom anyway! The really good news was that when I picked the kids up, I realized that it never occurred to me to even mention that Sean had cancer! (Even thought the forms ask about allergies and medical conditions.) Later we went to our favorite pizza spot, the Shannon Door Pub. Our friend Nora was not there, but friends Deb and Gordon met us for a drink, and treated us to dinner. These are friends I used to see in Ski Season every week. I actually haven’t seen them since the kids were born, so it was an extra special treat! Thanks for dinner guys! When we came out from dinner it was snowing and all the kids had a turn catching snowflakes on their tongues, while I buckled their sisters and brothers into their seats. Monday I packed up. This is a mission alone with 4 small kids, but they were mostly good and we did it. (The condo is upstairs, and it took many trips to the car.) Next we stopped for shoestring licorice in N. Conway which is our tradition and then to see Uncle David and his new house. Next we stopped at Grammy's to get what we forgot on the way up. By now I knew I would be in Boston traffic, and so our next destination was Auntie Katie’s house. She fed us dinner, Scott and I and Cousin Lauren went in the hot tub. The kids played dress-up and tea party. The only trouble with all this is that we were still 2 hours from home. They all fell asleep, but thankfully woke enough to walk upstairs, so I didn't have to carry all of them.

This is the week that Scott (Papa) and I met, at the time share in 1997. It’s comforting to know that he has been here. We took Scott A. skiing when he was two. I’m so glad to have the few pictures that I do of him skiing with Papa.

Our NB friends have had lots of bad news lately. Each of the NB kids in 2 sets of twins has relapsed, Emily and Kendall. There is no cure for relapse. Our friend Christi has been in the battle for a long time and seemed to be holding the beast at bay. She relapsed last summer, and suddenly the NB is progressing at a very fast rate. Please pray that all these kids can find a new treatment to keep the NB stable, or even to find a treatment that can offer a cure! Thanks again to everyone who contributes to www.alexslemonade.com (childhood cancer), www.myfriendsforlife.com (neuroblastoma), www.lunchforlife.org (neuroblastoma), www.cncf-childcancer.org (neuroblastoma) , and locally www.angelshope.org (childhood cancer support for families) and any of the other fundraising groups for children’s cancer. Neuroblastoma is rare, underfunded, and can be extremely aggressive.

Thanks for checking on us, and for all the thoughts and prayers. We still need them. God Bless, Love, Ellen

Don't forget to check for new photo's.

Saturday, January 21, 2006 0:13 AM CST

January 16, 2006
Hi, Happy Martin Luther King Day. Today is the day that my Mom died 28 years ago. I was 16yrs. old. My Dad missed her so much and was sad for years. Now I understand how he felt. I’m incredibly sad missing Scott. I’m also missing my Mom and Dad, and best friend Stephanie. I’m sure some of it is just January Blues too. It’s too cold this weekend to go out much. The kind of Days when Scott and I would go for a ride. I still do go for a ride to get the kids out, but I really miss having Scott to go with. He would bring my my coffee in the morning and watch the kids so I could sleep in. Then we would go out with no destination in mind and end up at a beach or harbor, or just driving in another town. Sometimes we would go to a festival we just came across while riding. We did alot of that in the few months before he died. Kind of waiting for Spring to come. I miss him every day.
Little Scott lost his other front tooth and once again has a “new look”. He is showing everyone, and can’t wait to get back to school and show his friends. The tooth fairy came and he was thrilled! Scott is over strep and thankfully no one else got it. In fact, everyone appears to be healthy right now. Sean’s next cancer check up is in February in New York. He will have his MRI and also a renal U/S to check on the reflux/hydronephrosis on the side of his left kidney.
January 21, 2006
We had another busy week, but thankfully it is all pretty “normal” stuff, just busy. I had been having trouble with the furnace but not gotten around to calling the gas co. At 2 am. the other night I again noticed the heat was out and attempted to light the pilot, a handy trick I had learned recently. This time it would not light. Next I noticed a drip and attempted to tighten the do-hickey thing on the expansion tank, and well, this is not really something to be attempted at 2 am. I created a flood and had to call my plumber friend and wake his family. He didn't have the parts but talked me through the crisis and told me who to call. Thanks Whitey and Kathy! The next guy couldn’t come for a few hours, but eventually and about $400.00 later the heat is fixed. This lead me to call the guy about the wood stove. We have one, but it has always smoked. He came today and showed me basically how to light it properly for $75.00. While he was here though, I had him show me how to start the generator, which is hard wired to the house. So I did end up with about $75.00 worth after all. After I got the wood stove going, and went out side I discovered it was about 50 degrees today, and felt silly about telling the nice man to keep the stove lit. Anyway, I will not complain after last years snow (including 3 ft. in one storm). I hope in never does snow this year, but am feeling more prepared with a rehab-ed furnace, wood stove and generator, all rearing to go! The kids had a nice day helping me carry wood, playing outside and going for a walk with Bob and Loli and even having a picnic (at Sean’s suggestion), in the front yard. Everyone is healthy at the moment, and I am blessed!
Thanks for keep all of us, and all our many friends battling cancer in your prayers. Sean’s site has had over 100,000 viewers. That’s alot of thoughts and prayers and I appreciate each and every one of them.
God Bless, Love, Ellen

January 24, 2006
Today is the anniversary of the day Scott and I met, 9 years ago. We always celebrated this day. We met at my timeshare in NH. I'll be going friday and bringing the kids. We did a lot in 7 years. We had a lot of fun. I miss him every single day, and I'm sorry for my kids. He should be going skiing with Little Scott. We did bring him once when he was 2yrs. and I'm thankful that I have pictures. The little ones should be in a lesson and then go out with Mom and Dad. I'm sorry for him too, to be missing all this. Instead, I'll put Scott in a lesson, and hope maybe Tiffany will help with the kids. And basically do the best I can. I still miss him terribly, everyday. I'm so grateful that I have the kids, and for the time that we did have together. It's just hard to keep going forward without him, and despite the time going by, it is all still very surreal to me.
God Bless, Love, Ellen

Wednesday, January 4, 2006 1:14 AM CST

Happy New Year!
Sorry it has taken so long to update, but as usual, we have been busy. We celebrated with my sisters Katie and Gael and their families on Christmas Eve day. We had a special visit from some folks whose house Scott had worked on in the past. Again this year these elves arrived with Merriment, Santa Hats and gifts for everyone. Tiffany came over on Christmas Eve and surprised the kids by being here when they woke up Christmas morning. The kids had a wonderful Christmas! Scott was pretty impressed as he admitted to being “a little bit bad”, and was just thrilled with the things that he got, despite that admission. We took down the tree, as I was afraid of spontaneous combustion in the sunny window. We actually just moved it to the deck and put the deck lights around it so that we could enjoy it into the New Year. It was pretty dry, as I got it up early worrying about getting it all done. I actually put the wreaths up the first day I saw them at the store. Next we were off to NH to see friends and have Christmas with Papa Scott’s family. Unfortunately, Tiffany had to work and was not able to come. My Dad still had a credit at our favorite hotel, and it occured to me as we were pulling in that Poppie is still taking care of us from Heaven. It is a little scary traveling with all 4 kids alone. The pool with 4 who don't know how to swim is even scarier. The kids were actually very, very good! We were even treated to desert by some generous folks who noticed their good behavior and sent desert to our family. Once again, my family was blessed by the kindness of strangers. We had dinner with Stephen and Tish and the kids were able to play with Daniel and Maive. Papa Scott went to high school with Stephen and worked with him when we met. We ran into John at Lunch and were able to see Lisa, Charlotte and Laura back at the hotel. The kids played ping pong and pinball with the big kids while Lisa and I were able to catch up some. Actually Lisa and Stephen are Kathleen’s God parents and were instrumental in Papa Scott and I meeting in the first place. Next we went to Grammy's house for our NH Christmas. Last year I only brought Scott but this year we all went. The kids are getting bigger and although it is alot to do alone, it is easier than it would have been last year. We had a nice dinner at the Pizza Barn with Grammy, Scotts brother David, his sister Debbie, and their families. Later that night Kathleen was sick with vomiting. I have no idea why, but am very thankful that what ever it was did not seem to be catchy, or to last very long! I’m also very thankful that Uncle David and Grammy were there to help me. Saturday we opened our presents and enjoyed Christmas dinner. The kids went sledding and enjoyed the snow at “Grammy's Mountains.” Sunday we packed up and headed home. Scott has been complaining of headaches and I had made him an appointment for tomorrow for a checkup. He complained on the way up to NH and continued to complain on and off all week. On the way home he was crying and complaining of a sore throat, so I called the doctor and went to the office directly on the way home. Poor kids, it was New Years Day, and I knew the office was closing. I drove straight through without even changing a diaper. Scott tested positive for strep and we were lucky that the pharmacy was still open to get him started on the antibiotics. (Angels watching over us.) He is feeling much better and we will follow up re: his ongoing complaints of headaches tomorrow. Now I’m hoping the others don’t get it too! Thankfully, Sean and Heather seem to be fine. I want to thank everyone who has taken care of my family throughout the year, and especially those who remembered us this Christmas. Thank you to our friends at The Cape Cod Hospital Maternity Department, Sotherby’s International Real Estate, and The Schwatz Center for making our Christmas Merry and Bright. Thank you to all the wonderful individuals who thought of us and sent gift cards, presents for the kids or Donations to the Hanson Childrens Fund. Thank you to everyone who made contributions to Sean’s Giving Tree through Lunch for Life, helping to fund a cure for Neuroblastoma. Thank you to everyone who continues to pray for me and my family. Please also continue to pray for our friends with Neuroblastoma. Christi has had recent disease progression (again) and will begin a new experimental treatment. Neuroblastoma becomes resistant to treatments and there is no cure for relapse. Also for our friends with other types of cancer. Eileen is in transplant at Sloan. Jacob, our triplet pal, continues on chemo and is miraculously able to be home with his brothers. Matty is recovering from emergent brain surgery for progression of Liver Cancer, and so many more. Also please pray for our friends who have lost loved ones. As I know too well, the holidays and the New Year can be a very difficult time. It also signifies a New Beginning and Hope for a Happy, Healthy New Year! God Bless each of you and your families, and thank you again for checking on ours!

God Bless,
Love, Ellen
XOXO

(I'm watching the news.. please pray also for the miners who perished in W. Virginia and for their families.)

Wednesday, December 21, 2005 0:31 AM CST

Sean had 56 ornaments on his Lunch for life tree! We didn't win the trip, but are so thankful for everyones contributions to Neuroblastoma. It ended up being a very successful fundraiser. Thanks so much to everyone who has given up a lunch for Sean and passed it on. The Giving tree is over but Lunch for life continues throughout the year, so please continue to challenge your friends to give up a "lunch for life".
You can find Sean's Giving Tree at http://www.lunchforlife.org
The founder of lunch for life, Mark Dungan is at Sloan Kettering with his daughter Sydney receiving treatment currently. Please say a prayer for her.

The Hansons~
Hi, Sorry it has taken awhile to update. I caught a stomach bug last week. Must be a strong one, because I rarely get sick. That was Tuesday/Wednesday. Luckily I had a sitter in the morning. In the afternoon I had to cancel plans with Ruth to bring the kids to see a Christmas Light display. Thankfully, she gave up her night off, to feed and bath my kids so I could recover. Well good thing because Thursday night Scott and Heather were sick. Scott missed school and I cancelled the sitters. Saturday I went to Andrew’s funeral service. It was very nicely done and his parents did a wonderful job delivering the eulogy. They also had a slide show memorial that was also very touching. Please say a prayer for Angel Andrew and his family and also for Angel Jack and his family. They both had Neuroblastoma and lived in the same town. Monday Kathleen was sick and Heather again. I was up with them most of the night. Now my neice Christa who babysat is also sick and my sister was up with her most of the night. I’m hoping we are done, but poor Heathers stomach still isn’t right and now she has diarrhea. Meanwhile, while I have been doing laundry all week Santa and his helpers have been hard at work. We received a package that Santa mailed from NY this week. I was shocked at all the wonderful and thoughtful gifts that the Head elf could fit into one box. He even sent jammies for all the kids in the right sizes. How does he know? Thank you Santa for thinking of us. Scott can’t wait to see what is in the box! Next we had an extremely generous donation to the Hanson Childrens Fund from friends of friends at Keeping Pace with Multiple Miracles. Earth Angels and even more thoughtful and generous, as I do not know the folks who made the donation. More elves were hard at work at Sotheby’s International Real Estate where my sister Gael works. Another extremely generous donation was made to the Childrens Fund along with gift cards and more wrapped boxes. Next Gael met Joanne from the Scwartz Center and I am told that she also had a sleigh full of goodies for our family. Thanks to all the other elves who sent Christmas Cards that actually Jingle! I really appreciate everyone remembering my family and especially my children at Christmas. It’s been 2 years since Sean was diagnosed with Cancer and everything changed in an instant. It’s been 1.5 years since Scott passed away, and everything changed yet again, in an instant. Words cannot express my gratitude to so many near and far who have been taking care of us in so many ways seen and unseen. I am so grateful for the compassion that has been shown to us, and for the many thoughts and prayers that have come our way. I continue to be Amazed at the Angels all around us. From the bottom of my heart, Thank you! Please continue to pray for our friends. Eileen is in transplant at Sloan. Matty has relapsed from Hepatoblastoma after a liver transplant, and this weekend developed a sudden paralysis resulting in the discovery of a brain tumor. He is recovering from surgery. The Amazing Jacob, another triplet, is again home with his brothers! Naturally, I’m missing Scott at Christmas and wondering what he would have picked out for the kids. I miss him every day. I’m missing Dad and Stephanie too, yet am grateful for all the happy times I had with all of them. Scott lost his front tooth and once again his “look” has changed. I think of all that Papa Scott is missing and how fast the kids are growing. I sure have a greater appreciation for what my Dad went throught when my Mom died and he went on alone with the 4 of us. Well, I better get to bed, or the Tooth Fairy won’t come! You know how it goes....
Happy Holidays and God Bless,
Love, Ellen
XOXO

December 12, 2005

Please say a prayer for Angels Andrew and Jack. Both boys are from Boston, and both passed away this week from Neuroblastoma. Bless their families..............love, Ellen

December 9, 2005

The Giving Tree

Please support the Childrens Neuroblastoma Cancer Foundation and Lunch for Life with this Fun Fundraising idea. Funds raised go toward finding a CURE for Neuroblastoma by funding Research initiatives.

Here’s how it works: (copied from website)
Each child has his or her own virtual giving tree, and your donations will decorate those trees with ornaments and (ultimately) presents. Every donation has three effects: 1) the tree of your choice receives 1 ornament for every $5 you donate; 2) every donation generates a Giving Code which can get you bonus ornaments when your friends type it in; and 3) each ornament placed on a child’s tree creates one entry for that child into our Disney World giveaway. For example, if I donate $15 to a specific child’s tree, then that places 3 ornaments on his or her tree, creates 3 contest entries for that child, and generates a Giving Code for me to pass along. When a tree is full (500 ornaments), those ornaments transform into a present underneath that tree, and the decoration process begin
s all over again. For each present, the family can elect to receive one of several donated prizes for the child (including board games, stuffed animals, a gift card to Toys R Us, or even the ability to turn multiple presents into a portable DVD player or other bigger gift).

The Giving Code allows you to earn bonus ornaments for a tree by passing on the code to your friends. They will be able to donate their money in honor of any child they wish, but by entering your Giving Code, your chosen tree will receive a bonus ornament for each ornament they donate. For example, when I donated $15 in the earlier example, I received a Giving Code of 123456. I emailed that to several friends with the encouragement to donate to a child’s giving tree, and told them to enter my code so I’ll get bonus donation credit. One of my friends gives $10 toward a different child’s tree, which buys 2 ornaments for that tree, but because he entered my code while making his donation, it places 2 more ornaments for free on the tree I chose. He’ll then get his own code that benefits his chosen tree, which he can pass onto his friends, and so on. This way, for every friend or family member you get to donate, you’re giving that much more in prizes and contest entries to your chosen child. Talk about happy holidays!

Sean has 44 ornaments on his tree! Thanks so much to everyone who has given up a lunch for Sean and passed it on.
You can find Sean's Giving Tree at http://www.lunchforlife.org
The founder of lunch for life, Mark Duggan is at Sloan Kettering with his daughter Sydney receiving treatment currently. Please say a prayer for her.

The Hansons
Scott has recovered from his illness. Poor kid is having an abcessed tooth removed in the morning though. He is looking forward to a visit from the Tooth Fairy! Heather is recovering from an ear infection, and Sean and Kathleen are both on antibiotics for their coughs, colds. They have all had diarrhea, and I'm not sure if its viral from Scott or the Antibiotics. They do seem to be feeling better though. The tree is up and decorated! They are getting excited and must be feeling better as they continue to get into mischief. Sean and Heather were "trimming the tree" with a sharp scissors tonight. Literally, cutting off all the branches. They have reconfigured the decorations numerous times, and broken quite a few for the first day. I am working at explaining Naughty vs. Nice, but so far they seem to think that Naughty is more fun and haven't fully digested the consequences come Christmas morning. Scott is pretty funny as he gets so excited trying to warn them. Poppie always told us that if you are good you get an extra toy in your pile and if your naughty, Santa will take one off your pile. It's very cute to hear all the kids discussing who has just lost a gift or why they have just earned one. Tiffany is staying where she is for a few more weeks, which allows me a space to wrap and hide (lock up!) the gifts. I'm missing Scott of course and thinking of all the good times that we had. We really did alot in a short time. I only knew him 7 years! I'm so thankful for the time that we had. I also think of all the Angel parents at this time of year, and all our friends undergoing chemo, or in the hospital for transplant. Please continue to pray for our friends, and please check out lunch for life. If a cure is not to be had in the near future, the research may at least help to develop "kinder" treatments for the kids. The treatments for Neuroblastoma are not easy to undergo. Many of the kids are High Risk and the treatments are Extremely Harsh! We are so thankful for all the thoughts, cards, and especially prayers. I'm still living day by day, and need all the prayers I can get. Happy Holidays!
Blessings! Love, Ellen
XOXO

New pictures of the kids on the photo page and please sign the guestbook so that we know that you were here!

Wednesday, November 30, 2005 11:09 PM CST

We had a nice Thanksgiving. I cooked a Turkey dinner and Tiffany came over. We ate and lit the fire and just had a quiet day. Later the kids and I had Birthday cake. Last year Scott told me that my Birthday was boring, so I made sure to get balloons and an ice cream cake this year! On Friday, my sister Katie and her family were here from NH, and my sister Gael and her kids too. We had another birthday cake and presents. Scott was satisfied that this was a much better party than last year, when he and I stuck a candle in a piece of cheesecake. Of course, I was missing Papa Scott, but I miss him every day.

Yesterday, I went shopping at Walmart. It was a pretty emotional trip! You may have heard about the trampling at Walmart recently. Well, this was just about the opposite extreme! First, I saw a carpenter friend of Scott's that I hadn't seen in a long time. He caught me up on the gossip of who is working on what job and what is going on around town etc. It's strange to be "out of the loop". Scott used to call me everyday when he got in the car after work and tell me of his day. He went to the monthly meetings with this guy and a few others and always came home with stories for me. Strange too, that I was peripheral before. I knew the names and stories but not the faces, except maybe in passing. Since Scott passed away, I have gotten to know some of the guys, and last summer some even came to help work on the house. It was so weird to put the faces to the names and stories, without him here. It's sad to realize that there will be no more stories from Scott. Next I was hurrying to get back for the sitter. I got chatting with the nice lady in front of me in line. In no time we covered kids, life, family, health, treatment of foreign workers, and how we have both been touched by the kindness of other people. Well, the next thing I know, she whips out the charge card and pays for my whole order! Hows that for a "Random act of kindness", at this special time of year! Once again, I am in awe of the multitude of ways that people have reached out to us. As well, as the kindness of complete strangers...One day on the train to Sloan Kettering in NY, a lady reached in her bag and gave Sean her rosary beads that had been blessed. Another day a man came to the door and gave the babysitter a large sum of money, but refused to leave his name. A mom who lost her son to Neuroblastoma the same day that Scott passed mailed me a check. (We have since met and become friends.) The list goes on and on. "Yes Virginia, there is a Santa Claus". Amongst the hustle and bustle out there, Angels are still amongst us.
So pay it forward this holiday season, buy the guy behind you in Dunkin Donuts a coffee.....for no reason, except to spread a bit of joy.

My poor Scott is sick with diarrhea and vomiting. He missed school today and will probably not go tomorrow either. Kathleen, Sean and Heather seem to have a milder form of the bug with diarrhea, low grade fever and general fussiness. I've changed the sheets on my bed at least 4 times in 12 hours. Everyone seems to have a cough too. I think of all our friend who are having chemo and have to deal with the side effects day after day.
Please continue to pray for our friends. Eileen will be undergoing Transplant in NY starting monday. (Another Angel, who gave her Teddy Bear to Sean in clinic one day.) Erik who relapsed after 13 years with NB and is in transplant now. Our triplet pal Jacob who is back in the hospital after a very short reprieve at home with his brothers. Dylan who is in NY for treatment and awaiting a visit from his dad and brother who are home in Australia. Hazen who's disease has recently progressed. Jonathan who is now an Angel after a long battle, and so many others.

Thank you for all your prayers and thoughts and "Random acts of Kindness".
Thanks for checking on us and for all the messages, thoughts and prayers in the guestbook.

God Bless,
Love, Ellen
XOXO

Check out http://www.lunchforlife.org for a fun fund raising idea that benefits kids with Neuroblastoma.

Wednesday, November 23, 2005 2:56 AM CST

November 23, 2005
Sean's Urine test came back within Normal Limits! Hooray! Tomorrow is my Birthday! That's the best Birthday Gift I could receive! We are now over 2 years from diagnosis, with basically no treatment except for the 11 1/2 hour incomplete resection that he had 10/03. I am so Thankful that we found the Doctors at Sloan Kettering. The "usual" treatment for Intermediate risk Neuroblastoma stage 3 is 4-8 rounds of Chemo. Dr. Kushner said that Sean probably would have had 8 rounds and still needed the life threatening surgery anyway. By going to NY and "coloring outside the lines", we avoided the chemo (except for the 3 days he received initially in error) and therefore all the short and long term side effects, which are Many! I cannot express how Thankful I am at Thanksgiving to all the people who have helped my family so that we can get to NY when Sean needs to go. The first year I was there Every month except June and December. This year we have been 5 Times between follow-ups and the second surgery that he had. Thank you, Thank you, Thank you!

Thanks also to my sister Gael, Ruth, Jenn, Libby, and Joyce for taking me out to "Birthday Dinner" tonight. Each one of these girls has stuck by me through thick and thin! It is so nice for me to just be together with everyone at the same time. I had a great time! I'm thankful to all the folks who check on us and remember us at this special time of year.
God Bless, Love, Ellen XO

Monday, November 21, 2005 0:28 AM CST

Hi, We got home safely after a long but (fun) day Wednesday. We slept in a bit and then went to the Central Park Zoo. They had a great time, we had the place to ourselves! (Not like when I took Sean on the hottest, most crowded day before. We even stayed in the very stinky penquin place because it was cool. This time Scott said, "It stinks in here, lets get out of here!", and so we did. We saw a snake that the boys were sure was going to eat through the door, and they were very cute rushing for help. The nice man assured them that snakes don't even like to eat wood, and that they were safe. It was quite an adventure! Next we walked up by the boat house and saw the statues of Hans Christian Anderson reading the Ugly Duckling and Alice in Wonderland, which happened to be on TV tonight, and made for some more excitement, as the boys showed the photos to the girls. We returned after a couple of hot dogs to Ronald. By the time I was packed and ready to get the car it was precisely 5pm. UGH. So I pulled out, asked some advice and went back to Ronald to eat and wait till 7pm when some of the traffic had gone. By now, it was pouring rain...all the way home......don't for get dark........yuck. I can hear my Dad saying, "go in the daylight dear, its so much easier and safer." He is right! I got home around 12:30am, I think.
We got everything on Scott's "list" done, that he needed to do in NY this trip. It's hard when your in clinic for the day for one or two appts, but I just feel lucky that I get to see these world renowned doctors and that they are checking on my son. We got out at 5pm. one day and 330pm. the next. We still had fun and got alot done.

Sean's renal scan was unchanged. Basically, my understanding is that this is good. If it had deteriorated, that would indicate increased hydronephrosis. He will have a kidney U/S in FEB. Also the neurologist checked him out and thought he was probably fine, but will now follow with us and see him again in FEB. Meanwhile, Dr. L says he no longer needs to be on the bactrim for prophylaxis for urinary reflux-Hooray! His next MRI which is the main thing we follow is due in FEB and will be done in NY. He did also have a urine test this time, which is pending. It takes a week at least.

Mostly we have been catching up on the house. Raking, Mowing, trips to the dump. Winterizing. Trying to get a room ready for Tiff, laundry, etc. Tonight I even had to call a friend to turn the gas heat pilot light on. Ugh! Alot of that is boy stuff! (Yes, he even did laundry.) I didn't blow us all up, so that's good news~

It's Thanksgiving time. I cannot possible begin to thank all the folks who have helped us this last 2 years since Sean was diagnosed with Cancer. The list is endless. Someone still brings pizza the 3rd thursday of the month. It always arrives at the perfect time on a hectic day. Others still send Stop and Shop cards. A friend mails me coffee from her company. People we know and people we don't know have just given so much of themselves to help us, and in all kinds of creative ways. I thank all of you for being here for me and for my family. I am so thankful that the children are happy (for the most part), and healthy, (despite a little aggressive cancer). I'm so lucky to able to be with them and available to them at this time. I check each one many times a night and so appreciate their breathing, their presence, their health and their comfort. Everyday together is a gift!

Scott and I are starting a Grief Group tomorrow night. I'm hoping I can learn some tools to make things go easier for him, and for the other kids too. I'll let you know how it goes.

Thanks to Keeping Pace with Multiple Miracles, we today attended a holiday party. Heather loved Santa and didn't want to get off his lap. Sean sat awhile and got his order in. Scott was all business, so he stood. And Kathleen, screeched and had to be held, I don't think she asked for anything! It was fun to see their reactions at this age.
We had a very nice day! Thanks Pam and Friends at KPMM.



Thanks for checking in on us.
Please sign the guestbook so we know that you were here! God Bless, and Happy Thanksgiving!
~Love, Ellen
XOXO

November 23, 2005
Sean's Urine test came back within Normal Limits! Hooray! Tomorrow is my Birthday! That's the best Birthday Gift I could receive! We are now over 2 years from diagnosis, with basically no treatment except for the 11 1/2 hour incomplete resection that he had 10/03. I am so Thankful that we found the Doctors at Sloan Kettering. The "usual" treatment for Intermediate risk Neuroblastoma stage 3 is 4-8 rounds of Chemo. Dr. Kushner said that Sean probably would have had 8 rounds and still needed the life threatening surgery anyway. By going to NY and "coloring outside the lines", we avoided the chemo (except for the 3 days he received initially in error) and therefore all the short and long term side effects, which are Many! I cannot express how Thankful I am at Thanksgiving to all the people who have helped my family so that we can get to NY when Sean needs to go. The first year I was there Every month except June and December. This year we have been 5 Times between follow-ups and the second surgery that he had. Thank you, Thank you, Thank you!

Thanks also to my sister Gael, Ruth, Jenn, Libby, and Joyce for taking me out to "Birthday Dinner" tonight. Each one of these girls has stuck by me through thick and thin! It is so nice for me to just be together with everyone at the same time. I had a great time! I'm thankful to all the folks who check on us and remember us at this special time of year.
God Bless, Love, Ellen XO



*Raise Awareness of Childhood Cancer**

Visit Candlelighters.org to order your gold ribbon in Honor or in Memory of a child with cancer for the National Christmas Tree. The tree lighting is December 10th, 2005. More than 2,000 individuals visit this historic D.C. location each day. As a result, an estimated 60,000 people will view this tribute to America's cancer children!
After the holiday the ribbon can be mailed to you for your own tree next year! Thanks for helping kids with cancer~like mine!

Tuesday, November 15, 2005 2:01 AM CST

Hello from New York! We had a pretty uneventful ride for a change. The boys were very good and excited to get here. We got settled in and walked around the neighborhood for a bit and then returned to Ronald for Pizza and a musical show. We also got to spend some time in the playroom and see some friends that we know from past visits here. Today we got to sleep in as we didn't have to be at clinic until 10am. Sean got to see Carol and Courtney and blow bubbles, while Scott raided the toy chest and got lots of goodies for everyone! A very thoughtful nurse suggested that Sean have his IV started AFTER he was asleep! What a great idea! He was very cooperative about breathing in the medication and trying to blow up the purple balloon, which he noted was "Heathers color". He also had the urine collection bag applied.
He was a little grouchy when he woke up with "Tubies", and was protective of them. He had a pretty easy time coming out of the anesthesia, other times he has been really fussy for a few hours. He ate and watched movies while waiting the 4 hours for the urine collection and was very good about staying in his stroller. Scott stayed with us in the morning but eventually decided that the playroom was more fun. He ended up having a nice day playing with all the toys and doing arts and crafts. We didn't get out until after 5pm. On the walk back we got to see an excavator tearing up the road and a man cutting large pipes with a saw that made lots of sparks and noise! Scott loved all the "action" and wants to go back to the "job site" tomorrow. Next we decided to go to Time Square as it may rain tomorrow. Thankfully, its very mild and comfortable to be outside! We played at Toys-R-Us and they each got a small toy! We walked over to Rockefeller Center to see the tree and the skaters. Well it's pretty hard to see under all the scaffolding, but we saw it! We got something to eat and watched the skating for awhile. We got a cab back to Ronald easily and they both went right to sleep! Heather was very sad when we were leaving and put on her shoes and even went and got her pillow. It's so hard to leave the girls like that. She and Kathleen both seem to be doing fine now though. Thanks so much for checking in on us, and thanks to all the sitters for taking care of things at home so that I can focus on things here.
God Bless,
Love, Ellen
XO

**Help Raise Awareness of Childhood Cancer**

Visit Candlelighters.org to order your gold ribbon in Honor or in Memory of a child with cancer for the National Christmas Tree. The tree lighting is December 10th, 2005. More than 2,000 individuals visit this historic D.C. location each day. As a result, an estimated 60,000 people will view this tribute to America's cancer children!
After the holiday the ribbon can be mailed to you for your own tree next year! Thanks for helping kids with cancer~like mine!

Thursday, November 10, 2005 11:18 PM CST

Hello Friends, the kids had a great time with Halloween. We went to see Nana (Stephanie's Mom), to Wimpy's for a walk through, and then trick or treating on our street. Now that they are walking and not going in the wagon, it takes forever to get house to house. They were very cute, holding hands and singing Twinkle, Twinkle Little Star, while walking up the road. Scott was patient and did a great job as big brother leading the way. Thanks Ruth for helping me get it all done. We went home and ate and had our traditional scallops/bacon, and Auntie Gael came over.

Scott, Sean and I are off to NY on Sunday for Sean's Renal Scan, a Neuro eval, and Oncology appt. Sean has been falling alot and had a couple of episodes of foot pain. I think he is just a clumsy boy, but want to have him checked out anyway. The original surgery was near important nerves and we know we left tumor in his spine! It's always hard to drive off leaving the girls at home, but I can't handle them all alone in NY. Scott is excited to make his usual stop at Toys-R-Us in Time Square! I hope the weather is good, as our trips always involve alot of walking. Sean is getting old enough to anticipate the IV and the boo boo and tubie. Luckily, he also remembers riding on the IV pole with Scott. He also looks forward to seeing Dr. Mike and knows that Dr. Mike made the boo boo in his tummy better. Of course I remind him about the toy chest and blowing bubbles with Carol!

Scott is really missing his Papa. He cried tonight and told me he just wants to lay with Papa and have his Papa give him a big hug. He says he misses his warmth. I do too....He is sleeping with Scott's T-shirt under his pillow. He is also still having some trouble separating from Mommy, and going to bed. He follows me around the house waiting for me to go to bed, and then he is tired in the morning. He talks about work and construction all the time. We have been stopping by a job site on our way to karate and watching from the car. The guys are great and always wave when they spot a little boy watching them. Tonight we got to watch a steel worker with his torch! It really is pretty exciting to sit and watch construction through the eyes of a 6 year old. I just wish it could be his Dad here teaching him. He was a fireman at school for Halloween and wore Papa Scott's N. Conway firehat. Then he was a Carpenter for trick or treating. This time he wore his own Linbeck hardhat, which the guys gave him, which is just like Papa's. I signed him up for a Big Brother. He made a special request for a carpenter! Unfortunately, there are no Big Brothers available.

Tiffany is doing well at College and is working at Borders Bookstore. She seems to like both work and school. She is planning on moving back in, so we have been busy trying to re-arrange so she can have her bedroom back. I'm a packrat, so there is lots to re-arrange. Kathleen and Heather will move back to the room over the garage. Kathleen, like Scott is happy playing alone. Sean and Heather however, are very mischievious and always together getting into trouble. It's very funny when I can sneak up and listen to their little conversations and hear what they are planning to do next!

Everyone had been healthy lately, thank goodness. The weather has been pretty good, so we have been able to get out and go walking/skipping/running/hopping/jumping and marching at the beach. Even on cool or windy days we try to bundle up and go.

Please keep Sean and our friends in your prayers. Jacob (our triplet pal) is in the ICU. http://www.caringbridge.org/fl/jacob Dylan (from Australia) is on a new chemo regimen, he turned 7yrs. today. http://www.caringbridge.org/me/dylanhartung

Continued thanks to everyone taking care of us and being there for me. I am so lucky to be able to be here for the kids right now, especially Scott.

Happy 44th Anniversary to Gene and Gail!
Happy Birthday to Auntie Gemma, Cousin Shoshanna and Grammy!

God Bless,
Love, Ellen
XOXO

Sunday, October 30, 2005 12:24 AM CST

HAPPY HALLOWEEN!

We are busy getting ready for the big Holiday! This morning we carved 2 Jack-O-Lanterns! The kids had a great time. We also cooked our pumpkin seeds. Next we have to get our costumes all ready. We are a little late decorating, but that makes it fun for the kids I guess. They are getting all excited.

We had a couple of nice visits with Uncle Brian and his family from London, and he and Uncle Jared took me out for a very nice dinner. It was fun to go out with the boys!

Everyone seems to be healthy right now.

We had snow last night, but today is beautiful. We may go to the beach this afternoon and take advantage of the nice weather. We also should carry wood, and start putting all the kids toys in the shed. Always lots to do!

Of course I am missing Scott as another Holiday comes and goes. We always had a festive Halloween. Scott would make the scallops/bacon, chips/dip, etc. We would take the kids out together early and then go home and snack while we looked at all the other kids costumes and handed out candy. Nice memories anyway!

God Bless and please continue to pray for Sean and all our friends and family.

Thanks so much for signing the guestbook and leaving words of support or just stopping by to say hello! I appreciate everyone checking in on us!

Love, Ellen

xoxo

*Don't forget to check the photo area for new photo's of the kids!

Tuesday, October 18, 2005 8:13 PM CDT

Hello,
We finally got to the birthday, Yahoo! In my mind I also celebrate that Sean is now 2 years from the “big” surgery, when “most” of the tumor was removed. That in itself is cause for celebration! We had a nice party, although it was a little chilly, we were able to be outside on the beautiful deck that Papa built for most of it. I am thrilled that Sean is here and healthy, but cannot also think about Papa Scott. He always did most of the work for parties and was actually very good at it. He would have arranged the tables, made the cocktail sauce for the shrimp as well as the scallops/bacon in bourbon sauce and a few other fancy hordeurves. Since we only have to have the one party, its usually a good one. He was better at the cooking than I am. This year Uncle Brian was here and Aunt Julie and our London cousins. Scott had a great time with his friends and the triplets had fun eating chips and dip. Each had their own birthday cake. Sean would still be eating, I had to take it away! I am feeling so blessed that he is here and healthy and eating everything in site! Thank Goodness for Carol and Ruth for helping me get ready and for Aunt Julie for cleaning up. Uncle Brian manned the “big” kids, while the little ones ate and played. Some of our wonderful neighbors were able to join us too. Unfortunately, some of our friends also could not make it, as I have changed the plan 10 times at least with the kids being sick and Uncle Brian's schedule as well as my sister Gael. Poor Tiffany even had to work. (Tiff, we will still try to have a special night!)

