Journal History
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Friday, August 19, 2011 11:55 PM CDT
Sami is about to enter 6th grade. A middle schooler.
She is healthy and happy 10 years post diagnosis of Neuroblastoma stage IV.
Sami's dreams have come true. We moved to Cody, WY, built our home, Make A Wish pony in the backyard and puppy at her side. What more could a child ask for?
Sunday, July 4, 2010 1:08 PM CDT
Sami entered the kiddy parade July 2nd and big parade July 3rd and 4th. She won 1st place. She is so excited.
Saturday, June 19, 2010 9:19 AM CDT
Hosting our annual Alex's Lemonade Stand today from 11am-2pm.
Come to our store Treasured Memories at 316 Yellowstone Ave, Cody, WY 82414
307-587-4832
or send donations by mail...
make payable to Alex's Lemonade Stand
to Sami Gray, 2914 Kent Ave, Cody, WY 82414
or online donations at...
www.alexslemonade.org/mypage/66119
THANKS!
Sami, Sandy and Dan
Saturday, March 27, 2010 10:31 PM CDT
Samantha had a wonderful birthday week and it still isn't over.
Today is Sami's 10th birthday. A decade. Double digits. The joy of our lifes.
The celebrating started in Denver with cake and a songs with our friends the Cohen's. Then Thursday, Sami's godmother Aunt Arlene flew in from New Jersey. Friday Sami had cupcakes with her class and Arlene for show and tell.
Friday's school is out at 1:40 and I picked up the girls that attended Sami's party. They all got made up...nails, make up and hair before modeling. All had fun. Chocolate Cake and chocolate icing and a white horse. Ariel, Emma and Sidney are great friends and all had fun.
Saturday, Sami's actual bday, was spent at school for the Music event with 12 schools. Then we went to Rib and Chop for dinner.
Sunday we plan to go to Red Lodge to end a beautiful weekend.
Friday, March 19, 2010 10:36 AM CDT
It is snowing in Denver. We are staying at our friends the Cohens who also have a NB child. Jacob Cohen and Samantha Gray have a lot in common. They were both born during the millennium of 2000. And in May of 2001, they were both diagnosed with Neuroblastoma. Though Sami was treated at the Childrens Hospital of Philadelphia (CHOP) and Jacob was treated at Childrens Hospital of Denver (CHOD), their protocols were the same. We became pen pals through Caring Bridge. The Cohens like us are big supporters of childrens cancer fundraisers. They ran golf events and other activities to raise money for the HOPE clinic and other charities. They help families recently diagnosed and undergoing treatment with consulting visits and online Caring Bridge support. And they helped us when we made the decision to move to Cody, ensuring us we would get the same medical attention at CHOD.
So Wednesday, March 17th we drove the 8 hours from Cody to the Denver area. The Cohens opened up their house and Jacob even let us sleep in his room. On Thursday, March 18th we went to the HOPE clinic and visited with doctors all afternoon. Sami even sat by herself in the blood draw chair and with lots of bribes (like Dave Cohen bought her a hat and Dan waved a $100 bill), but she did it! Did I tell you how much she hates blood and needles? Nurse Irene had a neat water funnel to keep her focused while the she prepared the items she needed for the blood draw. Dan also covered her eyes to get her to focus on the money he held up in front of her. Sami said the nurse was smart to have a chair with an arm that blocked her in. Relieved that was over, we they played the waiting game as doctor after doctor came to visit with us like Social Worker, Nurse Practitioner, Nutritionists, Counselor, Oncologist and more. The results were..Samantha is a healthy almost 10 year old, 8 years out of transplant and ready to move away from cancer and move on with her life. She will be followed by her general pedestrian and audiologist of coarse and we will meet with en endocrinologist soon. She will get regular heart echoes and that is about it. Unless we have a need, we will not come back to CHOD.
Friday, March 19th, we are hanging at the Cohens watching a Colorado Spring snow storm. We have a few frame and scrapbook suppliers here that we plan to visit and a few friends we hope to connect with before we head back to Cody on Sunday.
Thursday, March 4, 2010 9:21 AM CST
March is here and spring is peeking through in Cody.
We have started out with a bang with lots of appointments and such for our various interests. Of coarse there is school and state wide testing has started, which Sami hates. The weather has been wonderful, sunny and mid 50s with hardy no wind.
So why so busy? Sami had a photo session at Northwest College (NWC) for Wyoming Weekend of Hope. An organization dedicated to awareness and options for cancer. The photograph cancer survivors to give hope to those that are under going treatment. The event will be in July and they will allow us to hold an Alex's Lemonade Stand at the event.
In addition, Wednesday the 3 of us had our picture taken by the Cody Enterprise, our local newspaper, for a business section that is coming out in a few weeks. This is a special attention that highlights new and existing businesses that want to prompt their services to the community. They interviewed us, take our picture and produce an article about each company in addition to a nice size advertisement. Of coarse there is a fee, but this one is well worth it to get our name Treasured Memories out in the community and an explanation of all the services we offer.
Then right from there, Sami was interviewed by the High School newspaper as a follow up to the Make A Wish she received last year. The Cody High School raised the money for Sami's wish.
We will be heading to Denver mid March to see the HOPE oncology clinic for Sami's yearly check up. We are moving from CHOP since we now live in Cody, Wyoming.
Keep up with our day to day activities on Facebook, codydreams@gmail.com or email or call us.
Tuesday, February 2, 2010 6:19 PM CST
Just back from DisneyLand. Sami had fun with her friends Paige and Joelle. Her favorite ride is the Autotopia where she can drive a race car, but her feet don't reach the pedals yet. However the bug's life area had a great bumper car that she could drive all by herself.
Monday, February 1st, Sami had 2 teeth pulled. She was very brave going into the dentist room by herself. I guess she didn't realize she was getting a shot. She didn't like the numb feeling and was upset it took over 2 hours to feel her upper lip and nose. The teeth were the two top fangs. The permanent teeth were making their own area to come in, missing the baby teeth that were not even loose.
We have moved Samantha's records to Children's Hospital of Denver from Philadelphia. Her first appointmetn will be March 18th. We are looking forward to meeting the Cohen family who we have been Caringbridge pen pals since the kids were diagnosed with NBIV together 9 years ago.
Check us out on Facebook or send an email to Sami at codyhorsegirl@gmail.com
Monday, January 18, 2010 10:11 AM CST
Happy New Year !
Sami had a great Christmas celebrating with family in Maryland and friends in New Jersey.
Now we are back to Cody and back into our routine. Sami is half way through 4th grade. At 9 she is already wishing she is grown up. She is into fashion, Jonas Brothers, Mylie Cyrus and her friends.
You can also keep up with us on Facebook look for Sandy Gray at codydreams@gmail.com
Sunday, November 22, 2009 11:25 AM CST
Fall and preparing for the holidays have us busy.
As weekend Sami was honored by Make A Wish in Casper during a fundraiser. She was on the radio and tv news.
We are planning to visit with Snow today and work on holiday lights around the house.
Going to my sister's for Thanksgiving and looking forward to Christmas in NJ and MD.
Friday, November 6, 2009 8:29 AM CST
Noah Biorkman is a 5 year old, who is in his last stage of neuroblastoma cancer after 2 1/2 year battle. His family is celebrating christmas next week and all he wants is Christmas cards..... Lets try and see how many he can get from all over the world "Please" His address is 1141 Fountain View Circle South Lyon, MI 48178.
Please send to everyone!!!!!!
Monday, September 7, 2009 10:03 AM CDT
Sami has started 4th grade. Check out the new pictures.
It has been a busy year. We are excited for Sami. She has a nice teacher Mrs Caldwell and a great team working to help Sami academically. Sami is excited to read for the first time and we have actually found her a few times in her room reading and writing. Though she would choose playing imagination things with her friends.
School day has been lengthen 1/2 hour Monday thru Thursday. School starts now at 8:10 and ends at 3:20. Fridays are shorter getting out at 1:40. The first day was August 26th they go 175 days and they do not built in snow days with a scheduled. The last day is scheduled for May 28th. There are many field trips scheduled including 4 trips to the Buffalo Bill Museum. She went on 4 field trip in the short time we were here for 3rd grade and a trip each week in summer school and I've never had to pay. Her first trip is scheduled for Sept 25th with the teacher of the deaf and 3 other students to Casper for bowling, pizza and a chance to meet with other hard of hearing kids.
Sami started piano lessons. We are waiting on her schedule for speech and hopefully tutor before setting up 4H miniature horses, and any of the other activities she has mentioned like voice, dance etc...
We moved Snow from Big Bear Motel barn. There she was separated from the herd because she was getting picked on. The round pen she spent her days did not have shelter and that meant physically moving her to the barn during bad weather. We were concerned with winter coming that she would spend most of her time in the barn. So we found a great pasture with barn. She is learning to get alone with the other horses. She has a buddy named Eddie the only gelding and she is learning who is boss of the 3 mares. Weve learned she likes to be a dominant mare and she needs to adjust to not always being in charge. We are happy that she has a home that is more similar to where she came from. She can roam free and get shelter from the weather if she chooses.
Dan and I are enjoying life through Sami. We are busy at our scrapbook and framing shop. Tourist were good to us our first summer and the locals like our scrapbook selection and framing services. Im joining local clubs to network. I hope I can just continue to work at our store Treasured Memories, but I am looking for a job now that my severance from American Express has run out.
We miss that the summer rodeos every night have ended, but we have joined some friends at the Friday night High School football games.
Be sure to sign in our guest book or send us an email: codydreams@gmail.com
Or look me up on Facebook. Im on everyday.
Monday, August 10, 2009 11:53 PM CDT
Having a great summer in Cody, Wyoming. Sami has playdates and sleepovers all the time. We have had guest come from NJ and MD and we are expecting a few more before the summer ends. We spend a few nights a week at the Rodeo and days are busy with our store "Treasured Memories." Sami rides her horse almost every day.
July 30th we lost a very special family member with the passing of Dan's dad Jack. Jack was always there for every child and grandchild. He went to all Angela's recitels, Brooks' band events, all the Wiley boys baseball games and more. He stayed with me in the hospital with Sami for long hours giving me breaks and companionship. We just got back from his funeral in Baltimore, MD this week. It was great to be with family.
We look forward to our visit to MD and NJ for the Christmas/New Years Holidays. Contact me if you want to get together.
Sandy
codydreams@gmail.com
Tuesday, July 7, 2009 11:56 PM CDT
Blogging for Kids with Neuroblastoma. I can't get the image to work, but the link should....
Hey everyone!
On Saturday, July 25, my friend Nikki is blogging for 24 hours to raise money for Band of Parents, a charity that's working towards curing pediatric cancer, Neuroblastoma.
The American Cancer Society DOES NOT give ANY funding for NB because "ONLY" 650 new cases are diagnosed each year. That is NOT ok with me OR the parents of these amazing kids!
Help me help them for the 4th year in a row by donating a simple $5 to Band of Parents. Anything above $5 is welcome too! My goal is $2,500 & I've already raised $280!! You will not only help fill the gap, but extend the lives of these AMAZING CHILDREN!!
Please take a moment to visit my online fundraising page and make a donation. It's really easy - you can donate by credit card and receive an immediate tax receipt for your donation.
This link will direct all your friends/family to the details! From donation to spreading the word, it's their one-stop link!
http://bloggingforkids.shebecameabutterfly.net/?p=259
The order of kids is in the sidebar as well! Sami is about 2am. But you can donate anyime.
Thanks and best wishes,
Nikki Rehmert and Sandy Gray
Thursday, June 4, 2009 9:29 PM CDT
Help us with our annual Alex's Lemonade Stand Foundation (ALSF) event. Stop by June 13, 2009 at our store Treasured Memories, 316 Yellowstone Ave., Cody, WY 82414 307-587-4832
Online donations: http://www.alexslemonade.org/stands/11067
Visit alex's website to learn how you can host your own stand.
We are also looking for volunteers to help us with or first large community stand to be held in Cody Park next to Chamber visitor center. We have permits for July 2, 3, and 4. We will supply the lemonade, but we can't run the stand because Sami will be in the parade each day.
Call or text Sandy 307-250-4170 for details.
Saturday, May 2, 2009 11:11 AM CDT
Yesterday we celebrated our store opening with the local Cody Chamber of Commerce ribbon cutting.
Dan, Sami and I wore matching red embroidered shirts. We had lots of snacks and drinks. We have received a warm welcome from the town. Customers like our selection and business looks good.
We can now make playing cards from your pictures. Ask us how: codydreams@gmail.com
Treasured Memories
316 Yellowstone Ave
Cody, WY 82414
307-587-4832
866-399-2896
thanks!
Saturday, April 18, 2009 9:53 PM CDT
THANK YOU Make A Wish
After many years, Sami has made and been granted her wish...a wonderful white pony.
Shelly arrived at the Big Bear Motel in Cody, Wyoming on April 14th after a long journey from Northern California where she was loved by the Haddad family for the past 11 years.