I had a nice weekend in Conn. and was able to finally meet Jay and Liz Scott and some of their family and friends. They truly are Amazing and its easy to see where Alex got her spirit and strength!


Next week is the Angels Hope "Spread the Light Auction." It will be held on Friday Oct. 21st. The Silent Auction begins at 5:30pm. with dinner at 7pm. and a Live Auction at 7:30pm. It is at the Cape Codder Resort in Hyannis. Visit Angelshope.org for more information. Angels Hope is a local organization located in Harwich, Ma., that supports families of children with Cancer. They have been a great support for our family since Sean was diagnosed in September of 2003. Joyce, Tony, Ruth and I went last year and really enjoyed the evening. We look forward to going again this year. Please help to "Spread the Light" by joining us next friday.

Thanks for continuing to check on us and to sign our guest book with special messages. I really appreciate it. Thanks to all our friends who continue to support us and show concern as we learn to move forward one day at a time, sometimes one moment. Please continue to pray for our friends. Jacob, our triplet pal is back in the hospital. And Dylan is still in NY starting a new experimental chemo. Another friend Debbie lost her dad suddenly, His wife Barbara is also a friend.
Thank you for keeping Sean and our family in your prayers as well. The kindness we have received is truly inspirational.

God Bless, Love, Ellen

Friday, October 14, 2005 1:59 AM CDT

Hello Friends, The kids are finally feeling better, mostly. I actually took them to the Dr. on Monday. I kept Scott home again on Tuesday but he seems OK now. Heather complained of nausea tonight, but did not get sick. She and Sean c/o nausea every night now so they can get back out of bed. She did wake up complaining later though and is snuggled in with Mommy. I still have not had their "Birthday" celebration and actually had to freeze their cakes. I'm hoping for next Wednesday. Scott starts skating tomorrow and I am attending an Alex's Lemonade Function this weekend.

Volvo is having an Alex's Lemonade Stand fundraiser this week. If you test drive a Volvo, they will give $20.00 to the Fund. Scott and I went on Tuesday when he didn't go to school. He was disappointed that they did not actually have a stand set up and that there were no yellow balloons. We did get our beautiful Alex's Lemonade Butterfly pins though. Please take time to visit your local Volvo dealer and ask to take a test drive for Alex's Lemonade~ It's an easy way to make a significant contribution to Childhood Cancer!

We had a special visitor on Saturday. Scott lost his tooth while eating his pedialyte pop. Well, we could not find the tooth. He wrote a nice letter explaining it all to the Tooth Fairy and left it under his pillow. We both forgot to check until later in the day, and he was thrilled to find that the Tooth Fairy had actually come and left him some special dollar coins under his pillow. We think she may have visited Sean too, as we noticed that the tooth that he almost knocked out a few weeks ago has almost moved back into its place.

Next week is the Angels Hope "Spread the Light Auction." It will be held on Friday Oct. 21st. The Silent Auction begins at 5:30pm. with dinner at 7pm. and a Live Auction at 7:30pm. It is at the Cape Codder Resort in Hyannis. Visit Angelshope.org for more information. Angels Hope is a local organization located in Harwich, Ma., that supports families of children with Cancer. They have been a great support for our family since Sean was diagnosed in September of 2003. Joyce, Tony, Ruth and I went last year and really enjoyed the evening. We look forward to going again this year. Please help to "Spread the Light" by joining us next friday.

Thank you to everyone who continues to check on us and pray for us. I am so grateful to so many who are taking care of our family in so many ways. I am so thankful that I am able to be home to take care of the kids when they are sick. Also to my friends/sitters who have stepped in when I needed help the last week and a half with all of them sick. Please continue to pray for our friends. We look forward to seeing Uncle Brian and family next week. They will be home visiting from London!

God Bless!
Please sign our guestbook, so we know you were here!
Love, Ellen
XOXO

Friday, October 7, 2005 2:51 AM CDT

Last week I was missing Scott. Historically we would be going to NH for the long weekend and the kids birthday. I was afraid to do it alone, on a long weekend for the first time with all the kids. Well, I decided on Sunday, to just GO on Monday, and so I did. Kathleen was sick in the car, but we cleaned her up and off we went. We got to see Uncle David's new house and visit with Sue, and I was glad to finally meet her parents. Next we checked into the hotel where my Dad used to do business, and therefore we could stay. I took the kids to the pool and they were very good. They were cute and funny as it was the first time for the triplets. Next we ventured off to Jackson, NH to see Stephen. He didn't know we were coming, but joined right in and we took all the kids for pizza at Shannon Door. Daniel and Scott kept busy watching them build their “Pumpkin People”. All over town each year there are pumpkin people doing various activities. Basically it is a scarecrow with a pumpkin head. Each year it seems the displays become more elaborate. We even saw Snow White and the Seven Dwarfs. The Shannon Door Pumpkin people were Irish Step Dancing. There was even one that had fallen in the rocks and had pumpkin rescue people on the scene. The kids loved looking out for the next pumpkin people we could find. They were also very good in the restaurant. I got to see my friend Nora and meet her daughter Emily. Later that night back in the room, Heather was up coughing, and eventually got sick. We played musical beds all night and Scott was surprised to find Kathleen instead of Heather next to him in the morning.

Tuesday Morning we got a late start, but met Grammy and went to a pumpkin patch. It is the same one that Scott used to take me to. They have piles of pumpkins and squash in all different shapes and sizes. The kids each got to pick something out and had a great time running from pile to pile. Next we ventured down the road to Sherman Farm. We asked to see some animals and we were lucky enough to have a long visit with the cows and the pigs. It was quite an adventure for me to watch them as they have never seen a cow or a pig before and they were very funny. We spent lots of time just playing at the farm. They got to meet Bo the Dog and play on Hay bails and sit on the giant pumpkins. We went back to the hotel to meet Uncle Dick for a late lunch. The kids had ice cream and Scott had a hot dog. Well, Sean choked on a french fry and vomited all over the table. (Later, I decided they all have a bug because 4 or 4 have been sick.) Well, we cleaned up a bit and headed off to Chetah to see Lisa and John. They have a new farmhouse and some animals and I have not seen it yet. (Stephen is Kathleen's Godfather, and Lisa is her Godmother.) It was nice to see everyone and my kids had fun with Charlotte and Laura. Scott found some nice wood in the barn to take home to build with, and he tended the outdoor fireplace with lisa. He was also excited to see some John Deere equipment in the barn and John told him he can drive the tractor next time. We also may get to see the new piglets the girls are getting. We took the long road home and stopped at McDonalds. Back at headquarters, I got them all tucked in. Heather started coughing again and got sick. I tucked her back in, Just as Sean vomited all over the bed (and his brother), while still sleeping. Well, we called housekeeping and got clean sheets and everyone settled back in. In the morning we went back to the pool and hot tub for some more fun. This is a little tricky as none of them can swim. They were again very good and have learned the “one baby at a time” rule we established this summer. Next we went back to Jackson, so Scott could go to the “job site”. Papa Scott used to work for Stephen's Construction Company there.
Stephen let him drive the excavator and the front-end loader and he got to see the fork lift in action. I saw some of Scotts old friends and we all enjoyed the sound of power tools! Stephen gave Scott a box of wood to bring home to work with. He is building an elaborate structure now for Sean’s birthday. I’m not sure what it is yet but he said he is ready to “wire” it. From there we stopped at Jackson Falls. This is a regular stop. Winter or Summer and we always take pictures by the same birch tree. I was sorry to see that a big bench has been installed on top of the rock near my tree. I’d rather sit on a rock any day! We got tons of good pictures despite almost loosing a shoe to the waterfall and dropping the video camera in a puddle while trying to manage 4 kids at a waterfall and river with slippery rocks. Next it was off to Grammy's to say goodbye and play awhile. Of course, we had to fill the car the remaining way with wood for Scott to build with. He got some nice triangle pieces that he plans to use for rooftops. Just as I entered the tunnel in Boston, Sean threw up again. All over himself and his seat. I finally pulled over in Braintree where he got sick again, and then cleaned up...again. Meanwhile Ruth called and I had her get me some pacifiers as I wasn’t planning on feeding anyone much more that clear liquids! This am Scott complained that he didn't feel well and didn't want to go to school. I thought he was faking and wanted to stay home. Well, I sent him up to get ready and he got sick on his carpet. He stayed home but did come with me to get a few presents for the kids. We had a special lunch for 2 at Wimpys where he had plain pasta. Well, we lost that too, in the driveway at home. In the meantime both Sean and Scott now have diarrhea. We had a quiet night. The kids are pretty much lethargic between the trip and being sick so we all laid in Mommy’s bed and watched TV all snuggled up.

It was all a wonderful adventure. I’m so glad I went and got to see my friends, and not miss out on the fall things that I know I would have done with Scott. I miss him everywhere I look. He used to tell me stories all along the way about this place or that one. Or someone he knew once.
I miss him at Grammy's and in N. Conway and in Jackson. I miss him when the kids are sick and when I’m in the car. (He always drove.) I miss him all the time. I’m glad I went and that our friends can see the kids and I can see theirs. Now I tell stories along the way about Papa and Mommy and the things we used to do. And we drive by Grampy Bills Mountain where Papa learned to ski, and by the mountain where Papa used to Make Snow, and past his favorite chinese restaurant, and the firehouse where he used to volunteer. ~Keeping his memory alive and creating new ones along the way. I’m just so sad that he isn’t here to tell his own stories to his kids. I hope he was there with us in spirit.

So far, no has been sick tonight and so I hope we are over that. That part doesn't bother me at all. I’m just very thankful that we aren’t doing chemo every day.

Tomorrow (10/08) the kids will be 3 years old. Sean is 2 years from diagnosis with Neuroblastoma and on the 10th, exactly 2 years from his extensive surgery. I am thankful everyday that he is here with us. Running and playing and getting into mischief! I’m thankful for all my kids and trust that Papa is watching over us.

Thanks to everyone who stopped by the Alex's Lemonade Stand and especially to Ruth, Libby and Janelle who helped me pull it off.

Please say a prayer for our friend Madison who gained her wings on Oct. 4th, and for her family. She fought a long and difficult battle. http://www2.caringbridge.org/la/madison/guestbook.html
Please continue to pray for Sean and for our family

Thanks for being there when I need you.
Love, Ellen
Happy Fall
God Bless


UPDATE: 10/08/05
The birthday has been postponed.
Sean and Scott were violently ill most of the day. We had rice and pedialyte for most of our meals. I just got everyone tucked in, after hundreds of loads of laundry, and then Heather started throwing too. I've had sick kids since last Monday. Thanks for the movies Ruth, the balloons were a huge success Andrea, and thanks for doing my "emergency" shopping Jenn! Hoping tomorrow is a better day! Love, Ellen

Thursday, September 29, 2005 11:21 PM CDT

Hi Friends,
We are gearing up for another Alex's Lemonade Stand! It's the 8th local Lemonade Stand. Thanks for all your continued support. The funds raised all go to Pediatric Cancer Research. Scott has become a regular "Lemonade Host" and really has a good time helping out. Donations can be made to Alex's Lemonade Stand and mailed to us at Ellen Hanson, 80 Liberty Lane, Marstons Mills, Ma. 02648, or you can send donations directly or get information on holding your own stand at Alexslemonade.com This time we will be on Main St. in Osterville from 10am. to 3pm. Thanks to Tammi for babysitting so that Scott and I can do our part for kids with cancer~like mine!

We had a busy week. Grammy was here to visit. We took advantage of the great weather to go to the beach a number of times. My sister Katie and her girls were here for the weekend and we had a really great time with all the kids.

I miss Scott terribly. I realize how different we were, and I think of all the things he would have been able to teach the kids. He was good at so many things. Besides building which includes electric, plumbing, tiling etc., etc. He was also the one who know which berries could be eaten when hiking, all about gardening, plants and fishing. He could repair anything including the cars, lawnmower, snowblower, generator. And he was good at math. I'm not. We often worked as a team. We cooked or cleaned together, or got the kids ready for a outing. One got the kids, and the other the "stuff". He always attended all of Tiffany's school functions. It's hard for me to not only go alone, but then have nobody to talk to about whatever went on. I just miss him.

The kids are all great and such a blessing. Tiffany is now the supervisor at the cafe at Borders Bookstore. She is also taking 4 classes at Cape Cod Community College and seems to be enjoying those. Scott is taking Karate and playing Soccer (when I can get him there.) He is also a great help to me and a great big brother. The little ones are growing like crazy and are all special. They are very funny to watch and to listen to these days. Sean seems to have Papa Scotts sense of humor of mischievous streak. Heather follows right along. Kathleen is a bit more reserved and is happy to suck her thumb and watch TV or snuggle with Mommy. They are very good about sticking to the family motto, "Safety First". This includes not touching Papa's power tools, and holding hands in parking lots, etc. It's really funny when they scold each other, shout instructions, or when I just tune in and listen. I end up with all 4 of them in my bed by morning. I even have a safety rail on one side so I don't lose anyone.

Please continue to pray for our family and for all our many friends with Cancer, especially the children. Our triplet friend Jacob is miraculously out of the hospital after 58 days. They were told a month ago that nothing more could be done. Jacob has continued to battle a rare form of cancer and is doing amazingly well. You can check on him at http://www2.caringbridge.org/fl/jacob.
Please pray for our friend Madison too. she is from La and has been as Sloan for a very long time with her parents and big brother Taylor. http://www2.caringbridge.org/la/madison/guestbook.html


Thanks to everyone who continues to check on us and support us in so many ways. I still need all the help I can get, and am very much on one day at a time. Sometimes one moment. Please sign the guestbook, so that I know you were here. Papa Scott checked the counter many times a day, so I have developed that habit too!

God Bless,
Happy Fall!
Love, Ellen

And please remember to stop by for a nice cool cup of lemonade on Saturday!

Thursday, September 15, 2005 8:27 AM CDT

HAPPY HEAVENLY BIRTHDAY PAPA!

We Love you and we all miss you so much. We hope you are having a special celebration in Heaven with all our Angel Friends and Relatives!
God Bless You Papa!
Love, Ellen, Tiffany, Scott A., Kathleen, Sean and Heather
XO XO XO XO XO XO


*See Photos added of Papa and Sean

Sunday, September 11, 2005 7:50 AM CDT

"We are pressed on every side by troubles, but we are not crushed and broken. We are perplexed, but we don't give up and quit. We are hunted down, but God never abandons us. We get knocked down, but we get up again and keep going."
2 Corinthians 4:8-9

This passage was explained by saying that "With confidence in God's presence, you must develop the ability to endure setbacks without surrendering."



9/11-Remembering the Victims and Families of 9/11 Today. God Bless!
Love, Ellen



Wednesday, September 7, 2005

Hi Friends,
We had a nice weekend! Saturday we went to the beach at the yacht club. Sunday, I took down the cribs and Kathleen and Heather now have Big Girl beds. Sean has already been sleeping in his Big Boy bed in Scotts room.
An electrician came and did a lot of “odd jobs” that needed to be done here. Any progress is good. There is so much to do. I took the kids out for a ride and ended up at Jenns house where we were invited to dinner. The kids played in the yard and had a wonderful time while the Moms and Dad shared a few Corona’s. They ran and ran and got nice and tired. I put their jammies on at Jenns and everyone had a big sleep when we got home. Monday we went to the beach at the Ocean with Ruth and Cheryl. I haven’t attempted the ocean without help yet. We happened to end up sitting near some triplet friends which was pretty cool. It’s fun to see how the “big kids” interact with each other. We had beautiful weather and all the kids took turns swimming with Ruth and Cheryl while I manned the beach. Later, they cooked and chopped and grilled dinner while I gave the kids tubs and got us all in our jammies. We all ate out on the deck. It was really nice. Thanks for all your work and help with the kids, and for creating some nice memories for the kids. (Poor Ruth and Cheryl didn't even get to rinse off!)
Today was Scotts “official” first day of school. He had a great day and gave me a big hug when he spotted all of us there to meet him at school. His favorite part was seeing friends that he knew on the playground or at lunch. It’s an adjustment figuring out all the logistics of school, transportation, baby-sitting, etc. I’m sure we will have it all figured out in no time. Scott requested Scallops in Bacon (Papa’s favorite) for his first day of school. I bought them, but didn't get them put together. Scott gave everyone orders to go right to bed so Mommy could make his treat! Well, they didn't listen, and everyone went to bed late and fussy, including me. It will be my mission in the morning to get that done!

********
Sunday is Marstons Mills Village Days. Our neighbors and friends Janelle and Margie are once again hosting an Alex's Lemonade Stand. Please come out for a nice cup of Lemonade and help fund pediatric cancer research. The Stand will be on Main St. Marstons Mills, across from the Library. (FYI, Afleet Alex of triple crown race horse fame (www.afleetalex.com), is recovering nicely from his broken ankle.)
********

Please continue to pray for our friends. Triplet friend Jacob seems to be responding well to all your prayers. He has a very aggressive form of lung cancer. http://www.caringbridge.org/fl/jacob Dylan is from Australia but living at the Ronald McDonald house in NY, he is currently in the hospital. http://www2.caringbridge.org/me/dylanhartung/ Please pray for Jamie/Beebo from the UK who has just gained his angel wings, and for his family. His link is at the bottom of this page and his Mom has linked his page to many other NB warriors and angels.

Sean's MRI scan was unchanged, his Renal scan had technical difficulties and will be repeated in November in NY, and his urine results and LDH are still pending.

Thanks for all the notes in the guestbook and for checking on our family. Continued thanks to everyone who continues to remember us and care for us in so many ways. So often when I see the kids running and playing and smiling, I realize how grateful I am to everyone who is there for me, for My Scott in Heaven, and for our babies.

Please pray for all the many families affected by Hurricane Katrina. So many have lost everything, including family members.......

God Bless, Love, Ellen
XOXO

Sunday, August 28, 2005 0:22 AM CDT

September 5th-
Happy Birthday Auntie Gael and Uncle Peter!
Happy Labor Day!


Our adventures in NY continued....
August 24, 2005-As we left Ronald McDonald Scott spotted a firefighter stuffed animal that he wanted at their sidewalk sale. He told me that it was for me, for my anniversary, to remind me of Papa. Papa was a volunteer firefighter. Naturally, I bought it. Later, I bought myself some flowers at the corner store. Scott decided that I should have the flowers and he should have the bear. I agreed. We started the day at Scotts favorite place, Toys-R-Us in Time Square. Next we went to Mars 2012 to have some lunch with Martians. Both boys enjoyed the Martians better from a distance than when they came over to us, so I have some wonderful photos of Mommy with the Martians. It took him awhile, but Scott decided eventually that the Martians were not real and was a bit disappointed, he thought he was going to have lunch with “real” Martians. Actually, the food wasn’t bad, and being young at heart, I had fun. Next we walked and walked and checked out the American Girl store and watched the dolls having their hair done. We walked some more through the central park zoo, and on to find Balto the Sled dogs statue. This has been on Scott’s list of things to do. Poppie was a big fan of Balto and always took to the streets in snowstorms noting that “Balto got through to Nome with the Serum.” We walked through central park until we could walk no more, and grabbed a taxi back to Ronald. After a little rest we went out to dinner. When we got back our special friend Joanne at the desk secured a stuffed seahorse for Sean, since Scott already had his firefighter bear. We said a little prayer for Papa and for Sean in the chapel and got snuggled in for the night with out new stuffed friends.

August 25, 2005-We skipped breakfast and went to the hospital for Sean’s MRI. Scott is actually very good about not eating when his brother can’t and never complains. Sean was happy to discover that he needed only a water hose as his “Tubie” was already in. He likes to keep it covered and “hide” it. Mommy was glad that after 2 days of running around NY with his brother, “Tubie” was still in good working order. We had the same anesthesiologist and nurse as Tuesday which was really nice. We found out that the Renal scan was no good due to an equiptment malfunction, and will need to be repeated in 3mo. He will also have a Neuro consult to make sure that his falling down problem is just to be attributed to clumsiness. Scott stayed in the Playroom while Mommy took Sean to MRI. I placed his urine bag myself, just after he was given anesthesia which simplifies things quite a bit. Having the same anesthesiologist made that easy this time.
The rest of the day was quiet. Scott played and did art projects and came and went from the toy room. Sean was a little fussy waking up which is usual for him and when he was feeling better we joined Scott in the playroom. It was ordered to be a 6 hour collection which makes for a long day. We got to see Dr. LaQuaglia and our friend Carol NP briefly and learned that the MRI is unchanged and shows no recurrence of tumor! The small area of soft tissue something or other is stable. Hooray! Next we went to the playground and got to see Stacie, who used to babysit for Scott. Back at Ronald the boys were all wound up from being couped up all day. Lucky for me there was a dinner at Ronald. There were presents to be had and not many kids. Scott and Sean had already befriended one of the ladies in charge in the elevator. They went back and forth collecting gifts while I enjoyed my dinner. We ended up with boxes of puzzles and books that they could hardly carry and they were so happy!! They were just thrilled, it was like Christmas. They generously shared with a teenager at our table, so that she could bring some things home to her sister. She reciprocated with a butterfly ornament. Scott slept in his “daytime” clothes, so he would be ready to go home.

August 26th, 2005-A long boring ride home. Chaos with couped up boys and girls who missed us, and unpacking the car, while watching the kids and watering the lawn. Corn Flakes and Cheerios for dinner and Nemo with kids in my bed.

Poor Scott is really missing his Papa. He says he loves to work, but it reminds him of Papa and makes him sad too. It’s all he talks about day and night. He plans to build a road, attach a hospital to the house for Sean and so I can work there, put on 2 or 3 additions, a new garage, put in a hot tub, build a treehouse, buy a front-end loader and excavator. He emailed my stepbrother to please come over with his chainsaw to remove 2 or 3 or maybe 5 trees. I stopped today at a fence place and got his some scrap wood. He was thrilled. He built the other kids a car track with a hill. He starts school 9/6, I’m hoping that will help him. He wants to go to the toy store to buy work stuff for his class and he wants to build a fire station for his classroom, because he really likes his new teacher. I’m sad too. I miss Scott so much. He always made me laugh. Especially if I was sad or worried.

Thanks to everyone who babysat. Thanks for all the thoughts and prayers. Thanks to our special friends who continue to take care of us in so many ways. We have lots of Angels watching over us and we are blessed. September 9th will be 2 years since Sean was diagnosed with Neuroblastoma. I am so grateful to be where we are!

Please continue to pray for Sean and for our family and for all of our special friends fighting cancer so bravely. Especially for Jacob, Christi, Dylan and Matty. These kids endure so much, yet continue to live in the moment and enjoy life. I was snuggling with Sean tonight listening to him so peacefully sucking on his pacifier, in his sleep. Moments to treasure.

God Bless, Love, Ellen
XOXO

Wednesday, August 24, 2005 7:05 AM CDT

New York-August
8/22/05-We set off for NY City. Somewhere down the road I stopped for a diaper change. The car smelled like HOT brakes. Of course I had thoughts of a car fire and me with a 4 oz. bottle of poland springs trying to put it out. At the next exit, I noticed a Chevrolet place and thinking that I am the only parent and the car may burst into flames, I stopped. I happened to be in Mystic Conn. The nice man dropped us off at the Aquarium. Well, Little Scott, just like his father looked up and said “Hey, there’s Molly”, and sure enough his friend from preschool was there. Molly has been there several times and gave us a tour of the place and her mom even drove us back to the car place. The kids had a wonderful time. Scott said “I started out by having a lucky day, then I had a very lucky day.” I did too. The car was fine. ($40.00). Our trips to NY are always an adventure. When we arrived I immediately saw friends Melissa and Tim and Rhonda, who helped me in with all our stuff while I parked my big car.
The kids were all wound up and wild, so we ended up going for a walk. I got Sean some milk and was pouring out the juice in his cup to fill it with milk, on the sidewalk. The nice flower vender came over and took the cup and rinsed it with his water hose and even let Scott play with the hose. There are angels everywhere.

8/23/05 Sean had his renal scan. He was pretty upset about needing a “Tubie”, but got over it fast. Its still in and he tolerates that part fine. The scan went fine. He also had the urine test but the tubing came loose, so we have to repeat it on Thursday. He does not like that one as it is a 4 hour urine collection with a bag attached to him. I’ll try to do it with anesthesia, and while he is mostly asleep again.

Later we went to Time Square. We ate at Ellen’s Starlight Diner. The waitresses and waiters sing. Scott liked the part where a piece of Bazooka gum comes with your dinner. Scott E. and I were there with cousin Pamela (from Ireland), and Sean 2yrs ago. That was my first time to Time Square.
Later we walked over to Rockefeller Center because Scott wanted to know what's at the skating rink in summer. It’s the "Skating Rink Bar". It look look kinda funny with tables and chairs in there.

8/24/05-Today is my Anniversary. Who would have thought that in 2005 I’d be spending it in NY City for a Neuroblastoma checkup, without Scott (Papa). Life does have some crazy twists and turns.

Please pray for our friends here in NY Dylan and Carter both relapsed NB, and for our triplet friend Jacob with a rare form of lung cancer and for Christi who has relapsed after a long period of being stable with NB, and for Matty, who has relapsed hepatoblastoma, back in Boston.

Please pray for Sean that his Renal scan is good and that his MRI is totally clear and that his body is free from Neuroblastoma!

Thanks everyone at home for watching my girls!

Please sign the guestbook, so that we know you were here. New photos have beed added too!

God Bless, we are off to another adventure....
Love, Ellen
XOXO

Friday, August 19, 2005 5:55 AM CDT

Hi,
Happy Birthday Alysa (Grinchy)!
Happy Anniversary Katie and Scott!
Happy Birthday Lauren and Holly!

Well, we have been trying to squeeze some summer fun in here before we set off to NY next week. When Ruth is available, she will help me to take the kids to the ocean. They run and play and dig and I can sit..or help make sandcastles. They they each get some time in swimming. Everyone gets lots of exercise and fresh air and then sleeps better. If Ruth is not around we walk at the ocean, or we go for a picnic with our peanut butter and jelly sandwiches. Sometimes the beach, sometimes the yacht club, sometimes to the park. They they can come home and dig and get dirty before taking a shower outdoors.

Scott has been taking karate with his friends, twins, Nathan and Evan. He earned a yellow stripe yesterday. When you collect enough stripes, you can test for your yellow belt!
He was pretty excited.

Sean tripped over the highchair and knocked his front tooth back. He had an x-ray and the root looks ok. For now. He was very brave. Big Brother Scott helped with the girls, and everyone got a prize from the treasure chest!

Monday, I'll be taking Scott-6, and Sean to NY. Sean has tests on Tuesday and Thursday. The girls will have to stay home with sitters. I can't handle all four alone in NY.
I'm thinking I'll drive again so we can easily bring all of our "stuff".

Some of our Neuroblastoma friends will be in NY at clinic or at the Ronald at the same time. Its always nice to see our NB family.

Sean will have a Renal scan on Tuesday, and his MRI (to check on the cancer) on Thursday. He willl probably also check the urine for catecholamines. His last MRI was in February, so this is the longest I have gone...

Tiffany has a new job at Borders books, and seems to like it so far. She may take classes at the local college, too!

I miss Scott most of everyday! I think of him everytime I see a hardhat, a truck like his, or just when the kids do something cute. Wednesday the 24th is our anniversary! It's probably good that I'll be in NY with my boys.

Little Scott wants to work continuously. He is starting to cry at night and say he missed his Papa. It's hard to balance it all when he wants to "work", but I have to watch the other kids. He tells me he is putting in a hot tub, digging holes and working on the "piping", and building me a new bigger garage. He keeps telling me to call Jim and Ward (from where papa worked at the hospital) and to tell them to bring some heavy equiptment. He has very large holes to dig. He was also thinking he could build a hospital onto the house so I could work and Sean could get his checkups. He is a very busy 6 year old with lots of plans. I have moved him into his own room with Sean, and its going fairly well.

Please continue to pray for us, and for our friends. Jacob, our triplet pal, is having a hard time right now. Our friend James is just starting treatments for relapse, (he is 40 something, which is very unusual for nb. He has a wife and 4 kids), and Christi has just found out that she has relapsed after a period of doing really well.

Thanks to all of you who continue to think of us and take care of us and for just being there when I need you.

Each day is a gift! Enjoy today!
God Bless, Love, Ellen

Monday, August 8, 2005 10:46 PM CDT

***Our Triplet friend Jacob is in need of prayers. He has a very aggressive type of cancer that is resistant to chemo. Jacob is 5yrs. old. He has brothers Devin and Brandon and big brother Kyle 7yrs. Jacobs cancer is progressing and he is not feeling well. Please visit his guestbook and let his parents Heather and Donnie know you are thinking of him and praying. They are a special family that we met in NY in May and June. Thanks and God Bless, Love, Ellen

http://www.caringbridge.org/fl/jacob



Tonight marks one year since my Dad passed away, joining my Mom in Heaven. My mom died when I was 16. Dad was such an inspiration to me. He was always kind and tried to be positive. He too was left to bring up his kids alone. He would give us anything he could. I know in my heart that if Dad could do it, I can too. He was such a help to me when Scott died. He came over every day and helped me with the kids. He watered the lawn, held babies, and just sat with me and held my hand. We spent fathers day together at the cemetery. He was very sad when he found out that his cancer had progressed because he wanted to be here for the kids as a male role model, as well as to support me.

I know that he can help us more where he is in Heaven, and I know that he is no longer suffering and is at peace. We have lots of angels watching over us.

I made sure to tell the kids some silly made-up Poppie stories at bedtime. (He would make up stories and put our names in). They all kissed his picture goodnight like we do everynight, and God Blessed him. Papa too.

"Sleep like a Big Angel, Poppie", I love you and I miss you, Love, Ellen

Monday, August 8, 2005 10:46 PM CDT

***Our Triplet friend Jacob is in need of prayers. He has a very aggressive type of cancer that is resistant to chemo. Jacob is 5yrs. old. He has brothers Devin and Brandon and big brother Kyle 7yrs. Jacobs cancer is progressing and he is not feeling well. Please visit his guestbook and let his parents Heather and Donnie know you are thinking of him and praying. They are a special family that we met in NY in May and June. Thanks and God Bless, Love, Ellen

http://www.caringbridge.org/fl/jacob



Tonight marks one year since my Dad passed away, joining my Mom in Heaven. My mom died when I was 16. Dad was such an inspiration to me. He was always kind and tried to be positive. He too was left to bring up his kids alone. He would give us anything he could. I know in my heart that if Dad could do it, I can too. He was such a help to me when Scott died. He came over every day and helped me with the kids. He watered the lawn, held babies, and just sat with me and held my hand. We spent fathers day together at the cemetery. He was very sad when he found out that his cancer had progressed because he wanted to be here for the kids as a male role model, as well as to support me.

I know that he can help us more where he is in Heaven, and I know that he is no longer suffering and is at peace. We have lots of angels watching over us.

I made sure to tell the kids some silly made-up Poppie stories at bedtime. (He would make up stories and put our names in). They all kissed his picture goodnight like we do everynight, and God Blessed him. Papa too.

"Sleep like a Big Angel, Poppie", I love you and I miss you, Love, Ellen

Wednesday, August 3, 2005 3:26 AM CDT

***Our Triplet friend Jacob is in need of prayers. He has a very aggressive type of cancer that is resistant to chemo. Jacob is 5yrs. old. He has brothers Devin and Brandon and big brother Kyle 7yrs. Jacobs cancer is progressing and he is not feeling well. Please visit his guestbook and let his parents Heather and Donnie know you are thinking of him and praying. They are a special family that we met in NY in May and June. Thanks and God Bless, Love, Ellen

http://www.caringbridge.org/fl/jacob




Friday, July 29, 2005 5:33 PM CDT

Hi,
Happy Birthday Auntie Katie!
Today Scott A. was invited to check out Papa's job site. Our friends Jim and Ward have been very good to us. He got to sit on a real escavator, look into all the holes, foundations and even an underground jobsite. He got to see guys working on a fire wall. "I got to see digging with a new machine, I never even got to see before. It vacuums dirt from under the building. I saw a dump truck, grapple loader, backhoe road grader and lots more". Scott wore his own Linbeck hardhat from home. What a surprise for the kids, we came home and each of them had their very own hardhat, just like Papa's. Thanks Jim and Ward. Scott even got to have a cheeseburger with the "guys". Back at home we all ventured over to the "big hole", where Scott works. Everyone had to wear their hardhat for safety, even Mom. You see, his hardhat has a safety sticker on it, so now he is the official safety officer of the family. It's our motto with triplets anyway, "Safety First!" All the kids had a great day!

Next check up with scans in the week of 8/22. I just hope I can find some sitters that close to school starting!

Thanks for checking in on us. Papa was there with us today. How he would have loved to be on the job with all that is going on there.

Please continue to pray for us and for everyone who is suffering with cancer.

God Bless, Love Ellen and the kids.

Check out the new photos too!

Tuesday, July 26, 2005 9:53 AM CDT

Hi,
Heather had her adenoids removed yesterday. The Dr. said they were enormous! She is doing extremely well, and enjoyed a day out with Mommy. I think I distracted her enough that she really thinks she had a "nice day". That with the amnesia effect of the drugs! We had to wait for the prescription when we got home and so got to go to the beach with Mommy all to herself for a few minutes and watch the seagulls and the waves and stand out in the wind! She has really only needed tylenol and is so happy and cute! She had a few pale spells when I was concerned but they seemed to pass, and today she is fine. She likes her hospital bracelet and is wearing it on her ankle still. I'm trying to keep her a little quiet and stay home or maybe a car ride to the beach later, which means they are wrecking the place, so I better go. Just wanted to let everyone know that she is fine. Thank you all for the prayers! I'll write more later. I added a photo of Heather.

Seans next scans are at the end of August. He is doing fantastic!

Love, Ellen
xoxo

Saturday, July 23, 2005 9:00 PM CDT

Hi, I had a great time in Chicago. The news pertaining to cases like Seans was good. I came home feeling like we made the right decisions, and very thankful that we found Sloan Kettering and Dr. L. Last year I came home still wondering if not doing chemo was going to be Ok. I know nobody can predict the future and if things change I will change gears. For now, I am very thankful that Sean is doing Great! I very much enjoyed seeing friends from last year and meeting so many new friends in person, that I have gotten to know online, as well as some who I have met in NY. I'm having a bit of post-conference blues since most of these friends live so far away.

Heathers surgery was changed to Monday. I went shopping tonight and made jello (which reminds me of my grandmother when I was a little girl), and gatorade, and assorted other "little easy things" for her to eat.

The Lemonade stand went well in Osterville, and it sounded from Scott's report, that it went well.

Good Night and God Bless. Love, Ellen




Wednesday, July 13, 2005

Hi Everyone,
Sean is doing great. He is actually the only healthy one right now. The bladder spasms are now thankfully, a rare occurrance. His incisions are healing well. He has been very good about not going in the water when we go to the beach.
Scott had a fever/vomiting bug of some sort. Kathleen has a cold/fever/vomiting/ear infection thing. Heather has fluid in her ear but no infection (yet)/cold/vomiting thing.
I had a little computer problem and it has been sent to apple for repair. My sister Gael very kindly saw my distress at being "off line" and got me a used desktop for a back-up. Don't know what the "little problem" will cost yet.
My car blew an a/c hose. I know the man at Chevrolet far too well, for only having had the car for 9 months. Its only a 2003 and has been a bit of a lemon. I actually had to rent a car, which we don't all fit in, to bring the sick kids to the doctor today. The initial estimate is over $500.00 again. Last week was a battery and a/c compressor costing about $700.00. Ugh.

Speaking of Lemons...The Alexs Lemonade Stand is coming together for this Saturday in Osterville. It will be on Main Street in front of the Osterville Baptist Church. The time is 10am.-3pm. Please come out for a fun day and support Pediatric Cancer Research with a nice cold glass of Lemonade!

Thanks to everyone who is making this possible by volunteering or by donating the lemonade/cups/ice/balloons/t-shirts, etc. Last year we had a really great time at this Lemonade Stand and I'm, sorry that I will have to miss this one. I will be at the Neuroblastoma Conference in Chicago.

I'm looking forward to the Conference and the speakers from around the country. Its also fun to see my cyber-family that I met last year, online, or in NY. I look forward to meeting more of my cyber-friends in person.
Unfortunately, after almost 2 years of living in the world of Neuroblastoma, I know many, many, who are now "Angel" Parents. Please continue to pray for our friends and to support Pediatric Cancer Research. Neuroblastoma is rare, aggressive, and underfunded. The disease is harsh, and so is the treatment. Sean has been very lucky. He is 22 months from diagnosis and you would never guess that he has cancer if you didn't already know. His next scans are due in August and we will do them with his surgical follow up from his surgery on 6/22.

Next week Heather will be getting her adenoids removed, and will hopefully be able to breath, sleep and eat a little better.

I continue to miss Scott every single day. It will be really hard to get on a plane alone for Chicago leaving them all at home with sitters. I do not "trust" Neuroblastoma and feel that I need to stay informed on the latest news and treatments available. I'm hoping by tomorrow morning they are all looking a little healthier too.

Thanks to everyone who continues to pray for us and take care of us in so many ways. I would never be able to do what I am without all the help and support of so many. The kids, other than the current illnesses, are doing great and are happy. Thanks for taking care of our family. I continue to be amazed at the "goodness" of people. Kevin did some badly needed landscaping this week. Sylvia brought dinner one night. Gael got the computer up and running. Dee-Dee, Tiffany, Christa all babysat when I needed help on short notice. Jenn, Joyce and Ruth continue to be here for anything I need, and especially to just listen. People from around the world continue to check on us, think of us, pray for us, and leave us messages in the guestbook. And there are so many others taking care of us in many ways.
Please pray for a safe trip for me and that everyone at home stays safe and healthy.
Thanks, and God Bless,
Love, Ellen
XOXO

Wednesday, July 6, 2005 7:41 PM CDT

Please support ALEXS LEMONADE STAND which will be held at Osterville Village Days, Main St. Osterville on Saturday, July 16th!. The lemonadestand will be in front of the Baptist Church, (large white church in the center of town). The hours will be 10am/3pm. Thanks for helping kids, like mine, one cup at a time. Funds raised go to pediatric cancer research. I will be in Chicago at the neuroblastoma conference.
Thanks Everyone, Love, el


Hi, We made it home in pretty good time. I left NY at 545am. We didn't hit any traffic, even with the 4th of July holiday.
The kids were thrilled to see us. Scott was very proud to show off his missing tooth and the "real" dollar that the Tooth Fairy had left for him.

The Bladder Spasms can still be severe, but seem to be decreasing and little by little he is eating and drinking more. He seems to feel fine and is playing and running so I'm not worried. His post op check up and scans will be in 6-8 weeks in NY. This will include a Renal scan and an MRI of the spine as well as the urine test for catecholamines, (which the tumor can secrete).

We had a pretty quiet weekend. No sitters, just me and the kids. We went to the yacht club and played, trying to keep Sean out of the yucky lake water with fresh incisions..
We went to a small 4th of July parade, but they were fussy.
Kathleen and Heather have colds, and Sean was just fussy.
We skipped the fireworks, which is a little sad. Scott and I always went to ALL the fireworks. We would make a picnic, shrimp, wine, etc. Sparklers for the kids, etc. Then we wouldn't mind getting stuck in traffic, as they all fell asleep. (After of course, I climbed in the back with pacifiers, bottles, diapers, or whatever worked.) And we had quiet time for the ride home for us. I miss him at 4pm. when I know he would be driving home, and he would call me and tell me about his day. I miss him when I pass an F150 and think about how he needed a new truck. I think about him when I see guys hanging out on the pontoon boat at the yacht club and I know in a year or 2 we would have had one, and he would have enjoyed it so. He loved the yacht club.
I miss talking to him about the tooth fairy. Or whats for dinner, or what he wants to do this weekend, etc. I miss him when I go on the deck he built or in the outside shower he never even got to try.

Sorry, Holidays are hard. I miss Dad too. He always went to the 4th of July breakfast with me, and held a baby or 2. I didn't get to that either. I can't do it all alone yet.

There will be an Alex's Lemonade Stand in Osterville at Village Days on 7/16 from 10am-3pm. My friend from Cape Cod Five bank, Lisa Slattery will be running in with DY class president Abigail Cleary. I will not be home, as I will be at the Neuroblastoma conference in Chicago. Please go by and show your support for pediatric cancer research. Kids, helping kids, "One cup at a time."

Please continue to pray for Sean, he is doing fantastic, I do not however trust Neuroblastoma, so please do not forget us. Also pray for our friend Ryans family. Ryan became an angel on Friday after fighting Neuroblastoma all his life, he was 6 days younger than Sean, and was diagnosed with NB at the age of 5 weeks. Also our pal Jacob who is a triplet fighting a very rare form of lung cancer. He has a big brother just like us! You can check on him and his very handsome brothers at http://www.caringbridge.org/fl/jacob.

Hope you all had a great weekend. Believe me after almost 2 weeks at Sloan, and Ronald, I am still feeling exceptionally blessed. I just miss my best friend and husband Scott.
God Bless, and enjoy every day! Love to you all, Ellen

XOXO

Sunday, July 3, 2005 12:52 AM CDT

Please pray for our friend Ryan who gained his angel wings friday night. He was at Ronald with us, this trip and last month too, and I had met his parents in Chicago last year. He is 6 days younger than Sean and had battled Neuroblastoma since the age of 5 weeks. Ryan had stage 4s which is supposed to have a very good (97urvival) prognosis. He was an only child and his parents are devastated. You can leave a note for them at http://www2.caringbridge.org/mi/ryanc
I'm very sad to hear this news too. Thanks to everyone who has been praying for Ryan and his family. It's been very important to them.

Please continue to pray for Jacob (our triplet friend), who is undergoing a treatment never before given to a child.
http://www.caringbridge.org/fl/jacob

Thanks, Love, Ellen




Thursday, June 30, 2005 1:21 AM CDT

Hello,
Sean was discharged Tuesday afternoon. It took all day to get the drugs from pharmacy. We met some more nice folks though. We met Ashley and her family. Her Dad helped me back to Ronald with all my stuff. Ashley is 19yrs. old is planning on going home on Thursday with Hospice. Please say a prayer for our friend and her family. Sean played in the toyroom and had a nice day. The bladder spasms continue but seem to be lessening some. He had a nice nap and then there was a party and cookout here at Ronald. I met Madisons Dad in the toyroom and Mom back here at the party. (More prayers please). Sean isn't eating and drinking well, but I imagine that will get better. Today we went to Central Park. We found the statue of Balto that Scott has been looking for. I talked to him tonight and he was really mad that I actually "went" to it without him. OOps! We went to the Central Park Zoo too, might have to keep that a secret! It fun fun except that it was very hot and humid. It started to rain and we highjacked a cab home to Ronald. We started to take a nap, but he had another really good couple of spasms, so I called the hospital and gave him an extra dose of Morphine. They also said I can increase the ditropan (to prevent spasms) to 4XDay. Another party here for dinner and then into his jammies with "no tubies!"

Hoping to see Dr. L early in the am. and head to the Cape before the traffic.

BIG NEWS!!

SCOTT LOST HIS FIRST TOOTH!
He is very excited that he will have a special visitor tonight and told me that he was going right to bed!

I'll call in the morning to see if the Fairy came!
(Sorry to Miss this exciting First, but what can you do!)

Better get some rest for the 5 hour drive. Goodnight, and God Bless. Love, Ellen and Sean in NYC

Please pray for our friends. Love, Ellen

Tuesday, June 28, 2005 8:01 AM CDT

Hi,
Yesterday was terrible. It started out OK, Sean slept in a bit and ate a little. He wasn't eating and drinking enough though, so by afternoon, they decided he needed the IV in. Well Sean has a very good memory and did NOT want an IV. 3 of us held him and got a line in, but with the thrashing the doctor taped over the site, the opsite and the armboard, which was too snug. He decided to let Mommy fix it and was very good until the last piece of tape when he changed his mind. The tubing disconnected and there was blood everywhere. We still thought we could save it but the blood got sticky before we could get another helper and the whole thing came out. Well, this did not make Sean happy. He was telling Mommy to "go away." After another temper fit, they decided to try again. Meanwhile Sean had not had lunch, dinner or a nap due to continued severe bladder spasms. This time 4-5 people held him and could not get a line in. I left, but could here him screaming down the hall. Dr. L. came in then and said to take everything out. Sean was skeptical, as everything was removed and continued a HUGE temper tantrum that would not end. I ended up taking him outside in just a diaper and shirt, I'm sure folks wondered what I had done to the poor neglected child with no pants on who was screaming! The poor doctor who had gotten the first IV in and attempted the second walked by. She felt terrible! Eventually he calmed and we got a bananna from the street vendor, so I know he ate something. Next we went up to dinner. He didn't eat much and got ready for bed. Poor kid, we had also moved him into a crib, and changed rooms, so he was all messed up. The new room has a boy about 10 and his brother were here. Now its 10pm. (5hours past dinner time and 2 hours past bed time) and Sean got his second wind. He was tired but playing hard. He got in his jammies but had no intention of sleeping with the lights on. Next I got in my jammies which started another HUGE temper fit that would not end. I needed a quiet/dark place. I even asked to be discharged, but truthfully both the nurse and I were afraid he might have spasms and pain and it was too lat for the morphine RX to be filled. I ended up taking him to a room behind the playroom where he promptly fell asleep. Next she woke him for meds at 12am. Really bad idea. So we ended up sleeping on the floor in the family room. Next I updated this story and it all erased..ugh.

The good news is that Sean is voiding fine. Dr. L thought that he might have significant pain, and he did not. He isn't drinking a lot, but I realized he was sucking the bottle like a pacifier instead of drinking. All bottles went in the garbage. He is doing a little better, and I think a Shirley temple with 2 cherries should solve this problem! We will go back to Ronald today. Sad thing is, now we can tour NY and its raining. I'll have to think of something we can do in the rain. Getting a cab is also an issue as I have learned in the past. I wanted to take in the Central Park Zoo, Toys R Us, to get Scott a present-he always thinks up ways I can leave Sean for one little minute to get him a present, etc. Hoping the weather man is wrong.
Internet access is slim for me at Ronald so I'll update when I can. Word is a checkup on thurs and then we can head home in the 4th of July traffic! I'll be ready for a nice weekend at home.

Sean just woke up and he seems fine! Hooray!

God Bless, Love the exhausted Ellen and Sean, who now feels great, forgot all about yesterdays trauma and is building with Lego's.

Tuesday, June 28, 2005 0:44 AM CDT

I just wrote a huge story about our bad day, then the computer said it expired, and erased the whole thing. Thats the kind of day it has been, UGH. I'll try again tomorrow. He is OK, but VERY, VERY grumpy and I'm exhausted. Ellen

Tuesday, June 28, 2005 0:43 AM CDT

Monday, June 27, 2005 8:07 AM CDT

Good Morning,
As you can see, even Sean's friends have lots of Boo Boo's. It's really very cute. He was able to get out his IV and drain yesterday. Well next thing you know Monkey had a few less bandages. Interesting as he thought all of this up himself. He still is getting bladder spasms, but he still has the catheter in. I'm waiting for rounds to see what todays plan will be. He is still in significant pain at times. I'm hoping when the catheter goes the pain will too. I do remember after his big surgery 10/03, he had the same problem and it took a long time to go away. I imagine we will be getting out tonight or tomorrow, to Ronald and than take it from there. He is eating and drinking a little better and has more interest in playing. He also has a new crib, as he fell out of bed yesterday morning. He likes the crib, it has cool pink windows and he is up high and can see the cars and the Queensboro bridge, which is especially cool at night when the lights are on.

Mommy snuck out briefly yesterday and rode my bike over by the East River. It was great to get out in the fresh NY air. The path is blocked off, so its not a long ride, but still good to get out. This area reminds me so much of Scott. He walked there everyday and gave me the report on each of the homeless guys living over there on shelves by the road. We even left one lunch one day, on our way back from a restaurant. He really enjoyed NY and it was new to both of us. Its so amazing what has happened in such a short period of time. I'm sure I'm still in shock.

Everyone here is nice, even the parking man left my car where I can get to it and get my bike out if I want to.
Each day is a bit better. Hoping we will get out and be home soon.

God Bless, and thanks for thinking of us.
Love, Ellen and Sean
In NY

Saturday, June 25, 2005 5:30 PM CDT

Hello,
Sean is still having intermittent episodes of severe pain. Dr. L pretty much said this may continue until the catheter is out which will be another day or two. He would like the urine to clear more before removing it. He also vomited this evening, so he isn't feeling great. He is asleep right now after some Vistaril, so maybe he will be more cheerful later. I was able to go back to Ronald for a short nap. Our roommate has moved out and I am hoping to keep a private room and catch up on some much needed sleep. He may be able to get the drain out tomorrow. He is actually very good about cooperating with the tubes, etc.

It's nice that in NY most churches leave the doors open. I can run in while passing by and say a prayer and light a candle, (or several).

I've posted some new photo's of Sean, check them out and you can see how he is progressing.

Please sign the guestbook so we know you were here.

Please say a prayer for our friends Jacob, Ryan, and Dylan. Also for Nathan and Carter who found out this week that they have relapsed. It is a second relapse for Carter.

I think everyone at home is doing Ok.

So we will be here probably in the hospital for a few more days.

God Bless, Love, Ellen and Sean

Saturday, June 25, 2005 4:12 AM CDT

Hello, Sean was transferred out of the POU to a regular room. We got all cozy for the night when we got a roommate. He continues with intermittent severe pain. He was up at 1230, 230 and 430am. At 430am, he needed extra morphine and ativan. He is feeling much better right now (515am), except that now he is all silly and won't be quiet. I think he is making the other parents crazy. No sleep to be had here. He still has the IV, catheter, and drain. He is eating and drinking a little more. He feels pretty good in between the spasms. The incision is looking a little red and he has rosy cheeks. He is on Tylenol w/codeine too, so I hope we aren't masking a fever. They will look at that in the morning. Gotta go as he is playing shadow games and talking way to loud. He is waving his arm board and saying "Hi Mommy" and talking to his stuffed animals. At least he is no longer screaming in pain.
Blessings to all of you and thanks for checking in on us.
Love, Ellen and Sean
XOXO

Friday, June 24, 2005 9:00 AM CDT

Hello Friends,
My little pal is having a hard time post op. Wed night he vomited. Thurs am. we went to the toy room, He vomited ALL OVER ME! He has been having intermittent pain. He hasn't eaten or taken much in fluids. He did have a good spell last night when he had a wonderful time with some buttered noodles, (while on morphine). He was making tubes in his mouth with his penne and putting them on his fingers and totally cracking up. Shortly there after he was back to the pain. I think it is caused by bladder spasms at this point. So he is fine and suddenly wakes up screaming bloody murder, and freaking out. He was up in the night, wriggles all around etc. Then he needed to have his IV restarted, which he hates. The spasms seem to be coming more. He was mostly in pain from 6am-10am. Then he refused the medicine and was spitting it out. UGH. When he is like that he wants nothing, not toys, not mommy, nothing! Yesterday, I went back to Ronald to shower and they called me because he was flipping out. They thought he wanted me. He didn't, he was just in pain. He told me to go play in the toyroom "by yourself". When he calms down, he is very happy and playful....then it comes again. Ugh. They have just started pyridium and ditropan to see if that will help. He did the same thing 10/03 and it really held us up in the hospital. It was much bigger surgery too, but the intermittent pain/spasms is what held us up. He has not had anything to eat or drink today. He just had more morphine and is finally asleep. Think I'll go to.

Thanks for checking on us. And praying.
Love, Ellen
Hope I'll have good news later today.

Wednesday, June 22, 2005 9:19 PM CDT

Hi Friends,
Sean got to his room about 7pm. He went into the OR around 2:30pm. First he had a cystoscopy which confirmed the reflux. He had the reimplantation of the ureter just as Dr. LaQuaglia had planned. He said that things actually went "Better" than he had anticipated when I asked him. He has a catheter and a drain, an IV and the usual wires. He was awake for a bit and able to tell me if he had pain. He has also had juice. He was a bit dry, as we thought we were a first case, and he hadn't eaten, but his fluids seem to be catching up now. The only problem has been "snakes on my arms". I'm not sure if it's tubes and wires or hallucinations secondary to morphine. He told me its not his tubie, its snakes! So they are holding off on the PCA pump and using intermittent morphine until we make sure he is tolerating it OK. It was a long day as we were here at 6am. It was a little longer than I had anticipated and am glad we came to NY. Everyone here is very nice and I feel very comfortable w/Dr. LaQuaglia.

Scott is missing us some but calls me when he wants to and talks to Sean, and knows why we are here. Tiffany is there tonight too which is great. The girls are fine as far as I know.

I'm missing Scott of course, as last time we were inpt. he was here. I'm also seeing some folks that were here when I was here last with him. He would have taken care of the luggage, gone to get popcorn and a movie and kept me up to date re: folks in the playroom or out in the neighborhood. He had a great sense of humor, and could always make me laugh. Even when I was scared, or nervous or whatever, he knew how to make me feel better. I'm missing Dad, who would be so relieved to know that Sean is OK and Steph who would have called me a hundred times today. Sean has lots of Angels looking out for him from Heaven. We all do.

Thanks for checking on us. Sean looks very comfortable right now. He has all his blankies and babies from home.

Please continue to pray for all our friends. It's very hard to see all the adorable little kids who are dealing with cancer. It's very hard on the families too. So many are here for extended periods of time to get the treatments that they need.

God Bless and good night!
Love, Ellen and Sean Michael
XOXO

Wednesday, June 22, 2005 8:58 AM CDT

6:45 UPDATE

Sean's still in surgery, but word is it should not be long. I've been to Ronald McDonald, church (I have no idea what religion but, it was nice), and dinner. We will be in the POU (pronounced POOH), pedi obstervation unit.


2:30pm. Sean's in Surgery.

He just went in at 2:30pm. The plan is now to do a cystoscopy first and then decide whether to proceed. I trust Dr. LaQuaglia, so whatever he decides is fine. Sean had fun playing and then had a nap, so he wasn't to bothered about not eating. When we got to the OR, we played "Doctor" with his "Monkey" and stuffed dog "Sam".
Dr. L carried him into the OR and I got to go until he fell asleep. I'll update when I know more. Thanks for checking on Sean and me! Love, Ellen


Hello and thanks for checking in on us today. We have been delayed. We were here at 6am. to be first case. Finally, I asked, and we are scheduled now for 1030am. Therefore, we have moved to the playroom where we are meeting lots of our Neuroblastoma friends. Some are new friends and some are our cyber friends that we already "know".

Dylan is on Antibiotics, but out of the hospital.
Ryan will be starting chemo at a different hospital.
Jacob is recovering from surgery. His brothers are here too, and they are all adorable.

Sean had to have his IV re-started, a little more trauma, with three of us holding him down. He knows about the "dreaded IV room" now. UGH. Once its in though, he is very good and is careful to protect his "boo, boo". He knows he is here for Dr. Mike to fix his "boo, boo in my tummy".

I'll try to update later and should have better access over here at the hospital.

Blessings, Love, Ellen
XOXO

Tuesday, June 21, 2005 11:05 AM CDT

Hi Friends, We made it to NY, we drove this time. It's not a bad ride. The hardest part is that I was tired, so had to keep stopping. Pre-op testing is done. The IV was a little traumatic, as he remembers now from last month. It took 3 of us to hold the poor little guy down. He is very strong. Then we had to go back in to repeat a lab that clotted, but this time there was NO ouchy, and he was skeptical but OK. What a good kid. We delivered FROG's to Ryan and Jacob. (FROG=Fully Rely On God). They are both doing that right now. We are off to Central Park or somewhere for the day. First case tomorrow. We have to be here at 6am. Weather is great! Scott is missing me, and told me to tell Dr. L to HURRY UP!
God Bless, Love, Ellen

Please remember to sign the guestbook so that we know you were thinking of us. Thanks to all my Earth Angels, making my trip possible. I am very thankful to be having Dr. L to do this procedure.

Ellen

XOXO

Sunday, June 19, 2005 1:10 AM CDT

HAPPY FATHER'S DAY!

Hello, We are getting ready for NY again. I'm planning on driving this time. This way, I can get home quickly when we get released. I feel like it's such a long time to be away from the other kids. The plan is for about 7 days, plus pre-op testing and travel. We are hoping to leave Monday morning. The Ronald McDonald House is pretty full. I really don't mind when I "have" to stay in a hotel. It's much easier to stay on the fringes of denial there. I do of course like to see all our friends there though too. So, basically, I don't know where I am staying yet, but I'll call from the road, and not worry about it. I am glad we weren't booked for the helicopter this time as they seem to be having a problem staying out of the East River! Everyone got out, but one of the pilots is in need of prayers, in the one story that I read.

Pre-op testing is Tuesday and surgery to reimplant the left ureter is scheduled for Wednesday 6/22. I think he will need to keep the catheter in for about 5 days. He may or may not need a stent, etc. I know we are in good hands with our friend Dr. LaQuaglia. I really love everyone at Sloan and the Ronald McDonald House. They take very good care of us!

I am looking forward to going to Chicago again in July to the Neuroblastoma Conference. I found it very informative and met lots of my Cyber-friends there last year.

Heather and I went to Children's Hospital this week. She is scheduled to have her Adenoids removed on 7/22. It's day surgery and sounds pretty routine in Boston. They didn't want to do it at Cape Cod because she is so small.

By then, Sean will be about ready for follow-up and his 6 month scan and urine test are due in August. I better start shopping for kindergarten school clothes now, summer hasn't started and I can see it going by so fast.

Thanks to everyone who hosted or contributed to the Alex's Lemonade Stands. We had fun and are helping kids like Sean, One Cup at a Time. I read today that our new friend Afleet Alex and his team contributed $250,000 to Alex's Lemonade Stand so far....and it looks like the way he has been running there will be more to come. I gave the books to Scott's teachers and I know that it was already read to his class. We have been invited to have a stand at Osterville Village Days, but I will be in Chicago, if anyone would like to host a stand. I can help in getting everything ready.

Happy Birthday to Ruth and to Barbara! I hope you both have Special Days.

I miss Scott as much as ever. It's so hard to leave the kids with sitters even though I know they are in good hands. I really need a nanny to have consistency. Of course with Father's Day here I am thinking of Papa. I'm sad that he is missing their growing up. They are mostly very good and definitely very cute. Scott has been doing very well at soccer and swimming and I just miss talking with Papa about all of us. NY reminds me of him too. I'm glad he was able to miss work and come with us when Sean had the big surgery. I have lots of nice memories in NY and am thankful for that, despite our reason for being there. I miss Dad too. Last year on Father's Day we spent a long time at the cemetery holding hands and talking. He stayed with me all day. I was so lucky to have Dad the first 3 months after losing Scott. He was sick with lung cancer and that time was a gift! Scott is excited about the holiday and is busily making cards and gifts for me, for Papa, and for himself! After all, he told me, he is a BIG brother. I'm missing Scott E.'s work talents around the house too. The electricians have been here wiring the a/c. Scott went to school late so he could "work". They were very nice to him and he "wired" some wood for me. They also took the time to teach him to strip the wire etc. My plumber friend Whitey was here too and Scott was happy to show him where the shut off valves were. Thanks guys for letting Scott "work" with you. It's very important to me, and I appreciate it. It's not always easy to have a 6 yr. old apprentice. The battery in the car went and a/c in the car too. Last time I needed a battery, Scott bought one, and installed it in the parking lot. This one cost $329.00, (just for the battery, the a/c was another day)! Terry took extra good care of us at the dealership and even picked up and dropped off my car for the repairs one day. I had gotten spoiled as Scott was the electrician, plumber, mechanic and so much more. (Pretty amazing, really). I'm sad that he isn't here to teach Scott and the kids himself.

Thanks so much for checking in on our friends. Jacob (the triplet), is doing great and off the ventilator. Dylan (from Australia) is out of the hospital and on antibiotics. Ryan (Sean's age), I think is in the hospital, but I'm not sure.

Please say a prayer for our friend Jerry, his family and his Mom who passed away this week. Jerry is Heather's Godfather.

Please keep all of us in your prayers too!
God Bless, Love, Ellen
XOXO

Saturday, June 11, 2005 5:43 AM CDT

June 16,2005
Please say a prayer for Jay who gained his angel wings yesterday. He was at Sloan and basically lived at the Ronald McDonald house since before Sean was diagnosed. Papa Scott, Sean and I met him on our first trip to Sloan and he was there on many of my subsequent trips. Also for our triplet pal Jacob who has a very aggressive cancer called adrenocortical carcinoma. He is 5 years old. He was at Sloan last month when we were there for surgery. He already has 5 new tumors and is having surgery on friday. We met our friends Dylan and Ryan last month, and they are both also still at Sloan and need your prayers.
Thanks to everyone who contributed to the Alex's Lemonade Stands. These are the kids that we are working to help!

God Bless, Love, Ellen


"The measure of life is not its duration but its donation."


It’s NATIONAL ALEX’S LEMONADE DAYS and the BELMONT STAKES.

We have had a busy, fun and exciting week preparing for the Alex's Lemonade Stands this weekend. “This is a story about a brave little girl. She had pretty blue eyes and a head full of curls. Her name was Alex.” Alex Scott was dx with Neuroblastoma at the age of 1yr. When she was 4yrs. she decided to have a lemonade stand to help kids with cancer. Over the years her idea grew. Last year she hoped to make 1 million dollars, and she did. This year she hoped to make a Gazillion Dollars. Unfortunately, Alex gained her Angel wings on August 1st, 2004. Her parents are shooting for five million, but I’m with Alex, and I think we should go for the Gazillion! The owners of race horse Afleet Alex, had heard of this little girl and her mission. It was decided that when the horse wins/places/shows a donation would be made to the fund. Well the horse has done fantastically well! He came in third in the Kentucky Derby and won the Preakness, despite almost falling down. I believe he was helped up by an angel friend of his.... Tonight Afleet Alex will be running in the Belmont Stakes. Oh, Afleet Alex is also a personal friend of Sean’s, if you check his guestbook, you will see that it has actually been signed by the horse! Scott thinks this is really cool! Don’t forget to root for Afleet Alex tonight in the Belmont Stakes!

Lemonade Stands
Many of our friends have joined the cause. My sister Katie is having a stand at Madbury days in NH. My friend Heather is having a stand in Methuen. My friend Holly is having a stand in Westford. Holly lost her son Joey to Neuroblastoma this year. My friend Diane is having a stand on Boston Common by Newbury St. She lost her daughter Sophia to Neuroblastoma this year. There will be two stands on Cape Cod this weekend. The first is today at the Centerville Congregational Church on Main St. Centerville from 8am.-1pm. It is being run by my friend Lisa. The second will be at Roche Bros Market, Rt 28, Mashpee, Ma. on Sunday from 11-3pm. This one is being run by veterans Janelle and Carrie.
We will have some of Alex's children's books for sale and order forms for the beautiful Alex's Lemonade Jewelry. There will be Lemonade stands at the Belmont and at racetracks all across the country including Suffolk Downs in Boston.

My kids have been gearing up for the big weekend. Kathleen, Sean and Heather all know who Alex is after nightly readings of “Alex and the Amazing Lemonade Stand”, and Scott's new favorite song is “Lemonade” which will be avail for sale soon. For more info check out alexslemonade.com You can check on our new pal Afleet Alex at afleetalex.com

The lemonade stands are really fun. Anyone can do one, large or small. Its great for kids to learn about helping kids. Alex had a vision “one cup at time.......”, and is a testament to what one small girl can do.

Please stop by a lemonade stand this weekend, or you can make a donation directly at alexslemonade.com

Sean
Sean has the same type of cancer as Alex. Sean is doing fantastic. His last urine for catecholamines test was the best it has been. His surgery in NY to reimplant his ureter is scheduled for June 22nd. The baby-sitting logistics are tricky as I need sitters 24/7, but we have done it before.
I will probably leave June 20 to get there for pre-op testing etc.

Prayers.
Please say a prayer for our friend Ryan who is having a difficult time with Nb right now. Also for Dylan who is from Australia and is living at the Ronald McDonald House in NY. Please pray for Emma Grace and Chloe who gained their angel wings this week due to Neuroblastoma and for Erik who has relapsed after 13 years.

Graduations
Congratulations to my niece Christa on her graduation from Barnstable High School. The ceremony was bittersweet for me, as the last time I was there Scott was with me. He loved to take the triple stroller and hear what comments people made. I also couldn’t help but wonder somewhere in the back of my mind if Sean would make it there. Neuroblastoma is such and aggressive cancer, and I don’t trust it. Unfortunately, I have learned that anything can happen and does! Alysa, Steph's niece also graduated from Bishop Stang High School. She is like a niece to me. Congrats girls! Then we had Scott's “Celebration” at preschool. Of course, that also reminds me of Scott and Dad also came with us each year. Scott will be going to kindergarten next year, and I’m just sad to think of all that Papa Scott is missing. I miss him so much, all the time.

Continued thanks to Bob and Lolly and all the other folks taking care of us. Thanks to all the sitters who make if possible for me to attend the lemonade stands and basically get me through the days.

God Bless,
Love, Ellen and the kids
XOXO

Monday, May 30, 2005 11:26 PM CDT

HAPPY MEMORIAL DAY!

Last week we celebrated Scotts 6th Birthday. With Sean's surgery being cancelled, we were home. We had his Second party on his birthday. I had his school party early when I thought I might not be home. He had a great time with his friends playing, eating pizza and a very special cake that was made for him by his cousin Caitlin and her friend Andrea, who also babysits for the kids. It had tools, army guys attacking a dinosaur, gummy worms, jelly beans, etc. It was 3 tiers and all chocolate! Yum!

On Thursday, I had a visit from Kathy and Maggie from Keeping Pace with Multiple Miracles. They came to babysit for a few hours so that I could get out. Well, it was like Christmas here. They brought presents for all of the kids and also for me. Scott got a bigger bike (with no training wheels). We lowered the seat with tools from his "own" new tool box. He actually did very well, but will need a bit more confidence and a little practice. He is actually pretty athletic and coordinated. Not at all like his Mom. I got gifts too, of all sorts. A beach bag, a towel, bath things, grocery cards, etc. They even had a fund raiser at a private school that I knew nothing about! I continue to be amazed at the generosity and thoughtfulness of people. I was totally overwhelmed! I'm sure Papa Scott is so happy to see how everyone is taking care of us!

Saturday, Scott had his second soccer game. He even scored a goal and was so proud and pleased. I brought the kids so we were all there to witness this big event.

Sunday we went to the playground and then out to lunch at Wimpys. The kids were very well behaved and I had Cousin Caitlin to help out. Later Alysa came over and she and Scott washed my car, dug holes, did some "building" which involved ladders and saws and lots of carrying around of the new tool box. He had a great time!

Monday it was off to the Memorial Day Parade. This time we had Ruth and Cheryl to help out. The kids were great and staying in the triple stroller the whole time. Scott was happy to see lots of his friends and to watch the parade from across the street, like a big kid. We said our "God Blessings" at the cemetery and had a picnic at the yacht club, which isn't really open yet. After naps we went to Ruths for a cookout. Nana, (Stephs Mom) was there too.

I'm so happy that the weather has improved and that I can take them out more. They love to go out in Mommys Car. Most of the time they are very cooperative holding hands and helping me in any way that a 2 year old can. Scott is a huge help, especially now that he is six!

Gary is here finishing up the tile upstairs. It looks great and I can't wait until its done. Sean and Heather can get out of the cribs and Sean can climb over the gates, so it looks like I need to do some more childproofing and that big kid beds are just around the corner.

I miss Scott everyday. I saw a truck like his the other day and the tears just came. The lights were on, but no one was in it. Maybe he was saying hello. I hope he is with us and watching over us, although I can't say that I feel his presense, I wish I did. I really miss Dad and Stephanie too. I talked to all of them just about every day and sometimes several times a day. Sometimes I pickup the phone to call and then realize that they are all gone. It's very sad and surreal. Mostly, I just keep going moment to moment doing what needs to be done and treasuring the wonder of watching small children play. They are at a wonderful age, but I think every age is wonderful.

We have lots of fun with all the 20ish girls around here too. We have Tiffany, the cousins Caitlin and Christa, My friend Libbys kids-Abby and Dee Dee, and Caitlins friends Andrea and Katie. Then we have Stephs neices Lorel and Alysa. They all babysit and help me out and switch with each other if someone needs to change etc.

It's getting to be Alexs Lemonade Season here. June 10-12 is the National Alexs Lemonade Weekend. Alex Scott is the amazing little girl that started all this when she was 4 yrs. old. You can read more about her story or about how to host a stand at alexslemonade.com There will be an Alexs Lemonade stand on June 11th on Main Street Centerville hosted by my friend Lisa and another on June 12th at Roche Brothers in Mashpee hosted by my friends Janelle and Carrie. My sister Katie is having one in Madbury NH, and my friend Heather is having one in Methuen, MA. Funds raised go to pediatric cancer research. It also happens to be the weekend of the Belmont Stakes. Afleet Alex will be running. He came in 3rd at the Kentucky Derby and won the Preakness. Every time this horse wins/places/shows some money is donated to the Alexs Lemonade Fund. It really makes the race fun to watch!! You can check out Afleet Alex at http://www.afleetalex.com

Please continue to pray for Dylan and Ryan who are at Sloan in NY and having some tough times with neuroblastoma. Also for Jake, 4yrs. old who lost his battle with neuroblastoma this week. And for Little Nana, Stephs grandmother who is in the hospital. And then there is my friend James who is 42yrs. who has NB (extremely rare at this age), and is having testing and maybe surgery for some suspicious nodes. He has a lovely wife and 4 children and like so many with NB has to travel to get the care that he needs.

Thanks again to everyone who continues to take care of us and to pray for us from near and far. My kids are smiling, and its because of all of you! PLEASE-DON'T FORGET TO SIGN THE GUESTBOOK, so that we know you were here!


I hope everyone created special memories this weekend.
Bless all those in the military, past and present.
God Bless you and your families,
Love, Ellen
XOXO

Tuesday, May 24, 2005 2:09 AM CDT

Today is Scott's Birthday, Sean's big Brother!

HAPPY BIRTHDAY SCOTT ANDREW HANSON~6 YEARS OLD!

We Love you and hope you have a very special day!
Love, Mommy, Tiffany, Kathleen, Sean, Heather and Papa up in Heaven XOXOXO

Saturday, May 21, 2005 9:39 AM CDT

Saturday, May 21, 2005-10:52pm.

CONGRATULATIONS AFLEET ALEX, FIRST PLACE IN THE PREAKNESS!!

That means about $65,000 goes toward Alexs Lemonade Stand fund for Pediatric Cancer!! (I think.)


Saturday, May 21, 2005

Hi Friends,
We made it home OK. I sent alot of stuff UPS and took the train. My friend Gary picked us up and is back here finishing the bathroom tile. Sean is basically fine, just a little fussy with a cold.

Don't forget to watch the Preakness Horse Race tonight at 5pm. Afleet Alex is the Horse to watch. If he wins/places/shows then some money is donated to Alexs Lemonade Stand which is for pediatric cancer! These kids need all the help they can get.

Friends of mine will be having an Alex's Lemonade stand in Centerville on June 11th. There will also be 2 in NH, one at Madbury days. Another friend will probably have one on June 12th in Hyannis-still working on this one. I know there will be one at Marstons Mills Village Days in September too. Little Alex had big ideas and goals for this year. Lets help make it a reality.

The girls and Scott were happy to see us home early, I guess it is good practice for them for next month too. Maybe Papa was watching over all of us!

Please say a little prayer for all our friends in NY and for all the kids and families dealing with cancer.

Thank you to all the folks who delivered meals while I was gone and for taking care of things at home.

Hello to my new friends in NY, I'll be checking on all of you!

God Bless, Love,
Ellen
XOXO

Thursday, May 19, 2005 1:46 AM CDT

Hello Friends, Seans surgery was cancelled due to a cough. He had a chest xray which was fine. Of course, he didn't cough again all afternoon. Tonight however, the cough is back, he even threw up a bit from the cough, so I know it was the best thing. As Dr. L said, it is an elective procedure. We have rescheduled until June 22nd. Some of his labs are a little off, but Dr. L thinks Sean is just growing. I'm not worried at all.