Make A Wish kept everything a secret from Sami as they prepared a party with the main surprise Shelly and gifts like pink tack and brown leather saddle and briddle.
Sami was surprised and had a wonderful day. A few pictures are posted here and a movie on Facebook.
Friday, March 27, 2009 12:49 AM CDT
Today is Samantha's 9th birthday.
She had a wonderful evening last night. It was our friend Al's birthday on Wednesday so we celebrated with neighbors last night with a wonderful dinner. Sami was dressed up in a beautiful dress and had a great time enough the kids that were invited couldn't come.
This morning Sami was greeted with a call from her second mom, Naz or bi bi na as she used to call our old next door neighbor in NJ. She left for school happy looking forward to a great day. I will take snacks to class at 2pm. After school we are taking a few girls to the rec center for swimming.
Saturday Sami has a surprise waiting for her from her riding instructor and her daughter Kelly. Kelly is excited to celebrate with Sami.
Best Wishes
Friday, March 20, 2009 10:26 AM CDT
Samantha will be 9 on March 27th.
She loves to get mail. Please send her a card.
Samantha Gray
1108 14th Street #240
Cody, WY 82414
or a text to: 307-250-4226
Saturday, February 21, 2009 10:57 PM CST
Sami had her second lesson with Jody today. Jody and her family are from New Jersey. They moved to Cody about 4-5years ago and own the Big Bear Motel. She is a great instructor and we feel so blessed to have found her and it was by chance.
We could have returned the UHaul to 2 locations in Cody and we choose Big Bear Motel. The night we returned the trailer, Dan talked to Bill and found out about the horses on property. He offered for Sami to come brush the horses. That lead to another visit and a lesson.
Today, Sami's second lesson, we dropped her off at 1 to train the ponies and she was due for her lesson on Molly at 2. We returned at 2:30 to pick her up by she wasn't ready.
Sami wanted to show us what they did with the ponies. So she got back on Yumyum and took us on tour.
They rode over to the rodeo and found some sand pits to play in. Sami rode western on Cookie and bear back on Yumyum. She had a blast.
Sami was on a horse for 4 hours. We didn't leave till 5:30.
Tuesday, February 17, 2009 10:14 PM CST
From Sami to her class in Bridgewater
My new school in Cody Wyoming is called Eastside Elementary School. My teacher's name is Mrs Miller. There are 18 kids plus me in my class and 3 third grade classes in this school. There are 2 other elementary schools.
Today I took the bus for the first time. The bus picks me up in front of my house at 6:50am. We pick up all the kids. We stop at the high school first, then middle school then my school. The other elementary schools get off at middle school and change buses to get to their school. I'm on the bus for 1 hour and 15 minutes.
School starts at 8:15 and it is over at 2:55. I have 3 recesses: one in the morning, one before lunch and another in the afteroon.
I had my first speech lesson today. I meet with the teacher on Tuesday and Thursday after school. I meet with the teacher of the deaf every morning.
Last week we visited the public library and I signed up for dog therapy. Today I read to "Zack" the dog for 15 minutes. It was so fun that I signed up for 2 more times.
I miss you guys too. I am thinking of you too. Did you get the cards I sent? I guess the girls liked them. OH, Kyra did murphy 's wife have babies yet? OH, I have met a lot of new friends. One is named Emma, another is named Ariel, then there is Alexa and there is a girl named Sidney is from Texas. And I have more friends I just forgot their names.
A boy named Nathan likes me. Nathan is smaller than me, but a little cute.
I went swimming on Sunday in Thermopolis in the worlds largest hot springs. It was 34 degrees outside and we were swimming in a pool inside AND outside. It was so cool to swim outside. The water was so warm.
Love, Samantha
Sandy and Dan Gray
1108 14th Street #240
Cody, WY 82414
codydreams@gmail.com
307-250-4226 Sami's cell Verizon wireless users can send text
P.S. we are 2 hours behind east coast time.
Thursday, February 12, 2009 11:18 PM CST
We have arrived.
After 5 days of more than 400 miles a day of driving, we arrived in Cody, Wyoming Monday Feb 9th. Our new address is:
1108 14th Street #240
Cody, WY 82414
email: codydreams@gmail.com
Sami has started school and is loving her new class at Eastside Elementary School. Lucky her she only went to school 2 days and tomorrow is already a 1/2 day and Monday is a holiday.
I set her up with riding lessons on Saturday (Valentine's Day) Sunday we are going to Thermopolis. Dan needs to meet a framing buddy to hand off to materils. Monday Dan wants to go to Billings, MT to visit with a frame distrubutor.
The new store is coming along. We moved everything into the space next to ours because our space isn't ready for occupancy. The paint was done today and the carpet and ceiling are going in soon.
Now that we are back in business on the internet, I'll try to keep everyone posted on our progress.
Wednesday, February 4, 2009 11:49 AM CST
Due to snow yesterday and ice last night, there were accidents on the highways....so decided to wait to leave for Cody till tomorrow.
We are finishing up the packing and cleaning. Our house is still for sale ... know anyone?
Sandy
Monday, February 2, 2009 7:41 PM CST
We picked up the UHaul today and loaded 80 f the stuff for the store. We hope to finish up tomorrow and hit the road on Wednesday.
Our drive to Cody Wyoming is 32 hours non stop. We hope to break that up into 4 days, but if it takes longer, that's ok.
our new cell phones:
307-250-4170 Sandy
307-250-4188 Dan
307-250-4226 Sami
Sami and I text and would love to hear from you.
Emails can be sent to codydreams@gmail.com
Learn more about Cody, WY: http://www.codyenterprise.com/
Friday, January 30, 2009 12:13 AM CST
Now 7 years out of transplant, Sami visits the survivorship clinic at CHOP Children's Hopsital of Philadelphia lead by Dr. Ginesberg annually.
Yesterday we meet with Dr. Wendy Hollie first, who works with Dr. Ginesberg. She answered our questions and gave us an insite for Sami's future which all looks bright.
Sami weighed in at 57 lbs (25%) and 47 inches (5%) which was all great for her. Blood pressure was actually good which is unusal (it is high at CHOP only) and this was especially surprising since she was so upset about the blood draw. Despite our prep and rewards, she panic as usual. We will do the heart studies locally since the heart department was closed yesterday. But these have always been fine so no worries.
Sami is getting a surprise goodbye from her classmates at school today so I hope to post pictures later.
Tuesday, January 27, 2009 7:44 AM CST
Update on the move to Cody, WY
Currently we are scheduled to move next week. We'll be watching weather reports to determine the best day to depart, but we expect Tuesday or Wednesday Feb 2/3.
Dan has rented a UHaul truck to move all the store supplies. He will be stopping in Indiana to pick up his new mat cutter and other equipment. Sami and I will be following behind in our explorer.
We all have new cell phones:
Dan 307-250-4188
Sandy 307-250-4170
Sami 307-250-4226
Sami and I have text messaging capabilities.
Our new email: codydreams@gmail.com
I also keep a facebook page under name Sandy Gray. So send an invite.
Thursday, January 8, 2009 4:49 PM CST
Happy New Year.
WE are business packing up the store and house to move to Cody WY.
Here is the web site Sami is building for her pretend business. http://www.freewebs.com/vetrus/
Monday, December 22, 2008 7:43 AM CST
For those that did not get our holiday letter, see below. If you want to get on the mailing list, email your info to: codydreams@gmail.com
Happy Holidays
This year we spent all our time planning, packing, and preparing for our new adventure. We are selling our house and business, found a retail space for our store, temporary housing arrangement and a new school. Our new residence in 2009: Cody, WY.
Start planning your vacation for Yellowstone to see this beautiful country and the Grays. Keep up on our adventure and details about our move on Samanthas website at www.caringbridge.org/nj/samigray
Our long awaited 2008 vacation was awesome. We took at 7 day western Caribbean Disney Cruise in April. Disney knows how to create a great experience and pairing up with 2 dear families made the trip very special. The kids loved camp and so did the adults giving us time to relax. Dan took lots of pictures and I even did some scrap booking onboard. We are planning for 10 day Disney Mediterranean cruise in 2010, please join us.
The first phase of orthodontia is complete. Sami got her braces off in June after 8 months. She now wears a retainer on the top teeth at night and a permanent spacer on the bottom until the rest of her adult teeth come in.
Sami has continued her love of horseback riding. She attended a 2 week experience at a local day camp where she rode 2 times a day and made great stride with her skills. She is currently taking private lessons at one stable and group lessons at another. She took gymnastics last year which ended in June and this fall she went back to Tae Kwon Do, but decided she prefers to stay home and ride her bike with the neighbors, which is fine with me. She has also taken up roller blading.
Samantha or Sami, not Sam., as she will tell you, likes to express her 8 year old opinions. She no longer likes purple, everything now is pink and princesses are not cool. Disney Channel is generally on the TV with her favorites being Hannah Montana, High School Musical and Jonas Brothers. Youd think we were talking about a teenager, but she just entered third grade this past September. This is the first year of letter grades and she has learned hard work gives her A rewards. It is quite a thrill, but not easy to get.
Sami has lots of friends and often gets hellos from the younger and older kids from school when shopping around town. She loves coming home from school on the bus this year instead of going to aftercare. Oh, I guess I should explain that. I was displaced from American Express after 18 years of service. Now I have more time to get ready for the move and be with my family. I help Dan with the store in the morning and Sami has benefited from the extra studying with her homework in the afternoon.
We are planning a Disney trip over Easter break 2009. Wed love company, if anyone would like to join us; our Sheraton Vista Villas two bedroom lock off timeshare is available for rent. With the move this year, we wont have time to take any other trips. If you are interested in a Sheraton timeshare property without the timeshare hassles, call us. You can go to any of their properties, any week in 2009, it doesnt have to be Orlando or with us. It would be a great help.
Happy New Year! Love, Dan, Sandy and Samantha
Friday, December 12, 2008 10:11 AM CST
CHECK OUT THE NEW PICTURES
Dan put up new pictures from CODY.
Here is Sami's new email: codyhorsegirl@gmail.com
Are you looking for inspiration and hope? I am. Read the quote below from Michael Phelps, the Olympic swimmer...
"So many people along the way, whatever it is you aspire to do, will tell you it can't be done. But all it takes is imagination. You dream. You plan. You reach. There will be obstacles. There will be doubters. There will be mistakes. But with hard work, with belief, with confidence and trust in yourself and those around you, there are no limits."
As you all know, our dream is to move to Cody. However forces beyond our control are getting in our way. The buyers for our house couldn't get a mortgage. I was displaced from my job. We haven't yet closed on the store sale. Our new landlord in Cody has informed us that our new location will not be ready on time.
We have our house listed in Century 21. I'm getting training and looking for work. Dan is busy with the holiday rushes at the store and trying to close the sale.
So when will we move? When the time is right.
Monday, November 10, 2008 3:16 PM CST
Sami had a great week. She only had school 2 days. She was off for Election Day on Nov 4th. She voted with us in the morning, had an eye doctor appointment (which her eyes were unchanged) and she had a play date with Francesca. Well we got our flu shots in the evening, but she didn't like that.
Thursday and Friday schools were off for teacher convention so Sami and I left for Baltimore on Wed night. Dan had to stay and manage the store.
We stayed at Dan's sisters' house. Thursday I took our nephew John (he is 17 year old home schooled senior) and Sami to Baltimore Aquarium. They loved the field trip and I was very lucky. A couple had extra tickets and gave us two saving me over $50. Then I got picked to be the dolphin trainer. Well, actually John was picked but he didn't want to do it and Sami was too young. It was FUN !
Friday I took the two to Ft McHenry. I grew up in this area because my grandmother lived on Hull Street just a few blocks from the fort entrance. Sami is into the history of the FLAG so she was thrilled to hold and help fold the flag at the fort. I rode around my old neighborhood in Riverview and Lansdowne and showed them my schools and church.
Friday night Sami went with Aunt Dottie to Awana (church event for kids) and I went to dinner with my high school friends: Donna, Ronnie, Carol and Lon.
Saturday Sami and I went to DC to see our neice Angela. She is attending Law School. We drove around and around looking for parking, and found a neat place for lunch were we sat outside. We couldn't beleive how warm it was for fall in November hitting almost 70 degrees. We walked and walked too, and finally got Sami to the fence of the White House. Then it was back to Baltimore to have dinner with Dan's dad and a few family members. Sami was happy Jordan was able to join us. He is so busy with work, school and baseball that we were lucky to see him.
Sunday we got home in time for Sami's horse back riding lessons.
Friday, October 31, 2008 2:38 PM CDT
Happy Halloween
It is beautiful 60 degrees and sunny today. Perfect for trick or treating. Sami is Padme (Star Wars - Luke and Leah's mother). Kevin is Darth Vador. I'll post pictures soon. But you have to check out the pictures from our trip to Cody, WY.
We had such a wonderful time meeting our new neighbors and visiting with friends. We feel so welcome already. The school is great and the teachers can't wait for us to start school at Livingston Elementary, one of 3 schools in town.