I think of Scott as I remember our time in NY together. Although I don't like the reason, we did have some fun and I'm thankful to have those memories. Sean and I are making new memories too. We got to go to Chitty, Chitty, Bang, Bang on 42nd Street, Tuesday night. The show was fantastic and we met a very nice lady who took special care of us. Sean stayed awake for most of the show and loved it. I thought he might have been scared by the special effects I was warned about. We haven't had any trouble getting around the city now that I know the inside scoop. (No cabs avail at 5pm. or in the rain!-see prev journal to see how I learned this secret!)

Pre-op went well and we got all the way to the OR doors before surgery was cancelled. A little deja vu, as last time I was in that spot Scott was holding Sean before his last surgery. Maybe he was there today watching over us. We got to see alot of our old friends who are still working here. I love Sloan. Everyone is friendly and kind and remembers Sean. I'll consider it practice for next month. I'm hoping Sean will remember blowing bubbles with Carol, getting toys from Dr. L and watching the clowns instead of remembering his IV.

The best part of the trip is the people who I have met that I already "knew" from the internet. Down the hall is a triplet family with a big brother, like ours. I know of them from triplet communications online. Jacob had surgery and did amazingly well and got to go home early. Across the hall is Dylan, he is from Australia and is here to get treatment not avail at home. He is Scotts age. Ryan is 6 days younger than Sean. I met his parents in Chicago at the NB Conference. We saw them at Central Park this afternoon and I had dinner with Mom tonight. Emily had surgery yesterday. She was Seans roommate in October 2003 when they both had surgery, and they were both scheduled for surgery again yesterday. All of these families have been checking on us and taking care of us despite their own troubles.

The weather has been great. We haven't even needed our coats and have walked all over the place. Sean likes the sights and sounds of the city. He likes to go "out in my car", which is his stroller.

We will probably take the train home later today. There are no Corporate Angel Flights available. I still have to ship some things as I packed for a long stay. I'm mailing everything I can to make the trip a little easier.

Thanks again to everyone taking care of us here and at home. Thanks for all the prayers for Sean and our family. Please pray for our Special friends at Sloan and for our friend Kit who also had surgery this week.

Scott A. talks to Sean on the phone everyday, its very cute to listen to both of them. I'm glad we will be home for his birthday. I better go figure out the train schedule........

God Bless!
Love, Ellen and Sean in the big city!

Tuesday, May 17, 2005 2:49 AM CDT

May 18th
SURGERY IN CANCELLED!!
Sean has a cough. We will be coming home, I'm not sure how or when yet. He is fine. Ellen



Hello Friends,
We have made it to New York! Daphne drove us to the airport and we had a very nice Corporate Angel Network Flight. As you can see, Captain Miles even let Sean play in the cockpit. Kara and Sue made sure we were comfortable and Sean received a special new friend, "Monkey". The Ronald McDonald house (84 families) is full, so we are staying at 39th street. We walked up to 70th to see some friends. Their daughter is having surgery today. Its a small world, as Dr. L is one of the Dr's on her case! Sean enjoyed checking out the ships and tugs passing by in the East River. He also just enjoys the sights and sounds of the city. We had a nice dinner and ice cream as he can't eat after midnight for his Renal scan tomorrow.

We got the results from his labs last week. VMA is 6.5 and the HVA is 10.4, these are markers than can indicate neuroblastoma. These results are the best they have ever been. His other labs are normal including the LDH (which has been sl. elevated in the past.)

Everyone seems to be fine at home. Scott had his (early) birthday party Sunday with his school friends. The weather held out for a nice pizza party on the deck.

It was nice to see friends here. I miss Scott and think of all the things we did when Sean was here for his big surgery 10/03. We were so lucky that Scott was able to stay with us then, and despite our reason for being here, we managed to have some fun! We miss you Papa!

Today Sean will have pre-op testing and a Renal Scan and then we will have time to roam around a bit. Scott thought maybe if we went very fast, we would have time to go to the toy store and get a little something for his birthday!

Thanks to everyone taking care of things at home. We have earth angels arranging for rides to and from school, birthday parties and playdates, and quite the line-up of sitters as well as friends checking in or making dinner. I appreciate everything everyone is doing for us.

Please say a prayer for our friend Kit who had surgery today, for Sean, and for everyone at home.

God Bless,
Love, Ellen
XOXO

Tuesday, May 10, 2005 1:59 PM CDT

Sunday, May 15, 2005
Seans lab work was all normal. Even his LDH. The Urine test is still pending for catecholamines. We will be heading to New York on Monday. Tuesday will be a Renal Scan and pre-op testing and Wednesday is surgery.

I have sitters pretty much lined up. We are having Scotts "School" birthday party later today. Naturally for Scott its a construction theme. Mostly we will have pizza, cake and ice cream and let boys be boys. Just hoping it doesn't rain. His "real" birthday is May 24th, but I'm not sure if I'll be home yet, so we will have another little party sometime when Sean and I get home.

I hate to leave Scott A. for so long. I think the girls will be fine. Thankfully I have lots of young girls to keep the kids entertained. He might not miss me at all! And who knows, the plan is for about 7 days, so 7-10 with travel, but maybe it will be easier than we think. I hope so. I'll be missing Scott E. in the hospital. We took turns whenever Sean was inpt. And kept each other company.

I'm thrilled to have Dr. La Quaglia to do the surgery and I know I'm in the right place.

Thanks for all the help with sitting, meals, rides to school, etc. and helping me make this all possible and as stress free for the kids as I can.

God Bless, Love, Ellen XO



Tuesday, May 10, 2005

Today is one year since we lost Scott. The day my old life ended, and my new life began. I liked my old life. I'm still learning to function in my new life. Like a baby, learning to walk. Falling down, getting up, trying again.
It's still very unreal to me that all of this is even possible. I would love for someone to wake me up from this really weird and scary nightmare. We all miss him terribly!

Tiffany and I started the day at Mass. I lit a candle for Scott, my parents, Stephanie and for Cryton-a little boy who died of NB the same day as Scott. Next I went to the cemetery and coffee with friends. Later I took the babies to the cemetery and we left a Rose from each of us. I know Scott is in Heaven and at Peace.

I want to thank all the people near and far that have taken care of us in so many ways this year. I am still continually overwhelmed by the goodness and thoughtfulness of people. I would not have been able to be home and to care for our children as I have without all of you.


I especially want to thank Jenn, Joyce, Ruth and Libby who have been here every step of the way, holding me up.

I cannot express my gratitude. There simply are not enough words!

God Bless,
and Thank You, Love, Ellen and Papa Scott in Heaven too.
XOXO

Sunday, May 8, 2005 10:59 PM CDT

HAPPY MOTHERS DAY!!

BLESSINGS,
LOVE, ELLEN, SCOTT A., KATHLEEN, SEAN AND HEATHER

Saturday, May 7, 2005 4:41 AM CDT

Hi, Happy Mothers Day weekend to all you Moms out there.
Sean has an appt. in Boston on Monday for his routine 3 month checkup. He will have lab work and his usual urine test for catecholamines (secreted by the tumor). We will leave for NY the following Monday, the 16th for Surgery on May 18th. He needs his L Ureter reattached. Dr. L said he expected us to be there about 7 days, so with travel days I'm thinking 7-10, but hoping it will be less. When we get out of the hospital we will probably stay at Ronald McDonald for a few days and make sure that all is well. I'm just starting to figure out the babysitting at home. I'm sure it will come together as we have done it before. Scott has school so it will only be the girls most days.

Scott should be starting soccer but we got rained out last week and its looking like another rain day this week. He is taking and enjoying his swimming lessons this year.

All the kids are talking much more. They are playing together and interacting more. They wash each others hair in the tub or help each other get dressed. They love to play in the front yard, which now has a fence thanks to our friends at Angels Hope and ProFence in Dennis, Ma. Like their Papa, they all like to work. We rake, shovel and wheel barrow all kinds of things. Scott and Sean got a Dump truck that really drives from Auntie Gael and Katie for Christmas. Every nice day, Scott takes out his truck and gets to "work." Sean helped me move their little picnic table from the basement. Scott was really mad, as he wants to do all the "heavy work." I just hope it lasts when he is 18yrs. I did find him another very important job, helping Sean move a truck and then he was fine.

Scotts Birthday (6yrs.) is coming up the 24th. As I don't know when I will be home, I am having his school party early. The theme as you might have guessed is "work". I found blow up hammers and tape measures and paint brushes etc. I think it should be really fun for him.

I had to change Heathers consultation re: her adenoids until June. She is small to have them out anyway, so this is no big deal. She just keeps snoring and snuffling for awhile longer.

Don't forget to check on Afleet Alex running in the Kentucky Derby on Saturday. When this horse wins, places or shows a donation is made to Alexs Lemonade which raises money for Pediatric Cancer. The horse has done very well and so the donations have been great. There will even be an Alexs Lemonade stand at the Derby being run by Alexs family. Check out Alexslemonade.com for more info.

I am missing Scott at this time of year especially. The anniversary makes it all real. Of course its real everyday and I do all I can to not think about what isn't and be thankful for what is. Lisa came over for Chinese tonight, my sister Katie will be here for the weekend, and friends are coming over Monday night. Thanks everyone for continuing to take care of me.

Please say a prayer for Deacon Stanley who is battling lung cancer, and for all the kids and families fighting Neuroblastoma. 5 children that we know of have joined the other angels in the last few weeks. I hope Papa has built a nice playground in Heaven for them.

God Bless,
Love, Ellen and the kids.
XOXO

Monday, May 2, 2005 1:43 AM CDT

Tuesday, May 3, 2005 12:10am CST

HELP WANTED!!

Hi, Well, I have received a message from Dr. LaQuaglia's Office. I haven't spoken with them yet, but I think that Sean will be scheduled for surgery in NY for May 18th. He needs his left ureter reattatched. That means I will probably go on May 16th and have pre-op testing on May 17th. I just thought I would put in a quick note so all you babysitters out there can be prepared! Thanks in advance! Really, the girls and Scott are very cute and funny. The deck has gates and the front yard has a fence! You will have a good time here. Love, Ellen and the kids. XO


Monday, May 2, 2005
Hello, Last year I wrote, Hooray Hooray, the First of May!
I'm not quite feeling the same way this year. Last year we were going places and doing things with the kids and Papa and having a great time. I have been doing some things with Scott but much less with the babies as I could have done with two of us. For that I am a little sad. Mostly I just take them in the car which ususally includes the dump and dunkin donuts as they are both drive up, or we go for a ride. Last year we flew kites, went to the zooquarium, river day, the angels hope walk etc. Everything has changed. It is getting a little easier to go out with them. We have graduated to going to Stop and Shop or BJ's shopping! I miss Scott terribly and am not going to go to river day or the angels hope walk, its just too sad.

I took Scott to a Red Sox Game thanks to our new friends at Dana Farber Cancer Institute. We led up to it by buying a banner for his room and noticing all the Red Sox hats and shirts we saw around. We also listened to "Take me out to the ball game," a number of times. He wore his shirt all week in preparation. (See the new photos.) We drove to the Prudential to park and then walked to Fenway. We found our Dana Farber friends right away. Scott was glad to see his friends Matt and Chris again so soon. Their Dad treated everyone to ice cream and that was just the beginning. Next we had hot dogs, popcorn and of course Cracker Jacks. Scott had never heard of these so it was kind of fun. We took lots of photos and had great seats. We next found friends Paula and Billy about 10 rows back right in our section! Paula had binoculars which was really great for watching Johnny Damon out in center field! Scott and I stayed until the very end. We lost the game but he decided to vote for the Oriels, so he won! We even watched Damon and Ortiz drive away in their fancy cars. Scott thought this was the best part, besides the food. We watched them clean up and take care of the field. A girl next to us asked for some "dirt" from the floor of the field, so Scott did too. He took it to school to show his friends. Next we attempted the subway back to the car. The trains are infrequent at this time of night. I made a few bad decisions and we were like "Charlie on the MTA" stuck on the train in Boston. Eventually, we got off and headed home. It was a late night but a special memory for my little guy. We were so lucky to have tickets, Thanks Linda. I really appreciate your taking care of us. Especially at this time of year.

Last night we had another set of triplets over for dinner. Zack, Bronwyn and Shioban are 2 months younger than my crew. They were all very cute and played nicely together. It was interesting to see how they would react to each other. Thanks for dinner Mike and Gabrielle, and for the consultation on my lawn-which needs lots of work!

Tiffany is moving to a new place with a new roommate. We were able to go to Cookes like we did last year for her birthday. I met Holly her new roommate. The kids were good and really enjoyed their ice creams. Scott decorated her birthday brownies, most of which I have eaten, and she will be sporting a new Alexs Lemonade Necklace! Happy Birthday Tiff!

I got an email from Dr. LaQuaglia re: Seans Scans, now I just have to schedule the surgery. It may entail a catheter for 3 months. That I would not be looking forward to. I have to talk to him again and set a date. He has kidney reflux from the original surgery.

This weekend is the Angels Hope walk for Hope in Harwich. If your interested, the link is below. Its a nice day and for a good cause. They help families of kids with cancer. They have done so much for us, in so many ways and we are extremely grateful. We have also made lots of very Special Friends through Angels Hope.

Please continue to pray for children with cancer, esp. neuroblastoma and especially Jessica. She is the 4th child to gain her angel wings this week alone. Neuroblastoma is often very aggressive.

Thanks for your continued thoughts and prayers for our family. I often feel very alone and appreciate the support.

I miss you Papa! God Bless Everyone!
Love, Ellen
xoxo

Thursday, April 28, 2005 10:55 PM CDT

HAPPY BIRTHDAY BIG SISTER TIFFANY! 20 YRS. OLD!

Love, Scott, Kathleen, Sean and Heather
Ellen and Daddy up in Heaven too!

We Love you!

Saturday, April 23, 2005 7:17 PM CDT

**April 27, 2005-Please say a prayer for Angels Lexy and Mason who both gained their angel wings early this morning. Both had battled Neuroblastoma.


Hello, We had a nice school vacation week. First to Sean..NY has received his cystogram xrays, I just have not heard about the reading yet.

I ordered Scotts favorite thing, a truckload of dirt. The nice man let him drive the dump truck out of the driveway. He was so excited.

Grammy and Auntie Debbie came to visit. We took Scott and Cousin Keith to Boston for the day. We parked at the Prudential and took the subway to Quincy Market. We ate and watched street performers. The weather was perfect. Next we took the subway to the Pulic Garden and found the Swan Boats and the Statues from "Make way for Ducklings". We walked from there back to the Pru and finished the day with a Duck boat ride. The timing was nice for sunset and then to see the city lights. Each of the kids were able to drive the boat. Scott is very proud that he drove a Duck boat and a Dump Truck in the same week!

The next night we went to Wimpys for dinner and Auntie Gael and Tiffany were able to join us. The kids were mostly very good.

It's getting easier to take the kids out as they can get in their car seats and pretty much do what I ask of them for safety. They even put on their own sox and shoes most of the time. Today we went out to get diapers. They love to go out in "Mommy's Car."

It's not the best time of year for me as I know where I was last year. Lots of deja vu. Last year I took Scott to the Science Museum and remember calling Scott on the cell when we left. I was watching the helicopters land at Mass General from the Duck boat. When Sean was diagnosed, our room looked over the river and Scott would watch the duck boats. He also watched each helicopter land. We got dirt delivered at this time last year. I have poison ivy, just like last year..from raking and digging in the garden. It's spring, and its a great time of year on Cape Cod. The trees are budding and flowers are blooming. I still cannot imagine what happened to Scott. Almost one year later and I can only think of how the circumstances just do not fit with what happened. I miss him terribly and think of him all the time. I still cry everyday because I think it is so sad. The kids will try to comfort me...also sad.

Still I know I am blessed. Sean is doing great. He eats like crazy and weighs 32lbs. Kathleen is 26lbs. and Heather is 23lbs. How is that for a difference. He runs and plays and seems to have no residual problems other than the kidney reflux which will probably require minor surgery. Other kids with his type of tumor just a little higher up in the spine are paralyzed.

Please say a prayer for Jack who has joined the other angels in Heaven this week.

Monday, Scott and I are going back to Boston for a Red Sox game thanks to the folks at Dana Farber Cancer Institute. He is getting excited for the "Big Game", and naturally enjoys his Mommy time.

Sean's next check up is May 9th. No scans this time though.

Happy Birthday to Aunt Debbie and Cousin Ashley, and on April 28th to Tiffany, Cousin Keith and Jenn. April is a big Birthday Month around here.

Thanks for checking in on us, and God Bless! Love, Ellen


A SONG THAT MADE ME THINK OF SCOTT:
LONESTAR LYRICS

"Not A Day Goes By"

Got a picture of you I carry in my heart
Close my eyes to see it when the world gets dark
Got a memory of you I carry in my soul
I wrap it close around me when the nights get cold
If you asked me how I'm doin' I'd say just fine
But the truth is baby, if you could read my mind

Not a day goes by that I don't think of you
After all this time you're still with me it's true
Somehow you remain locked so deep inside
Baby, baby, oh baby, not a day goes by

I still wait for the phone in the middle of the night
Thinkin' you might call me if your dreams don't turn out right
And it still amazes me that I lie here in the dark
Wishin' you were next to me, your head against my heart
If you asked me how I'm doing I'd say just fine
But the truth is baby, if you could read my mind

Not a day goes by that I don't think of you
After all this time you're still with me it's true
Somehow you remain locked so deep inside
Baby, baby, oh baby, not a day goes by

Minutes turn to hours, and the hours to days
Seems it's been forever that I've felt this way

Not a day goes by that I don't think of you
After all this time you're still with me it's true
Somehow you remain locked so deep inside
Baby, baby, oh baby, not a day goes by

Monday, April 11, 2005 2:35 AM CDT

Hello! Happy Spring!
Believe it or not, NY still has not seen Sean's cystogram results from Boston on 2/14/05. Once again, I am told it has been sent. I'll check again this week. Otherwise, he is fine, running and playing with the kids. Kathleen is getting over an ear infection and Heather is fine.

Scott A. and I have just returned from a Special "Yahoo" ski weekend with Dana Farber Cancer Institute. We met some really neat new cancer kids and their families. I wanted to bring the babies, but decided that it was too far, and it would be too much and so Scott got to go and have Mom all to himself. He had a great time. He took a lesson and went to the top of Wildcat Mt. in NH. He even skied from the top on Intermediate terrain this time. He was very proud. The weather was great. He also got to go on a Ski-mobile ride with the generous owner of the mountain. Meals, accomodations and equiptment were included as well as entertainment. There was a clown, face painting and even animals. There was a nice dinner and a party with a DJ. Everyone took very good care of us. We got T-shirts, gifts and we even got a pair of Red Sox Tickets!! Some of his "new" friends also won tickets for the same day, so he is very excited. It was so nice to see all those kids smiling and dancing and playing in the pool and just having a good time. Everyone we met was Special. Linda and her daughter took especially good care of us and went out of the way to make sure we had a great time!

Scott saw his first Moose on Saturday and then we saw another on Sunday. We took lots of pictures even though they blend in with the forest pretty well.

We slept over at Grammys the first night and saw her again on the way home. Scott always stocks up on his "wood" supply at Grammys so he can "work" when we get home.

I missed the babies and was glad to get home. It's been 11 months without Scott and it feels like forever. There are so many reminders for me in NH. I had a lot of sad moments when I remember all the fun we had and the places we went and know that he won't be here to share it all with us in the future. I have strong memories in the same area with Stephanie and with Dad. My family first went to N. Conway in 1979. Dad did business there and Stephanies family has a house there. She taught me to ski in high school. I miss Scott every day. He would love to see how Scott is skiing now. The last time we were at Wildcat, Scott was 2 yrs. old and we took him up the chairlift with snow boots and cross country skis. We took turns skiing down with him between our legs. He has great balance and seems to be a natural, like his Dad. Grampy Bill was also an avid skier.

My friend Gary is here helping me by tiling the bathroom and any other jobs I can think up. Scotts friends Chris and Ward were here to visit too. Scott enjoys having "work" going on and boys to discuss his "job sites" with.

Thanks to my sister Gael, Ruth, Rose, Andrea and Katie for taking care of the kids so that Scott and I could participate in the "Yahoo" weekend. I really appreciate all your help. Thanks to everyone at Wildcat, Town and Country Motor Lodge and Dana Farber for making the weekend possible. I was thrilled to be able to get Scott on ski's once more and we made some great new friends. He seems to be doing much better at separating from Mom.

Thanks for checking in on us and please don't forget to sign the guestbook.

Please continue to pray for us and please say a special prayer for Elijah and his family. Elijah had NB and became an Angel on friday.

God Bless,
Love, Ellen

April 17th-Please say a prayer for Trevor White and his family. Trevor is now at Peace in Heaven. He died of NB on 4/16/05.

Tuesday, March 29, 2005 9:13 PM CST

****April 3, 2005-Please say an extra prayer for Amanda and Joey who have lost their battle w/NB this week. Joey is from Boston. We met his Mom in Chicago last year.
http://www3.caringbridge.org/oh/amanda
http://www.caringbridge.org/ma/joeym
And also for Donna, Billy, and Molly. Molly has ALL. Her Dad was killed in a tragic accident in NY this week.
http://www3.caringbridge.org/ny/mollyg/index.htm
And of course for the Pope.
Blessings, Ellen



Hello,
Sorry its been so long since I have updated, but these kids are keeping me pretty busy. I haven't heard anymore from NY re: Sean. I will have to send a few e-mails and see where we are at. There has been a communication problem between Boston and NY. He probably needs a minor surgery to reattatch his ureter to his bladder and solve the problem he has with reflux (backing up into the kidney) of urine. His next check-up is May 9th. In the meantime, he is doing great! He plays hard and eats like a horse! He got his very first haircut which was a big deal for me for a couple of reasons. One being that he has had chemo and lost most of his hair when he was first diagnosed. The second being that the back of his hair had big soft curls like his fathers. I had the hairdresser clip a nice curl for me and I have it framed between two pieces of glass. I tied it with a tiny blue ribbon and it actually came out really cool! Next we helped Rellie (my best friend Stephanie's niece) celebrate her 21st birthday. It turned into a week long celebration! Then of course the Easter Bunny found his way to our house. The kids were thrilled with the baskets and eggs and bubbles and other goodies.

It's a difficult time of year for me. Tomorrow is one year since Stephanie began her new life in Heaven. She is also Seans Godmother. We are coming up to one year since Scott (Papa) joined her in Heaven in May and then my Dad Poppie in August and her Dad, Ubba in January. I know what we were doing and where we were last year and am reminded daily of how much I miss everyone and how many things have changed for all of us. I miss Scott so much and I'm very sad.

I also check on all our Neuroblastoma friends and family and am reminded how lucky I have been. It can be a terribly aggressive cancer. All my kids are doing great! Tiffany still is working at the Pizza Shop and enjoying living in her own apartment. Scott is taking his swimming lessons, and doing well in school. Thanks to all of you who remembered and made the effort to send him postcards from around the country. He got more by far than any other kid and that really made him feel special! Something a big brother of 2 yr. old triplets really needs!! Kathleen and Heather had their first manicure and pedicure and are becoming little ladies. (Thanks Rellie!) Please remember to say a prayer for our NB warriors and angels and their families. A lot of kids have relapsed lately, and others are just not doing well. Far too many have gone to Heaven at a very young age and after very difficult battles.

Thanks for checking in on us and for caring. Thanks to all the folks who continue to help me to take care of our family! I cannot express what it means to me to be able to be here for the kids. I could not be doing what I am with out the tremendous outpouring of support from the community, friends, caring strangers and earth angels! Please continue to pray for me and the kids. I've been flirting with cold/flu symptoms for a few weeks and don't know what I would do I were to get sick. I'm still very much on one day at a time. Please don't forget to sign the guestbook and check out the updated photos.

God Bless,
Happy Spring,
Love, Ellen

Tuesday, March 22, 2005 5:00 AM CST

Good Morning!
I spoke w/Dr. LaQuaglia. They can't quite say that Sean is NED yet. There is a little something near the spine. At any rate, it is once again IMPROVED, so we are heading in the right direction. NY and Boston have had quite a time with transferring information. (Amazing, really.) So I am still working on getting a readable copy of the VCG (voiding cystogram) to NY for review. Then we will decide about reimplanting the ureter which sounds like he will need.
Thats it for now. I'll try to update more later.

Thanks for the continued love and support. Please remember to sign the guestbook, and thanks for all the prayers!

God Bless, Love, Ellen Hanson

Tuesday, March 15, 2005 9:43 AM CST

I just got off the phone with Sloan. Sean's case will be discussed at tumor board today, so I will hopefully have more detailed info soon. There are so many kids sicker than Sean, I have had to wait for all the pieces to fall into place. I am grateful that he is doing so well.

(I still have such a hard time writing "I", instead of "We".) I know that Scott is with us, but I assume in Heaven he already knows how Sean is.

The LDH was repeated in Boston and it did go down from 438 to 357, so its headed in the right direction. The Urologist did say that Sean will need to have his ureter re-implanted at the bladder. I'm waiting to see what Dr. La Quaglia has to say. (I absolutely trust him, and he knows what work he did in there before.) Please continue to pray for us and for all our friends dealing with NB. Thanks you so much for checking on us. Please sign the guestbook, we know you are here by the count!



Monday, March 7, 2005 3:38AM CST

Hello!
Re: Sean's MRI, I did hear from Boston that after the "official" reading, there is no evidence of tumor. I heard the same from Dr. LaQuaglia in NY. I am still waiting to hear or get copies from Radiology comparing the latest MRI to the previous one in NY. His urine catecholamines are within normal limits, so I am assuming all is well. Also, if it were any different, I would assume someone, somewhere would have called by now. His scans were 2/14/05. We do have an appt. with a Urologist at Boston Childrens on Tuesday and will repeat his LDH and Alk Phos at that time and see where we go from here. He may need a minor procedure to re-implant his ureter at the bladder I believe. This we were told when he had surgery 10/03 by Dr. LaQuaglia, so it is not a surprise.
Maybe I can get the result of the comparison of scans while I am up in Boston. Hooray for Sean! It looks like all our angels are watching over him!

Scott and I went up skiing with Libby to her brothers condo over school vacation. I never skied with any of them, we kept missing each other and the cell phones don't wo
rk at Attitash. Scott took a lesson, skied with The kids, and even went to the top and skied down with no problem. He loves his "big friends" Abby, and Dee Dee. He got to see his friend Daniel again and we saw our friend Nora at Shannon Door Pizza! On the way home we visited with Grammy Hanson and stopped for dinner at Auntie Katies.

I had a nice dinner last week with Heather and Marie who I used to work with at Brigham and Womens Hospital. They were great and we all drove an hour or so to meet in the middle. We went to a great little restaurant and had a wonderful time. It was so good to see old friends! We plan to do it more often. Thanks so much you guys! I really appreciate the support and companionship!

This week, Joyce and Tony came over with the kids for pizza. I enjoy the company and the kids love to have friends come over to play. Everyone had a nice time. Happy Birthday Megan!

This week was Dad's Birthday too! Katie came down from NH, and we met Gael for dinner. Saturday we went to a Memorial mass and to the cemetary. We brought some bright yellow roses that Dad would have loved. Katie was remembering how he would reach over to hold our hands in church. He held my hand all through Scotts funeral, and when we went to the cemetary on Fathers Day. I am so grateful that I had my Dad the first three months without Scott. I needed him.

Scott and Lauren got to go to Scotts favorite store, Home Depot, to the kids workshop where they built their own race car! The staff were very helpful and they received certificates of completion and pins that they can collect.

The kids are all good, and growing fast. I'm ready for spring so we can get out more. Today we went to lunch with Stephanies Mom to Wimpys. Thank Goodness they seem to have good restaurant manners, as Mommy loves to go out to eat! (And get out of the house!)

Thanks to all out earth angels who continue to take care of us. My neighbors have helped with snowblowing. Gordan has plowed for me, and even emptied mousetraps in the garage. Bob and Loli not only babysit "just because", but Bob did some washing machine repair work and emptied another mousetrap for me. (I try to plan, so a boy will be around-yuck.) And then of course there is the pizza which arrives once a month~always on the best day that I could have asked for such a treat! This time the microwave repair man was here and there was complete chaos! I think it was a life changing experience for him!! Thanks to all the babysitters and especially to Ruth and Tiffany who will sleep over so I can bring Scott to NH. now and then.

God Bless you all!
Love, Ellen and the kids.

Saturday, February 19, 2005 6:28 AM CST

Sunday, February 27, 2005 3:34PM CST
Hi, I have not heard any more about comparing the scans with Seans previous scans from NY. I'm still waiting for "official" word from Boston and New York. I'm also waiting to hear from a Urologist in Boston for an appointment.

Sean is over the fever/flu thing. Thankfully no one else got it. (Amazing!) Ellen



February 19, 2005 6:28 AM CST

Hello, Sorry it has taken so long for more news. Sean has been sick since Tuesday with a high fever. I took him to the Doctor Wednesday and they said it is a viral thing. I did check the urine for infection since he just had a procedure with a catheter on Monday, and it is OK. His MRI has been read and NO TUMOR can be found. I am still waiting for both Boston and NY to compare it with his old scans. His urine catecholamines are also within the normal limits. VMA is 11, (<13 normal), and HVA is 18.3, (<22 normal). He does still have kidney reflux and will have a Urology consult. Dr. LaQuaglia did tell me that this could be a problem and that he may need a surgery later to repair the ureter. His LDH is 438, (upper limit or normal is 295). They don't know why this is elevated but we will check it again in a few weeks. Also his Alk Phos-467 (upper limit of normal is 400.) So he will continue on prophylactic antibiotics, check some labs and with urology. That the residual tumor has regressed without further intervention is huge. This can be an agressive cancer and does not seem to follow any peticular set of rules! Please say a prayer for Josh, Stanton and Griffin and their families. All of these boys recently lost their battles with NB and for Jack and Chris who are struggling with it right now.

Scott has been to new dentist and has had quite a few fillings and needs some more. No more milk at night and fruit snacks! He has been very brave, thanks to a kind and gentle dentist who happens to be an old friend!

The girls are fine. They are growing like crazy! I think Heather will be the nurse in the family, she kisses the boo boo's and takes very good care of her baby dolls as well as her brothers and sisters and Mom. Kathleen seems to be getting into the Carpenter mode, working with Scott, when he lets her, and shares her fathers sense of humor with Sean.

Tiffany is fine and still enjoying her job at the Pizza Store as well as apartment life.

Back to Monday, Valentines Day...Besides the gift of Seans great reports, I had a few other treats. First on the way home Sean and I stopped for dinner at a nice restaurant on the water. He happened to be fussing as I was going by the exit. My Dad and I always stopped there on the way home from his appts at Dana Farber Cancer Institute. A few years ago I would not have dreamed of taking a 2yr. old out on Valentines Day to a nice restaurant at dinner time. Life is Short. Today was special. We walked in with him in his sweatpants still "drunk" from anesthesia. He was very well behaved and ate like a horse. He was a wonderful date. When I got home I discovered that I had flowers that were delivered by the kids. (Thank you to the cupid that arranged for this!!) We all got Valentines from Rose, my faithful babysitter, and I also got a beautiful Valentine from Tiffany.
I'm still missing Scott terribly and always will. Last year we did dinner and a movie and had a really good time!
We always had fun with the little hearts with the words on them. This game would go on for about 2 weeks.

Thanks so much for checking in on us and for all the support, encouragement and prayers. Please keep up with the prayers, as I need all I can get! :)

God Bless! Love, Ellen and the kids XOXO

Wednesday, February 16, 2005 1:31 AM CST

Hello, The Preliminary reading on Sean's MRI is that they CANNOT FIND the tumor!!! Urine and blood tests are pending! Thank you all so much for all your prayers. God Bless! Love, Ellen and the kids.

Sunday, February 13, 2005 12:26 AM EST

2/14-Preliminary results are all good. Thank you Papa, Poppie, Nana Doris, Aunt Stephanie and God for watching over my baby. Thanks for all the prayers. God Bless, Ellen


Hi, Happy Valentines Day to Everyone.
I didn't expect Valentines Day to be difficult for me, but just the thought of it brings up so many memories. It's been 9 months now since we have been without Scott. I think I am beginning to thaw some more, and I don't like it. I am very sad, and the "reality" of it all seems to be setting in. Of course the reality of Sean having Cancer also comes to the surface with scans on Monday. Please say a prayer for my Sean, for my family, and for me to remain strong. God Bless, Love, Ellen



Monday, February 7,2005 12:59AM CST

Hi, the good news is that the snow is beginning to melt. Its nice for skiing but not for my driveway! Thanks to Neil, Mark and Gordon for snow blowing and plowing and to Ruth, Alysa and friends for shoveling. We can finally make it around the circular drive which makes it much easier for me, the kids and the sitters.

I could not rent the timeshare in NH and so ended up taking Scott. We night skied with Uncle David and Sue and cousin Ashley. Next he took a lesson and I was able to take him on the chair lift. We were able to go to the top of the mountain. The weather was great and so we had a hot dog outside with views of snow capped Mt. Washington. He did really well with the skiing and I was anxious to get him going as Papa Scott and Grampy Bill excelled at skiing.

My Little Carpenter Scott was able to visit with friends Daniel and Maive and work 2 mornings at the “job site” with John and Lisa. He was able to jackhammer stone with John and cut and lay out tiles with Lisa. He cut his own tiles with the “tile saw”. When we left he told me that he thought the Lady who lives there is “really going to like my design.” He got wood and tiles to bring home from Lisa and more wood from both Stephen and Grammy. This all paid off when he used the wood this week to design and build me a bench where you can sit and you can even store your boots beneath it. He loves to work and I really appreciate everyone's time and efforts with that. He wants to do everything that Papa did.

Next we went skating at Nestlenook. We skated outside on a pond that goes under bridges. There are animals and horse drawn sleighs going by with jingle bells. We sat by the fire drinking hot cocoa. Next we went for Pizza at Shannon Door Pub and Mom was able to catch up with old friends. He had a really great time and some special time with just Mommy.

Sean's testing will all be done on Valentines Day. He has renal tests to check for reflux and obstruction, Blood work, Urine for catecholamines and the all important MRI to check on the residual tumor in and near his spine. It will probably take about a week to get results.

The kids have all been fussy and getting into mischief. Yesterday they threw all the potty chairs in the bathtub. I think they are working on more 2 yr. molars coming through. I cant’ wait to get them outside more to burn off some of this energy. They have shoveled my whole deck, but it doesn't seem to tire them out. Just Mommy.

Saturday I was able to go to the Friends for Life celebration. They raised 1.7 million dollars for Neuroblastoma last year. This money was used to fund a permanent research position for NB. Next they are working on funding for a NB lab at Dana Farber and bringing MIBG therapy to Boston.
I also found out that the Joe Cronin Memorial Fishing Tournament, right here in Osterville donated 20 percent of the money it raised into this fund. Its all Jimmy Fund, but this money goes toward Neuroblastoma which is grossly underfunded. It can be an aggressive cancer and the treatments are harsh. I didn't know about this last year and so am very excited to help in any way that I can this year! The date is August 12th. It was nice to see some of the other local folks that are also dealing with NB and to see Diane and her daughter Olivia. Olivia lost her sister Sophia (www.caringbridge.org/ma/sophiamarie) in December to Neuroblastoma. Please check out myfriendsforlife.com for more about local fundraising efforts for NB.

Last night I was able to sneak out for a bit to watch the game and see friends. I was home in time for Heather to get back up and I let Scott stay up late. We made a big deal of the “Big Game” and had a very nice time.

Thanks to all our angels on earth for taking care of us in so many ways. I could not be doing what I am without all the help that I am getting. Please continue to pray for Sean and our family. I am still very sad and I imagine that I always will be. Its very difficult to think of all that Papa Scott is missing. We all miss him very much. Even the babies talk about him all the time. I wonder if they don’t see/feel him around. I hope so.

God Bless and thanks for checking in on us. Please don’t forget to sign the guest book. Love, Ellen

Tuesday, January 25, 2005 3:51 AM CST

Blizzard 2005~Cape Cod!

Hi Friends, We survived the Blizzard. The power was off and on, but mostly on, Thanks God! (Thats huge with all these kids and no TV.) I'd say we got about 3 feet, but there was so much blowing and drifting its hard to say. Its easily the most I have ever seen on Cape Cod! Scott and I went out on snow shoes, which I actually needed to get out to the road. After the kids went to bed I shoveled for about an hour in front of the car. Today at nap time I was back at it. I was able to get the car out. I'm so glad I traded all the cars for the 4 wh drive. Someone from Peacock and Crosby and Friends is planning to plow. They came the first night but havent' been back yet~I saw that Osterville is buried with 6 ft drifts in front of the shops which were mostly closed, so I don't expect they will get back to us soon. I was able to shovel out all the doorways and room for the car. I still need to be plowed as its a long trip to the car with the 4 kids. I'm hoping it gets done before the next snow, but we will make due if not. Thanks so much guys for thinking of us. Ruth and Alysa and her friends helped with baby-sitting and shoveling for a few hours today. Thanks to our wonderful neighbors, Dick and Sylvia who did a Stop and Shop run for us today to get some milk as well as some baby-sitting so I could recruit my shoveling help!

We are expecting another inch or 2 today and have a winter storm watch for Wednesday for another 5-6 inches with heavy winds and Blizzard conditions again.

Heather seems to be feeling better, so I think it was just those painful teeth. Speaking of teeth, Seans rossy cheeks on his right side at least, is due to his sister Kathleen taking a rather large "bite". Look again at the photo above! I'm sure she suffered more than he did with the punishment for that one!

I've posted some new photos.

No school again tomorrow~and no sitters planned, but I think I'll work on that! Or at least load them up and go for a ride. I better stock back up on milk/diapers for Wednesday! What a winter, so un-like Cape Cod.

Thanks to everyone who called and checked on us! Other than my sore back from lugging wood and shoveling, we are fine. Scott even got "Sparkling Juice" to celebrate the Blizzard and the day that Mommy and Papa met. We had pizza from his favorite pizza store, Pizza One and Subs Two. He was going to make me a cake, but we didn't get to that. Maybe in the morning.

Who would have thought on a blind date, where we ended up at the bowling alley in Fryeburg Maine 8 yrs. ago today, that I'd be where I am today, and without Scott. Wow. He would have loved the storm and been out all night with the snow blower. I'd have been making the coffee and stew and telling him to come back in! God Bless you Papa, we wish you were here! We love you!

God Bless all of you! Thanks for all the thoughts and prayers and for taking care of us.

God Bless all the kids fighting NB and all the grownups fighting to find a cure!

Love, Ellen

Saturday, January 22, 2005 1:16 AM CST

Hello~
Everyone seems to be pretty healthy for the moment. The little ones take turns with some fussiness re: teething. I see lots of 2 yr. molars popping up. Today was Heathers turn. I'm just hoping she doesn't develop an ear infection with the threat of a Blizzard brewing.

We are waiting for Seans Renal scans/studies and MRI to be scheduled. The MRI is scheduled for March 7th, but I am trying to get everything at once. I am hoping he can stop the prophylactic antibiotics he has been on for kidney reflux. Of course I am always anxious to have the MRI results and check on the status of the residual tumor. He will also have blood work and urine tests repeated. He seems to be fine and eats like a horse!

We have a Blizzard looming with predictions conservatively of 12+ inches of snow for tomorrow night. I used to be all excited about storms. Without Scott I'm feeling pretty anxious. I have a generator that I don't know how to use. He was in the process of wiring it directly to the house. He would be right out there with the snow blower at the first sign of snow. The whole idea has completely lost the "romance". I'm a little nervous of being home alone in the dark w/fussy 2 yr. olds and a bored 5 yr. old for who knows how long. Hopefully, everyone will stay healthy and I can contain them enough to keep anyone from getting hurt. I'm hoping we don't lose power. If we do, we will of course make the best of it. I like the fireplace, but don't trust the kids near it at this age. Sometimes I light it right before I put them to bed, but I'd be nervous leaving it lit for any length of time...like if I have to leave the room for even a minute! Snow always makes me think of Scott. Monday is the anniversary of the day we met!

Scott has been going skating with pre-school. He did not want to continue his lessons, but I can really see him making progress everytime we go with school. I'm still hoping I can convince him to do his swimming lessons. Especially since we live on a pond!

The new front yard fence did come this week. Thank you Pro-fence in S. Dennis and Angels Hope for arranging for this. It looks great and I was very impressed with the guys who came to install it and the beautiful job that they did!
Scott is already utilizing it. He shovels the snow against it and is working on a snow fort. He should have plenty of snow to work with after tomorrow.

Thanks for everyones continued prayers and support.
Please don't forget to sign the guestbook.
God Bless, Love, Ellen and the kids

Monday, January 10, 2005 9:15 PM CST

Hi Friends, It has been 8 months today without my best friend and husband Scott. It has been the most difficult and trying period of my life. Still I thank God that I was able to have him in my life. I could never have met him. I had the best 7 yrs. of my life with him and I think he felt the same-despite all the stressors we had going on which were pretty huge! I thank God everyday for the kids, and that Sean is doing OK. I thank God everyday for all of you. I could not be where I am, and able to care for the kids without the tremendous amount of love and support that we have received from friends, neighbors, the community, and many, many caring strangers. God Bless each of you and your families, and May He Bless you with a safe, happy, healthy New Year! It is very hard to know I am going into 2005 without some of my main support people, Scott, Dad, Mom, Stephanie, her Dad-Ubba. Thank goodness for my friends who have stuck with me through it all and often put my family before even their own. You know who you are! God Bless you! I love you! Ellen



Saturday, Janurary 8, 2005 317am CST

HAPPY NEW YEAR!

Hello. We finally got some test results back for Sean. His LDH is slightly elevated as well as the HVA. This time was a new lab though so we will repeat these tests again in a few weeks. As many of you know, certain foods can effect the urine test for catecholamines and it is only a smidge elevated. [VMA 10.3 (1-12.9), HVA 15.8 (0-13.5) LDH-371 (110-295)]. He is looking and acting fine, so I won't worry yet. His next MRI of the spine is scheduled for March 7th. This is the test that gives us the most info at this point.

Little Scott and I went to NH for Christmas at Grammys. Tiffany met us there. I could not take all the kids by myself. Its too crazy and the girls were still getting over being sick. Everyone is healthy at the moment. Scott had a really nice time. We visited with lots of friends and he even got to build his own tool box with Stephen. This was really cool, as he didn't know we were coming over and \he already had the pieces all cut out! He also got to "work" outside with his uncles cutting down trees and burning. He loves to "work".

Grammy found Papa Scotts Firehat and gave it to us. Sean and Scott both tried it on. Scott got a big kick out of seeing his name on the hat.

Thanks again for all the elves helping us through the holidays. (The kids are still opening gifts and they love it!) It also helps me to give them a few at a time to play with.

So many continue to help and support us in so many ways. I'm still very much on One day at a time. Somedays I am completely overwhelmed. Some days I am sad. Thanks for all your help to keep us going.

Please sign the guestbook so that we know you were here checking on us. It means alot.

Please continue to pray for Sean and all the children who continue to fight to overcome neuroblastoma. Please continue to pray for our family.

God Bless You and Happy New Year!
Ellen and the kids.

Sunday, January 02, 2005 9:59 PM CST

Hi, Just a note to ask for a prayer for Ubba (Vincent Hostetter), and his family. He passed away this morning. He had been sick and it is a blessing that he is no longer suffering. He is my best friends dad. (She passed away in March). Sean has one more angel watching out for him from Heaven. God Bless you Ubba. We love you~~Ellen and the kids.


Wednesday, December 29, 2004 254 AM

Hi Everyone, I hope you all had a Merry Christmas! Especially all the kids!

We had a lot of fun. We started out with a pizza party on Thursday with our friends from Keeping Pace with Multiple Miracles. They delivered tons of gifts from a very generous family in Boston. It was really fun, esp to see the "Big" triplets. Christmas Eve started out with some very nice Elves coming to visit. Our next door neighbors brought gifts for me and all the kids. I even got new really cozy jammies in my basket that were so cool, as everyone else had new Christmas jammies too. My friend Katie and her family went above the call of duty and came over to assemble the powerwheels dump truck that my sisters got for the kids. I would not have been able to get it out of the box alone! They got to step "40" before going off to church! I had no idea it was that complex! Some folks who Papa Scott worked for about 4 years ago came over. They all wore Santa hats and came bearing gifts. I got some really special photos from when Scott was working at their house. Next my friend Lisa, also a new widow, came by with her 3 kids. Her youngest is 18 months old. It was fun to watch him interact with my tribe, and so very thoughtful of her to think of us and come by to make sure that we are OK. The kids loved all the excitement and people.

We tracked Santa on Norad.com and saw that he had already crossed the Atlantic. We quickly sprinkled raindeer food outside and set out a plate for Santa. Scott went right to bed!

Next I started to do my elfin magic, when suddenly there arose such a clatter......Both Kathleen and Heather started vomiting relentlessly! This went on from about 8pm till 2am. I had to call my sister Gael and my neice Caitlin for help. Everyone settled down and we got the job done!

Well Santa found us all right! I'm still opening packages. The kids had fun despite the girls still being sick. We didn't get to church, but we said some extra prayers and the little ones were very cute learning to bless themselves. Tiffany was a big help and cooked the dinner and cleaned up! I never would have been able to eat. She also stayed so I could go to the cemetary for a quick visit! We cancelled our plans to go to Daphnes due to illness and stayed home in our new jammies.

Sunday, the crying wouldn't stop and fevers had developed. No sitters to be found, so I loaded up the family and off to the doctors we went. Heather has a double ear infection and Kathleen a single. Little Scott was a big help managing Sean while I tended to the girls in the Dr.'s office. It was a very quick visit with the 4 kids on the loose! Kathleen also threw up when we got there, getting us some quick attention!

Monday-we got a foot of snow. Scott was thrilled as he has been complaining that winter is late this year and he figured Santa would have to come back! I'm glad I traded all the cars/truck and got the Suburban. I was able to get right out. My driveway is kinda long to shovel. Scott used to do it with the snow blower which I sold at the yard sale. I just drove in and out a bunch of times to pack it down before it froze again! So far, so good.

The girls are still sick, which is why I am awake tonight. Mostly Heather tonight. She has just gone back to sleep.
Scott is still on antibiotics from last week and Sean seems miraculously fine.

Today we were able to obtain a new urine specimen for Sean. Hopefully things will go smoothly this time and I will get good results. Of course it takes a while and there is another holiday, so I probably won't have answers until next week.

Sadly, Trey and Sophia have lost their battles with neuroblastoma and spent Christmas in Heaven with Jesus this year. I was not able to get to the wake for Sophia tonight due to still fussing kids and bad roads. I am planning on going to the funeral in the am. I think there have been 8 new angels with neuroblastoma since 11/01. Please say a prayer for these little angels and for all the kids fighting so hard for their lives.

I'm planning on taking Little Scott to "Christmas in NH" to see Grammie and the relatives on Friday if the weather and the kids cooperate. I am planning of seeing some of Papa Scotts buddies while I am there too. I miss him so much, and still can't believe this is all real. I'm sure I'm still in shock. Denial is working for the moment. Even the snow is hard. He loved the snow! He loved skiing! He loved the snowblower! (Not to mention that I always had a clear driveway!) We had a little Christmas tree at the cemetary. We rescued it before the snow. I'm hoping to re-pot it and keep it alive until Spring when I can plant it. I am not the gardener in the family, Scott was, so we will see how that turns out.

Please say a prayer for Ubba, (Stephanie and Daphnes Dad), who is back in the hospital again.

Thanks to everyone who is thinking of us and helping us this holiday season. Special thanks to Most (Mothers of Super Twins) and KPMM (Keeping Pace with Multiple Miracles). Thanks to all the babysitters helping me with the kids. I could never do all this without all the help that I am getting. I so appreciate folks thinking of us at this busy time of year. God Bless you all. I'm including a poem from Sophias web page. Merry Christmas!
Love, Ellen and the kids.



I see the countless Christmas trees around the world below.
With tiny lights, like Heaven's stars, reflecting on the snow.
The sight is so spectacular, please wipe away that tear;
For I am spending Christmas with Jesus Christ this year.

I hear the many Christmas songs that people hold so dear.
But the sounds of music can't compare with the Christmas choir up here.
I have no words to tell you the joy their voices bring.
For it is beyond description to hear the angels sing.

I know how much you miss me, I see the pain inside your heart.
But I am not so far away, we really aren't apart.
I cannot tell you of the splendor or the peace inside this place
Can you imagine Christmas with our Savior, face to face?

I will ask him to light your spirit as I tell him of your love.
So then pray for one another as you lift your eyes above.
So be happy for me, dear ones, you know I hold you dear.
And be glad I'm spending Christmas with Jesus Christ this year.

I sent you each a special gift, from my heavenly home above.
I sent you each a memory of my undying love.
After all, love is a gift more precious than pure gold.
It was always most important in the stories Jesus told.

Please love and keep each other, as my Father said to do.
For I can't count the blessing or love he has for each of you.
So have a Merry Christmas and wipe away that tear.
Remember, I am spending Christmas with Jesus Christ this year.

Friday, December 24, 2004 12:02 AM CST

Please say a prayer for Little Sophia Marie. She gained her angel wings last night after a valient fight! God Bless her and her family!
http://www.caringbridge.org/ma/sophiamarie


Wednesday, December 22, 2004 3:43 AM

Hello
Its beginning to look a bit like Christmas around here. The kids are starting to "get it" and are all getting excited. We celebrated with my sister Katie and her family this week already. I got the most beautiful locket with a photo of the 4 little kids in it. Its really cool.

Scott A. has been sick w/cough and a touch of fever. He is now on antibiotics and always loves to get to stay home with Mommy and the babies. Heather has chronic stuffiness and wakes up most nights. She will prob have her adenoids and maybe tonsils out next year. Kathleen is fine right now.

Sean is still battling to get a urine specimen to the lab. We got one delivered to Falmouth, but these local labs are unfamiliar with the test and didn't "correct the ph" first, and so we have to start over again. Its tricky to obtain the specimen when he only pees about once every 2 days in the potty and I also have to have a sitter at the time so I can bring the specimen in. I'm hoping the lab with figure all this out as I think we will have many more specimens in the future. The tumor secretes catecholamines, so that can be an indication of if we are getting into trouble. I am anxious of course to get it done. The results ususally take about a week. His LDH is slightly elevated. This is another "marker" sometimes used. It is a different lab and he is older now etc. so we will keep an eye on it. Santa may well be bringing 3 new potty chairs to the Hanson household this year. The children have been very, very good!
The good news is that the port-a-cath site is healing very well.

Tiffany is still loving work, her apt, boys, and generally having a good time.

I miss Scott of course, everyday. Shopping is hard, as is wrapping and hiding presents and not having a second pair of loving hands to help. Sick kids, kids up in the night etc. Still when I snuck out to the car tonight to get the goods to wrap, the sky was so clear and there were millions of stars. I stopped for a minute and thought of him and my other angels. Dad, Stephanie, My Mom, Grandparents. I miss them all. I hope they are watching over us, esp my Sean.


Please say a prayer for our friend Sophia Marie. She has relapsed Neuroblastoma and is having a difficult time after an allogenic bone marrow transplant from her Dad. She is from Boston. Papa Scott and I met her Mom last year and her Mom Diane was in Chicago with Little Scott and I last summer. You can check on her at http://www.caringbridge.org/ma/sophiamarie

Thank you to all the elves making Christmas magic a possibility at the Hanson household this year!

Thanks to all of you that have gotten me through this year.
People have helped in so many ways, and continue to amaze me.

Special thanks to Joyce and Tony who always go above and beyond the call of duty despite their own teen and young twin boys!

God Bless you~Everyone~

Love, Ellen and the kids.
Tiff, Scott A., Kathleen, Sean and Heather.

Friday, December 17, 2004 2:15AM CST

UPDATE: Sean had his portacath removed on Monday. He did fine with the procedure and had very little discomfort. They were not able to obtain the urine sample, (big mistake as now I have to get one and bring it to the lab etc.) Please pray for good results and that we never need the use of a portacath again! Thanks again for all the thoughts and prayers.

Please say a prayer for our friend Sophia Marie. She has relapsed Neuroblastoma and is having a difficult time after an allogenic bone marrow transplant from her Dad. She is from Boston. Papa Scott and I met her Mom last year and her Mom Diane was in Chicago with Little Scott and I last summer. You can check on her at http://www.caringbridge.org/ma/sophiamarie

God Bless, Love, Ellen


Friday December 10, 2004
Hello
Today marks 7 months since we are without Papa Scott. The babies are growing and changing so fast. I still can't believe its all real. I miss him so much!! Scott does too. He makes pictures daily of "Me and Papa working". He is having trouble going to school and missing Mommy when he is there. Just normal adjusting I guess. This weekend Little Scott and I are enjoying some relaxation at a hotel thanks to Angels Hope and some great babysitting. Scott and I went in the pool and hot tub tonight and enjoyed a pizza party. Its a bit hard on me as we went last year with Papa and all the kids. Tomorrow there is a magic show and a Christmas party on Sunday with Santa!

Monday Sean and I will go to Boston. Apparently I misunderstood the plan. He will not have any scans until March. Monday he will have his port-a-cath removed and a urine test for catecholamines and check-up. He could have had the port out 2 months ago, but I thought he was having scans and anesthesia on Monday and they could do it all at once. They rescheduled it but no one told me that he wasn't having scans until today. I guess its good news that they don't feel he needs scans until then but it seems pretty far away. I don't like the confusion either. Its hard to change hospitals, everyone does things differently. Anyway, he looks and feels fine. He has Papa Scotts sense of humor and makes me laugh.

Kathleen and Heather are both doing great as well. They are enjoying their new room and very busy getting ready for Christmas. I took all the kids to see Christmas lights and Santa with Jenn last week. It was a cold night, but it is a joy to see the wonder in their eyes!

Tiff is enjoying her apartment, job and friends. She had some car trouble, but has lots of people who care about her helping her out.

Joyce and Tony have done wonders here this week helping me! Joyce helped me find a spot for the tree, and she and Tony worked for hours today arranging my garage. Little Scott and I have learned all about Mouse traps after learning that we had a lot of company that we didn't know about in the garage!

Thanks to all our sitters and volunteers and Christmas Elves. I could not do Christmas without all the help I am getting from near and far! (Still not sure I can pull it all off in time!)

Sunday is Stephanies birthday-Seans Godmother. She will be celebrating in Heaven this year. Her Dad is still in and out of the hospital. Please say a prayer for him.

Thanks to my friends who are still around and taking care of us!

God Bless Papa! Please watch over us! Bless our friends and family!

God Bless You! Please don't forget to sign the guestbook so that we know that you were here!

Hope your all having a Happy Holiday Season!

Love, Ellen and the kids.

Friday, December 3, 2004 2:55 AM CST

Hello, I got through my Birthday (which Scott informed me was boring), and Thanksgiving. Gael, Gary, Caitlin and Christa came over and we had a nice time during dinner. Then we had to clean up A LOT, as the babies were having a lot of fun in the cribs during dinner too.

December is Here!
"Welcome", as Scott would say to the "First day of Christmas!"

He is getting very excited as he opens the little doors on the advent calendars.

I went to my class reunion in Belmont last week (even though I graduated at Barnstable.) It was great to see old friends that I had not see in years! It was also fun to drive through town and see how things, really haven't changed that much. I also went to the cemetery where all my grandparents are some other relatives are buried and said my Christmas Prayers.

Sean is due to go up to DFCI/Childrens for a checkup on December 13th. I believe they will take out his portacath after the procedure. That means we will have to find an IV "the old fashioned way", for the next few scans. Yikes, I really hate that part, searching around for a spot while a scared baby screams and is being held down. We do what we have to do and continue to pray for good results. I always get nervous just before the scans, and of couse its Christmas which is a stressful time anyway! I will continue to have the reports and xrays sent to NY to be read at Sloan if thats all possible. (I think it is.)

Scott had a big day!
He was invited to Cape Cod Hospital by his new friends at Linbeck-Ward, and the Carpenters Union-Jim to watch the demolition of a building. Papa Scott wokred here with these guys. They presented him with his very own hardhat, Just like Papas-it even has his name on it! We took lots of pictures of the "claw" removing pieces of the building. He was very excited and even put on his hard hat over his hood like Jim had showed him how to do, (when nobody was looking). The next day he didn't want to go to school but I reminded him about the hardhat. He was dressed and ready in an instant. He wore his hardhat and showed all "the guys" his pictures. He was very proud and excited! Thanks Ward and Jim for providing such and exciting "Boys Day!"

The kids are all taking turns being fussy, throwing up, runny noses, ear infection~The usual winter time fun!!
I have moved the girls into their own room, and Sean to Scotts room. Although Scott is still sleeping in Mommys bed. Sean sleeps like a big Bear. The girls are adjusting slowly I'd say.

I am working on Christmas at present. Which as you know is pretty busy. The wreaths are up. Tree still needs to be obtainded. We will be staying home. My sister Katie will come a few days before to exchange gifts and have some fun with Gael and I. I may take Scott A. to NH to see Grammie and the cousins Jan 1st. Not sure yet as that involves getting sitters lined up. Its too much to bring all the kids alone, and they cry in the car etc. Its just too much for them. Maybe we can even sneak over to a ski mnt for 1/2day. We will see.

My friend Scott arranged for a bunch of trees to be removed so we are now ready for the front yard fence. We also can get some dirt started in the back yard for next years lawn, I hope. Thanks Scott!

My friend Doug game over to paint the girls room, he also got my "way too high up" gutters cleaned out at the same time. And changed the front hall lightbulbs, I was down to 2 working out of 8! Thanks Doug!

And then there is my friend Paul who came over and unscrewed all the cribs and moved them for me! Thanks Paul!

Boy, its nice to have friends.
We are so lucky that we have people who love us and are taking care of us in so many ways. We still have some churchladies and another couple of families that offer to come and help with kids, feedings, diapers, or just playing!
It is a huge help!! We are very lucky to have such great community support.

Please say a prayer this week for Jack Thorne,Carl Robinson and Eric Sonsini who have all lost their battles with Neuroblastoma and have passed on to their next life in Heaven with Jesus and all the other Angels. God Bless their Families.
I met Carl and his parents briefly in Chicago last summer, and Eric is from Massachusetts.

Please say a prayer for Stephanies Dad-Ubba we call him. He is still in the Rehab trying to gain some strength.

Please pray for Sean, that he continues to have significantly improved results on his scans and tests on the 13th of December.

Papa, Dad, Mom, Steph-please watch over me and all out babies, and help me to remain strong. I miss you all so much, and wish you were here with me.

Thanks again to all the folks who help to keep me going, day after day. Laundry, meals, babsitting, shopping, Listening, Sharing a meal, taking me to the movies. Etc, Etc. You guys are the best!

Happy Holiday Season!
God Bless you!
Love, Ellen Hanson
and the kids.

Monday, November 22, 2004 10:34 PM CST

HAPPY THANKSGIVING TO YOU ALL!!



I am Thankful that I had Scott in my life to 7 1/2 years. I loved him. He was my best friend. I am privileged to be the mother of 4 of his beautiful children. We went a lot of places and did a lot of things and had a lot of really good times together. He could Always make me laugh. He was my gift, and the children were his gift to me.

I am thankful that Sean is doing so well. His tumor appears to continue to be regressing on its own with no treatment other than the surgery on Oct. 2003. He continues to be monitored in boston every 3 months. He will probably have his portacath removed December 13th.

I am thankful that I had my Daddy for the first 3 months after losing Scott, to be here with me and support me. I am thankful that he did not suffer, and had all his family with him when he passed.

I am thankful for friends new and old, who have stood by me. Joyce, Jenn, Libby, Daphne, Lorel and Alysa, and Ruth. I am thankful for my guy friends who are here when I need them. Doug, Whitey, Paul, Scott, Tony. I am thankful for the carpenters, The local 624 union guys and Rick Anderson, the Peacock and Crosby guys, the guys from Linbeck-Ward, Chris, Jim and Cape Cod and Falmouth Hospitals for helping me out with the house, and keeping an eye on Little Scott.

I am thankful for acquaintances and strangers thinking of us, and caring for us, on a continuous basis. And for all the folks that have helped us along the way. There are far too many to name.

I am so thankful for everyone from Wequaquet Lake Yacht Club, and Peoples Choice Mortgage Company for arranging for the 2 very successful fundraisers that have happened this year. For all the folks who attended, as well as all the folks who contributed.

I am thankful to the people of the Osterville Baptist Church, the Osterville Methodist Church and Our Lady of Victory Catholic Church in Centerville for all of the things that you do for the children and me. Also for the folks involved in the Alex's Lemonade stands and promoting awareness for Neuroblastoma and pediatric cancer in general.

I am thankful for my brother and sisters-Gael, Brian and Katie and their families. I am thankful for Scotts family.

I am thankful for my neuroblastoma list-serv internet friends, some of whom Scott and I met in Chicago for being my online support group/friends and for all the medical information and support that I receive from them.

I am thankful to Stephanie's family, Skip and El, Daphne, Lorel, Alysa, for all that they do for me. Please say a prayer for Stephs father Skip who is back in the hospital tonight.

I am thankful to the annonymous folks who are keeping a watchful eye on us, and making sure that we truly are OK.

There are no words to express my gratitude. I am very behind in thank you notes, but please know that no deed goes unnoticed. Large or Small. I love you all, and wish you all a Thanksgiving full of blessings as deep as mine. As Dad would say, “I have friends who love me, and kids who love me, I am Blessed!”

Thanks for listening!

God Bess Each of you and your families,
Sincerely, Ellen Hanson
Tiffany, Scott A., Kathleen, Sean and Heather

Monday, November 8, 2004 2:21 AM CST

Hello Friends!
The silent auction went very well. It was really fun. There was great entertainment, and food all night. A good location, and a really fun group of people! A lot of them I had never met and so many spoke to me and introduced themselves. It was great to see some union carpenters and some of the guys that worked with Scott at the hospitals. Some of these guys are the same ones that donated their time, and lots of it at my house. My sisters and some of my close friends were there too. Tiffany and her roommate Sarah came and really looked like they enjoyed a night out.

It is amazing to see all the beautiful things that were donated. Everything looked so nice. And there were all sorts of things to be auctioned. They certainly had something for everyone. There were doorprizes and raffles.

Thanks to all the folks at Peoples Choice Mortgage and all the others who worked so hard to put this all together. So many volunteered their time and efforts, as well as their talents. Thank you to our friends new and old for coming, for purchasing items, for donating items. Thank you all for your time-taken from your own busy lives.

I am still in awe of how people are taking care of Sean and my family. I don't know what I would do without them. I worry about Sean and I miss Scott terribly. I am definitely not up to par. It is such a comfort to know that people care. That people have not forgotten and are here for us. It was like a great celebration of hope. People really are good! It warms my soul. All those little hugs really add up! Thank you, Thank you, Thank you!

Please say a prayer for my friend David and his family. He lost his life this week. He also leaves a wife and a 2yr.old, his Mom and sister and brother. Also for my best friend Stephanie's Dad. (Steph passed in March) He isn't well and has been in the hospital quite a bit.

I went to the Memorial Mass today at our Church. It is pretty unsettling to see the names of those so close to me listed on the back with others who have passed this year.
There are just to many who are close to my heart. Stephanie, My Scott, My Dad, and a few others that I knew. I put all their names in the Book of Rememberance, so that they will be remembered in Prayer in the month of November.
Then I lit candles for each of them and for my Mom and Garys Dad.

Scott went to a birthday party today. The babies had some more fun playing in the leaves. Thats one good thing that comes with not raking!

Thanks to all my sitters, so I can get out and go to functions and church and do what needs to be done.

God Bless you all! And thank you!
Love, Ellen, Tiff, Scott A., Kathleen, Sean and Heather.

Please sign the guestbook, I so look forward to seeing who was here! Happy November! Happy Birthday to Grammy and to Kathleens GodMother Lisa.

Saturday, October 30, 2004 0:14 AM CDT

Hello, We have been very busy getting ready for Halloween. Sean will be a bunny with his sisters unless Scott can convince him to be a monster-frankenstein like himself. I kept both options open, so I will have to let you know how this turns out! Last year at this time Sean and I were just arriving home from his surgery in NY after 3 weeks. Scott came home to be with the kids after 2 weeks. On Halloween we went to Mass General and just made it home in time to trick or treat. Papa had the scallops/bacon, shrimp, kids and costumes all ready to go. We always did just our street and then came home to a fire and family and friends. I will be missing Scott (Papa) and Poppie this year, but I think I will continue some of our traditions as well as have to create some new ones.

We have been reading Halloween books and the little ones are starting to figure it out. It is so much fun to watch their little eyes when they see the costumes. When I take out the bunny suits, they all start hopping.

Scott is taking skating lessons and is "letting go" of Mommy a bit more. Bit by Bit. He had Halloween parties at school today and yesterday. Yesterday I walked over with the babies all with duck hats on and quacking! Scott got out of School early, after his parade and rode his bike home with us. Last year I missed all that. I am reminded of Scott E. (Papa) constantly. He used to get home early somedays and if we were not there, he would hop on his bike and ride over and surprise us!

Tiffany and I went to dinner the other night at one of Poppies favorite places. It was great to get out with her and be able to talk without kids all around us. She is doing OK. Still liking her job. Missing her friends who are at school.

Alexs Lemonade Update: Alexs stand will reach the one million dollar goal that had been set for this year. Sadly Alex became an Angel due to neuroblastoma in August. Thanks to everyone who helped or contributed to all the local stands to benefit Pediatric Cancer Research.

***********************************************************************
The "Lending Hands" Auction for the benefit of the Hanson Children's Fund is now scheduled for THIS FRIDAY NIGHT, Nov 5 at Ballymeade Country Club in North Falmouth from 7:00pm to 11:00pm. This date was changed, so check your calendars. They have a great band, North Shore Acappella lined up who have things like the TJ Maxx jingle to their credit, amongst much other acclaim. Check them out at nsasingers.com. Tickets are $25.00 and will include hors d’oeuvres with a silent auction and cash bar. Tickets are available now from Ben Caswell- Tel: (508) 790-2001 ext 12. Please get them early so Ben can get a head count. It sounds like it will really be a fun night! Thank you to Ben and the folks at Peoples Choice Mortgage, and those of you who have already bought tickets or donated auction items!
***********************************************************************

Thanks to all my Earthly angels taking care of us. Babysitters, Volunteers, Friends and Strangers.

Please continue to pray for Sean and our family, and for people suffering with cancer, especially the children.

God Bless you all!
Love Ellen and the kids.
XOXO

Have a Happy and Safe Halloween!

Friday, October 22, 2004 1:43 AM CDT

Hi, We have recovered from the birthdays, and I've added a few photos. On Thursday Alex and Daphne took us out to Spaghetti night. Nana, Lorel, Alyssa and Alicia were there with a party all set up and waiting for us. The kids had fun and got to run around on the dance floor in their new sneakers! On Friday they had a pizza party. They ran and played pin the tail on the donkey and ate and ran some more and generally had a wonderful time. There were loads of balloons and gifts. Sean loves his new voice activated puppy. The grown-ups had a champagne toast to celebrate Seans good test results in New York, once again "Improved". It has been one year since diagnosis. We will continue now to follow-up in Boston. His next check-up will be Dec. 13th.

We had a playdate with triplet friends Adam, Ben, Kurt and big brother Will. It was so cute to watch the 6 little ones enjoying some PB&J. The big boys had to "work" at the "big hole" and didn't really stop for lunch.

All the kids got their flu shots. Apparently I forgot to get 15 and 18 month checkups, Oops! Now we are catching up on shots and everyone is a bit fussy with bruised thighs. We also had conjunctivitis go through the house including me. The kids were fine, but I was wiped out for a couple of days.

Tiffany and Sarah are still loving their apartment and Life at Sweet Tomatoes. What a location they have in downtown Osterville.

Today we were able to consolidate vehicles and are down from three to one. We got a Suburban which is much bigger. I haven't tried the stroller yet, but I am sure it will fit. It should be a happy time, but it was really hard for me to part with the Camry which I had just bought when I met Scott, and the Odyssey. We had so many memories there. I guess it is all part of moving on and it needed to be done. Scott wanted the Suburban-I didn't even know what one was. It just makes me very sad. But I'm very sad and think of him everyday. I miss him so much.

*********************************************************
The "Lending Hands" Auction for the benefit of the Hanson Children's Fund is now scheduled for Friday Nov 5 at Ballymeade Country Club in North Falmouth from 7:00pm to 11:00pm. This date was changed, so check your calendars. They have a great band, North Shore Acappella lined up who have things like the TJ Maxx jingle to their credit, amongst much other acclaim. Check them out at nsasingers.com. Tickets are $25.00 and will include hors d’oeuvres with a silent auction and cash bar. Tickets are available now from Ben Caswell- Tel: (508) 790-2001 ext 12. Please get them early so Ben can get a head count.
**********************************************
Thanks again to all our friends, neighbors, and especially to all the strangers taking care of us. We still have some meals delivered, friends dropping in to help with baths and bedtime, or just stopping by to play with the kids. Jim from the Carpenters Union made a special trip just to "work" with Little Scott and let him hammer in some shingles on his "clubhouse". I really appreciate all the support and love and it really is what gets me through each day.

Please sign the guestbook, so that I know you were here and thinking of us. I really appreciate all the notes and it won't be long before Scott can read them to Sean and the Girls.

Scott is really loving school and it is so good for him to have the structure and a safe loving environment right now. I love Fair Acres and he does too. The little kids get to take turns coming with us in the morning and they fight over who gets to go to "school". So Cute-hope it lasts through college.

Please continue to pray for Sean, for our family and for kids with cancer-especially our neuroblastoma friends Sophia and Joey who are having difficult treatments right now.

As Dad would say, "I have friends who love me, I have kids who love me, I am Blessed!"

God Bless, Love, Ellen

Friday, October 8, 2004

HAPPY 2ND BIRTHDAY TO KATHLEEN, SEAN AND HEATHER HANSON!! YOU ARE THE MOST ADORABLE KIDS ANYONE COULD WISH FOR. YOUR BROTHER SCOTT LOVES YOU SO MUCH AND TEACHES YOU TO "ATTACK" HIM, AND HOW TO "WORK". TIFFANY, YOUR BIG SISTER IS VERY PROUD OF YOU AND SHOWS YOU OFF TO HER FRIENDS. MOMMY LOVES YOU SO MUCH AND THINKS YOU ARE MORE BEAUTIFUL AND HANDSOME EVERYDAY! PAPA IS WATCHING OVER ALL OF US FROM HEAVEN. I'M SURE HE IS SO PROUD OF ALL OF YOU AND HUGGING YOU WITH LOVE. POPPIE IS UP IN HEAVEN TOO AND SHOWING YOUR PICTURES TO ALL THE OTHER ANGELS. AUNT STEPHANIE IS HAVING A PARTY IN HEAVEN LIKE NO OTHER TO CELEBRATE YOUR BIRTHDAY AND ALSO HER GODSON SEANS TEST RESULTS AT SLOAN ON MONDAY. IMPROVED!! GOD BLESS ALL MY ANGELS AND BABIES. TONIGHT WE HAVE A PIZZA PARTY! LOVE, ELLEN


Monday, October 4, 2004 8:37 PM CDT
GREAT NEWS!!!

Seans MRI and Renal Scan from this morning are BOTH, improved!!

We had a beautiful day, a fabulous flight to and from LaGuardia and a pleasant drive to and from Manhattan.

Thanks so much to the Special people making these arrangements and taking care of us once again.

I cannot say enough about all the staff at the RMH and at Sloan Kettering!

We are planning to continue our follow-up at DFCI/Childrens Hosp in Boston.

I am so pleased to have nothing but good things to say about our trip to NY today. If you read my previous journal entries you will know why this seems so extraordinary.

Thanks to Rose, Ruth, Mary and Roseanne for helping with the kids.

Thanks for all the continued support, friendship and prayers for Sean and My family. I really appreciate everyones help!

Don't forget to view the photos, I change them quiet a bit, and please sign the guestbook so we know you were here. It really means a lot to us.