We stayed with neighbors where our land is located in the Cody Ranchettes. We were there to look for temporary housing for when we arrive in January. We have received a wonderful offer to stay with our neighbors since rentals and hard to find. Sami is looking forward to taking care of the family pets when our friends are away. You'll see a picture of one of them in the photos.
We did settle on a store. We need some help coming up with a name. Our current store in Hillsborough, NJ is Gray's Family Foto, which has photo lab, portrait studio, scrapbooking and custom framing just to name a few. The new store will have custom framing and scrapbooking with digital restoration and large format printing, but no mini lab or studio like we have now. So our name doesn't fit.
Suggestions are:
Gray's Family Foto
Gray's Scapbooking and Custom Framing
Preserving Memories
Treasured Memories
Send us your suggestions. Our new email is: codydreams@gmail.com
thanks
Sandy
Wednesday, October 1, 2008 10:28 PM CDT
Unfortunately it rained on Saturday, but the motorcycle rally went on as scheduled. Turn out was low, but we all had fun.
The annual event raises money for kids with cancer and their families. www.ride4erik.com
Sami and I ran the Alex's Lemonade Stand and raised about $100.
Sami didn't go on the run, but she did get many rides around the park afterwards. Check out the pictures.
Sami continues to take horse back riding lessons, but has decided to stop taking tae kwon do.
Sunday, September 14, 2008 9:18 PM CDT
Well we have settled into the school routine. Sami's bus comes at 8:07 and school starts at 8:25. Sami and her friends are the first on the bus and the first to get home at 3:10. She loves the freedom to come home, inthe past she has gone to aftercare and I'd pick her up at 6. Now she comes home, makes herself snack, does her homework while I'm working. She has Tae Kwon Do on Tuesday and Thursdays and horseback riding lessons on Wednesday.
This past weekend we were invited to the LuLu Shrines 20th annual rodeo. Sami was the VIP guest with committee seats saved. We had planned to go Friday night and Sunday, but it rained so we wet Saturday night and Sunday. Both were fun for Samantha, but Sunday was too hot for me. Usual Sept weather with over 94 degrees and very humid.
LuLu Shriners raise money to support over twenty hospitals to help children
Tuesday, September 2, 2008 11:44 PM CDT
After lunch with her best friend and neighbor Kevin, Sami went to open house at Milltown School to meet her 3rd grade teachers. She was also excited to catch up with her first and second grade teachers as well. She even admitted as I tucked her into bed that she wished she was going back to 2nd grade. She had the same teachers for Kindergarden and 2nd and we are all very attached to Ms O'Shea and Mrs Denys.
Tomorrow is the first day, back to bus stop and school and homework routine. A bit different this year will be no aftercare. With my displacement from my job and uncertainity of our move, I found it easier not to sign her up for after school care. She will come home on the bus. We have established a routine where she can make her own snack and complete homework while I finish up my last few weeks of work. Luckily I work at home and we have lots of teenage neighbors so she will still be supervised.
Check out the new pictures of Sami's teachers from today's open house and pictures from horseback riding lessons from Sunday.
Please sign in and let us know you logged on.
Monday, September 1, 2008 7:33 AM CDT
Beautiful Labor Day weekend here in the east.
We had a busy Saturday. Sami had a sleepover at a friends while Dan and I shot a wedding.
Sunday Sami had horse back riding lessons, then a family birthday party for Sami's godfather's son. We got some great pictures of Sami riding yesterday so I'll get Dan to post them.
Today looks to be another full day as we are now heading out to a horse show at the stables where Sami is riding now and leaving that show early to go to Freehold to see a horse where my friends horse is racing in the 4th, Beach. We hope to route him to victory and join them in the winning circle for pictures. Sami always brings them luck. Maybe we will win some money.
I'm looking for people to host an Usborne Book show. Online, catalog or in home....and I'll travel. I was displaced from my job and I'm looking to make some money before our move to Cody, WY.
Send me an email to get started. gray56@optonline.net. Online party is easy, you send out an email to all your friends and family, they go online and order. The books get shipped directly to the purchaser so there is no work by you as the hostest. Just encourage people to log on, the books sell themselves. Now for the best part, for your trouble, you get FREE BOOKS and I get a commission. I continue to donate a portion of my profits to Alex's Lemonade Stand and books to CHOP.
Here go online to check out these great children's books. www.ubah.com/a2416
Friday, August 22, 2008 7:58 AM CDT
I've heard about a child in need. Most of us know that feeling.
Here is the message I received today....
Sorry for the group email but I have a friend in need and am trying to do anything I can as I do not have the correct blood type to help. You'll see below that a good friend of mine has a close family friend whose little boy (5 years old) was recently diagnosed with a malignant tumor on his brain stem. She had originally told me it was inoperable (they've known only for a few weeks to a month), but apparently they're traveling to Philly for surgery and are looking for B blood donations. If any of you have this type and would be interested in donating specifically to this little boy, please let me know and I can get you all the info. I can imagine nothing worse in life than having a sick child and wish I could help.
Now I responded with this message....
I'm a speaker for Red Cross is Philly NJ area. All blood types are need and specific donations though can be done, are a bit complicated.
If you get Philly chanel 3 you have probably seen a commerical that has run for the past 2 year with Sami and I in it. A friend sent me a newspaper last week with the picture of Sami from above in the paper encouraging blood donations. I have done many speaking engagements for the American Red Cross Princeton Blood Donator center.
This time of year blood supply is low and I would not be surprised if they are in need of B , but also all blood types.
The reason blood supply is low this time of year is that most blood drives are done at schools and work place locations and schools are out and many people take vacations. It is also the time when the most blood is need. Philly area is actually an importer. That means, the area does not get enough blood donations on a regular basis to supply the region. A great deal of blood for this area is donated by the mid west.
So donate, please where ever you are.
Tuesday, August 19, 2008 7:50 PM CDT
Sami is having a wonderful summer. Last week and this week she is at Briarwood Farms horse camp. She loves it. And riding every day 2 times each day is really improving her skills. She is cantering more and more and getting more comfortable with it.
We were lucky to find a lovely couple with 2 children who have put an offer in on our house. We are getting through the contract now and if all goes well we will close December 30th. This gives Sami a 1/2 a year at Milltown School and us time to close up the store. Our lease is up Dec 31st.
Unfortunately I've been displaced from my job, with my last day at American Express to be October 3rd. This is disappointing since I had just received the news that I could continue my job in Wyoming. But that news isn't stopping us. We will move to Cody, WY for the new year. Not sure where we will live or if we will still afford our dream house, but we will make the move and pray for the best.
I'll be helping Dan out this fall in the store. Book now for portraits and get your framing in before we are gone.
Best Wishes,
Sandy
Thursday, July 9, 2008 11:43 AM CDT
Sami is having a great summer.
She is in CAMP (summer school) each day and gets bused to a friend's house for the afternoon. There are kids there her age and they go to the pool and great fun. She passed the swimming test so she is so excited she can go off the diving board and slide.
We are trying to sell our house in Bridgewater. Let me know if you have anyone interested.
Our plan is to move to Cody, WY as soon as we get the house and business sold.
Sign on the website.
Saturday, June 14, 2008 7:02 AM CDT
We are holding our annual Alex's Lemonade Stand at the store today from 9-12. Stop over.
Gray's Family Foto
411 Route 206
Hillsborough, NJ
Or make a donation at www.alexslemonade.org
thanks
Sandy
Friday, May 23, 2008 12:24 AM CDT
Thank you for all your prayers. I received the answer from my company today.....
YES, I can continue my job and work virtual in Cody, WY.
More to come.
Sandy
Wednesday, April 30, 2008 8:09 AM CDT
Just back from our Disney Cruise. It was wonderful. I recommend Disney Cruise to everyone.
The kids clubs are amazing, Sami had so much fun.
The shows were awesome, well they were Disney so what else would you except.
Go with friends, it was great to have someone you know always there to share in the fun, whether that meant a show, pick the kids or wine !
We enjoyed the adventure with 2 other families: Doctors and Davis. Thanks guys for all the wonderful memories.
See the new pictures.
Wednesday, March 26, 2008 11:57 PM CDT
HAVE YOU SEE THE UPDATED PICTURES from Sami's Birthday party?
***********************************
Is it after midnight? yes, so today is Sami's 8th birthday.
She was born 8 years ago a 6:25am. She came into the world her way (cecearon) and lives her life her unique way too.
For those that don't know she is a miracle two times over. After 12 years of trying many treatments, Sami was conceived through IVF. At a year old she was diagnosed with cancer. She is now cancer free and on her way to a normal life.
She is a great kid. Even at the resturant tonight 2 waiters and 3 customers reached out to talk to her. And at the store looking at hardwood floor for our new home, Sami was 'beautiful and polite' said the woman that worked there.
Sami is a joy to be around.
Send Sami a message on her own email: horsegirl56@optonline.net
Sami plans to spend her day bowling with friends. Our dear friend Mel is making her a bowling cake. It is sure to be a great day.
After a brief trip to CHOP on Friday, we will go to Baltimore for the weekend.
Wednesday, March 12, 2008 0:09 AM CDT
Bone Marrow Drive
Sunday, March 16, 2008 at 9:30 AM - 1:30 PM
for Linda (Dederbeck) Kosinski
Location: Basking Ridge Presbyterian Church
1 East Oak Street, Basking Ridge, New Jersey 07290
For more information or to say you will come, call John Schulenburg at 908-507-2644 or
Pat Teague at 908-647-2078 or e-mail johneschulenburg@aol.com Walk-ins welcome!
Linda is a 38 year old mother of 3 young children, ages 5, 3, and 1.
Linda was diagnosed with Acute Lymphocytic Leukemia (ALL) in November 2007. She needs a Bone Marrow Transplant this spring. They have searched the national registry and currently there is not a perfect match for Linda.
Please come to get tested to see if you are a match for Linda or the many others needing a bone marrow transplant. Donors need to be between the ages of 18-59 and in good general health. Donors will fill out a consent form and become part of the National Marrow Donor Program database, which can be searched for matches for patients in need around the world. Cotton-tipped swabs will be used to collect cheek cells from inside the mouth. No blood is drawn at this time. For more information on bone marrow transplants go to www.marrow.org or 800-MARROW2 or 800 627-7692.
Donations will be accepted to help offset the $30.00 cost for each test.
See photos for a picture of Linda.
Linda is a family friend. I've known her family since Dan and I moved to New Jersey 23 years ago. Please support her and all the others out there waiting for a match !
thanks,
Sandy
Wednesday, February 13, 2008 2:33 PM CST
Sunday Samantha picked up her first pair of glasses. Inside of the frame is blue and the ouside is black and tan which they call turtle. She loves them !
We just returned from CHOP were Sami meet with Dr. Ginsberg. She got a clean bill of health. Sami is 45 inches tall and 52 lbs. Blood tests and urine test results will be in next week. She had a bone scan on her wrist to evaluate her growth. She has slipped of the chart from the 5 attern she had been on the past 5 years.
Happy Valentines Day says Samantha
Friday, February 1, 2008 12:30 AM CST
Thanks for your help with Alex's Lemonade Stand. What you missed the opportunity to donate? Check out the journal history. or go to www.Alexslemonade.org
January behind us we are moving into February, with Sami's schedule leading our way. Today Sami had her cultural 2nd grade concert. It was wonderful. Her school is so diverse. If only the world leaders could embrace our differences like second graders do, what a world it would be...inspiring.
Tomorrow Sami has a playdate in the morning, and birthday party in the afternoon. Sunday we are going to the Hannah Montana 3D movie in the morning and SuperBowl party at the farm in the afteroon.
Monday after school, Sami plans to attend her friend Jakob's 6th birthday party at Hoop Haven to play basketball. Jake is a big webkinz lover like Sami. We wish him a wonderful year.
Next weekend we are going to Baltimore to see Nemo on Ice with granny and grand dad. Granny won tickets and we are so excited. But first Sami has a playdate while Dan and I have a photo shoot, then drive to MD.
More to come...
Thursday, January 31, 2008 8:40 AM CST
Help Alex's Lemonade Stand Foundation Win $50,000!
Only 24 Hours Left!!!
How To Help
Parade Magazine, in partnership with the Case Foundation, has offered non-profit charities a unique opportunity. America's Giving Challenge is awarding $500,000 to charities whose supporters have attracted the most unique donors to their cause. If we can get into the top eight, Alex's Lemonade Stand will be awarded $50,000.
We know the friends of Alex's Lemonade Stand are a powerful network! Let's prove it by ensuring we can crack the top 8!
Simply take 2 minutes of your day and go to: http://www.networkforgood.org/pca/Badge.aspx?BadgeId=110616
Donate any amount you would like of at least $10 and help us move to the top. We only have about 24 hours, but we don't let challenges like that stop us. Make your donation by 3 PM EST on JANUARY 31, 2008 here: http://www.networkforgood.org/pca/Badge.aspx?BadgeId=110616
Tell your friends! Please SEND this message or post it on your websites and blogs ASAP to ensure we make it into the top 8 for a chance to be awarded $50,000 to help us fight pediatric cancer!
Alex's Lemonade Stand Foundation
333 lancaster avenue #414
Wynnewood, Pennsylvania 19096
Forward email
This email was sent to gray56@optonline.net, by lizandjayscott@alexslemonade.com
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alex's lemonade stand foundation | 333 lancaster avenue #414 | Wynnewood | PA | 19096
Friday, January 18, 2008 9:39 PM CST
Happy New Year
After a great trip to Cody, WY we are setting back into our normal routines. Add with that stress on selling the hosue and business and finding employement and a home. But we are doing ok. Do you know anyone that would like a great house in a great neighbor? How about an established photo/frame business?
We are ready to move west but we have to take care of this house keeping. When the time is right we will make the move.
Sami's school evluations are done and I'm meeting with the teachers next week to get the plan. In addition she has physical and physic tested scheduled at CHOP next month. I should probably get some hearing and vision tests scheduled soone too. Yes it is that time of year. I've moved her anual well check up with the peds to August since she has so many with CHOP around her b-day.
Speaking of which can you believe she is going to be 8 years old !
Have you ever wondered about the pictures here on the home page? The picture on the left is 13 months the weekend before diagnoses. The middle pic is 2 years old just after treatment (still going to through oral meds - but done transplant and radiation)...see the hair growing back. I remember thinking when the hair on her legs came in, "gee do kids have hair on their body?" the pic on the right is 3 years and going strong.
Sami finally got her new wireless FM system. She loves it. So much she has brough it home (by accident) two times now. It is a small gadget that clips onto her hearing aids. That is it. No more wires that come out when you moves here heard. No more beeper sized box on her belt (which she ever wore). If only I could get a microphone she could wear it all the time.
Happy Trails
Thursday, December 13, 2007 4:08 PM CST
ok, Ok, OK !
I get it. It has been 2 months since my last update. The good news is that everything is going well.
Sami is doing good in school. The first marking period ended, however it was just an oral conference. Anyway they don't get letter grades in 2nd grade. It has been 3 years since her evaluations for her IEP (individual education plan) so the team recommended speech eval. CHOP had recommended a neurophys eval which they will do and I've asked the teachers to complete educations eval so we have that to give to CHOP to present recommendations.
I've actually seen alot of progress in Sami's reading and math since the conference in November. So that is a good sign.
...still not wireless FM system. She says when she turns her head wit the wired system, the plug comes out or pulls on her hearing aide. Even the teacher gets excited when the teacher of the deaf walks in only to learn, it isn't in yet. Once again we have been told it was ordered last week.
To recap, October Sami took riding lessons on weekends, chess and gymnastic during the week with play dates and birthday parties to round out the schedule.
Nov 2-11 we drove to Florida for the first time. Generally we drive. Surprisingly the 16 hour drive it actually took us 18 hours with stops for gas, potty and eating, went well. Not a single compliant from Sami. We stayed in our Sheraton 2 bed condo timeshare with our friends the Salerno's. Let me know if anyone would like to rent it from us. We don't go every year and it would help us off set the cost. It a great location close to Disney. You can take both sides or just one because there are 2 separate units with a bedroom, bath, kitchen, laundry and living room in each.
Back home we were busy with activities and Usborne Books shows. It is not too late to purchase books from my website for holiday delivery: www.ubah.com/a2416
Thanksgiving was great. 6 years ago on Thanksgiving Day Sami came home from a 3 week stay at CHOP after her 1st transplant.
Friday, Sami and I drove to Baltimore to spend time with the family. Saturday was rehearsal and dinner for Steven and Nicole's wedding. The Wedding on Sunday. Sami was the flower girl and we took the pictures.
Back home Sunday night, Sami played hooky from School on Monday.
December is here and we have had some cold days with snow. Just enough to look pretty and not cause too much road trouble, that is till today. It is a bit warmer so the snow was mostly ice and schools were closed early. Sami has been playing at Kevin's all afternoon.
We hope to finish trimming the tree this weekend. I have 4 more days of work this year, however I'll be at the store when I'm not.
We have plenty of pictures to post, so we'll try to get a few on. Dan's busy at the store working till 11pm most nights.
We will be in Baltimore, MD for Christmas then Cody, Wyoming for vacation for New Years.
Monday, October 8, 2007 6:09 PM CDT
Braces...yes, our 7 year old has started the first phase of Orthodontia.
It has been a year and a half of monitoring, pulling teeth and waiting. Now because of the crowded top teeth and alignment to the bottom teeth preventing the new teeth from coming down, Sami had braces put on the top teeth. Though the braces are on all the top teeth, they are only working on the straightening the front 4. The others are just anchors. This stage will take approx 6 months.
The front bottom teeth should be spaced out by then with the help of the 2 teeth that were removed this past summer. Hopefully by her birthday the top braces will come off and spacer will be put on the bottom to hold space for the permanent teeth. Then it is a waiting game for the permanent teeth to come and show their intent. Further braces for top and bottom will be explored after the permanent teeth come in for the second phase in a few years.
How is Sami doing? GREAT. She loves the braces and couldn't wait to get them. I'll post some pictures as soon as I figure out how to get them off my new cell phone.
Monday, September 24, 2007 8:44 PM CDT
We are having a beautiful fall. The weather is warm and sunny, except....Saturday when the clouds hung around all morning and the rain began about 2 hours before horse riding lessons. But Sami earned enough money during the garage sale before the rain, to get her a new webkinz. So no worries.
Sunday was wonderful so we spent the day at a farm with hay ride pumpkin picking, horses, ponies, goats, pigs, sheep and more....games, corn maze and fresh food. We all had a great time.
Check out the new pictures including Sami milking a cow.
School is going great. We are back into the routine with dinner, homework and bed. Though Sami doesn't understand why there isn't any play dates and play time outside before the sun sets. Wait till next month when I'm picking her up in the dark. Today she wanted to join Chess club at aftercare which is held on Thursday. I think it will be great for her. We played tonight and she really took to the rules.
Sunday, September 9, 2007 8:15 AM CDT
Sami had a GREAT summer. Each week was a different schedule, camp or event.
July we went to Ocean City Md with Dan's sister and family. Sami loves being with her cousins. It was all about the beach, the pool and dinner with the boys. We actually had both Dan's sisters and father with us as some time so it was a great family experience.
I took a short overnight to Dallas for a meeting, but friends helped Dan out with Sami in the afternoons after camp so all went well. (I don't think see noticed I was gone).
Usborne book sales are going well. I've donated hundreds of dollars to Alex's Lemonade this year from the proceeds of my books and several stands we have held. Usborne is a great educational publisher with books kids love to read. Check out my website: www.ubah.com/a2416. Order online or book an in home demonstration. I can even arrange a catalog and online show which works great for the holidays.
August was the highlight for Sami as she attended Caseys Horse Camp. She jumped Jazz, cantered on Rainbow and jumped and cantered on Dustin. 5 days of camp really helped practice her skills, gain confidence and build friendships. Well 4 straight days of riding as the last day it rained so they did inside games, crafts and cookie making.
The following 2 weeks we had the pleasure of our youngest nephew John who is 16 stay with us and watch Sami during my working hours. Sami loved having John around. He was a great sport. We really enjoyed his company.
Now Sami is back to school with her real teachers, which she called them last year. See in Kindergarten she was in a coteachering class and as most kids do, in first grade she moved to a different class with new coteachers. Her teachers however moved up to second grade so all last year we heard, when can I go to my real teachers. So this year, she has moved up to coteaching second grade on the second floor with..the teachers from Kindergarten. She is so excited and so are we. One of these teachers has been tutoring Sami the past 2 summers so we have a great relationship with her and her teammate. They have even supported us with our lemonade stand and other events. So on to a great year of education.
Sami had her annual check up with the pediatrician in August, since she has her Oncology appointment around her birthday in March. She had blood work to watch her liver functions and all was normal. She continues to grow slowly and steady. She is on her curve (5as it may be, but it is consistent so there are no concerns. She is a strong and healthy girl. 5 years remission and no looking back.
Saturday, June 30, 2007 8:05 AM CDT
Last week we celebrated Dan's 50th birthday. I planned a surprise where all our friends and family came to Cowtown Rodeo Saturday night. Dan was very surprised. Thanks to all that came!
Sami had 4 H camp this week. She loved it. I wish they had it all summer long.
Each week we are doing something different, but that is good too. She won't get bored this summer.
This week she is at enrichment camp through the school system. She is signed up for 4 - 1 hour classes from 8:30 to 12:30 at one of the elementary schools (not hers). I don't remember the schedule exactly but it is something like Water Sports, High School Musical crafts, cooking and magic. It is just 4 days with the holiday on Wednesday.
Check back from pictures...I'll get Dan to post some from Saturday at the rodeo, however I don't think he was in any.
Sunday, June 17, 2007 7:17 AM CDT
Join us today, Sunday June 17th....Father's Day
for the annual Kesley Run at the Somerville Eagles.
It is a motor cycle rally with great food, music and fun for the kids.
Kesley is a teenager that survived Neuroblastoma. Though she has no longer needs treatment, the money raised is used to help other children in need to pay for treatment. it is a great cause that we have supported for 5 years.
This year we will be hosting a booth where we will be taking pictures of the motorcycles and printing on site.
Please join us.
Sandy
Monday, June 11, 2007 7:45 AM CDT
Thanks to all of you that helped, donated and joined us at our 4th annual Alex's Lemonade Stand. It is not too late to help us. Go to this website to donate online: http://www.firstgiving.com/samigray
With the cash and checks from the event Saturday and the online donations we have about $1500 to send to team Alex. We are expecting a few other personal donations with company matches that should take us to $2000. Still pretty far from our $6000 goal. However we are going to work towards this all year.
A few good stories.
Maddie, Sami's friend that has also survived Neuroblastoma, stopped by and Dan got some good pictures of them. Maddie looks great!
A woman came up to our stand on Saturday and said her daughter was home with a bunch of girls who had a sleep over. She was going to get them up and have them come help us. I encouraged her to hold their own stand infront of their house. I don't know their names, but I hope they did well.
I dropped Sami off at a birthday movie party about 3pm after our stand and found that the A&P in Manville was also holding a stand. I stopped by and showed them pictures of our stand.
Learn more about Alex's Lemonade Stand at www.alexslemonade.org/
Wednesday, June 6, 2007 7:28 AM CDT
Join us for our 4th annual Alex's Lemonade Stand June 9th.
Gray's Family Foto
411 Route 206
Hillsborough, NJ 08844
908-359-5590
If you can't join us, but would like to make a donation, go to this website: http://www.firstgiving.com/samigray
Tuesday, May 29, 2007 7:23 AM CDT
Great Memorial Day weekend.
May is coming to a close, school is winding down and our guest Kate is here to stay with us. It has been a fun filled May.
Kate is our intern here for 3 months to work and learn from Dan. He has so much to offer a newly graduated photo student. The first day he took her along to NYC to deliver framed pictures. The second day they were fitting large art work to be framed and printing. It can all be exhausting. but they are managing quite well.
Saturday we all took the day off and had our previous part timer Jackie mind the store as we traveled to Casey's Equestrian to watch Sami in a horse show. Casey is Sami's trainer and she has 2 events a year at her stable for her riders. You may remember Sami participated last October. It is a great way to get a rider used to show events. Sami competed in 3 events and won two 1 first place and 1 second. YEA! Dan will post pictures soon.
After the event, we were all dusty, hot and tired, however we traveled by car 3 hours to Gettysburg, PA. It was a destination high on Kate's list to visit on the east coast. Our did I mention, Kate is from Wyoming. Sunday we toured the battlefields and took lots of pictures. Monday there was a change in plans as the rain rolled in. We headed home stopping for some fun at Carbella's a huge sport fishing, camping store with a restaurant. Sami even had fun.
Today we are back to school and work.
We are preparing for our annual Alex's Lemonade Stand June 9th. I hope you can join us. Click here for details: http://www.firstgiving.com/samigray
Sunday, May 6, 2007 10:38 PM CDT
Sami had a great day at the Somerset County Special Olympics on Saturday. 3 events - 3 gold medals.
Check out the pictures.
The night before we laid in bed and she told me..."I might only get 2nd or 3rd." I said, "that's ok, but why don't you think you'll get first?" She told me it was because Josef usually (she did win once) bet her in practice. Well, no worries on Saturday because the girls and boys compete separately in the Special Olympic games. Josef did win his race and everyone tried their best. It was a fun day.
Wednesday, April 11, 2007 12:30 AM CDT
Well, after the busy birthday month, we are now full speed into April. Dan and I celebrated 23 years of marriage on April 6th.
We spent a quiet weekend together going out to dinner on Saturday. We are working to get the spare room ready for our guest to arrive next month. Katie will be staying with us while she interns with Dan at the store from May 22 to August 16th. Sami can't wait to have a big sister.