God Bless, Love, Ellen-Mom to Tiff, Scott A., Kathleen, Sean and Heather-Now 2 years-Wow!


Please take a minute to read this essay written by a young women with Neuroblastoma for a scholarship. Its amazing. It is a letter she wrote to herself from a friend she met in clinic who lost her battle to cancer a year ago.


The Letter I Would Like to Have Received from a Friend or Relative During My Illness
By Anna O’Connor


To my dearest Anna Banana,

As I lay here about to go into my second stem cell transplant, I think of you my friend. I remember the first time I met you. You were a bald, meek, scraggly-looking teen who was curled up in a chair waiting for yet another chemotherapy to begin. I was thrilled to see you! You were the first fellow High School senior I had met since my relapse. I went over and introduced myself to you. I recall my first glance of your piercing eyes filled with determination and passion. I also remember how we became instant friends and immediately started telling each other jokes about effects of Benedryl that would make your best friend nervous to overhear.


Cancer distorts your concept of the most essential necessity in your life, the need for love. When confined to your bed you no longer have the opportunity to seek out relationships that will satisfy your innate longings. You are forced to wait in anticipation for those interactions to come to you. Be patient. God will bless you and send you friends that will love and support you through these trials. When I was first diagnosed with cancer my friendships all changed. Some of my alleged “best friends” deserted me. At first I added this to my list of reasons why I am the unluckiest person in the world, but soon I realized it was a blessing. The friends that remain loyal are reliable and will never hurt you so you know you can trust them and be completely at ease and honest with them.


I realize that relationships change and at times you will feel lonely. You will feel left out because you are away from your friends. But, through cancer, the definition of a good friend develops: a good friend is no longer someone who comes to your house after school to gossip and hang out. A good friend holds your hair back when you are sick and holds your hand when you shake from blood allergies. A good friend listens to you rant and rage as you search for meaning in a foggy abyss. Remember, one good friend is better than a million fake friends.


You know you will have to deal with the usual problems of being a teen, now with the new twist called cancer added. Your heart will pound when a guy walks in and says or does something that catches your attention. You, being the teenager girl whose hormones are starting to kick in, will want to flirt. But, no longer do you feel like the adorable, non-threatening girl. You are bald!!! Not only do you feel like crap, but you also feel ugly with your golden locks gone. Don’t worry about being bald, though. Let me tell you something, Anna, people will like the way you look. Anyway, people will love you most of all for your spirit. Any guy who does not see you for the wonderful person you are is not worth a moment of your precious time.


I understand the difficulty of just hanging out with friends. For one thing, you feel awful. In the last 24 hours you probably endured more pain than your friends have in their entire lives. Don’t dwell on this. Try not to complain about your discomfort; it is reasonable to let yourself escape for a couple of hours from the dark side of the cancer universe. I know the uncomfortable feeling of this foreign body that is not only constantly changing because of your age, but it is also deteriorating right before your eyes. Don’t give in to it; stay active if you can. Take walks. They provide great opportunities to enjoy the beauties of nature and exercise helps your body stay stronger so you’ll even feel better.


It was in good times, in between treatments, that I realized just how significantly my life had changed. In public places I was amazed at the impact my experiences had on people. When I went to school I was treated almost as a celebrity because people came rushing over to ask me how I was feeling. God will use you Anna to touch others merely by sharing your experiences on your website. The fact that hundreds of people are affected by my struggle encourages me to keep fighting. When you feel isolated from the world, remember all the people who are praying for you and the impact your existence has had. You will make a profound difference in the lives of others.


Make sure you don’t envy or hate anyone. When I was first diagnosed I was disdainful of those that complained of petty problems. Take people as they present themselves to you. You do not know the whole scope of their lives, and they might have a good reason for acting the way they do. They may have struggles or even mental problems you cannot comprehend. Picture them as curable by love and compassion. Never compare your cancer to their troubles, instead learn sympathy through others’ sympathy toward you.


Anna, I know they told you that it is almost impossible for you to live another year with all the cancer that is left, but you are not just a statistic. Whatever you do, don’t overanalyze the numbers or put your faith in statistics. You are a girl made in the image of God, and if God wants you to survive, you will definitely survive. I know that chemotherapy is not working for you, but enjoy each day and don’t worry about tomorrow. No one can know what will happen to them, therefore, don’t envy anyone who you view as more fortunate. You just never know how their life, or yours, will turn out. You have a wonderful, loving family and friends that will support you through all you do, so put your focus on them and the many ways you have been blessed.


No one ever says, “Congratulations on being one of the lucky few to receive cancer.” You don’t have to be happy to be sick. Cancer will educate you on the secrets of a life of love, but it does not demand constant cheer. We both know death; we have each faced it and conquered. Don’t store your fear in the bottom of your stomach. Take my advice and journal about your worries. When your family and friends don’t want to talk about the potential unpleasantness in your future, your journal will always linger, waiting for you to confide. Don’t hide anything, your diary does not judge and shudders at the thought of gossip.


You have a choice, Anna. I have met only two kinds of cancer patients. Half become very bitter towards their disease and dwell on their misfortune. Because they think the world revolves around them and owes them something, they become very depressed. The other half of cancer patients do not ignore the fact that they are dying, but choose to take advantage of all that is good in life. They genuinely care about others despite what is happening to them. When they become sad, they have a good long cry, but afterward they decide there is nothing they can do about the situation, so they pick themselves up and take advantage of the life left in them. Become that second person, Anna! One of the most important choices you will make in life is the attitude you adopt. This determines the kind of person you’ll be.


Remember to seize every moment of every day. Do not live life dwelling in the past; rather use your mistakes for future success. Even a day spent in agony can be viewed as another day to spend meeting nurses, talking with friends and family, and learning what matters most in life. I found that when I felt the worst, I woke up praising the Lord the most for allowing me to live another day. For the brief time I tasted remission, my joy faded for I was not forced to ponder over life. When you feel good, don’t always go to bed early; discard any self-consciousness and grab for memories that will sustain you through that next month of intense pain and isolation. Become aware of the simple pleasures in life: a cup of warm soup that slides down your throat warming you from the inside out, a breeze that screams vivacity and energy, filled with life. Relish every conversation. Listen to others and seek to pry new truth from their words. Hunt for every detail of life like a child. You will find an awe that starts at the bottom and fills your whole soul with a wonder that calms you and gives you an uncomplicated peace.


Anna, we’ve only just met, but in this horrid disease we have so much in common. I hope these words encourage you as you fight this battle. Live large. In spite of your distress you have so much to give to others and so much of life still to enjoy. Find those moments and relish them. Cherish what you have now. Someday we’ll celebrate remission together.


Love,
Elizabeth

Saturday, October 2, 2004 10:36 CDT

Hi, The golf tournament has been cancelled due to low turnout. Not enough lead time I guess. Chris says we will try again in April. Mark your calendars now!! Thanks anyway Chris, Lee and Jim. We really appreciate your efforts and look forward to a great time in April.

The lemonade stand was today in Osterville. It was a little cool for Lemonade but we made the best of it. Thanks to everyone who came by and contributed to help kids fight cancer!
Special thanks to Megan and Joyce and the Mulone family for putting on the stand and to Abby for helping out with the kids. We have lots of lemonade left and so there may be another stand tomorrow at Stop and Shop in Marstons Mills. Come on by and support kids.

Monday we are off to NY. We are able to take a flight to and from Hyannis the same day due to the efforts of some "Special Friends". Thank you so much. This is just huge! I really appreciate it.

God Bless and Good Night, Love, Ellen




Thursday, September 30, 2004 2:52am CDT

Hi, Sean and I went to Boston Childrens Last week to meet Dr. Diller. They did blood work and a spot check of the urine for catecholamines. He is no longer anemic, and so no longer needs iron. He may be hypothyroid (like his mom), and we will keep an eye on that. Best of all the urine was within normal limits. (The tumor cells secrete catecholamines.) We will go to NY for tests on Monday. I don't know how we are getting there yet. Scott is coming with us. He will have an MRI, Renal scan and Urine testing. Hopefully, if all is well we can follow-up at Boston Childrens with scans every 3 months.

Lemonade-There is another Alexs Lemonade Stand Saturday in Osterville from 10a-3p in front of the Baptist Church at Fall Festival Days. It will be run by Joyce and Megan Mulone. If anyone wants to volunteer let me or Joyce know. It benefits pediatric cancer. The Book and Necklaces will also probably be available. Get your wives a necklace for Christmas! Everyone notices them, they are really cool, and part of the proceeds go to the fund.

Golf-The 1st Annual Scott Hanson Golf Tournament will take place October 9th. It sounds like it is going to be a really fun time. Please RSVP right away so they can get a head count. Call Ellen Cu
rtice at 508-457-3993. Or email me and I can send you the info. Or contact
Chris at ccarucci@linbeck.com

Tiffany-Is loving her job at Sweet Tomatoes in Osterville and enjoying her new apartment upstairs.

Kathleen, Sean and Heather-Getting ready for the big 2nd Birthday on October 8th! I can't believe they will be 2yrs. already. They are really getting personality and seem to have inherited their Papas sense of humor. They totally crack me up.

Scott A.-Is enjoying Pre-K at Fair Acres. It is so good for him to have the structure and security. If you are very good at rest you get a prize, he actually was begging to go to school today! Nice work Jen and Noel.
This afternoon Scott and I went over to our friend Billys house. It was cold and rainy and windy but we all went in the pool at Scotts request and had a wonderful time-like 5yr olds do. Thanks Billy. It was really cold after all the rain, but it was great to see Scott with such a big grin. He also went out on an upstairs deck and could sit on a portion of the roof. Since he thinks he can do roofing and is a "highly trained carpenter", he thought this was really cool!

Continued thanks for all the support everyone continues to show us. I really appreciate (and need it). Please continue to pray for Sean to have improved results in NY, and also for our friend Sophia who is having a Bone Marrow transplant in Boston. http://www.caringbridge.org/ma/sophiamarie

Thanks to all the angels taking care of us. I think of Scott everyday, all day, and miss him so much. Some days are very hard. Last year at this time we were in NY and getting ready for Seans surgery. I just can't believe what a year it has been, but am so thankful that Sean is doing well.

God Bless You!
Love, Ellen and the kids.

Thursday, September 30, 2004 2:52 AM CDT

Hi, Sean and I went to Boston Childrens Last week to meet Dr. Diller. They did blood work and a spot check of the urine for catecholamines. He is no longer anemic, and so no longer needs iron. He may be hypothyroid (like his mom), and we will keep an eye on that. Best of all the urine was within normal limits. (The tumor cells secrete catecholamines.) We will go to NY for tests on Monday. I don't know how we are getting there yet. Scott is coming with us. He will have an MRI, Renal scan and Urine testing. Hopefully, if all is well we can follow-up at Boston Childrens with scans every 3 months.

Lemonade-There is another Alexs Lemonade Stand Saturday in Osterville from 10a-3p in front of the Baptist Church at Fall Festival Days. It will be run by Joyce and Megan Mulone. If anyone wants to volunteer let me or Joyce know. It benefits pediatric cancer. The Book and Necklaces will also probably be available. Get your wives a necklace for Christmas! Everyone notices them, they are really cool, and part of the proceeds go to the fund.

Golf-The 1st Annual Scott Hanson Golf Tournament will take place October 9th. It sounds like it is going to be a really fun time. Please RSVP right away so they can get a head count. Call Ellen Curtice at 508-

Friday, September 24, 2004 9:36 AM CDT

Hi, Just a quick note as Sean spilled tea in my computer and it is being repaired! The kids are all well after taking turns being sick for about a week. Luckily Mom never got sick, just tired.

Last night Scott and I were standing in the kitchen and he said "Put on the music Mom", I had a CD in so I played "One small Star", which is the song that we played at both Scotts and Dads funerals. I love the words like "Your lights still shining in my heart". And it was so cute, He asked me to dance, and so we danced and laughed and kissed the picture of Papa on the frig, and had a special time!
(Kind of weird, as we never dance, but I think we have started a new tradition.)

My friend Joyce and her daughter Megan will be hosting the next Alexs Lemonade Stand in Osterville. It is on Oct 2nd in front of the Ost. Baptist Church at Fall Festival Days from 10am-3pm. They are very busy with the preparations and Megan is healing after being thrown from a horse and breaking her arm. Hope your feeling better Megan.

Next we travel to NY for Seans MRI and Renal Scan October 3-5th.

October 8th we celebrate the triplets second birthday and hopefully continued regression of Seans cancer.

Scotts friends and co-workers from Linbeck Construction and Falmouth Hospital are busy planning the 1st Annual Scott Hanson Memorial Golf tournament. It is Oct 9th at 8am. at Hyannis Country Club. Lots of fun and prizes to be had. Please RSVP as soon as possible as they need a head count for the course. You can contact me for more info or ccarucci@linbeck.com

"Lending Hands for the Hansons" is preparing for a Silent Auction on November 20th (date was changed from Oct to Nov.) at Bally Meade in Falmouth at 7pm. It sounds like it will really be a fun evening.

So many people are working to help us as well as to raise awareness of neuroblastoma and raise money for pediatric cancer.

Our friends from Angels Hope as well as some friends and neighbors continue to help with meals. This is just a Godsend on those busy days. They are keeping us all well nourished!

Thank you to all the "Church Ladies", who are volunteering to help out with my busy little children.

Thanks for all the continued thoughts prayers, and random acts of kindness. Words cannot express my gratitude to everyone who is helping us and keeping me stong!

God Bless You! Love, Ellen

Monday, September 20, 2004 9:19 PM CDT

Hi-We survived Scotts Birthday. I never made it to church or to plant a tree or anything like that but Scott A. stayed home from school because he had been sick and we had a nice day together. We went to the toy store and got Scott A. a new army set. Next we visited the cemetary and later had ice cream with a candle that sings "Happy Birthday" with a picture of Papa and "Happy Birthday" napkins. I'm sure big Scott would not mind and would want the kids to have a good day. Ruth was kind enough to accompany me to Wimpys for dinner. Mostly I was too busy to deal with it much-I guess thats good. Last year we were at Mass General with Sean.

Saturday was Jareds wedding. The weather broke just in time, it stopped raining and was actually a beautiful September night. Everything was lovely. The food was fabulous. Of course I missed Dad and Scott. Jared has lots of cobblestones and gardens and he had a fire going..all things my Scott would have loved!! (And probably copied around here..we always talked of having a chiminea etc. and I just have a thing for rocks and cobbles!) I'm sure they were both there in spirit!

Today we went to Dana Faber/Childrens Hospital to meet the Doctor and staff there. Hopefully if all is well in NY we can do our follow-up stuff in Boston. The nurse is actually from the Cape, so I felt that we were in good hands! Everyone was very nice. I'm still pretty forgetful and asked Seans medication dose twice even though I was just told. I really have to write down everything-its terrible. My head is just too full so anything new spills over! When we got home Daphne had the girls all ready and we went to Cookes for dinner. Everyone was well behaved and Scott is such a big help. Thanks Mary and Sean for helping me out with Scott this week.

Happy Birthday (yesterday) to Aunt Maura.

We go to NY next for tests on October 4th.

October 8th is Seans 2nd Birthday!! (Kathleen and Heather too of course.)

Papa Scotts friends at Falmouth Hospital are planning a Memorial Golf Tournament on October 9th at Hyannis Country Club.

There are also plans for another silent auction on October 22nd at Bally Meade in Falmouth.

Continued thanks for all the prayers and ongoing support to the Hanson family and especially Sean.

God Bless! Love, Ellen

Tuesday, September 14, 2004 7:45 PM CDT

Hi, tomorrow is Scott's (the Papa) birthday. I wish he were here with us, but we will celebrate in some form so that the kids will remember. He would have been 44yrs. old. Little Scott wants to get him some tools and bring them to the cemetary. And of course he wants some toys for himself. He is sick and vomiting tonight, so he prob wont go to school anyway and we will find some way to celebrate Papas birthday. It may be with clear liquids! Please pray the babies don't catch it! I think I will try to go to church in the am. I haven't been except to funerals.

The little people are ok. They are developing a large vocabulary, especially Sean. They also are starting to be interested in the "potty". That could be a really good thing. Heather seems over her ear infection.

Alexs Lemonade stand went well, in Marstons Mills. Thank you Janelle, Margie and Carrie. There will be another in Osterville, on October 2nd. Thanks Joyce and Megan for doing so much for Neuroblastoma-this will be the 3rd time they have been involved. Hooray! Thanks to Abby for babysitting and helping me with the stroller so that we could go!

Please don't forget to sign the guestbook. I've updated the pictures too.

Thanks again for all the thoughts and prayers and all the other things people are doing to support us. I am so very thankful!!

Please say a little prayer for Sophia, who is undergoing Bone Marrow Transplant in Boston. http://www.caringbridge.org/ma/sophiamarie

God Bless!!

Love, Ellen and the kids.

Friday, September 10, 2004 2:14 AM CDT

Hello Friends, Thanks for checking in on us. Please don't forget to sign the guestbook so that we know that you have been here and are supporting us. I really appreciate it!!

Its was one year ago today that Sean was found to have a large abdominal tumor that was later determined to be Neuroblastoma.

And what a year it has been!! We were in New York at least once and sometimes twice in 8 of 12 months. Sean survived a short course of high dose chemo and an 11 1/2 hour life threatening surgery. We have lost his Papa Scott, My Dad Poppie and my best friend Stephanie. I thank God that Sean is still with us and doing so well. If you did not know his story, you would never know he was sick. We are still evaluating residual tumor in and near his spine.

He smiles and runs and plays with the other children. He is really starting to appreciate having a brother and Scott and Sean tackle each other and roll around on the floor attacking each other and laughing.

We will go to Boston to meet the Doctors there and do a spot urine for VMA/HVA on 9/20. Next we will go to NY for his MRI, Renal Scan and Urine for Catecholamines testing. I always get nervous just before testing but especially since Scott died and now I know that "anything" can happen in life. I used to be a little more natually optimistic.

Assuming all goes well, we have to do the routine testing less often. Probably every 6 months or so.

Scott will probably come with me to NY again, depending on the babysitting situation at home.

Papa Scotts Birthday is next week. Last year we snuck out to his birthday dinner across the street from Mass General Hospital while a volunteer sat with Sean. I miss him so much every day and still feel like this all just can't be real. Its 4 months today that he has been gone. Please continue to watch over us Papa, especially our Sean. I still cry every day. I miss Dad and Stephanie too.

Alexs Lemonade Stand is coming to Marstons Mills.
Sunday, September 12th
Main St. Marstons Mills at Village Days

I know they are still looking for volunteers to spend one hour serving lemonade. Let me know if your available to help. They are very close to the goal of 1 million dollars for the year to support pediatric cancer. Alex Scott lost her battle with Neuroblastoma in August. She was 8 yrs. old. Please stop by for a nice cool glass of lemonade. They probably will also have the books and necklaces for sale. You can check out Alexslemonade.com for more info.

Please say a prayer for our friend Sophia, she is about to undergo a bone marrow transplant in Boston for relapsed neuroblastoma-not a good thing. Or maybe take the time to send her a card/postcard. She is 4 years old. http://www.caringbridge.org/ma/sophiamarie

Heather has a double ear infection but seems to be feeling better. She has also figured out how to cry just right to be able to come and sleep in Mommys bed. Little Scott is here too. Its getting crowded. Kathleen and Sean are fine-and in their cribs.

Thanks again to all the "Earth Angels" taking care of us. We are still having some dinners provided. The Carpenters are continuing to help complete some projects. We have some volunteers from Our Lady of Victory helping with the kids. I still always need some reliable sitters if you know of any! Dear friends are taking care of me. And many more people helping in lots of different ways and praying for us all.

God Bless you and keep you, Love, Ellen and the kids.

Tuesday, September 7, 2004 5:22 AM CDT

Hello, As you can see from the photo, Sean had a nice trip to NH. Actually, they all cried the whole first day, never napped, were naughty in the restaurant and then stayed up 1/2 the night. The next day we took them to the playground and had a nice picnic lunch with Grammy and then while they napped Scott and I got to go to Jackson Falls and climb on the rocks and fish with a net. Next we went to Stephens and played with their toys for hours. They had friends and kids coming over for pizza and so we joined in. Everyone had a wonderful time. I was glad to see Stephen and Tish, and Michael and June. I just wish Scott was with us. He always liked to crash a party! When we got back to the hotel, we had switched to "adjoining" rooms, which worked much better. (Thanks Dee Dee for taking care of us at the hotel). The kids went to sleep and slept "almost" all night which they do at home. Little Scott and I went in the hot tub and everyone had a much better nights rest. Thanks so much Ruth for coming with us. There is no way I can do it alone. The triple stroller does not even fit in the car. It was very hard to go to Scotts house and not have him there. I miss him so much. I have so many happy memories with him in NH and I still can't believe this is all real.

Today is Scotts first day of school.
We went yesterday to check out his new class. I'm glad I did. He didn't want to get out of the car and wanted his "old" class, teacher and friends. He warmed up to the new room and we left a toy for the kids. His cubby is next to one of his friends and he called him when we got home. Now he is excited and can't wait to go. They also have a fancy new playground!

Kathleen is fine. Heather has a very bad cold and fever. Sean has a drippy nose and I think he will be next to catch it.

We did go to the yacht club yesterday afternoon and Sean went for a boat ride with Joyce and Tony. The other kids played on the beach. I put all 4 in the tub and served hot dogs for dinner.

I miss Scott, and Dad and Stephanie. I cry everyday. Thursday will be one year ago that Sean was diagnosed with Neuroblastoma. The day everything changed. Thank God my little angel is still here with me, and doing so well!!
Please continue to pray for him. And for me. And for our friend Sophia who has relapsed and is going in for a bone marrow transplant in Boston starting this week.

Alexs Lemonade Stand in Marstons Mills!!! It will be held at Village Days on Septerber 12th. Please stop by for a nice cool glass of lemonade and help support children with cancer! I'm sure her books and necklaces will be available too. Everyone comments on my necklace with the pink and yellow beads to represent lemonade. Alex lost her battle with neuroblastoma this year and lots of people are helping to obtain the million dollars in fundraising this year. Thanks.


Please sign the guestbook, I really do feel all the support when I read it.

Thanks for everyones continued support and love and prayers.
God Bless, Love, Ellen

Tuesday, August 31, 2004 0:01 AM CDT

Hello, I'm feeling very, very sad today. Yesterday I was ok. I never know how I will feel until I wake up. Its all very strange and not what I would expect. Not that I would know what to expect, but I have had other loses.....
I am not looking forward to winter.

Sean is great and just adorable. He really is the cutest little thing. He had a great sense of humor like his father. He cracks himself up! His next check up in NY is October 4th. MRI and Renal Scan and probably Urine for catecholamines. I'm already nervous...but really he looks and feels great.

Kathleen and Heather are just fine and beautiful! Heather is finally growing just a little hair with a bit of curl I think!
They are at such a special age. When they hear music they all dance. They are all different and very cool! They are starting to really play with each other and communicate in a way that I am starting to "get". They jump on their beds/cribs all together or pretend to eat make believe food and say "um, um." When they go to bed and we say our prayers they blow kisses to everyone.

Scott is my best helper and my pal!! So much is asked of him. He has had to become very independent around the house but still likes to stay close to Mommy. He is looking forward to school as he will get a new Rescue Hero Command Center on the first day if he goes and is a good boy for his new teacher. We also got and imaginex toy for his classroom just to make sure it will all be ok for him. (And that he will actually get out of the car and leave Mom for a few hours.)

We are off to NH tomorrow, thanks to Ruth who has offered to come with me and help with kids. Its where Scott and I met. We have lots of friends there but I have only been once since the kids were born. I'm looking forward to the distraction from reality. I'm sure it will be bittersweet-with memories of Scott. We also get to see Grammy. Poppie (my Dad) did business in the same area and I will have memories of him too. I think it will be good. I hope the kids travel well, its hard when their routine is messed up. Not that anything around here is really routine anymore!!

Tiffany loves her job and her new apartment and has been working alot. She is also tending to her fathers garden before I kill off what little is left. It looks much better and I'm sure her daddy is proud. Little Scott also loves to work outside and help her.

Thanks again for checking on us. Please sign the guestbook so I know you were here. Thanks to everyone who is taking care of us and praying for us. I really appreciate it!

God Bless, Love, Ellen and the kids.

Tuesday, August 24, 2004 10:49 PM CDT

Hi, We had another busy weekend.....

Saturday- We had more Carpenter Angels here this weekend and lots of other Earthly angels too. I had a yard sale and could not have survived it without the help of Jenn, Jared and Libby. My neighbor Sylvia called to see if I needed help and ended up watching all 4 kids. Thanks Sylvia. Scott A. of course loves to have all the Carpenters here "working". Everyday he just wants to "work".

Sunday-I took the kids to the yacht club. It takes me 2 hours to get ready, but they love it when we get there. Scott stays in the water the whole time, except when I make him get out to eat. The babies love the water and Annie, the sitter ended up soaked. Seans face lights up and Heather wants to swim out and jump off the dock. They were all dancing and playing and they were very good.


Monday-Scott did go the beach with my brother Brian yesterday and with his cousins. They went fishing and caught crabs and had all kinds of wonderful adventures. He even went back our in the evening to Uncle Jareds house for sparklers and more fun. Its nice to see him getting away from Mom to have some fun without feeling afraid. He is still afraid, and we talk. We had some deep conversation last night. Poor little kid knows way too much about death for his age and is afraid of leaving/losing Mom. I understand as I lost my Mom when I was 16yrs. and felt the same way. It might be hard to get him to school next week but I am already working on it, and hoping for the best.

Sean went to Boston with Lorel and I for an audition for a PBS show called the American Experience. I don't know how many kids they look at but we have fun seeing how "casting" is done etc. I hope he gets the part. It will keep me entertained. He was very well behaved and went to a stranger-I'm not really sure what they are looking for. Alysa and Alicia and Daphne watched the girls.

Tuesday, August 24-Today is our Anniversary. We got married on the 24th on purpose. It was our joke so Scott could remember the holidays. We met on the 24th, my birthday is the 24th, Scott A.s birthday is the 24th and the babies were born on the 8th (8x3=24). Last year Tiffany gave us tickets to Nantucket and we rode bikes all over the island. She also gave us a dinner certificate. The weather was great and we had a great time. I just found some pictures from that special day. Today I took the kids by the cemetary on the way to the beach with Heathers Godparents. We said a prayer and watered the flowers. Next we had lunch and then played in the sand. We came home and I attempted a short nap. Next it was off to Mashpee Commons for shopping and dinner with my very good friend Joyce. She even had a gift for me. When I got home my Little Scott had made me a "Jello Cake". We had red jello with whipped cream and a candle and he sang to me. We also took pictures. What a special way to celebrate my special day with all our babies and a "Red Jello Cake!" God Bless you Papa, I love you so much, and I miss you every day. I wish you were here to share my jello and our kids. Scott was so pleased with himself and I am very proud of him. I miss my Dad too as I know he would be with me today, supporting me and making sure I'm ok.

Thanks again to all the helpers and angels too numerous to name. We are still receiving meals, donations, babysitting, building supplies, carpenters, electricians, plumbers, laborers, notes, cards, thoughts and prayers and support of all kinds from all over. I could not be doing this without all of your help. Thanks you again from me and the kids!

Please remember to sign the guestbook so that we know that you were here. God Bless you all! Happy Anniversary my Scott, I love you, Ellen

Monday, August 16, 2004 7:34 PM CDT

Hi, Its already been a week since Dad died and 3 months for Scott. I can't believe my life sometimes. Dad put up a good fight and Thank God he did not suffer much. He is in Heaven with my Mom and with Scott. We have lots of Angels looking out for us.

We have lots of Earthly Angels too! The Carpenters have been here doing all kinds of things for us. It is an incredible sight to see all these wonderful men, Scotts friends, all over the house. They are from Linbeck, Peacock and Crosby, and the Carpenters Union. There are also electicians, laborers etc. that he worked with at Cape Cod and Falmouth Hospitals. Little Scott gets so excited. I suddenly discovered I missed the sound of power tools. This weekend we had the added help of some of the girls, who cooked, babysat my tribe, served coffee/food/beer and were here to do whatever needed doing. I was also lucky to have cousin Pamela of Ireland here to help out. Besides giving their time and talents on beautiful summer saturdays, they also took up collections on various job sites to contribute to the kids fund. What a wonderful group, I only wish Scott could be here (in person), he would be having as much fun as little Scott and would be making everyone laugh. Dad knew how much the guys were helping me out and was so appreciative. God Bless you!

Thank you so much for the cards, donations, flowers, and emotional support.

I am truly Blessed!

Love, Ellen and the kids. XOXOXO

Monday, August 9, 2004 11:09 PM CDT

Monday August 9, 2004 11:09 PM CDT

Hi Friends, It is with deep sorrow that I share with you the death of Seans Grandfather, my Father "Poppie". He died at about 1130pm. on Sunday night. My sisters Gael and Katie, Gaels boyfriend Gary (who lost his father Richard) last Monday (also with lung cancer and diagnosed the same week.), My brother Brian, My nieces Caitlin and Christa and my little Scott were there. He was not in pain, except for when we moved him around. Caitlin went and got a blanket that "Nana Doris" had made and placed it on his bed, (my mother who died in 1978). Dad took his last breath peacefully, moments later. Scott threw his pajama pants on the bed-"cause thats what people do with flowers and I don't have any". Kids are great, thank God for my kids. God Bless you my Daddy, I love you. Please watch over all of us with Papa Scott and Nana Doris.

The wake will be at the John-Lawrence Funeral Home Rt. 28 in Marstons Mills, Ma. Wed 5-8pm. The funeral will be at Our Lady of Victory Church, Centerville, Ma. Thursday at 11am. In lieu of flowers donations can be made to the Hanson Children Trust, Cape Cod Five, Rt. 28, Centerville, Ma. 02632
Thank you so much for all the thoughts and prayers for my Dad and for my family. God Bless you. Love, Ellen


Saturday August 7, 2004 11:09 PM CDT
Hi all, Dad is not doing well and it looks like his time may be short. Brian is home from London, Katie is here from NH and he is staying at Gaels house. We tried one round of chemo last week, but I think its too late to help. He does not seem to have pain and just wants to sleep. Please say an extra prayer for Dad. Little Scott says he will see Papa and Nana Doris soon.

The Carpenter were here today. Scotts friends. From his first job on Cape Cod-with my good friends Scott P. and Scott C. and Roger C., to his Union friends, to his friends from Cape Cod and Falmouth Hospitals. What a site to see them all here, together, helping, working, taking care of us~Scotts Family, Their Friend!

It continues to amaze me the time, commitment, effort, and love that is shown to us each day!

Someone came to weed the garden, I'm not sure who! Dinners still arrive-magically at at times~ I am very thankful!

Scott LeRoux rode his bike in the Pan Mass Challenge today, in honor of Sean. I have only collected $500.00, I need $1250.00 more. This money goes to the Jimmy Fund at Dana Farber through Myfriendsforlife.com and is being used to hire a permanent research fellow for neuroblastoma at Dana Farber. Anyone wishing to donate can contact me at Ehanson89@aol.com

Please say a prayer for Simon, who lost his battle with neuroblastoma yesterday and for his family.

Please say a prayer for me, for strength, for my Little Scott who is learning about life and death at such a young age, for the babies, Kathleen, Sean and Heather, for all my family, and especially Dad~Poppie.

Thank you and God Bless you! Love, Ellen

Tuesday, August 3, 2004 3:59 PM CDT

Hello, Thank Goodness Sean and the kids are doing great. I've just come from the doctor with Dad, he is not doing well and will start chemo tomorrow afternoon.

Please say a prayer for Alex (www.alexslemonade.com) who lost her battle with neuroblastoma this week, for Garys Dad Richard who lost his battle with lung cancer yesterday and for my Dad, Andy who is really hoping for a little more time.

Thank you to everyone who is helping me to keep going, and helping out with the kids. God Bless, Love, Ellen

P.S.-My computer is being repaired, hope to have it back tomorrow night. el

Sunday, July 25, 2004 9:40 PM CDT

Tuesday July 27, 2004 12:55 AM CDT

I took Dad to Dana Farber Monday. The news is not good. His tumors are progressing, liver mets, he will need to try chemo or have very little time left. He is very weak/forgetful and has no appetite. He will have to stay with me or Gael for sure. I'm having a really, really bad year! ~Please say an extra prayer for Dad. I still need him~God Bless, Love Ellen




July 25th 9:40 PM CDT

Greetings from Cape Cod! (It did say Chicago and I wrote a big note, but hit the wrong button, and so I will try again!)

We are home, both flights were exceptional, I would have to say. On the way home I had the presence of mind to put in a movie on the computer. Great idea! (till the battery dies.)

Well Scott and I had a wonderful time in Chicago. I met alot of my "internet" friends in person and was able to bond with them and their families. It really is an incredible opportunity and experience. Diane was on my flight and Scott refers to her as "my friend". Maria met us at the airport and ordered us a limo-"like Papa likes". She wasn't even staying at the hotel. She also brought Scott Power Rangers and a transformer. Big Hits!! Next we met Grandma Sweet and Myra and family. Scott bonded with Gabe and Garrett and even went to their room for "movie night" without MOM!! I was able to go to the bar with Dr. Reynolds and some other Moms to ask the poor man More questions!!

We met Joeys mom and niece and found out that Katheryn lives 1/2 mile from me at her summer rental. We met Mary and Molly and Billy. Molly is a nb survivor and made a beautiful sponge bob blanket for Sean...although I think it is Scotts now. He carried it everywhere all weekend. Thanks Molly. Molly is a survivor and even plays hockey!!
Go Molly.
We met Ryans parents and Kristen and Karla and Kara, and Anna, Justine and Eric and of course Pat and her family that run the conference. And so many others.

It was great to hear what Doctors from around the country had to say. I'm not sure I got any "straight" answers, but I do feel comfortable waiting until the tumor "tells me" it needs to be treated. So far Sean has done great and is such a love. He is just adorable.

We did the tourist thing. We went to the newly opened Millenium Park, walked the Miraculous Mile and went shopping, and to Navy Pier. We took a small boat out on the lake. We walked miles up and down the river. Scott played in every fountain we came across. He ate cotton candy and popcorn and had a great time. He got to go on a big plane that went "into space", and he got to ride on a trolley and in a Limo. Mostly he sat under my table at the conference-coloring or playing dinosaur. Mostly he was very good-although he had moments at the end of the day! He did get to the disney store and now is sporting new power rangers underpants and a new shirt.

I really missed Scott E. He was supposed to be on this trip. Naturally, I thought of him everywhere. There are lots of limos and he looked at them on ebay all the time.'
I thought of him at the conference, at meals, in the room, Packing, unpacking, on the boat ride, on the plane etc. I was thinking I needed to bring him a t-shirt....so sad. I wanted him to hear the conference and meet the dads. I kept thinking I should call him. I did decide that I have PTSD after that peticuliar talk...not from the cancer, I am a nurse, from losing the love of my life, my chidrens father, it is still shocking to me. I know that he wanted to live.

Once again, It is striking how nb affects the whole family.
This gives me the energy to continue fundraising for neuroblastoma. It is devastating to families on a regular basis.

Scott Leroux is still going to ride in the Pan Mass Challenge in honor of Sean Aug 7, 8, and I will continue to do whatever fundraising I can. ($1750.00) to ride.

When you meet the kids, you are reminded that the cure cannot wait!!!

Sean is looking and feeling great. I am waiting for a Boston appt for his follow-up. His next NY appt is in October.

Dad is still not feeling well. I will try to bring him to Boston this week, despite the convention.

Thanks to all the fairies and angels taking care of things at 80 Liberty Lane. I Cound not have gone without you!!!!

Please remember to sign the guestbook, I really look forward to seeing who is thinking of us and praying for us.

Thanks to everyone for thinking of my family and thanks to all of you that made Scotts trip extra special for him!!

God Bless you all. Love, Ellen

Wednesday, July 21, 2004 11:46 PM CDT

Hi, Scott A. and I are off to Chicago in the am. Or as he calls it "ChiCha-go". Many thanks to all the volunteers, church ladies, babysitters, dinner delivery persons, etc., that are allowing us to go and see whats new for neuroblastoma! I am excited to hear what the experts from around the country have to say, as well as to meet alot of my nb internet friends and families. Maria, an "angel mom" from Texas has arranged for us to get to the hotel via limo! Thanks Maria, we can't wait to meet you! Diane, who is a Massachusetts Mom will be on our flight. I am not anxious to fly, but I figure it can't be much worse than the last flight. I did however pack the rosary beads this time!