Usborne Book fans be sure to check my website as the new spring titles are available. I offer online/catalog shows for those too far for me to come to demonstrate in person. If you are not familiar with Usborne, they are best the educational books. I started selling them 2 years ago so I could build a library of books for Sami and use the income for various causes such as Alex's Lemonade Stand, CHOP and Ronald McDonald House. Each year I donate hundreds of dollar worth of books and cash to support those that helped us though Sami's cancer treatments.
www.ubah.com/a2416
As summer approaches we are also working on our stand for Alex's Lemonade scheduled for June 9th at the store. Come and support pediatric cancer research.
www.alexslemonade.org
Monday, March 26, 2007 9:37 AM CDT
Tomorrow is Sami's 7th Birthday.
Yesterday we celebrated with a big party at a nearby ice skating rink. It was our first out of the house party. Usually we invite just a few close friends and family to the house. Sami was so excited to have all the girls from her first grade class and best friends...20 in total.
We took lots of pictures that Dan is working on printing and posting here...so check back and they may change.
For most of the kids this was their first time on the ice. Mine as well. Sami had been one other time at a friends' birthday party (which gave her the idea).
She gots loads of presents and she seems to love them all. But especially the princess rug she got from her godfather and riding lessons from her godmother. The hot toy these days is Webkinz. She has been begging for these cute stuff animals that are linked to a website with games and fun. She was lucky to get 3 different ones. Thanks to every that came and brought presents. We plan a night together tomorrow. Dan has someone to close the store so he can come home early. First stop will be Toys R US to use up all the gift cards and second we will go our to dinner.
Check back for pictures.
Wednesday, February 28, 2007 8:35 PM CST
Well the long awaited visit to Survivor Clinic. All went well. We had an informative meeting with Dr. Ginesberg. She is quite nice. She remembers Sami and was excited for us to be there. Sami continues to follow the 25 percentile for height at 44 inches and 50 percentile for weight at 49 lbs. They are quite pleased that she has not falling from her curve. No growth hormones needed. They didn't say anything about the blood pressure and I didn't notice. In the past Sami was elevated, but I'm sure it was because she didn't want to be there. Her pressure has always been fine at the pedestrians office.
Blood test is the hardest on Sami. Did I say she HATES needles. She chose Dan to go in with her so I don't know exactly how it went, but they got the blood and I hard screaming. I took care of the urine analysis collection, which I was lucky not to get peed on. The results take a few weeks on this and we are always told no news is good news.
Heart Echo and EKG were all normal. Dr. Ginesburg doesnt expect any heart issues and has changed these tests now to every other year.
Only thing we have to return for is a physiological testing. Mainly to complete the study which she was baseline tested before transplant. In addition, they hope to gather details that may help us and her teachers with specific learning issues which can be targeted in school. This doctor was sick yesterday and still not in when I called today.
So other than that, clean bill of health. Officially cleared of Neuroblastoma. Sami doesn't have to return for an oncology appointment till Feb 2008.
Thanks to all of you that purchased Usborne Books from me. I was able to deliver 50 more NEW books from the profits of my business. In addition, I delivered 3 boxes of used books to the Ronald McDonald House and about 10 grocery bags full of can tops. We scheduled another scrapbook night at Ronald McDonald house for a Sunday night in June. Volunteers and supplies are always in need.
We moved out of clinic and RM house quickly so Sami got home by 3:00 for the end of school. The enrichment after school fun classes started this week and she didn't want to miss her first class indoor sports. Thursday she has no cook cooking. Should be interesting.
Don't forget to check Sami's pictures from Chinese New Year celebration.
Thursday, February 22, 2007 9:04 AM CST
Happy Chinese New Year !
Sami celebrated in the holiday celebration at Milltown School this morning. With dancers and exhibitions, Sami was part of the Fashion Show. She looked beautiful up on stage. Check out the pictures (Dan to soon post).
A friend of Sami's from class last year called us last week with an invite to wear one of their customes. Sami quickly said yes and enjoyed the practice with her schoolmates.
Friday, February 9, 2007 8:04 AM CST
cold, cold and more cold with just dusting of snow.
Winter has finally arrived. Last month it was 70 degrees and now we are lucky to get to the 20's for a high. Though that doesn't bother Sami. She is very warm kid, most days not even wearing gloves. She is very healthy...lets knock on some wood to make sure it stays that way. She is amazing.
Keep checking the picture section. Dan is still posting pictures from our vacation in DisneyLand, CA.
Sami is taking Chinese on Sundays. We have a lot of Asian people in our area and there is a large enrollment of Chinese students taking appropriate grade level classes. Sami however is in the CSL #1 class which is Chinese as a Second Language. We are having fun.
I have learned about a search engine that gives donations to charities. At first Sami's school asked us to use it as the school gets 1 cent for every search. If you are interested in helping Sami's school, enter Milltown School, Bridgewater New Jersey. I was doing that for awhile until I noticed that Alex's Lemonade Stand was also a charity that could be selected. Of coarse you know I'm a HUGH supporter for Alex as her vision is to support research for childhood cancer and specifically she died of Neuroblastoma, the same disease Sami's had.
So the engine works just like yahoo and google. Give it a try to benefit the charity of your choice.
www.goodsearch.com
Thursday, February 1, 2007 8:52 PM CST
Just back from DisneyLand.
Dan and I had a scrapbook convention in Anaheim, CA this past week. However what we didn't know was that children under 14 were not allowed. This was a problem as Sami is our best purchasing agent. She helps us pick out the stickers and supplies for the store. So instead, she was on a total Disney vacation. Dan and I alternating going to the show and meet for dinner in Downtown Disney each night. We had lots of fun.
The weather was not sunny California best, however. It was cloudy and drizzling and cold ...well for southen ca standards at 60 degrees. But that did not stop us. Only thing it did do was cancel some of the outdoor programs like the Jedi training and High School Musical. But don't worry, she did see HSM 5 times over 3 days. She also earned prizes for helping to setup the tape for the HSM show...part of the million dreams getting buttons and pictures of the characters. Sami just liked helping.
We have asked her several times what was her favorite and she continues to say everything. We had lunch with Ariel on Sunday and she had 5 princesses that joined her which was a change from our last visit 4 years ago. Sami and I had breakfast with Minnie and friends and that was great to have Eore, Fairy Godmother, Chip and Dale, Tigger and Hook (she has been afraid of him since DisneyLand Paris, but they became friends this time).
I think the highlight was Libby Lu's where Sami got a hair and face make over and shopping spree. She loved it!
We'll post some pictures tomorrow.
Saturday, January 20, 2007 2:22 PM CST
Ok, Ok, I hear you all. Even I check the site and say we need an update. There just isn't enough time in the day to do everything on my plate.
So how is Sami? Busy. She loves 1st grade. She is a social butterfly with lots of play dates. She will even get on the phone herself and call her friends and after one leaves wants to call another. And I'm the same way...
Sami attends aftercare (program after school to help us working parents) and Tuesday they offer Tae Kwon Do so she enjoys that. She has taken it in the summer and always wanted to attend classes, but I find it too hard to get there 2 days a week at 6 so I have avoided it. But this is easy. She is already there.
Sami hasn't been riding horses lately. I didn't purchase the lessons antispicating it to be too cold, however we have had a mild winter. We just had our first dusting of snow of the season yesterday and that was only 1/2 inch.
We all had a wonderful holiday. Santa and our Friends and Family were very good to us. Sami enjoyed gifting presents as much as receiving which was a wonderful site. We spent the time between Christimas and News Years in Baltimore with Family. Sami loves to play with her cousins.
Even though they are all grown up, they take the time to play and do anything she asks even hide and go seek.
Scrapbooking continues to be our best seller. We are excited about some local events we are taking part in that we hope will grow our business. Next week we will attend the CHA Craft and Hobby Convention and Show. Can't wait to seek in a few days at DisneyLand.
We will be scheduling CHOP doctor visits upon our return. Sami will be attending the long term clinic for the first time.
Happy New Year
Wednesday, November 29, 2006 11:27 AM CST
As the holidays approach, it seems as though time flies even faster. I can't believe it was Nov 9th I last updated. We were just back from Disney. Hopefully you have been checking the pictures as Dan has been changing them weekly. So even though I haven't kept my end up, he has.
SAmi has join the 4 H. Now she wants to belong to the horse club, but you have to be in 4th grade for that so she is in the prep squad. In addition, she joined another club that visits nursing homes with their pets. Sami takes minnie her hamster. We went 2 weeks ago to create cards and goodie bags for our visit this week to the VA hospital and last weekend we went to the nursing home in town. She liked bring a smile to the patients and making them feel better.
We have had Sami's progress review with her teachers, speech therapist and reading teacher. She is progressing wonderfully. In some areas with her class, other areas at the lower end. We were quick pleased that after 10 weeks in the 20 week reading recovery program she is at grade level. I expected her not to reach that level until the 20 weeks were over. She loves the special attention she gets one on one 30 minutes every day with the reading teacher. She is doing well with speech which is 2 times a week. Sami and Kevin have been partners in speech for 3 years, but the teacher has changed each year. She pronounces everything while she is reading and self corrects when she realizes she has said something incorrectly. However she does get lazy with some high frequency sounds when she is conversational talking.
The FM system is now working with her hearing aids, however she got used to the speaker and misses it. The kids around her miss it as well as it helped them too. Sami wants me to wear a mic and get the speaker at home.
The co-teaching teachers (one reg ed and one special ed) has many years of experience. They have learned quickly the areas that Sami needs assistance. For instance with money, she has a hard time on paper with the P in a circle for Penny and N in a circle for Nickel, however she can count and work with the actual coins. Now Dan and I think this is because she helps us with the cash register at the store.
Speaking of the store, Gray's Family Foto is busy and continues to expand with services. Be sure to check us out for all your photo needs (yes, email your files and we can print and can ship too)
Thursday, November 9, 2006 7:20 AM CST
Well...as it has happened to all of us, you are sure to understand....I had an updated 3/4 of the way done and it was lost. I haven't had time to recreate. Here is the short version.
Just back from Disney on Sunday as you can see from the pictures Dan has posted. We had a lovely time at the Ft Wilderness Cabins. It was nice to schedule time to relax at the cabins (fishing, riding bikes etc...) and not park hopping all the time. But when we did go to the park, we were there from open to close and we meet up with our great friends the Doctor's (Zachary's family). We have tons of pictures so check back and Dan will change them when time permits.
Dan has been struggling with photo processing equipment not working so he is playing mechanic. You have to be able to do everything when you own your own retail store. I'm juggling all my responsiblities which is crazy this time of year. Stressed with work and a full schedule of Usborne book parties has me on the go. Is there anyone intetested in hosting an online show?
Sami is doing wonderful. She is off from school today and tomorrow for New Jersey teacher convention. Today she has a playdate with Diana and a riding lesson. Tomorrow I'm off and Dan's dad and sister are coming up for a visit from Baltimore.
Thursday, October 26, 2006 1:27 PM CDT
Last night we went into NYC to meet up with my coworker Simon who is vacationing from the UK with his family. Simon and his wife Diane, 17 year old daughter Rachel and son Matthew who is 6 just like Sami. We all went to one of our favorite fun restaurants, a few blocks from their hotel, Jekyll and Hyde. The kids loved it. Matthew and Sami hit it off. I wish we could have brought them home with us. But they head out of town on a Princess cruise on Friday.
check out the pictures...
Saturday, October 14, 2006 6:58 PM CDT
Today Sami had her first horse show.
Grand Dad Jack, cousin Steven and girlfriend Nicole, Aunt Arlene and Mom and Dad were at hand to take pictures and video. It was a cool 56 degress wind was blowing but the sun was out making a lovely day.
Sami was in 3 events. Jumping, trail and post trot. She did GREAT receiving 6 ribbons, 2nd/4th, 1st and 1st, and 1st and 1st. Stop over to see the video. It is only 16 minutes...it will be much better than looking that the 1,000 pictures Dan took, plus the ones I took. But we were taking pictures of all the kids in Casey's group.
Check out more pictures from the event...
Wednesday, October 11, 2006 8:51 PM CDT
Last week was busy with an appointment every night and most of them were mine. However Sami did have horse riding lesson, a play date with Cherlin, hair cut appointment and 4 H open house...hey I guess they were all Sami dates.
Sami and I did some shopping after her hair cut. She really needed dress shoes and for a chance it seemed like every shoe she liked and fit so we went home with 5 pairs (some were on clearance - sandles and white dress - that will be great for spring) She also got 2 new dresses for class pictures and holidays.
Friday night I went out to join some friends playing Bonco. It was my best night ever, but I still didn't win any money becaue I tied someone and lost the roll off, boo hoo.
Saturday we celebrated with Zachary his 5 year remission. Sami went through her first transplant a week after Zachary left. So you could say she is 5 years as well, but I think they count her remission from the end of treatment which wasn't till Sept 02. Through it all, Sami still doesn't understand and she AND Zach had cancer. Zach and other friends do understand. We choice not to push it with her. To be honest it is great that she doesn't remember it all.
Sunday we went to a horse show and the horse that Sami rides won 6 first place...as a matter of fact he was in 26 events and brought home 24 ribbons.
Sami was off from school on Monday so she got in another riding lesson. We are hoping the rain cleans up by Friday for her next lesson. She has her first show on Saturday. Dan will post new pictures from the show next week.
Friday, September 29, 2006 10:29 AM CDT
Another week of work and school comes to a close and Christmas is heading our way. It is amazing how fast these weeks fly.
We have been busy this week with play dates and appointments. However one didn't go so well this week for Sami at the dentist. It was just a cleaning, but a few weeks ago she had a cavity filled, so she wanted no part or going back. Because of this seen, she lost some privileges like horse back riding. After a few discussions, she decided she would try again. We schedule an appointment at the dentist by our store so it would be more convenient and a place she would see daily...hoping it won't be so scary. Dan took her and she did GREAT. Of coarse I was quick to reschedule her riding lesson since she is preparing for her first show Oct 14th.
Last night we drove up to North Jersey after dinner to visit with friends just in from California. They are here for a wedding and visiting with family and last night was the only time open to let the kids play and us grown ups catch up. It was great to see you Marty and Stacy. I'm sure Dan will post some new pictures of Sami with Paige and Joelle. We look forward to our visit in DisneyLand with you in January.
Sami has a movie night date with Kevin tonight. A birthday party for Alyssa tomorrow. A family outing for all of us with the Federici's on Sunday at a festival with a sleep over with Kira since school is closed on Monday. I'm also off Monday and I plan to work at the store getting ready for our busy holiday portrait season.
Dan just called to tell me that the new EK success scrap booking order we placed just came in and a customer committed on our nice selection.
Come check out the store, Dan does it all....www.graysfamilyfoto.com
Tuesday, September 26, 2006 3:58 PM CDT
Thanks for all of you who check in on my dear friend Carol Miller from Bowling Green, KY.
Sadly, Randon pasted away over the weekend. http://www.caringbridge.org/ky/reidmiller/
Sandy
Friday, September 22, 2006 11:42 AM CDT
Time flys when you are having fun...or too busy to think.
Sami loves school and is tolerating aftercare though she would prefer to come home on the bus. I have changed her schedule with a slight compromise to come home on Fridays on the bus. We are generally running somewhere Friday evenings anyway.
We had back to school night and Dan sat at Sami's desk and wrote her a note. Sami is in a coteaching first grade class so there is a reg ed and special ed teacher at all time. Bridgewater works on a six day cycle so specials are never missed. Day 1, 3, 5 she has gym and the teachers are excited that it is the last period of the day. Day 2 is Art, Day 4 is Library and Computer and day 6 is Music. They are still working out the speech therapy schedule so I'm waiting to her. I got a call last week from the Reading Recovery teacher and Sami has qualified for reading intervention - a reading tutor. The program runs for 20 weeks, one-on-one 30 minutes every school day with the special reading teacher. I'm very excited she is getting all the special attention she needs.
We love the homework schedule as well. The teachers send home a packet on Monday and you plan the activities and return the work on Friday. It lets you space out the assignments and work them into our daily extra activities.
last Friday I had a great Usborne Book show at my friend Laura's in south jersey. It was over late so I relaxed with some friends and spent the night.
I'm looking for people to host a party (online www.ubah.com/a2416, catalog show or in home). This is a great time of year as books are great gifts for the holidays. And II have a new shipping of books with the new titles arriving next week. Ask me about joining my team for selling Usborne Books. Call me for details.
Saturday I cleaned the garage in preparation for new shelf organization getting installed this weekend..I can't wait. Sunday we went to our friend Angie and Steve's. Sami always has fun with Kira and Melissa.
Tonight Sami has horse back riding lessons. She is getting ready for her first show on Oct 14th.
Tomorrow I am demonstrating scrapbooking at our store. Call for an appointment...
Sunday, September 10, 2006 8:50 PM CDT
We had a wonderful week. Sami loves school and can't wait for home work.
Saturday she had a playdate with her friend Joshua. He has a crush on her. In the evening we went to dinner and Sami's front top tooth fell out. She is so excited. She showed half the resturant. Afterwards we went to the farm to work on the craft for Sunday's party.
Sunday was Kaylee's 4th birthday party. It was a prefect 75 degrees and a bit overcast at times which Dan and I liked for pictures. Shauna had Paddy Wack all shampooed and looking great as he gave everyone pony rides and Dan took pictures. We printed the pictures right there and glued to mat board with a real horse shoe. The kids loved decorating them and taking them home. We had lots of games and swimming of coarse but the highlight was the treasure hunt which is so fun on the farm.
Dan will post pictures soon....
Wednesday, September 6, 2006 7:48 AM CDT
First Day of School
Sami started first grade today. She was very excited to meet her friends Kevin (the one that is a day older) and Eric in the neighborhood at the bus stop. Of coarse we were there at 8 and the bus wasn't due till 8:19 and they were late, passing us almost 3 times till we flagged them down. I assume she is settled in her seat in her classroom by now.
Yesterday was open house to meet the teachers and get acquainted with the school. Sami of coarse knew the school from last year, but her friend Kevin from the neighborhood went to another school for Kindergarten so this was all new to him. Sami showed him around. I visited with parents. It was all very exciting. I think I'm more nervous than she is.
Sami was able to pick out her desk and put her name tag on the desk. This is all very exciting for her as last year there were just tables not desks and she was very disappointed. Now all of you will remember from Kindergarten graduation that Kevin Li that was pictured with Sami with the missing front tooth. Well, Kevin Li is her speech buddy and they are again in the same class for the 3rd time in a row. It is nice that she has such a wonderful friend in Kevin Li. Sami wanted Kevin to sit next to her so she picked out his name tag and put it next to her desk and waited for him to arrive.
It is going to be a great year. I expect alot of changes as Sami learns new things.
Check back for pictures that Dan will post and news from Sami on her first day.
Friday, September 1, 2006 12:23 AM CDT
Last weekend Sami and I drove to Baltimore for a weekend with family and friends.
She was in Tae Kwon Do camp all week. On Friday she had horse back riding lessons. This was just her second with Casey on Jazz and she is doing great. Walking, post trot, seated trot and jumping. You should see her (well, I'm hoping Dan will post a picture from her first lesson). I can see this is going to be an expensive venture. We spent $100 on new riding boats, 1/2 chaps and riding britches. She is training for a show October 14th. She is already learning the routine.
After lessons, we took the long road through PA to Baltimore. It was probably the same distance from Casey's farm as going our normal route down 95 through Philly, but that 78 to 81 to 83 felt like it was going to take forever with the construction and traffic. We got to the Wiley home in Elk Ridge before dark and Sami had a great time with her cousins. John gave her a game boy and now she is all grown up. We went out for snowballs...so you know I was happy.
Saturday we drove to Hagerstown to meet my Dad and Karan's friends at the Moose. All we excited to see how well Sami is doing. They were so supportive in many ways during her illness. After lunch, we headed back to Elk Ridge to have dinner with the Wiley's. They had tickets for us to join them at a BaySox game. We all had fun!
Sunday Sami and I went to visit my dear friend from High School Gail. Her girls Renee (9-4th grade) and Jennifer (7-2ndgrade) are just a bit older than Sami and they got along great. Bibble, guinea pig was so cute. Then off to my friend Donna's...well her parents house. Donna was on vacation but I visited with her family Eloise, Danny, Randy, Laurie and Ashley. Again Sami found a friend in Ashley and played as we talked about the olden days.
At 3pm we meet Carol, Ronnie and Lon with his daughter Megan at Scooters for Crabs. 4 hours later we were all STUFFED. I loved it. Even Sami had fun and joined us picking and eating crabs, shrimp, and mussels. The highlight of my trip since I dont get Maryland Steamed Crabs too often and visiting with great friends!
Monday we went to Dawns house to visit with her family. Her daughters Kimberly (19) and Danielle (6) showed us this great park and treated us to lunch. Then back at the house Danielle and Sami, played and played and played. I couldnt get her to go home. Finally after the long drive we arrived home at 8pm with Daddy waiting for us. Exhausted, I think I was asleep before her.
Tuesday, August 15, 2006 12:44 AM CDT
HAPPY BIRTHDAY TO MY SISTER, PATTY !
Sami has had a GREAT summer.
Father's day she learned to ride her bike without training wheels. She finished 8 swimming lessons in June and now is a fish going underwater (with googles) doing hand stands and flips (front and back).
July she went to camp and had a wonderful time with lots of play dates along the way. The first week of August she went to vacation bible school and loved it (dig it) and then Tae Kwon do camp last week.
She start horse back riding lessons on Jazz a beautifullly LARGE pinto horse at Casey's Esquestian. She is doing great.
Yesterday she had her 6 year old check up. I know about 6 months late, but in Feb she had CHOP clinic and March 2 teeth pulled, I didn't want to stress her any more. And anyway this was just a formality. She is doing great, no issues, no colds the only thing she has had all year was the stomach bug on vacation (figures). She measured in at 44 lbs 6 oz and 3 feet 6 1/2 inches. (just like her transplant buddy Zachary) As a matter of fact after the doctor's appointment we went to Zacharys for dinner and Zach learned to ride a bike without the training wheels (yea Zach). We are so excited for him. They did a dip in the pool before the night was over.
So going forward Sam will have oncology appointments in Feb and yearly ped appointments in August. usually you need a doctor visit before school anyway.
This week I'm off a couple of day to spend with Sam. We are going ot the 4 H fair here in town and having some play dates with friends.
Please pray for our dear friends, the Miller's (Reid's page) http://www.caringbridge.org/ky/reidmiller/ Reid passed away 4 years ago and now his new baby brother Ranyon has the same symptoms.
Sandy
Friday, July 14, 2006 3:16 PM CDT
Last weekend we went to Ocean City Maryland to meet Dan's family for a vacation. We spend 3 nights and 4 full days playing at the beach.
Monday, July 3, 2006 9:39 AM CDT
Today was Sami's first day of Children's Corner day camp. She will be there all day all week for the month of July. she didn't want to go of course, but I'm sure the month will fly. I'll miss her mid day hugs and updates. This will be her last month at Children's Corner. They are closed in August and September Sami will start full day First Grade! She can't wait.
Children's Corner is a wonderful loving nursery school. It was the first school I left her at when she was 3 years old. I still have the picture of her first day hugging Ms Cirona. Thanks Chris and Jean and everyone...for all you do.
We are looking forward to our visits with Zachary Doctor and family tomorrow.
Friday, June 16, 2006 8:05 AM CDT
Sami has had a busy week getting ready for the end of school. She had LOVED Milltown Kindergarten. However we continue to fight to go to aftercare at Children's Corner. I think she thinks she is too big to go there. Well just one more month (July summer camp at CC) and she will be done with that chapter.
This week Sami's Kindergarten class held a concert and had a beach party to celebrate year end...they didn't have a formal graduation and I'm glad. Graduation is for 12th graders.
Attached are some pictures...
Saturday, June 10, 2006 3:07 PM CDT
Great news...
Our Lemonade Stand was a big success today raising $2500 !
We will continue tomorrow at home hoping to reach our goal of $5,000...still looking for a sponser to match our total.
Tuesday, June 6, 2006 10:44 PM CDT
We are hosting our annual Alex's Lemonade Stand this weekend.
Saturday June 10th
Gray's Family Foto
411 Route 206
Hillsborough, NJ 08844
908-359-5590
Sunday, June 11th
our home
56 Huntley Way
Bridgewater, NJ 08807
908-704-8057
If you can't come....host a stand yourself!
www.alexslemonade.org
Thanks,
Sandy
Thursday, June 1, 2006 11:24 AM CDT
Memorial Day weekend was HOT here !
We went to the Bison farm on Saturday with friends. Sami thought the pig pen was peeyou and the lady bugs were better than the stinky buffalo. We returned home to enjoy the hot tub which we keep a cool 90 degrees.
Sunday we spent the day at the farm in the pool and fishing. Sami caught the first one, but Thomas caught the most at 10 sunny's (all fish were released unharmed (well almost).
Monday, Kaylee came up for the afternoon and then we went back to the farm for dinner, however a thunderstorm came through and you have to be careful as the farm has been known to get hit by lightening (safe this day).
Sami is loving swimming only after 3 lessons, she began going under. A bit accomplishment for a child that hates getting her face wet and doesn't like taking a bath.
check out the new pictures.
Friday, May 19, 2006 3:51 PM CDT
Check out the new pictures of Sami riding her pony and swimming. She is taking swimming lessons on Tuesday evenings with her friend Conner.
I am celebrating my 1 year anniversary with Usborne Books. I have successful meet my personal goals. I will be having an open house May 31th...I hope you can make it. Or check out my website to place an online order: www.ubah.com/a2416.