Dad still isn't feeling great. He is on antibiotics and will have another check-up on friday. He is always so supportive to me and the kids. I know he wishes he was coming with us. Maybe next year!

I will miss my little pals, Kathleen, Sean and Heather. They are so funny. They are starting to talk and really have personality.

I will miss my Scott as he was supposed to be going with me. I miss him every day. I hope he will be with us in spirit and watch over us for a safe trip, and watch over everyone at home.

Thanks again for all the wonderful people taking care of all of us in so many ways. Thank you for your continued prayers. God Bless! Love, Ellen

Please don't forget to sign the guestbook so we know you were here and thinking of us, it really means alot to me!

Sunday, July 18, 2004 7:30 PM CDT

Hello, We helped out at an Alexs Lemonade Stand yesterday. It was run by Tara and Carrie who did an excellent job. They even had the stand built. It was really fun. Scott A. helped and did a terrific job filling cups of lemonade. Our new friends who make "Cutie Clams for Cancer" were able to attend, and to help Sean with some fund raising once again. Cutie Clams are adorable. No 2 are the same. Some have hats, some jewelery and there was even a hampster clam. They really have personality. I watched a small boy choose the clam with big fake eyelashes and earrings. It was really fun. We actually ran out of cutie clams, as they were a big hit!

We also sold necklaces that can be found on Alexslemonade.com site. They are really pretty with pink and yellow beads to represent the lemonade. Gael and I each got one.

We sold the books Alexs parents wrote too, we sold them all.

Many thanks to all the volunteers, Martha-a triplet mom and her girls, Gael-my sister, Jackie-her partner at Cotton Real Estate, Tiffany-Seans sister, Sylvia-our neighbor, Joyce and her daughter Megan-our dear friends, Marcia-from our bank, and many others.

Thanks to those friends and strangers who came to donate or just to have a nice cool glass of lemonade.

I met lots of new friends and even another family with a child fighting neuroblastoma from the Boston area.

Special thanks to Daphne and Lorel for taking care of the kids so I could participate. They took them to breakfast and all over town and tired them out for their nap. Daphne probably needed one too.

Dad hasn't been feeling well with extreme fatigue and slept over last night so I could make sure he ate and was ok. Gael took him to the hospital today and he has a bit of pneumonia. He says he is feeling better after getting some fluids. Little Scott and I served him up a nice breakfast with bacon and eggs, like Papa used to make. He is on anti-biotics and I hope will be much better thursday so I can go to Chicago and not worry.

Scott A. is coming with me to the neuroblastoma conference in Chicago July 22-25th. There are lots of families and children going. I just hope he will go to the kids room when he is supposed to without a scene. There are crafts and face painting etc. going on. Of course-we have to go on a plane, and those of you who have read my old journal prob know how I feel about that part!! He is very attatched right now, sleeping in my bed and even would not go with friends at village day. He likes to keep me in his sight. Its very sad to see a child lose their innocence this way.
He even dreamed that I left him on the plane. Poor guy. I have reassured him in everyway, but you know how it goes. Hopefully it will all be smooth and we will have some nice quality time together, just Scott and Mommy. Thanks to Joyce and Jenn who he is comfortable enough to go with for a break for mommy and also to re-learn that Mommy will still be here.

The babies are all waking up at night, but it is prob because I go to them too easily. Tonight I will let them cry a little longer before I check on them. They had some time at the yacht club today which they always enjoy.

We will still be involved with Pan Mass Challenge with Scott Leroux riding in honor of Sean. These funds go to Myfriendsforlife.com another group trying to raise 1 million this year for neuroblastoma research. It is still within the Jimmy Fund. If you know any riders, they can join the team or designate that their fundraising goes to neuroblastoma specifically through myfriendsforlife.com

Tiffany is moving out monday and is very excited. It is close to work and she will live with her very good friend from work.

I miss Scott everyday, all day. He was involved with the Pan Mass thing and was planning on going to Chicago with me.
Everytime the kids do or say something cute I think of him.

God Bless you Papa, God Bless you Mom, please watch over us and take care of us. God Bless Poppie- who tells me he is feeling better. God bless all of you, and God Bless all of us!

Love to all, Ellen

Saturday, July 12, 2004 10:55 PM CDT

Hello, The latest on Sean is that he does not need another check-up until October-which will be the one year point. This is GREAT news but I am also nervous about going that long without even checking the urine for catecholamines. Yikes. (Although I am very pleased about not needing to fly to NY anytime soon). Please keep praying for my little guy.


Saturday, July 10, 2004
Hi Everyone, It has been 2 months since my Scott passed. I am not having a great day. I am very, very sad and reality is starting to set in. Thank God for Ruth who was here this morning and helped me with the kids, and for my poor Dad who is trying so hard to help me-(78 w/lung cancer-and lost my mom when she was 48yrs. so knows what this is all about.) He came right over when I called and told him I was desparate for a nap! Tonight is Comedy night at the yacht club, maybe that will cheer me up.

Yesterday, Scotts good friend Stephen, who he went to high school with came over. Scott A. is giving me a hard time about camp and won't go without a scene, and so ended up home. Steven worked with him all day. Scott hammered and dug holes, and they built a sand box for the front yard. Scott hammered about a million nails and was happy as a clam. He also got out Papas saw and any other tools he could find and "worked" all day. Today he got up, dressed himself and ran outside to hammer. Anyone know of a technical school type camp for a 5 yr. old?

A family that I don't know held a lemonade stand and sold decorated clam shells called "Cutie Clams for Cancer". They sent me the cutest picture of the kids and a check. People are so thoughtfu

l and kind. Maybe we can sell "Cutie Clams" in Osterville.

There will be an Alexs Lemonade Stand at the Baptist Church in Osterville on July 17th from 10am-3pm. Gael, Katie and I will be there. They are still looking for volunteers if anyone is available, otherwise stop by for a nice cool glass of lemonade and help us find the cure for kids cancer! Email me if you want to volunteer-for details. Also check out www.alexslemonade.com for Alex Scotts story. She's one cool kid!

Thanks to everyone making dinners for us, or just stopping by to play, or sending cards, thoughts and prayers. It really makes all the difference. I guess we are doing ok, but it is really hard and I just don't have any energy. I still feel physically ill at times. I think I need full time help if anyone knows a good au pair agency near here.

Tiffany loves her job and is doing great and hoping to move out with one of her friends soon.

Sean Kathleen and Heather are very busy. They are really learning to talk and love to go outside, we are working on getting a fence of some kind.

Thank Goodness for the yacht club, I don't know what I will do in the winter. I don't really like to even be alone right now.

Thanks to Danny Avalon and Bennett Plumbing for finishing the A/C for upstairs and figuring out where Scott left off.

I really miss Scott and its so sad that Scott A. has to always wait for me, or for the kids to have a nap so he can go outside and build things and "work". I am always telling him to "wait". He followed Scott everywhere around the yard
and had such a great day yesterday with Stephen, I am so thankful, but also sad at the same time.

God Bless you all! Have a great weekend.

Love, Ellen

Sunday, July 4, 2004 8:05 PM CDT

HAPPY 4TH OF JULY!!

Hope everyone had a great 4th and a great weekend. We are making the best of it here. We went to the yacht club yesterday and to a party for a short time. We did not go to the fireworks-Scott wanted to go where Papa takes us and bring the blanket etc. We had a really great time last year and I was surprised (and pleased) that he remembered all the details. Today we went to the annual 4th of July breakfast at the yacht club thanks to some help from Libby and Ruth. We had a nice breakfast with Poppie. I ended up staying all day (9am-4pm.) and the babies with no nap. They were very good and Scott A. stayed in the water ALL day. I had a little help from big sister Tiffany, Kim and Joyce and a few others that made the day a success. We came home and played and Poppie came over to help me with the kids and also to keep me company. (I have the worlds greatest Dad!!) Hope you all had a great day too.

I still miss Scott so much and just cannot believe that it is real when I look at pictures of his smiling face!

There will be an Alexs Lemonade Stand in Osterville on July 17th at Village Days. Please stop by for a nice cool glass of lemonade and help us to find the cure for childhood cancer.

Kathleen is sick with a cold and cough and ?ear infection and so was clingy today but still a trooper. I will prob have to bring her to the Dr. on tues.

Sean and Kathleen went for a boat ride and Sean loved it and waved to all the other boats, thanks Tony.

Heather sat and played with a pail and shovel for hours.

Please pray for all the kids and grown ups with cancer, the families of multiples and those dealing with depression and grief.

Thanks to Angels Hope and Katrina and Mike for new yard toys and a triplet stroller (with all its wheels working!)

Thanks to all of those making dinners and trying to make my life as stress free as possible in so many ways. I really appreciate it, and so do my babies.

God Bless you all! Love, Ellen and the kids.

Donations can be made to the Hanson Childrens Fund or the Sean Hanson Cancer fund, 80 Liberty Lane, Marstons Mills, Ma. 02648.

Tuesday, June 29, 2004 9:03 AM CDT

Hi, We had a wonderful time with Scotts sister Debbie and brother Peter and their families. All the kids got along fine and it was so nice for me. It was a great distraction. We took the kids to minigolf and go-karts and ice cream and fried seafood places. We went to the yacht club and they played in the sand and water for 2 days. Uncle Gary took everyone out in the boat. Now they are gone and I am back to a bit of reality and it is hard. I am still very sad, and feeling lonely now too. (Even when I am with people.) I miss my Scott terribly. We were together everyday. I still have trouble believeing it is "real" and "forever". Thank goodness for all the friends and support. The church has rounded up some volunteers to help me with the kids. Scott is on vacation this week and will start camp at Fair Acres next week. It is just hard to give them all the attention and time that they deserve and crave when there is only one of me. And I am tired. I have been for check-ups and all is well with me, Thank God, just grieving. Its one day at at time for us. Peter is talking about moving back from Hawaii, that would be nice for all of us. Debbie says she will be back soon. Dad is away this week but usually comes over every day. Thank goodness for babysitters too, so I can get all the errands and things done. Please keep us in your prayers. Bless the children fighting the battle with neuroblastoma, and all those fighting cancer and depression. Also God Bless all the Angels here on earth taking care of us. I don't have new pictures as my camera broke and had to be sent back to Sony. Scott gave it to me for my birthday and it means alot to me. I sure hope it can get fixed.

There may be an Alexs lemonade stand in Osterville on July 17th at Village Days, the money generated here goes to research for neuroblastoma, please support the kids! I think it will be at the Osterville Baptist Church, the pretty one on Main St. More on that when I get the details. You can check out the amazing Alex at www.alexslemonade.com

The trust has been set up for the kids. Donations can be made to the Hanson Children Trust, 80 Liberty Lane, Marstons Mills, Ma. 02648

Please don't forget to sign the guestbook. Scott would check everyday to see how many people looked at Seans site and if anyone signed. It really means alot to us, and will mean alot to Sean when he is old enough to read all the messages of love and support. Thanks.
Thank you and God Bless, Love, Ellen

Thursday, June 24, 2004 10:57 PM CDT

Dads good news! Tumors are slow growing, maybe Iressa is having an effect after all. No chemo for now, and we will check again in 6 weeks! Yahoo!
Thank You God! Ellen


Wednesday, June 23, 2004

Hi, I have the results from Seans urine testing. HVA is 24, it was 22 last time but normal is less than 29, so I wont worry yet. VMA is 10 which is unchanged, less than 12 is normal. Sounds like more good news, although I am anxious (naturally) for it to all disappear forever.

Scotts sister Debbie is here with her family from Vermont and Scotts brother Peter will be here tomorrow with his family from Hawaii. Its great to have his family around, I just wish they all lived closer.

Tomorrow is Scott A.'s last day of school and he is a shark in the "celebration" program.

Babies are all teething and running wild, Sean can climb out of his crib and has suddenly started talking-alot. They are so adorable.

I miss Scott everyday and am so sad. I do feel blessed to have had him for the time we had together. I love you Papa.

Thanks to all the good people out there helping me. The Yacht Club had a fundraiser which was a great success due to the hard work and donations of countless people.

A stranger came to the door with a generous donation.

Another sent one in and wanted to remain annonymous.

People are bringing dinner. Driving Scott to school. Sending notes/books/bringing things for kids, mowing the lawn. Praying.

People are good. We are so lucky to have so many friends and strangers that love us and care about us, and to live in such a supportive community.

God Bless everyone.

Say a prayer for Becca who lost her battle w/neuroblastoma this week and for my Dad (Poppie) who has his CT scan tomorrow for his lung cancer. And also for our family-especially that I may remain strong.

Thank you, Thank you, Thank you! Love, Ellen

Saturday, June 19, 2004 7:08 PM CDT

HAPPY FATHERS DAY!

Dear Papa, We miss you so much, everyday. I love you so much and its hard to get it all done well without you. God Bless you and I hope that you can stay close to me. I still need you so much. Happy Fathers Day Papa. Love, Ellen

I still don't have Seans urine test results yet. I have emailed but not gotten a response yet.

Thank you so much to all those that helped make the fundraiser at the Wequaquet Lake Yacht Club such a success. I know that people worked tirelessly and put our family before their own in many cases. Thanks to all those who went to support our family and to all those who donated items for the auctions, the DJ, and everyone who handled the food and the bar. There have been so many wonderful people taking care of us.

A stranger came to the door yesterday and gave the babysitter a $1000.00 annonymous donation...Wow....People are good.

Thanks to Angels Hopes "Angels" who came and installed babygates for me to keep the little devils safe.

Thanks to our neighbors Dick and Sylvia and the Angels Hope for organizing meal donations.

And thanks to my babysitters who are so important to me right now!!

Thanks to the friends who just drop in and end up playing strolling or giving a few baths.

Aunt Debbie and Uncle Dave will be here monday and Uncle Peter and Auntie Gemma will be back to visit from Hawaii on Thursday.

God Bless all the dads out there, and thank you Poppie (my dad) for all that you do for me. I love you so very much and am so lucky to have you.

Please say a prayer for Dad, Sean and all those suffering.

God Bless, Love, Ellen


Donations can be made to the
The Hanson Children Trust
80 Liberty Lane
Marstons Mills, Ma. 02648
Thank you so much for all that have donated or helped out in other ways. We really appreciate it! Love to all. Ellen

Wednesday, June 9, 2004 11:31 PM CDT

Thursday June 10th 2004.

Hi, the GOOD NEWS is that the MRI is IMPROVED. Thank God, I was worried and could not handle any more bad news. Thank you so much for all those praying for my Sean.
Thanks Papa, its been 1 month today and we miss you so much. Thanks for watching over us. We love you.

Wednesday June 9th 2004

We are home, We are home, Theres no place like home.

It was another harrowing trip to NY. See previous journal for the events of 6/8/2004, (scarey flight to NY)

6/9/2004-Sloan Kettering,I thought our appt was first thing, turns out it is 1030am. I left my phone on yesterdays tiny plane. Lucky for me our friend Courtney (from mass) was working and let me use her phone all day. I arranged a flight on US Air for way too much money (thinking of my sanity and safety), for the way home. MRI went smoothly, but since Sean hadn't any fluids all night, he was slow in the urine dept. Finally they turned up the fluids and obtained the sample but we missed the afternoon flight home. We did get to see some of our Ronald friends and we got to meet our friend Payton, who we had previously known only by internet. Its always nice to put the faces to the names. We also got to see Amelia and her mom Allison again.

We checked out and Bassam, our favorite driver in NYC drove us to the airport. I have Sean, the suitcase, the food bag, the "stuff" bag, the diaper bag and the carseat and stroller. We arrive at the airport at 530pm. for a 730pm flight. So we do security and I get picked with all my goods for a security check. Next I reorganize all the "stuff" and we go eat. Sean soon gets tired/bored. So we walk back and forth for miles (while trying to keep an eye on all my bags.) He does not tire. Finally I notice that my plane is delayed 1 hour. I also notice another plane. Se we grab my stuff and run. I'm so proud of being so cool to figure it out. We board the plane and sit. Its hot. Its boring. And so we wait. Runways backed up they say. And so we wait. Meanwhile Sean is crying and carrying on.
Its really hot. The stewardess Danielle is handing out ice water and cool cloths. Next it is decided that this crew has been on too long and cannot fly. :( We all get off the plane. Kid, carseat, bags, bottles etc.

Next they decide to go to Hyannis and just skip Nantucket.
We board the plane. Its the same plane I just unhooked the kid and carseat from and now I have to put it back and stuff him back in it. The new pilot comes on and says there will be a slight delay. (Not again). Now its even hotter. I take off Seans shirt, shoes, sox. Poor guy is really sweating. I put these and other things on the empty sean next to me. We wait and wait and taxi out and wait and finally my 730p flight-for which I was there at 520p for takes off at 10 pm. and the passengers clap. Soon Danielle is happily delivering drinks, when suddenly....Terbulance!! Well she is falling down, and trying not to spill and I help her with the drinks and she gets a seatbelt on. The drinks spill on Seans clothes and my bags that were on the empty sean. Danielle is ok. I take another ativan as I dont like planes and now Sean is again screaming. After all this time together the passengers and Danielle have bonded. She calls and makes reservations for the stranded Nantucket people. A stranger plays peek-a-boo with Sean. Now we are finally approaching Hyannis. More turbulance. I am praying and hanging on to Sean. We finally hit the ground around 11p. The nice folks all help me carry my "stuff". Now my car is over at griffin air, so Sean with practically no clothes on and I gather the car. Now that he is near naked, its cold.

Anyway, we got home safely, I still hate to fly. My nerves are shot. And I have to wait for test results.

Please God Bless my Sean! And all the other with cancer!
Im exhausted, it was more stressful than Scott getting trapped on the train last time. God bless all of you and please dont forget to sign the guestbook so we know you were here.

Thanks again for all the positive thoughts and prayers.
Good Night, Love, Ellen

Wednesday, June 8, 2004 11:29 PM CDT

Hi, Sean and I made it to NY on the worlds smallest plane.....the adventure continues........The pilot was a lovely man who felt free to inform me that the weather was just the same as when JFK crashed into the sea. He also shared that the engine was due for repair. Then I had headphones on...so I could hear the tower tell us to look out for other aircraft in our area. We even did and "S" turn to see if anyone was in our way. Oh and he told me if I need to grab on suddenly, be careful not to grab the door handle. I considered taking the headphones off, but figured I better be alert to aircraft in the area....and so I took slow deep breaths for 2 1/2 hours. Sean threw up. I strongly considered it. It was hot! He also handed me the map book and had me get out the page for Teterboro (sp?). Probably would be great fun if you were the adventurous type that liked to fly. I AM NOT! Then I left my cell phone on the plane. The most important piece of equiptment (other than the laptop) that I own.

Anyway, the kids are fine. Bassam my driver courtesy of Trudy and Michael is the greatest. Trudy and Michael fed me a great dinner and a nice tall glass of wine. Sean is feeling better and had fun visiting his NY family especially Kit and Annie..............and I am strongly considering an alternate route home! Good Night and God Bless, please pray for good results for my Sean and that we find a safe and peaceful way home!! Love, Ellen and Sean in NY XOXOXOXOX

Monday, June 7, 2004 8:25 PM CDT

Hello, Sean and I are off to NY tomorrow. This time it will be an "Angel Flight" from Hyannis. Trudy has promised to take good care of us once again in NY. Scott A. will stay home with Tiffany and the girls this time and Libby is going to babysit, along with Rose and a few other angels of mercy. Thank you everyone for helping us to have this all go smoothly. I'm only going overnight so I can get back to the kids quickly. He will have an MRI of the spine and hopefully another urine while he is under anesthesia.

Papa-Please watch over all of us, I love you and I miss you so much. God Bless you!!

Thank You, Thank You, Thank You to all the people who are taking care of us right now. We have needed and gotten alot of love and support. Please continue to help us and pray for us. I am not feeling very strong right now.

Please pray for great results for Sean, and for everyone else battling cancer, especially my Dad, Seans Poppie.

Don't forget your lemonade on June 12th. Alexs lemonade stands will be in every state. The closest to us is in Kingston-just off exit 10 at Stop and Shop.

Blessings, Love, Ellen

Friday, June 4, 2004 10:01 PM CDT

Hi, First I want to let everyone know that we are doing ok. We are very thankful to all of the people that have been here for us. There have been friends, family, aquaintances, and strangers from near and far going out of their way to help our family. There are just so many people who are concerned about us and doing everything they know how to take care of us. We very much appreciate all of it~even though I am still teary and don't always look appreciative~Please know that I am, and right now I need all of you.

Sean is scheduled for an MRI of his spine on June 9th. I am not sure how I am getting to NY yet, but I am working on it. Thanks again to everyone who helped with travel and transportation the last time we went. I may leave Scott A. home this time. He thinks the small planes are too slow and wants one that serves food. He says he will be ok, if I bring him home a rescue hero.

Scott asked why the other kids have dads. I explained that some kids don't have dads, or some kids dads live someplace else, and weren't we lucky that God gave us such a nice Papa that loved us and took care of us. I also explained that Papa can still take care of us from Heaven, and Mommy can take care of us here. For now, he seems ok with that. He also chose the cemetary because he wanted Papa buried near Nana Doris (my Mom), where there are stones and flowers and we can find him. We planted flowers together friday and watered them after the Memorial Day Parade on Monday.

Kathleen, Sean and Heather are very clingy. Sean actually wraps his arms and legs around my leg and holds on. Heather holds her arms up with a sad face and says "Mum,Mum,Mum". Kathleen just wants to sit with me. I try to make time to just sit with them everyday. They attack me, each trying to get more of mommy than the others.

Tiffany is working and spending alot of time with her friends. She seems to be doing fine. She is still very involved with church and I think that is just great for her, and helping her to cope.

Papa, I see you everywhere. I miss you so much and it is really hard for me. I don't really think that you wanted to move on to the next life yet. It was so impulsive-I hope that Heaven is really cool and that your spirit can stay with us and that you can take care of us. We still need you and will for a very long time. I love you so much and pray that you are at peace.

Thank you Dad for coming over and holding babies and doing what you can and for just being with me. Thank you Gael, Brian, Katie and Scott for all that you are doing to help me.

Thanks to my friends Libby for just stopping by, for being here, for blowing bubbles with babies, and for bringing coffee. Thanks to Ruth for just being here sometimes and doing whatever needs to be done. Thanks to Rose who is always here for us. Thanks Jen for taking such good care of my big boy Scott. He loves you. Thanks to everyone at Fair Acres for taking care of Scott and for all the help with his birthday-I could not have done it without you. Thanks for my yacht club friends who are planning a fundraiser. Thanks to all Scotts friends in the Carpenters Union Local 624, and all his other construction friends who are doing all that they can for us. Thanks to Angels Hope "angels", and Hospice and Susie from Early Intervention and Cindy from the Baby Center. Thanks to our friends at the bank, at Wimpys, and especially to my special friends and Dads special friends that helped to make the funeral special for all of us. Thanks to all the people who have helped us by making financial donations, sent cards, emails, calls, left messages, etc. etc. Thanks to all my internet friends especially the families dealing with neuroblastoma that have reached out to us. Thanks to all the strangers-who stop- and care. I need you all right now. And I thank you. God Bless! With Love and deep appreciation, Ellen

Alexs Lemonade Stands: Alex will be on Oprah on Monday. Please visit your local lemonade stand on June 12th. The closest one to us is off exit 10 in Kingston at Stop and Shop. Please support the kids fighting neuroblastoma.

Pan Mass Challenge: I have received $500.oo so far, we need $1750.00 to participate. This money goes to Dana Farber to hire a permanent research fellow specifically for neuroblastoma here in Boston. Myfriendsforlife.com
God Bless, Love, Ellen

Saturday, May 29, 2004 4:58 PM CDT

Hi Tiffany (19) did such a great job on the eulogy for her father that I wanted to share it will all of you. She stood in front of a crowed church and shared the story of her dad.
Here it is:

"Before I start I want to say that I may break down. I may start to cry up here, but don’t feel like you have to come lead me away from the pulpit. My father will help me finish this. We have the rest of our lives to get through this and I need to finish this for him.
Scott Edward Hanson was and will continue to be one of the most important men in my life. I wanted to be able to share the Scott Hanson I have known for the last two decades. I wasn’t there with Grammy for the diaper days, but we all know that he never got away from the diapers. I wasn’t there for the high school days, but believe me I have heard stories of canoe trips and skiing off cliffs, I have seen the messages in his yearbook. I can only imagine the stories I will hear of the parties he had and the memories he made with you all.
My father has always been a man of strong and silent nature. When I was a little girl I remember him leading me down the mountain and across the river. He taught me how to ski and swim by testing me a little bit further each time. He would give me the sink or swim glance over his shoulder and I knew my only choice. And if I was too tired? He was there to help me before I even asked. He was always there for me when I wanted a new bike or needed a new dress. But he was also there for me to cuddle on the couch for Saturday morning cartoons. To let me pound nails with his hammer. To fish in any brook, river or ocean.
He did so many things that made him a hero to me. I watched him and was so proud that my dad could build a fort in the middle of all that amazing treasure he had at his trailor. When I grew up and people tried to tell me that he was a junk collector I would have none of it. He could handcraft a castle out of those old tires and and scraps of wood. I remember the gleam in his eye every year when he was able to get the snowmobile going, or he added some new carpet to the inside of the black van he had 8- track and all. He let me think I was the one driving the motorcycle when I was probably seven or eight.
He loved all of his family too much for words and although the Hanson's are not a lovey dovey family he was there whenever we needed him. I remember holiday dinners at Grammy Nancy’s house. Playing cards after the meal and working on that years jigsaw puzzle. As I grew older it was comforting to watch dad fall asleep on the couch with his stomach stuffed and his eyes glazed over. Because that is who dad was. He loved to eat, he loved to cook. We all know that when Ellen was invited to Pampered Chef parties, dad only saw his name on the invite. Dad was the one at the party with the quick one-liners, in and out just to see peoples reactions. He had a dry sense of humor that sent you over the edge.
He was a real life Rescue Hero, a volunteer firefighter with too many friends and smiles to count. So many that some knew him as the governor. Gov knew people everywhere we went. We bumped into people in Disneyworld. And slowly I became Little Gov. For the past few days I have heard so many people say that he was the most skilled carpenter they had ever worked with. I look around the house and I am proud to say that the mantle was something he crafted without plans or instructions, but with his mind and soul. He was a silently devoted son, brother, husband, friend, coworker, stranger and most importantly, to five people in this world, a father.
When he met Ellen I was so excited that he had a girlfriend. She fit right in with the family and his friends in Jackson and Albany, and all the towns in between. When he told me he had decided to move to Cape Cod I was crushed. I begged him to take me with him. He didn't cave. However a few months later I received even better news than a new girlfriend. I was going to have a baby sibling, Junior. The wait for Junior was aweful, but my dad was amazing. I believe at that point he was working for Peacock and Crosby. I don’t know why, but it always made me so happy when I knew my dad had friends. In May of ‘99 Scott Andrew was born. A little less than a year later I moved to Cape Cod to finally be with my dada again, only this time I had a baby brother. Dad loved Scott so much. Little Scott followed him around and quickly learned his way around the tool shop.
Needless to say the stork enjoyed the Hanson household. We received three more packages on October 8, 2002:Kathleen, Sean and Heather. They are so young, and so is Scott, but they are all pieces of my father sent here from heaven for a reason. We will miss the trip to Hawaii to see Peter and company that we never had. We will miss the bike rides. We will miss the no-talking. We will miss the trip to Ireland. Heather, Kathleen and I will miss him at our weddings, when someone else is walking us down the aisle. Sean and Scott will miss their father-son talks. But not forever. Because Dada, Papa, Daddy will be with us forever. He will be in our hearts, souls and minds. He will be in the stories and the words unspoken. Because in reality he will be in everything we see forever. He will be in Ellen’s eyes when she smiles or cries. He will be there when we are hurt, scared, angry or mad. And he will be there when we are happy. Because my father, your husband, your son, your brother, your uncle, your friend was never selfish. Now all we can do is let him live on for the triplets, for Scott, for Ellen, for me. When I look to the sky I will see my father with the Heavenly father and I will pray to them both. I might only get a grunt from Dad, but we all know that meant he loved us."


To see Seans recent test results (all good) read previous journal.

Please sign the guestbook as it really means alot to me to know that you were here checking on us. God Bless you all, Ellen

Saturday, May 29, 2004 5:04 AM CDT

The results of Seans urine tests are in VMA is 10 (<12 normal) (April was 10 and Feb was 13) HVA 22 (<29 normal) (April was 18 and Feb was 25). These are good. Dr. L says the renal scan may be as good as it will get due to effect of the tumor. Next MRI of the spine in June 9th. Thank you to everyone who is helping me to keep going. Right foot...Left foot.....Marching on.......Love you, Ellen


Thursday May 27,2004 4:07PM CDT
I have the result of Seans renal scan. I have not spoken to the doctor but it does say it is "Improved". I believe he still has some reflux and will probably still need prophylactic antibiotics, but this is very good news. Thank God. Urine catecholamines are still pending and his next MRI of the spine will be June 9th. Thanks to all of you who are taking care of all of us. God Bless you!! Love, Ellen


Monday May 24, 2004 6:35am CDT
I know this page was meant to be about Sean, but we are all a part of Seans family. What happens to one effects us all.

HAPPY BIRTHDAY SCOTT ANDREW HANSON!!
Today is Scotts 5th Birthday. Today is the day that Scott E. (the papa) and I became a "family". The day that made the #24 special to us. My birthday is the 24th of November, We got married on August 24th on purpose. We joked that Scott E. would remember the special days. The babies were born on the 8th of October (8x3babies=24). All I ever wanted was to be a family. My Scott gave me that gift. I wish you were here to celebrate with us Papa. I miss you so much. I love you so much. I will be strong today for our Scott. I will think of you coaching me through labor and then wearing my flowered pajamas and being there because I did not want you to leave without me. God Bless you Papa! God Bless my Little Scott!
Happy Birthday Baby, Mommy and Papa love you so much.

These days are hard. The babies all want mommy and push each other off my lap for more mommy for themselves. Then Scott needs me to help put his new toys together or play a game. My sister Gael helped me with breakfast. Thank goodness for friends and family. Yesterday it seemed everytime I was about to dissintegrate, friends showed up. Dad stayed all day. Libby came when I called her emergently in the morning. I had a nap in the morning and gained my strength. I helped Scott ride his new bike while Tara our 6 year old cousin pushed the kids in the stroller. Jane and David showed up just in time to finish doing Dad stuff like putting birthday toys together. They helped with dinner and pajamas and babies and bottles. And we survived another day.

I have great support from my neuroblastoma internet friends. I have not met them in person, but they have been there for me. Some check on me daily. Some have send donations or cards. Many have been through the grief of loosing a child. And all are dealing with the grief of illness. God Bless you and thank you for being there for me and for my family.

Please continue to pray for Sean, for our family, for our friends and for all who are suffering. God Bless You.

Love, Ellen

Donations can be made to the Hanson Childrens Fund 80 Liberty Lane, Marstons Mills, Ma. 02648

Friday, May 21, 2004 1108 PM CDT

Hi Everyone, Seans tests went well in NY. The preliminary report was good but it has to be read by radiology. A urine test was obtained but takes awhile for results. Tiffany was able to see a little of New York. Scott got a new rescue hero from the wonderful childlife people as Sloan. He also had a nice birthday cake there. He also got another rescue hero vehicle at Toys-R-Us.

The plane ride went smoothly and was so convenient to go to and from Hyannis, what a difference that makes. We had a very nice driver which was a Godsend (esp. since it rained-alot!)

We were able to spend some time with close friends which was wonderful for me.

I am happy to report no difficulties with this trip. (Very unusual for our trips to NY, as many of you know.)

I miss Scott terribly, but know that I am blessed in so many other ways. I am tired and sad. I know that God has a plan and I need to have trust in him.

Dad had his CT and the tumors have grown some. 5 weeks till the next scan and developing a new plan. Maybe low dose chemo or something new.

Thanks for thinking of us and checking on us. God Bless, Love, Ellen



Tuesday May 18, 2004 316am. CDT
Dear Papa Scott, I miss you more than words can say. I love you so much. We had so much fun together from the day we met. You took great care of us. You are handsome, strong, funny, talented and I feel blessed to have known you and to have shared our lives together. I am so grateful to have the children~for each is a part of you. I hope that your spirit can be with us each and every day and night. Please watch over us, especially our Sean, and help me to get through our time apart. God Bless you Papa. I know that you are at peace in Heaven. I love You! Ellen

The funeral went well and Tiffany gave a beautiful eulogy. Thank you all for all your thoughts and prayers. Thanks for the donations, meals, flowers, for listening and for the hugs. Please continue to be there for us, as I am sure I am going to need alot of love and support and help.

We are all set for Sean to go to NY on Wednesday for his renal scan. Scott A. will come with me and this time Tiffany will too. She will be able to see a little of NY, and see some of her fathers favorite places. We have been blessed by someone who is willing to fly us right from Hyannis to make the journey easier, andP someone to meet us when we arrive.

Our friend Libby will stay with the girls at night and of course we have Rose, Kathy, Kate and others pitching in.

Thank you to the people of Angels Hope and The Baby Center for all you do.

Thanks especially to my brother Brian and my sisters Gael and Katie, my Dad and Scotts family for helping me through this difficult time.

Please pray for my Scott. Please pray for our family. Please pray that Sean continue to have good results from his tests and that he be cured of cancer. Please pray for Dad, his CT is this week also. Please pray for me to have the strength that I need to carry on.

Please pray for all those with cancer and illness and their families, and for all the families of multiples.

Memorial donations can be made to The Hanson Childrens Fund, 80 Liberty Lane, Marstons Mills, Ma. 02648

Thank you and God Bless you, Ellen and the kids.

Wednesday, May 12, 2004 3:39 AM CDT

It is with great sadness that I share with you all the loss of Seans father Scott Edward Hanson on May 10, 2004. He was the love of my life. I will miss him so much. I thank God for the children, for each is a part of my Scott. Funeral arrangements are at John Lawrence Funeral Home in Cotuit, Ma. Visiting Hours are Thursday 2-4pm and 6-8pm. Funeral Mass at Our Lady of Victory Church, Centerville, Ma. on Friday at 11am. followed by a reception at Wimpys Restaurant in Osterville. In lieu of flowers donations may be made to the Sean Michael Hanson Cancer Fund or the Hanson Childrens Fund-80 Liberty Lane Marstons Mills, Ma 02648.
Thank you for your messages of condolences and for being there for me and the kids. God Bless You! Love, Ellen

Sunday, May 9, 2004 10:51 AM CDT

HAPPY MOTHERS DAY!

Love, The Hansons

Sunday, May 2, 2004 10:37 AM CDT

Hooray! Hooray! The first of May!

Here is the latest from the Hanson Household.

Sean-We will be going to NY for a Renal Scan with anesthesia on May 19th. Now I can plan the trip and babysitters etc. We will also get another urine for catecholamines and he will get his portacath flushed.

Dad-Continues on Iressa for lung Cancer, and is feeling well. His next CT scan is May 20th.

Grammy-Came to visit! We always go to Cookes when Grammy comes to visit so she can get some fried seafood-so thats what we did! It was great to see her and she was able to spend some time with the kids.

Tiffany-Celebrated her 19th Birthday on Wednesday, as did her cousin Keith. Happy Birthday Tiffany and Cousin Keith.

Scott A.-Has started swimming lessons at the YMCA. I figure he better get a head start before we go to the lake with the kids and I can't watch them all. AAAHHHHH! Scott will be 5 on May 24th, and is looking forward to his big day!

Kathleen, Sean and Heather-The kids are getting out more thanks to the nice weather. We have gone out to eat, to the beach, for walks to see the horses (at the end of our road), for ice cream and out running loose in the yard-If I have a helper handy. (I have to get a fence!!)

Scott and Ellen-We seem to have entered fundraising mode. Because Neuroblastoma is a rare Cancer, it is poorly funded. Research is needed to find a cure. There is currently No accepted protocol for relapse. These children often relapse in the first year!
We also will be going to a Conference for parents of children with Neuroblastoma in Chicago July 22-25th. I look forward to hearing what the medical experts from around the country have to say.