We are preparing for our annual Alex's Lemonade Stand scheduled for June 10th 9am to 2pm at our Store (Gray's Family Foto, 411 Route 206, Hillsoborough, NJ 08844 908-359-5590 and June 11th at our house (call for time 908-704-8057).
I need volunteers to help!
Thursday, May 11, 2006 4:30 PM CDT
I can't believe it has been a month since I last updated.
The week before Easter Sami was off from school so we did alot of juggling with playdates, doctor's appointments and such. The most important being the dentist where Sami had her 2 top baby molars extracted to make room for the 6 year molars that were getting impacted. The good thing is that she will not need spacers since the permanent teeth for this area did not form so the dentist plans for the 6 year molar to move in. Of course she cried through the whole thing and swears off going back, but she did learn to rinse and spit. The missing teeth are also on the bottom, but the new molars have a bit more room so they plan to keep the baby molars as long as we can. This is not an issue of chemo as I was worried. Apparently it is hereditary with Dan and I both missing one molar, Sami has a ressive gene.
Sami stayed with Aunt Arlene Easter weekend. She loves playing with her dog Lucky.
April 21st we drove to Baltimore. Sami played on Saturday with her cousins while Dan and I shot a wedding for a friend (too bad it rained on the outside wedding moved indoors)
Dan and I are busy at the store with National Scrapbook Day on May 6th. We are building our busy with some fun customers. It is every exciting come join us. I have set up a scrapbook room in our home as well.
June 2nd Sami started swimming lessons. All her idea. However she tells the teacher what she will do. See she still doesn't like the bath and getting her face wet. But she wants to know how to swim. She tries everything except putting her nose and eyes in the water, so far. She is like me in the respect that she watches what to do and tries to have the best form. And the best part is that we have a standing date with Sami's boyfriend Conner every Tuesday at 6:30 for swimming.
We are getting ready for recital for dance. She takes ballet and tap, but only does a tap performance. We will be doing some juggling again June 17th because we have another wedding in Baltimore that weekend and Sami has rehearsal and group photos that day. The recital is June 24th.
I am celebrating my 1 year anniversary with Usborne Books. I have successful meet my personal goals. I will be having an open house May 24th...I hope you can make it. Or check out my website to place an online order: www.ubah.com/a2416.
I will post more info soon about our Alex's Lemonade Stand scheduled for June 10th 9am to 2pm. I need volunteers to help!
Tuesday, April 11, 2006 7:02 AM CDT
Sami has had a great time with Grand Dad Jack and cousin David this week. They were here to help out with Sami since she is on Spring Break and Dan and I have to work. They leave this morning, but she has a date with Conner for lunch and plantiarium.
Wednesday Sami has a dentist appointment but little does she know that she is getting 2 teeth pulled. Her 6 year old molers are getting impacted under the existing baby molers. The weird thing is that there are no permenant teeth waiting to fill these areas so we are going to let the new moler fill the whole. No spacers needed, however sure to be braces sometime.
Thursday I have to go to the city for a meeting. Sami will spend the day with Aunt Arlene. Friday Sami has a play date with a friend.
Thursday, April 6, 2006 10:27 AM CDT
22 years ago, Dan and I got married on a Friday with a small group of family and friends at a candlight service.
Today we are taking the afternoon off to enjoy some time together.
Sami is healthy and happy to enjoy this time with us. Nothing special, just a few appointments and hopefully a nice dinner.
Monday, March 27, 2006 8:01 AM CST
Guess who is another year older?
Sami turned 6 years old today at 6:55am. The funny thing is that we have the alarm set for 7 and I woke up and looked at the clock at 6:54! funny.
Sami had a wonderful birthday celebration yesterday with lots of friends and parties to fill the day. It was quite exciting for all of us. Thank you all for the wonderful company and presents of coarse.
Sami will be celebrating at Milltown School today with cupcake snack and at Children's Corner with an ice cream cake. After school we will be going to Toys R Us to extend the fun and let Sami pick out items that she didn't get yesterday that were on her list.
Please sign in with your birtday wishes today so we can have them saved into her scrapbook.
thanks,
Sandy
p.s. I did update the journal about a week or so ago and it didn't save so sorry for the long delay.
Tuesday, March 7, 2006 4:23 PM CST
Well just back from Disney and wish we were still there. Dan is printing and weeding through the more than 1600 photos. Well considering we were there 10 days that isn't bad. But we really didn't take pictures until the last 4 days.
All to reminiscent of 5 years ago, Sami came down with a virus and vomited Thursday, the night before we flew to Orlando. Thinking it was just a 24 hour thing I kept her home from school which she didn't like because she felt fine. She didn't eat, but wasn't sick, so it seemed. Our flight was at 3 and we checked in the Doubletree hotel by Universal getting upgraded to a suite (how nice). Saturday we spent the day at Universal. She seemed just fine, except when she asked to go back to the hotel at 5pm. Sunday she woke up not herself saying she was cold and feeling a bit on the warm side like a low grade fever. So we cancelled our plans to go to Magic Kingdom to meet friends and stayed inside while Dan went to PMA (Photo trade show). We moved to Crown Plaza (not upgraded) and just hung out in the room till dinner. We went to the Swam for dinner with Goofy and Pluto arranged by Sami's previous Oncologist, Don and friend Scott. It was nice visiting, however Sami was not herself, eating particularly nothing.
Monday Sami just wanted to sleep and that she did till about 3pm when she was ready for a stroller ride around the hotel. We went to Downtown Disney for dinner and shopped. Tuesday Sami woke up with a rash on her checks. We had breakfast scheduled but cancelled to let Sam rest. We meet with Fitia our Timeshare friend. We own at the Sheraton Vistana Villages....A wonderful place we recommend (call me for a referral). Afterwards we went to the trade show with Dan.
Wednesday I let Sami reset in the morning and we meet Dan at the trade show after we checked out of Crown Plaza. After the show (we won some goodies at EK success booth) we moved to the Walt Disney World Ft Wilderness Cabins. We highly recommend this property. If it were up to me we would still be there. Sami loved getting around by Golf Cart. I loved the convenience of the boat to Magic Kingdom and the buses to the other parks. The weather was great and the trip was relaxing...unlike our previous trips were we spent open to close at the park. In the evening we ate at Trails Inn a wonderful buffet, but Sami wasn't eating yet. The best was every night there was a bonfire to roast marshmallows, sing along with Chip and Dale and a Disney Movie outside screen.
Thursday Sami was back to herself, finally eating. We spent all day at Magic Kingdom. Breakfast with Cinderella, rides, shows and fun.
Friday we spent the day at MGM. Dan and I treated ourselves to some new cells you have to come see. Though we are Disney animation dealer now, we can't get these special ones reserved for sale at MGT only. Sami loved Playhouse Disney, Belle, Star Tours ride, parade and playing in the animation area. I loved the Prime time cafe dessert. Back to the cabins for movies and marshmallows, yummy!
Saturday we spent the day at Animal Kingdom. Pocahontas and Lion King were first. We wondered through the animal areas and took the Safari. Then headed back to enough the cabin property for Mickey's BBQ. Again, highly recommended.
Sunday we ventured home and if Sami didn't forget her hat on the plane all would have ended happily.
click here to see some pictures...http://disneyphotopass.go.com/DPI/r.d?i=464715559
Monday, February 13, 2006 8:17 PM CST
Sami did great at CHOP today.
We were an hour late due to traffic on 95. Apparently an accident since we sat not moving for most of a half hour. But appointment time really doesn't mean nothing in a clinic. The triage went well. Sami has grown 1 inch and gained 1 pound in 6 months (great for her age). The doctor had told us last time (about 6 months ago) that this time there would be no shots and Sami questioned this every time we mentioned going. When we were called to the lab both of us froze and told the nurse she didn't need blood and we were told we had to go there to get the cup to pee...shuuuu. She likes peeing in a cup. Then after a couple of moves from room to room, we saw Dr. Reilly. She is every pleased to see how well Sami is doing. We were told as long as the pee test, heart echo and EKG are OK and that the other docs don't need further tests, she doesn't have to come back for a year. YEA!
It was still uncertain whether that would be with Dr. Reilly or the long term clinic.
The EKG was no problem, but she didn't want to go into the ECHO room. dan and I didn't understand since we had been telling jokes about the jelly/location (peanut butter and jelly). But to her this room looked like a CAT scan and she wanted no part of it. I had to carry her in and soon she was ok with it. The echo was over after 1pm and we were all hungry. Sami choose McDonald's of coarse so Dan and I suffered through.
At CHOP today, I donated about $300 in new books from Usborne. Used the commission I earned and the free books and donations from friends. Thanks everyone for your help (especially you Carol). I told Kim I wanted them given to kids after blood draws. I explained that kids out of treatment are older and are scared. They need more of a reward than just a sticker. They already had donations to give out so I asked her to hold onto them till they are through with the others. BUT they really needed books. I also took a big box of Sami's slightly used books as well and the Child Life team was thrilled. There were no books on the cart in the lobby and very few on the racks in the clinic. Generally they just take new books so I was surprised. I will be accepting slightly used books to take down in the late spring so feel free to drop them off.
After CHOP we went to Ronald McDonald house to deliver can tops and donations. We also scheduled a scrapbook day were we will take supplies and teach people the craft. Volunteers are welcome to come help. Tentative date is March 19th.
We were on the road home by 3pm missing Philly traffic. We were able to stop by Tammie's for hair cuts then off to the store to relieve Larry who had been minding the store all day. We all at dinner from Alfonso's at the store.
Dan read to Sami tonight while I caught up on work.
OH, be sure to see the picture of Sami with her missing tooth. She lost it during dance class on Saturday. Luckily the toothfairy is magic and was able to come during the 2 foot blizzard we were hit with that night. And thanks to the blizzard, schools were closed today so Sami was not counted as absent from school. She has prefect attendance.
Monday, January 30, 2006 9:18 AM CST
We had a wonderful time in New York on Friday. Since we were going away from the traffic (most people are coming out of the city at 4pm on Friday) we got to Jersey City in less than an hour. We took the Ferry acrossed to New York. It was a nice day for the short walk to the Winter Garden and the American Express tower.
We meet up with Trish our friend from Australia. She was nice to purchase some Saddle Club clothes for Sami. Sami played shy at first but by the end of the night she was playing wak a bum with Natalie. We ate at Kitchette, home cooked meal was what the doctor ordered for Trish and her friend Oliva as they were feeling a bit out of it from the late Australia Day celebrations the night before. Christina and Natalie joined us. We had a great time.
Saturday after ballet, Sami packed her suitcase for an overnight at Aunt Arlene's her godmother. They had loads of fun with Lucky her dog and Ar's mom and cousin for dinner and movies. Sunday Arlene took Sami to see Princess on Ice. They already have their plans for next year.
Be sure to check out the new pictures.
Thursday, January 26, 2006 10:21 AM CST
Well a month later and we still have a wiggly tooth. The tooth below however doesn't care that the old tooth is still there, it is coming in behind it.
Sami was out to ride her pony Patty Wack last week. Kaylee was sick so Sami and Patty got some extra time together. This week is cold and we have buzy schedule. Hope to get back to the farm next week for a ride.
We are going to New York to meet up with my coworker Trish tomorrow. She is from Australia and has brought Saddle Club clothes for Sam. Trish in in town for a business meeting this week. We hope to meet up with some friends/coworkers while in the city. Join us!
Sandy
cell phone 908-240-7620
Tuesday, January 10, 2006 10:33 PM CST
Happy New Year !
It was a wonderful holiday. We were all healthy and happy. Sami and I spent most of our vacation in Baltimore visiting family and friends. Unfortunately Daddy could only spend christmas and new years eve with us. He was home working the rest of the week. That is the disadvantage of owning your own retail store. But the photo store is doing great.
Sami has been busy with school and playdates. Last weekend she had 3 birthday parties.
We have been to see Patty Wack several times, but today Sami rode him for the first time. She did great and so did Patty. I think they will be great friends. We hope to visit and ride weekly as time and weather permit.
Sami's next visit to CHOP is February 20th. Just clinic exam and pee test (no blood) and EKG and EEG.
Sandy
Sunday, December 25, 2005 8:22 AM CST
Merry Christmas everyone!
Sami was very excited about Santa Clause coming to her house last night. He left a like milk in the glass and ate the muffin and 2 cookies with one only 1/2 eaten. She was excited to see her build a bear glittery horse got a purple blanket and how Santa posed her purple hope bear.
She loves all her presents and Daddy is starting to put them together. They think I'm packing for our trip to Baltimore, but I had to tell you the news...
yesterday at the farm (Christmas Eve), Sami went to the barn to help feed and found a wonderful present. She and Kaylee will share a white pony (12 hands). She was so excited. The pony's name is: Patty Wack. (what do you think about that Patty (my sister)?
Pictures to come soon.
Sandy
Thursday, December 22, 2005 8:27 AM CST
Sami has her first wiggly tooth!