Angels Hope Walk-May 8th at the Harwich Community Center.
A 4 mile walk of Hope. We will all be walking. To sponsor us or to walk, send me an email for more info, or check link below.

Pan Mass Challenge-Our good friend Scott Leroux has volunteered to ride in the Pan Mass Challenge August 7, 8, 2004 in honor of Sean. This is primarily a fund raiser for Dana-Farbers Jimmy Fund. Scott has joined the team "Friends for Life". This team has the goal of raising 1 million dollars this year to fund a full time research position at Dana-Farber specifically for Neuroblastoma. To participate riders must contribute $1750.00 for the one day race and $2750.00 for the 2 day race. I think that "Friends for Life" has about 70 riders on the team this year! We are very excited about this. To help give kids hope for the future, contact me by email or for more info click on the link below.

Alexs Lemonade-Alexs lemonade stands will be set up in all 50 states on June 12th. Alex is an 8yr. old girl with nb who started her lemonade stands to help kids with cancer at age 4yrs. Please support your local Alexs lemonade stand. For more info, check alexslemonade.com

Thanks for all your prayers and support for Sean and for all the children and families dealing with cancer.

God Bless! Ellen and Scott

Saturday, April 24, 2004 6:07 AM CDT

We had a great school vacation week. Last weekend we visited the Zooquarium. Sean liked the sea lion show the best. The kids were very good and we took them out to lunch at Captain Parkers after the show. Scott thought we should go back after lunch. Next we went to the beach to fly a kite. This was great fun for everyone.....until.......the wind took the kite right out of Papas hands and it flew out to sea. I told Scott that King Neptune needed a new kite for Ariel. He thought King Neptune should have taken his other kite! Sunday we drove down 6A toward Nauset Beach. We took pictures at the beach and with the lighthouse. Monday we went to fly "the other kite", but it got cloudy and suddenly very cold. The kids watched from the car but still seemed to enjoy it. Next we went to eat at Cookes Seafood and once again, they were very good. Thursday I took Scott A. to Scooby Doo 2 and I was surprised to see that Peter Boyle (who Sean and I just met in NY) was in the movie as Old Man Wiggles. I was all excited trying to explain to Scott who he was. Thursday night I took the kids to Spagetti Night with Daphne and Alex, Lorel and Alysa. This seems to be becoming our weekly routine. Friday I took Scott to the Science Museum in Boston to see "Dinosaur Bones". We left late, the dinosaur section was a little disappointing and my digital camera seems to be broken. The museum is a little too old for him and we probably should have gone to the Childrens Museum, but he had his heart set on seeing dinosaur bones and so we did. Next time its the Childrens Museum or the Aquarium.

I heard from Dr. LaQuaglia and Seans next Renal scan will be some time in May~this time with anesthesia, not the sedation-which didn't work last time. He won't have another MRI for 2 months to evaluate the residual tumor in his spine.

Dad seems to be doing fine on the Iressa for his lung cancer.

Grammy is coming to visit next week.

Thanks to Ruth for delivering our dinner last night-Yeah!

Thanks for all the prayers and support for Sean and for our family. Please continue to pray for all the families dealing with cancer, especially the little children.

God Bless! Ellen and Scott

Reminder:
Angels Hope will be having their 4th Annual Walk of Hope Saturday, May 8th 10:00am. Sign-in begins at 9:30 Harwich Community Center-see link below for more information or feel free to contact me.

Pan Mass Challenge/Friends For Life-Our friend Scott Leroux has volunteered to ride in the PMC 8/7, 8/8, in honor of Sean. We need to raise at least $1750.00 for him to participate. Funds from friendsforlife team will go to fund a full time research position at Dana-Farber specifically for neuroblastoma.

Thanks for helping us give kids hope for the future!

Saturday, April 17, 2004 1:56 AM CDT

SEANS GREAT NEWS!!!!!

First of all, My favorite surgeon, and favorite doctor of all time, Dr. LaQuaglia called me the other night at 9pm. after operating all day to let me know that Seans MRI was actually IMPROVED! I felt so much better, and cannot tell you how much it means to me that he took the time to call me.

Next, Renooka and Elsa who are secretaries at Sloan, emailed me the urine for catecholamines result that we had been waiting for.
VMA is 10 (normal < 12) (It was 13 in Feb.)
HVA is 18 (normal < 29) (It was 25 in Feb.)
As you can see these numbers are 1. Within the normal range
2. Continuing to improve

I am thrilled, I always get nervous as we approach scan time, as much as I am glad to have them and know what is going on inside.

Thanks to everyone who babysat and helped out last week so that I was able to go to NY. Tiffany, Lorel and Alysa, Daphne, Joyce, Bob and Loli, Rose and Rachel.

Dad has started on the new cancer drug Iressa. "IRESSA is the first in a new class of cancer therapies. It is the only treatment indicated for patients with locally advanced or metastatic non–small-cell lung cancer (NSCLC) after failure of both platinum-based and docetaxel chemotherapies." Dad has only tried one type of chemo but did not tolerate it very well and so has decided to try this. It is given as one pill/day and therefore he can maintain his quality of like and carry on like usual. He can always do chemo later if he needs to. He is feeling great, except for being a little tired. Please say a prayer for Dad that this new chemo can buy him some more quality time!

Please pray that Sean continues to have regression of this dangerous tumor.

Also please pray for Jordan Luke, who lost his battle with neuroblastoma this week, and for his family. He was the same age as my Scott A. (Almost 5yrs.), and an only child.

Jordan's Rules: Let your children sleep in your bed, let them make messes, have more patience, don't take anything for granted and tell them you love them all the time.
http://www.caringbridge.org/tx/jordanluke

God Bless all the children and families dealing with cancer and God Bless all of you!

Lots of Love, Ellen

Sunday, April 11, 2004 9:05 PM CDT

Happy Easter! I hope the bunny was good to everyone. We survived NY as usual. I'll update later! Hop, Hop, Hop!
Ellen

We always have an adventure in NY. For starters, Scott A. developed
a temp of 103.6 and could not come to "New York City". He was very
disappointed, and of course I hate to leave him sick. Next Scott E. helped me onto the train, I took the acela at twice the price to save 1 hour on a train w/an 18mo. old. The door closed on Scotts face! Being the faster
train......there are no stops for 1.5 hours....and so he had a free ride to Conneticut and back to Providence RI. (3 hours) Turns out the return train was a "slow" train....and then still had to drive 1.75 hours home. Meanwhile babysitter is only there till 7pm, etc. All that worked out and I actually arrived in NY before he arrived home from driving me to the train!

Thursday we spent at the clinic. Sean had all his sedation meds (which included suppository). This proceeded in making him poop out the medication........three times.......all over the only jeans I brought...(packing light)..and my sweater, his sox, etc. All the diaper changing counteracted the meds. He then had more and more and more medication (IV) until he was nodding and cross-eyed....but would not go to sleep. Finally, we gave up and cancelled the test.
Oh, I forgot to mention the poop mess "unglued" the urine collection bag and
we gave up on that too! Friday is another day! Friday is anesthesia
instead of sedation! YAHOO! On a positive note, Scott A. was feeling ok and the fever is a little less which makes Mom feel better. Sean got to meet Peter Boyle of "Everybody loves Raymond" and have some pictures taken...........I gave Peter Boyle my gold ribbon pin in hopes that he will wear it. And most importantly, Sean met the Easter Bunny, who he is just in love with! He still didn't fall asleep until 10pm. I couldn't believe it! I guess he loves NY and doesn't want to miss a thing! Had to be at clinic at 7am Friday for the
MRI of the spine to eval residual tumor. (The other was the less important
renal scan)

Friday was a better day for Sean. Urine collection obtained, Mri obtained.
Urine is pending. MRI is very preliminary reading......unchanged. Really need to wait for official reading this time around. Plan is to repeat in
June. (unless "official" reading or urine say otherwise I guess). Overall,
not a bad report so far. Scan was done at 130pm-waited all day to talk w/Drs.
but glad to have a small piece of their time and to get preliminary
result...........got to Ronald at 6pm. Scott still had very high fever, went to
the pediatrician again....all seems ok....continue motrin and call
monday if its still up.

Saturday, I got up early and was able to clean the room while Sean slept (for the most part.) I took a car to the train and had a red cap help me with the luggage. Good thing, as the elevators seem to always be broken at Penn Station. He used a key to make an escalator reverse direction and I had to take Sean and the stroller down the up escalator...IN the stroller.. and run to make the train. The train ride was uneventful and Sean even slept part of the way. Scott met me us in Providence-but stayed far away from the door to the train!! I was so glad to be home.

Sunday, the Easter Bunny came while we slept! He left lots of goodies for everyone. Scott A.(seems to be over the fever) and I went to church and were surprised to see the Bishop was saying mass. We made it home just in time to put the new Easter outfits (Thanks to Aunt Stephanie and Daphne) on the little kids and beat the raindrops to the hidden Easter Eggs! Scott A. found all the Eggs and was very proud of himself. He was also very good about sharing. They were all so adorable with their little baskets playing in the yard. Poppie joined us for Easter dinner-most of which Scott prepared.

Poppie said Grace and prayed that we can all be together again next year.

God Bless you all and Happy Easter from the Hansons!

Love, Ellen

Tuesday, April 6, 2004 06:52 AM CST

Hello, Sean, Scott A. and I will be going to NY on Wednesday for Renal Scan on Thursday and MRI of Spine on Friday. We will also do another urine test for catecholamines. Scott will stay home to work and take care of the girls. Please pray for more good test results for Sean and for a safe trip. Happy Spring! Love, Ellen




Sunday, April 4, 2004 1:40AM CST
My Best friend and Seans Godmother Stephanie died on Tuesday. These are the words to one of my favorite songs.

Stephanie
December 12, 1960-March 30, 2004

One Small Star

When I need to feel you near me
I stand in this quiet place
Where the silver light of countless stars
Falling on my face
Though they all shine so brightly
Somehow it comforts me to know
That some that burn the brightest
Died an eternity ago
Chorus
But your light still shines
It's one small star to guide me
And it helps me to hold back the dark
Your light's still shining in my heart
I'm learning how to live without you
And I never thought I could
And even how to smile again
I never thought I would
And I cherish your heart's memories
Cause they bring you back to life
Some caress me gently
And some cut me like a knife
Chorus
Can your soul be out there some where
Beyond the infinity of time
I guess you've found some answers now
I'll have to wait for mine
When my light joins with yours one day
We'll shine through time and space
And one day fall on a distant age
Upon some stranger's face
But your light still shines
It's one small star to guide me
And it helps me to hold back the dark
Your light's still shining in my heart
Your light's still shining in my heart
lyrics: John Mcdermott

GOD BLESS YOU AUNT STEPHANIE, I LOVE YOU!
SEAN MICHAEL HANSON
XOXO

Tuesday, March 30, 2004 1037 PM CST

My best friend and Seans Godmother Stephanie-(43yrs.) suffered a massive stroke Friday night. She had additional bleeding into her brain, Sat and Sunday. She was taken off life support on Sunday and passed away today. Please say a prayer for peace and comfort for her family. They are also my family. Thank you and God Bless. Ellen


Friday, March 26, 2004
Hello, Its been kind of an eventful week around here. The kids have all been sick. Scott A. has an ear infection, developed a rash from the Amoxicillin and is now on Zithromax. Being slightly brain damaged and doing too many things at once I actually gave him at least one more dose of Amoxicillin AFTER he developed the rash! OOOps! Anyway, I gave him some benedryl and despite some itching he is fine. Kathleen has chest congestion and so many "crackles" they can't be sure if it is pneumonia so she is on Augmentin. Sean also has an ear infection and is on Augmentin. Heather was fine but now also has a cold. Kathleen is coughing and then vomiting and come to think of it, Tiffany told me Heather vomited yesterday too. That means that I have been cleaning up after spitting up kids since march 1st, and that is without chemo! Otherwise, the kids are fine!

Dad had his CT yesterday (lung cancer), his tumors have grown slightly. Now we have to decide what to do next. He does not tolerate the chemo well at all, I'm not sure it buys you alot of time and therefore may have more cost that benefit. He can try Iressa which insurance won't pay for as second line treatment-so we have to find funding. I think the statistics I saw said it can shrink the tumors in 10 percent of people. It is a pill and has few side effects so he can continue to do his thing and enjoy quality of life.

Please continue to pray for Sean and all the others with cancer and their families. God Bless! Love, Ellen

Friday, March 19, 2004 2:33 PM CST

Hi, Scott and I were able to go to a conference on Neuroblastoma last night at DFCI. It was sponsored by Friends for Life. (www.myfriendsforlife.com) Denyse and Mike Dodd, whose daughter has nb. They have started a fund to create a fellowship for a full time research scientist who will develop more effective txs for nb for perpetuity. The 5yr. goal is one million dollars, and in 2yrs they are more than 1/2 way there. Dr. Lisa Diller of DFCI spoke as well as Dr. Rodney Stewart a Biologist. It was very interesting and we were able to meet a few people and learn more about neuroblastoma.

Please say a prayer this week for Sophia. She is from Bridewater and has just relapsed with nb.

Please say a prayer this week for Cierra who lost her battle with nb on 03/17/04.

Please say a prayer this week for Robyn Brooks from the UK. She also lost her battle on 03/17/04. It is her family that helped me into Ronald McDonald house in NY when I was stranded with sleeping kids in a taxi on my last trip. Her relatives took great care of me. One carried Scott to the 4th floor and put him in his bed. The others helped me with my bags so I could take care of Sean.

Please pray for a continued effort and for support and funding to find a cure for this disease!

Thank you to Daphne, Lorel and Alysa for taking the kids to Spaghetti night so that we could attend the conference. Thank you to Rose who is always there for us. Thank you to Rachel for all her help this week with babysitting.

Thanks to Debbie Riggs from Angels Hope and Sylvia and Dick next door for providing some dinners for us this week.

And Bless and the children and the families fighting this difficult battle. God Bless you all, Ellen and Scott Hanson

Wednesday, March 17, 2004 11:28 AM CST

HAPPY ST. PATRICKS DAY!!

"LET ANGELS STAND GUARD UNTIL IT'S TIME TO RISE AND SOFTLY SING IRISH LULLABIES".


GOD BLESS YOU ALL!

ELLEN AND SCOTT HANSON

Sunday, March 14, 2004 7:46 AM CST

Hello Everyone, All is well here. Scott and the babies are all over a stomach flu or maybe it was two stomach flus.....as they all took turns getting sick for over a week. No big deal though, I am actually getting really good at it. We went through lots of pediatlyte and rice cereal. Everyone is better now. Yesterday was a little warmer and Scott got to play outside for awhile while Scott replaced a piece on the car. Then we all went to the mall. Its fun to hear what people say when they see the triple stroller. Scott can talk to all the grammies while I can run in the Gap and see if they are having a sale. No luck with the sale part yesterday, but at least the kids get out. Next trip to NY is April 7th or 8th. Maybe we will all go as it is school vacation and Easter weekend. It is also easier to have another grown-up with me. I'm not sure about bringing all the kids but we need one stroller anyway, we will just bring two. Have to check the weather. That would really be something-taking apart the triple stroller to get in a cab! Hope everyone has a Happy St. Patricks Day! There are some new pictures in the photo album. Thanks for all the thoughts and prayers, to Angels Hope and our neighbors Dick and Sylvia for some dinners, and thanks for checking in on us. Please don't forget to sign the guestbook so that we know you were here!! Love to all! Ellen and Scott

Monday, March 8, 2004 7:12 PM CST

Hi Everyone, Thanks for checking in on Sean. He is really looking and feeling Great! I finally got the urine results from February. The VMA was 13 (<13) and the HVA was 25 (<33). The doctor considers these normal. In January it was VMA 12 and HVA 28. He will be going for a Renal Scan (to check kidney function) and MRI of the spine (to check on residual tumor) April 9th. We will go to NY for these, as we are still dealing with the renal issue. He has hydronephrosis (enlargement of kidney) on the left side but last time we checked he had good kidney function. If he were to need kidney/bladder surgery, I would stick with our very talented and gifted surgeon Dr. LaQuaglia. I really don't think he will need it though if the function is good, and he does'nt have frequent infections or anything. Once we are just having xrays I will probably get them in Boston. Hopefully this will be soon. Maybe the next set of tests. He is supposed to be on every 3 month scans but we have ended up in NY every month except December so far for one reason or another. Luckily, we continue to get good news despite the minor scares.

Dad has his next CT scan (lung ca) 3/25 and is feeling well.

Tiffany is enjoying her new job at the pizza shop. Kathleen has had a little bug and been vomiting occasionally. Heather is fine. Scott A. has been busy with his (almost 5yr. old) social schedule of birthday parties. Scott has been working and we have both been busy feeding, changing, playing and cleaning up after babies.

Please continue to pray for all the children and families with cancer and please say a special prayer for my friend Mike who lost his 6 day old son this week. God Bless you all. Love, Ellen

Sunday, February 29, 2004 11:41 PM CST

Wednesday, March 3, 2004
Hello, I just received a call from NY and Seans next MRI of the spine will be April 9th. I'm glad its not too far away. He will also have another urine for catecholamines at that time. Looks like Easter will be on Cape Cod for us.
Thanks for cheking in on Sean. Love, Ellen


Sunday, February 29, 2004

Hi, Well we have recovered from our trip to NY, and everything here is back to normal. I received word from NY that Seans urine test for catecholamines was "normal". I haven't gotten the report yet but that is very good news as the tumor cells secrete catecholamines. I don't know when the next scans will be, probably March or April. Maybe both as he needs anesthesia or sedation for each and has 4 scans to do. I am also looking into a second opinion at Childrens in Boston. Now that I don't think he will need kidney/bladder surgery we could get scans in Boston and have them sent to New York. He is feeling fine and looks great! Friday Auntie Katie and Uncle Scott were here with cousins Lauren and Holly. We went out to dinner at Wimpys with Poppie and had a nice time. We were a sight with the 4 high chairs and a booster. Tiffany got a job at a local pizza restaurant and seems to really like it. Today we ventured to the mall. Mom has cabin fever and I'm sure the little ones do too. Scott got another new Rescue Hero-which can keep him busy and happy for days. Kathleen, Sean and Heather just liked to look at all the people and activity. It was "Family Days" or something like that, so there were balloons and clowns and lots of kids. We took them to eat at Fridays and they were all very well behaved. Next we stopped to see our friends the Thomas's and played with Drew and Nathan. They never even took a nap, and went to bed early. I just hope they sleep through so I can! Please continue to pray for Sean as neuroblastoma is a very sneaky cancer. Also please pray for all the other children and families dealing with this cancer. Some of the other kids are really having a difficult time with it right now. Thanks again to everyone for checking in on us, and thinking of us. God Bless You!
Love, Ellen and Scott

Monday, February 23, 2004 3:48 AM CST

Hello- We had a safe trip to New York and Sean had more good news. He had surgery with Dr. LaQuaglia on Wednesday. The doctor was able to remove the left ureter stent and did not need to replace it. There is probably some reflux, so Sean will stay on prophylactic antibiotics. He will have a repeat renal scan in a few months when we do all his other scans. (MIBG, CT, MRI) Actually, we may split them up into two trips because he needs anesthesia or sedation for each xray. He also had a urine test for catecholamines (which the tumor cells secrete). This result won't be back for a week. Scott A. came with me, as it was school vacation and it makes the babysitting situation a little easier at home. He is very good at the hospital and seems to enjoy the toy room, which is great as there is alot of waiting that goes on. Tuesday night we were tired as we had gotten up so early for the trip. Luckily for me, there was a dinner at the Ronald McDonald House. Sheila, who's teenage daughter Eileen has Ewings Sarcoma, helped me with the kids and I am grateful. She held Sean while I got dinner for Scott and I and he fell fast asleep in her arms. As soon as Scott ate, his eyelids also became very droopy and I took the rest of my dinner back to the room. Wednesday after we left the hospital we went to Times Square to Toys-R-Us. Scott spent alot of time choosing a new Rescue Hero. We hid from the very hungry looking animated T-Rex and checked out each level of the store. We started heading home (RMH), and walked over to see the skaters at Rockafeller Center. Then we threw pennies in a giant fountain and made lots of wishes. Next I thought we should catch a Taxi to make it back in time for another dinner and a magic show. Well, it happened to be rush hour and I could not get a taxi. Maybe it was the wrong "hailing" technique. A nice man offered to hail me a taxi..no taxi...no taxi...no taxi. This went on for about 40 minutes. By now it is starting to get really cold. We applied the mittens, Sean was asleep in the stroller and Scott was again having trouble holding his eyes open and standing up. (We had gotten up at 5am. for surgery.) I was begging him not to fall asleep. Now I was having a taxi "emergency". Eventually the nice man even walked over to another street, got me a taxi and rode back in it to where we were. He ran off, so that I could not compensate him in any way. The elderly cabbie did not offer any assistance and so I had to hail another Knight to help this damsel in distress.....I loaded Scott in the cab and held Sean while he helped me in with the stroller and the bags. We arrived at RMH with both kids still sound asleep. Luckily, a very kind family from London was just entering the building. I hailed yet another Knight, who had to carry Scott to our 4th floor room and put him in his bed. I took Sean and the ladies carried my bags. Next I snuck down for a "to-go" dinner and to my delight, there was no soda, only Budwiser! Scott awoke, we missed the magic show, but he was fine with his new Rescue Heroes movie. In the morning-we cleaned our room, which is required. It is difficult with children in tow. I can't imagine if one was sick from chemo. (Thank God, mine are not.) Next we boarded the train for home. I had the computer and a movie and we had snacks and Scott had a nice ride. Sean however threw up all over himself and the stroller. Of course, I did not have a change of clothes available and had to dig into the suitcase and change him from head to toe. Scott met us at the station and I was very glad to see him and have help from my own Knight-with the kids, the stroller, the suitcase and all the other bags (diapers, babyfood, etc.) that I was carrying. I don't think I would like to live in New York City with kids. We got home and a nice meal was delivered by our friend Debbie, from Angels Hope. She lost her 2 yr. old to a brain tumor. Thanks again to everyone who is praying for Sean and our family, to our friends at Angels Hope, and especially this trip to all the strangers who helped me along the way! Please pray for all the little children with cancer and their families. God Bless! Love, Ellen Happy to be Home Sweet Home!

Monday, February 16, 2004 3:55 PM CST

Hi, Sean, Scott A., and I will be off to New York in the morning. We will leave here around 430am. to make the train and get to NY for pre-op testing. Scott A. has big plans to visit the Toys-R-Us in Time Square to purchase a new Rescue Hero. Sean is having surgery on Wednesday (cystoscopy). Hopefully we can come home Thursday am. He will also have another urine test while we are in NY. Please pray that we get more good news, have a safe trip, and also please pray for all the children that have cancer. Thanks, I'll let you know how it goes. God Bless! Love, Ellen

Saturday, February 14, 2004 6:29 AM CST

HAPPY VALENTINES DAY!!



HOPE YOU ALL HAVE A LOVE FILLED DAY WITH ALL YOUR VALENTINES.


WISHING YOU CHOCOLATES AND FLOWERS, KISSES AND HUGS, PEACE AND COMFORT.


MUCH LOVE,
ELLEN AND SCOTT
TIFFANY, SCOTT A., KATHLEEN, SEAN AND HEATHER

Friday, February 13, 2004 11:26 AM CST

Hello
Dads tests went well, the CT of the head was good and the chest CT was ok. 2 tumors have not increased in size and 1 has increased only slightly. He will have follow up scans in 6 weeks. No treatment for now. Yeah! We are getting ready for New York next week, lining up baby-sitters, and doing laundry. We are also getting ready for Valentines Day. Scott and I made cupcakes for school and we are decorating. Sean and Heather are still on antibiotics for ear infections and Kathleen seems to be teething..I hope thats all it is...but they are all fussy at times. It's probably also cabin fever which we have had alot of lately. Scott A. will come with me to NY as it is school vacation. He wants another rescue hero from New York City, as he calls it. We hope everyone has a very Happy Valentines Day! Thanks for all the thoughts, prayers and wishes! Please say a Prayer for Luke and Brady who passed away this week from neuroblastoma, and for their families. Love, Ellen and Scott

Wednesday, February 11, 2004 7:49 PM CST

Hi,
Seans cold seems better but he still has an ear infection. We have changed antibiotics. Meanwhile, the wheezing is gone and so we have been able to reschedule his surgery (cystoscopy) for next week. We will probably go to NY on Tuesday for pre-op testing in the afternoon and have surgery on Wednesday. I might bring Scott A. (4yrs) with me if he wants to go, as it is school vacation week. I like NY much better in warm weather though. Its hard to get around with the stroller and gear and warm clothing etc. Heathers cold is better too, and Kathleen didn't get much of a cold this time-thank goodness.
Dad has his follow up CT scan tomorrow for lung cancer, as well as a CT scan of the head. Hopefully he will get more good results.
Thanks for all the folks thinking of us and praying for us. A neighbor brought all the kids "Happy Bags" today with hats and blankies and goodies for each child. And please say a little prayer for Dad and for all the other children with cancer.

Thanks again, Love Ellen and Scott

Sunday, February 8, 2004 10:14 AM CST

Hello, Sean is feeling much better from his cold, Heather is too. Kathleen seems to have escaped this one! Scott A. is all better too! The babies are really starting to interact with each other. It is so cool to watch. It's sunny but cold today. We have a bit of cabin fever and so might take the kids for a walk. We will call Monday and see if we can reschedule Seans surgery. I'm anxious to see if something else can be done for his enlarged kidney. (It is functioning, thank goodness.) He will also have another urine test for catecholamines-which the tumor secretes. Please continue to pray for Sean and for all the kids with cancer. Don't forget to sign the guestbook so that we know you were here! Continued thanks for all the support, thoughts, prayers, babysitting, etc. Special thanks to the volunteers of Angels Hope who are providing some delicious meals to us.

Love, Ellen and Scott

Wednesday, February 4, 2004 9:29 AM CST

Hi, Seans trip to NY this week for cystoscopy has been cancelled. He has a cold which he probably got from Scott A., and he is wheezing. The doctors don't want to put all the chemo kids at risk and it is an anesthesia risk for Sean, so we will have to reschedule. Heather also has a cold. Scott A. is feeling better and went to school today. It is "Pajama Day" and he looked so cute in his jammies with all the other kids...very hugable. Sean and Heather are both on antibiotics and Sean is on Ventolin nebulizers for the wheezing. Otherwise everyone is fine and the little people are climbing and crawling and running and continuing to get into mischief. I bought them some nice harnesses, which we will call "angel straps", as my mother did, with Elmo on them! Safety First! Please pray for all the children who are battling this disease-most are stage IV when they are diagnosed and many are in the High Risk category. Thanks, Ellen

Wednesday, February 4, 2004 9:21 AM CST

"1/30/04-Hello, I finally got a secretary to read me the reports. The CT says no evidence of recurrent or persistent tumor...bla ..bla..bla and the MRI says something about improvement since scan of 11/21. Yahoo!! Now I really feel better. Please keep praying for continued good news for Sean. We go to NY again next week for minor surgery to assess his kidney/ureter/bladder function on the left side. He may still need another surgery-that I can handle!! :) Love to all, Ellen"
1/30/04 3:54 PM



"01/28/04-Hi, still waiting for "official" results. I got an email forwarded that tells a secretary to "fax" them to me. Too bad I don't have a fax....couldn't be bad news I guess......Hopefully someone will call me tonight!! I will have to email the secretary! Sorry, I'll post something as soon as I know. Ellen"
1/28/04 1:16 PM


"01/21/04-Hello, Good News, Preliminary readings suggest that the tumor is regressing, also the urine tests from last week have gone down to within normal limits. Plan is to check the kidney stent on 2/6 and repeat the urine tests. We need to wait for "official" readings but will prob recheck scans in 3 mo. Yahoo! Love, Ellen and Sean-heading home in the am."
1/21/04 5:53 PM


"01/21/04-Sean and I arrived in NY by private jet from Hanscom Field this time. We were the only passengers and the flight attendant was lovely and got me a nice glass of wine and Sean some cookies. We were met by a private car and it all went smoothly. He has had a though day today so far, he didn't like the ct contrast and his iv infiltrated so everything was late and he had to have the contrast through a tube in his nose. The ct is done and he is in the MRI scanner now. Hopefully he will have good results to make this all worthwhile! :) Praying for Happy News! Ellen
(My computer is being repaired again so I will post a note when I can!) Love to all, Ellen"
1/21/04 1:25 PM


"01/14/04-Hello, Sean is scheduled for CT/MRI on 1/21 in NY. Hopefully we will get lots of good news. His urine test is still Pending.....Love to all. Ellen"
1/14/04 5:23 AM


"01/09/04-Hello friends, Seans MIBG results are in but not clear. There is "uptake" near his l kidney. The surgeon does not think it is more cancer but Sean needs more tests. He thinks it is related to the ureter having a problem and thinks he may need surgery to "re-implant" it. (He told me this may be an issue after the surgery in Oct.) He needs an MRI and Ct scan to be sure what is going on. They are working on scheduling these now. I have asked for ASAP! So it looks like more trips to the big Apple. Meanwhile, Sean is feeling fine and getting a new molar. He is following Kathleen around and Heather is on his tail and they are all getting into assorted mischief. I am anxious to get all the tests done to confirm that there is no more cancer. I am also not really clear on where we are with the residual cancer in the spine. All in all, I think it was a good report. The urine test won't be back until next week. Hope everyone is settling into the new year! Love to all, Glad to be home on Cape Cod, Ellen"
1/9/04 11:19 PM



"01/07/04-Hi, We got the MIBG scan done, but I could not get results. We will try again, in the am. Please pray for us....Ellen and Sean in NY, Scott, Tiff, Scott A., Kathleen and Heather and various babysitters on Cape Cod."
1/7/04 10:23 PM



"01/06/04-Hi, Sean and I made it to NY, by train this time. It's a little tricky w/stroller, suitcase, assorted other bags of babyfood, diapers,etc, but we made it. Tomorrow he will have a nuclear injection for the scan on Wed. I prob will have some results late Wed. He will also have another urine test but I won't get the result until next week. I'm getting a little nervous and am anxious to get some good results! Keep praying for my little pal. Thanks, Ellen"
1/6/04 12:59 AM



"01/01/04-HAPPY NEW YEAR! OUR WISHES FOR EVERYONE TO HAVE A SAFE, HAPPY HEALTHY NEW YEAR! GOD BLESS YOU ALL. Ellen, Scott, Tiff, Scott A., Kathleen, Sean and Heather Hanson"
1/1/04 7:22 PM


"12/24/03-MERRY CHRISTMAS TO ALL, AND TO ALL A GOOD NIGHT! Ellen"
12/24/03 11:53 PM



"12/20/03-Hi all, hope your ready for the holidays. We heard from NY and Sean is on for his MIBG (nuclear scan of the body) for 1/06/04 in NY. It looks for neuroblastoma cells throughout the body, checking locally and for metastasis. He is feeling fine, running around and starting to talk. I still haven't managed to get them all to sit down for a Christmas picture, but I'll keep working on it. Merry Christmas! Keep praying! Dad got a great report and we are praying for the same w/Sean. :) xoxo Ellen"
12/20/03 3:50 PM



"12/08/03-Heard from the Drs. re: Seans latest tests. The MRI showed no new tumor and the urine test had "Mild" elevation. (We want it to go down). I'm not sure how "accurate" the urine test is-we will keep checking it for 6 months and see what the trend is. Nuclear scan in Jan. MRI of spine in Feb. He is walking some now and seems to be feeling fine! He even sat on Santas lap! Love to all, keep praying :) Ellen"
12/8/03 10:08 PM



"11-29-03-Sean took his first steps today and walked to Uncle Brian who was home from London! :) Ellen"
12/4/03 11:34 AM



"11/27/03-HAPPY THANKSGIVING! Love, Ellen, Scott, Tiffany, Scott A., Kathleen, Sean and Heather."
11/27/03 2:40 AM



"11/24/03-Hi Everyone, Sean has been back to NY for his tests. Both were "good", but I didn't get to talk to the doctor for details yet. We went to Toys-R- Us, FAO Scwartz, and even saw the "Rockettes". Scott A. loved it and didn't want to come home! Love to all, Ellen"
11/24/03 7:42 AM



"11/16/03-Hello, Sean is currently the healthiest triplet. Kathleen has an ear infection and Heather prob has pneumonia. Scott and Sean are fine! We are getting ready for New York and hoping for good results. He will have a renal scan to check kidney function on the operative side as well as MRI to check residual tumor in spine. Also a urine test that can be used as a marker (going up or down). Hoping for good weather so we can go by helicopter again! Thats all for now. Thanks, Ellen"
11/16/03 2:14 PM



"11/11/03-Sean is doing fine. Next check-up is 11/19-11/22. Mri of spine, urine catecholimines and Renal scan. May take little Scott w/me. Anyone want to babysit? Please keep up w/the prayers. Thanks. Ellen, Scott and Sean"
11/11/03 3:34 PM



"11/04/03-Hi, the drain is out and Sean seems to be feeling fine. 1 new tooth and 1 on the way! Life is back to normal until 11/21 check up in NY> Love to all.,Ellen"
11/5/03 6:31 AM



"11/03/03-Hi, Sean is right back to his usual schedule. A little tricky hiding his drain from himself and the girls. We all went for a nice walk yesterday. Just trying to fatten him back up. Boston tomorrow, and I hope that will be it until 11/21 check-up in NY. Love to all, Ellen, Scott, and Sean"
11/3/03 6:40 AM



"11/01/03-Hello, We arrived home from NY by helicoptor at 4pm. thurs. Sean had an elevated WBC(which could indicate infection) when we left NY so they had us follow up at MGH 10/31. Sean had an Ultrasound and KUB (xray), his WBC was back down close to normal and his drain is working fine. Next trip to Boston is Tuesday. He was able to get home just in time to dress up as the "Incredible Hulk" and trick or treat w/the kids. Thanks to the many teens involved w/dressing them etc., they hopped in their red wagon and off we went! Happy Halloween to all. Ellen"
11/1/03 11:56 PM

November 17, 2003

Dear Friends,
On September 9th our son Sean was diagnosed with neuroblastoma, a rare and devastating childhood cancer. Sean is one of our 11 month old (at the time) triplets. Initially we were sent to Boston where we were told that Sean's tumor was inoperable and that he would first need to undergo 4 cycles of chemotherapy. Sean received 1 cycle of chemotherapy and we flew to New York for a second opinion. After consultation in New York, and another week of testing, we found a gifted surgeon named Dr. LaQuaglia. Sean was able to come home for a few days to celebrate his first birthday with sisters Kathleen and Heather. We flew back to New York and on October 10th, Sean successfully underwent a complicated 11 1/2 hour operation at Memorial Sloan Kettering. He was in the hospital for close to three weeks and continues to have a slow but steady recovery. Sean has residual tumor in his spine which we will continue to monitor. We are hoping that it will regress and he can avoid further chemotherapy, radiation or surgery. During this time, we left our 18 year old daughter Tiffany to manage the household. This included taking care of her brother Scott (4 yrs.), and sisters Kathleen and Heather (1 yr.). During this difficult time, there was a miraculous show of support from family, friends, strangers and the community. There were helicopter flights through Corporate Angels, housing at the Ronald McDonald house, meals prepared, grocery gift cards, gas cards, phone cards, donations, baby-sitting, a fund raiser, phone calls, e-mail, car repair, transportation to and from the train station in Providence, and many, many, prayers from all over Cape Cod and beyond. With things at home being taken care of, Scott and I were able to focus on Sean and his needs. We all want to say thank you because Sean is not just a baby with cancer. Sean is our son, a grandson, a triplet, a brother, a nephew, a cousin and a Godson. Sean is a cuddler and a giggler. He is a happy baby boy, who is full of life. You have all been and continue to be a part of this miracle. I cannot express what is means to Scott and me and our family. From the bottom of our hearts, Thank you. Please continue to pray for our family and to pray for Sean that he have a full recovery from cancer. God Bless you all!
With deepest gratitude,

Ellen and Scott Hanson
Tiffany, Scott A., Kathleen, Sean and Heather

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