She is so excited. We will post pictures when it falls out. How long does that take, a week?
Happy Holidays.
Monday, December 19, 2005 9:57 AM CST
Happy Holidays
I've made a point this year to start early, do less and enjoy more. I feel good. Less stressed.
Friday was Sami's Christmas program at Children's Corner. I took her out early from Milltown School because it began at 11am. Sami sat with her friends Conner and Gianna. Her friend Bhavya was Mary and her friends Naha and Cameron were in the front with the Kindergarten class. Cassidy is not at Children's Corner this year as she attends her local public school for Kindergarten like Sami. However her parents where there to see her sister and I invitied Cassidy to sit on my lap in the front so she could see better. It was lovely.
After the program I had the day off from work and there was no afternoon class for Sami so we had lunch and went to her boyfriend Zachary's house. They always play so nice and she never wants to leave. Too bad they are so far away (1.5 hour drive each way).
Saturday Sami had ballet, but no tap since they were celebrating the holiday with a gift exchange and treats. I picked her up at 10 and we went to a birthday party for her friend Aaron. Luckly we had the afternoon free so we spent the time at home doing crafts and making cookies. In the evening Santa came on a firetruck and Sami was so excited to see him, jumping up and down with the neighbor kids. When Dan came home we rode around the neighborhood looking at all the holiday lights.
Sunday we rested at home as a family. I cleaned up Sami's room making room for new items sure to come from Santa. At 3pm we drove to New York City to see the big tree in Rockefeller Center and take a horse and carriage ride. We didn't wait to long when a man came up with his horse and asked us if we wanted a ride passing others waiting in line. But Sami passed this offer hoping for a white horse. We waited and waited until we finally had an offer from a man with a white hors named Rocky. We didn't get a picture of the horse, but check out the pictures of us in the carriage. It was a clear and cool day about 40, but still great for walking around the city in the winter.
Sami is at school all this week and we just have a few plans like getting our hair cut, parties at school and lunch with friends.
Don't forget to sign in to our guest book.
We've made the newspaper (again).
http://www.nj.com/search/index.ssf?/base/news-3/1135069611227750.xml?times?ngx&coll=5
Also look for us on a Red Cross commercial channel 6 in the Philly area.
Wednesday, December 14, 2005 8:45 PM CST
Merry Christmas and Happy Holidays to all.
Hopefully by now you have received our holiday letter. I'm sure you found it a bit different and unique, I hope. If you have not received it, send us an email to get on the mailing list.
We have been enjoying the snow and cold weather. Shopping and visiting. School and work.
I had hoped Dan would get some new pictures posted, but the customers always come first. Other than last night because I had a meeting, he had not been home before midnight in 2 weeks. If I can get my hands on a copy of files this weekend I'll email them to myself and post for you. Sami loved seeing Santa. She had to shop (and boy can she shop) for a new dress for the occasion. Wait till you see it. Purple of coarse.
Today, Sami and I went to Philadelphia to preview the Red Cross commercial we filmed a few weeks ago. We were suppose to go last week, but 8 inches of snow delayed the meeting between the marketing team of the Red Cross and the others in the commercial. It will air on channel 6 in Philly and 7 in New Jersey. Let me know if you see it. They are also going to put it on the web and run some radio ads as well.
This time of year blood supply gets dangerously low. They are very concerned about the school closing last week which cancelled 2 drives a loss of over 500 units of blood. Please donate.
Enjoy the holidays. Try to take time for yourself and your family. I'd like to see the holidays get back to more family and friend time and less presents and stress.
Don't forget to sign in to the guest book.
Sandy
Monday, November 21, 2005 9:24 AM CST
I'm so excited I could cry (while I am).
We are planning our trip to a photo show in February. The best news is that convention is in Orlando. We had a hotel for the first 3 days and decided that we would spurge for 2-3 nights on Disney Property. Specifically Wilderness lodge cabins so we could be close to the stables for Sami to go riding. I was able to get a discount since I work for American Express, which generally doesn't work out for us. But there was a snag. I need to provide proof of employment with a specific card which I found while reading the number had expired. So I have been searching for someone to help me with this all morning when I got a call in reply to an email. It was a coworker (Pat Gray) which has the same last name but not relation. We worked together about 5 years ago when we all reported to the same team. I quickly called Disney confirmed everything and decided with that great price we will stay 4 nights. Now I have to work on the flights. I can't wait for 2006!
Anyone going to PMA ? We are finalizing our plans. Looks like we will fly in Friday, Feb 24th and stay at DoubleTree near Universal for 2 nights and do the studio amusements. Then to Crown Plaza for 3 nights, for the PMA show. Then to Disney Fort Wilderness Lodge - Cabins for 4 nights to relax and enjoy nature, returning home Sunday March 5th. Want to join us? Stacy? Stormy? Anyone?
When we first told Sami she wanted to see Mickey, but didn't want to spend the night. See Sami is a home body. Hates to spend the night anywere. Yet when she gets there she loves it. Now today she said she would go but we can't stay too long. I know her once we get there she isn't going to want to leave.
In the meantime, she is excited because her godmother called yesterday and has offered to take her to see (Cinderella) Princess on Ice and spend the night.
Dan will post new pictures soon. She did wonderful in the studio yesterday for her holiday pictures. Afterwards we went to the mall to see Santa. She forgot what she wanted, so she proceeded immediately upstairs to the Disney store and wrote down everything Cinderella she wanted.
We are thankful for our precious daughter.
Thursday, November 17, 2005 11:43 AM CST
We have had a wonderful fall. November has been warm and sunny (ok we have had some rain).
Sami joined Kaylee for a pony ride 2 Sunday's ago and last Sunday she went to a birthday party with pony rides.
Sami loves Milltown School. Today starts single session days till Thanksgiving. It just means she get home about a half hour earlier and the all day kids get home about 2 hours earlier. This give the teachers time to plan and schedule conferences with the parents. Unfortunately we couldn't coordinate the teacher and speech meetings so I have a meeting with the speech teacher today and her Kindergartern teachers on Tuesday.
Dan is busy at the store. This is the time that everyone needs their family pictures and holiday gifts. That is great news.
I'm busy with Usborne Books. Do you want to host a home show? Even if you are miles away we can still plan an eshow. I have one running right now for a friend in Bowling Green, KY. Sales have been wonderful. Carol is donating her free books so I can order books for the sick kids at CHOP. Do you want to help us? Set up an online show of your own to earn free and discounted books, or join an existing eshow and order online at www.ubah.com/a2416. Select either Carol's show or my Open House Dec 1st.
The neighborhood vendor show went well. I displayed my Usborne Books. Please visit the following websites.
Mexhicco Silver www.mexhiccosilver.com
Authentic Mexican Silver Jewelry. Best quality .925 sterling silver and a great variety at very good prices!
Party Artsy: www.party-artsy.com
Personalized gifts and personalized party favors. Each item is hand painted.
Thanks,
Sandy
Tuesday, November 1, 2005 3:53 PM CST
Sami had a wonderful Halloween. The weather could not have been better at 73, full sun and no wind. NO Coat necessary. She actually started partying sunday at a friends halloween party. It was perfect timing and Dan and I had a photo shoot during that time.
Monday Sami rode the bus to school and I got into my Doopy custome. Then when I got to the school I helped the kids get into their customes (the can't come in custome on the bus). Then all 3 Kindergarten's paraded around through the classrooms. It was so much fun. When they got back to the room they had time for one book before going off to music. While they were out of the room, the moms and I decorated and got all the snacks and crafts out. They got back as we were handing the last of the balloons. There was plenty of time for making several craft projects and eating. Fun was had by all. Dan took loads of pictures, went back to the store and printed them and returned at 1:30 for the school parade with the pictures for the teachers. After the parade sami stayed home while I got in a bit of work. Shauna and Kaylee got here at 4 for trick or treating. After our first trip through the neighborhood, we retuned home for dinner. By this time it was dark and Sami loved answering the door and giving out the candy. We took one more trip out this time on our block. Then back to the house for the kids to play before Kaylee headed home at 8:30. Sami was so tired she was asleep by the 3rd story.
Dan will change the wedding photos to halloween soon.
Sunday, October 30, 2005 8:14 PM CST
We have had a busy weekend. Lots of pictures. Luckily it was beautiful. The rain is finally gone. Today was up to 70 degrees.
Friday night we had dinner at our friend Rick and Carol's. All Sami wanted to do was play with the animals (she has lovely dog and 2 cats), watch tv (saddle club) and eat chips and pretzels. I couldn't get her to even eat pasta. She fell asleep on the way home.
Saturday Dan and I had a bar mitzvah to shot. We took Sami with us dressed for Dance as I knew the before ceremony pictures would be done about the time she had to be at dance and that the Temple is just 5 minutes from our store which is next to the dance studio. After Dance, Sami and I meet Daddy at Duncan Donuts. Our friend Maddie came in while we were eating and visiting with another friend of daddy's. It was great to see her. She just came from her skating lesson. Then it was off to take Sami to Naz (big big na as Sami calls her) our next door neighbor's house. She spent the afternoon with them while dan and I took the pictures at the after ceremony picturs at the reciption. This is a great family that we have watched grow up. We did the 2 previous kids bar/bat mitzvahs as well. When we got home, we watched the breeder's cup horse race on tv which reminded me about the new movie Dreamer. We checked and found out the next showing was in 2 hours. Sami and I ran to the Pet Store to get a new fish. Blue fish died after a year and a half. Our longest ever.
Sunday we woke up to Sami saying new red fish was dead at 6:20am. The time changed on Saturday so now she is up earlier. since I was up, I went out to clean up the yard, pulling up the garden and getting ready for winter. Dan also closed up the hot tub for the winter, since we don't have time to use it anymore. Then I went to Wegman's to get some groceries, took red fish back and got purple fish.
After a quick lunch, I took sami to John and Emily's house for a halloween party. Then back to our house for me to get Dan and meet customer for photos. We went to Peapack/Gladstone area. The kids did great (so did you Chris), I'm sure we got lots of great pictures. then back to get Sami and go to the farm. We were delivering the pictures to Betty and Pat that we took for their 50th wedding anniversary. We stayed for dinner. Sami and Kaylee love playing. They had 3 new kittens at the barn, just 6 weeks old. Their mom left after a few weeks so Shauna has been feeding them. Sami has them named once gain...Dora, Boots and Swiper. They are very gentle. Appear to be all girls. I'll see if Dan will post a picture. One is yellow/orange, one is black and one is gray tiger...looking for a home.
Tomorrow is halloween, which appears to be a very busy. Post pictures soon.
Thursday, October 27, 2005 0:10 AM CDT
Well this time Dan has beat me to it. He has posted 2 sets of pictures and I haven't updated. Have you missed any?
Sami did great in the wedding. We were concerned she would pull a shy act (as well all know she is not, but she like to pretend). But as soon as she arrive at Sue and Tom's house she was eager to meet her friends Morgan and Dontae. They all did wonderful at the rehearsal. Afterwards at dinner, Sami and Dontae didn't even sit with their parents ditching us to see with the bridal party. I couldn't believe it.
Saturday Sami said she was cold all day. Well it was damp and raining. She couldn't wait to get into her princess dress. She looked beautiful is I say so myself. Thanks Sue for braiding her hair. Everyone did wonderful at the wedding. Michele and Glen make a wonderful couple. They are off visiting Mickey Mouse as I write this. After the wedding and pictures (which she also did great - except for some snifles and coughs) we continued to hear Sami was cold asking everyone to hold her. But late that evening she had a fever (probably was low grade all day). She has had a cough all week (something going around at school). She fell asleep on the ride back to the house (9pm) and continued to sleep as a house full of people partied till 2am.
Sunday Sami played with her friend Dontae. Sue and I looked at pictures all afternoon (over 2 hours)...well there are over 1400 pictures! Did I mention that Dan and I were the photographers? All digital.
We left for the long drive home about 4 but by the time we got the car loaded, full with gas, Sami with movie and CD w/headphones..it was closer to 5. We were surprised she fell asleep about an hour into the ride, but that isn't unusual for her when she is sick. We stopped at a diner type resturant and woke her for dinner. then she was up the rest of the trip. We got home about 10:30.
Monday we were all back to school and work. I'm busy with books as I just received an Usborne book order to deliver.
Tuesday Sami had a doctor appointment. The Audiologist had mentioned that she had some dark wax in her ears and the doctor asked for us to do drops each night for 2 weeks then come in for a check. The best news is the drops worked so she didn't have to flush her ears. Sami would hate that since she hates putting her head under the water because of the feeling of water in her ears. She was still running a low grade fever 99.4 or something. Dr. listen to her chest and back and said she has bronchitus. So she is on antibotic. Then her and I got flu shots. She didn't like that one bit.
Remember to keep checking the pictures as Dan has lots to post.
Sign in and let us know you stopped by.
thanks,
Sandy
Monday, October 17, 2005 8:34 AM CDT
After 8 days straight of rain, we were glad to see the sun on Saturday. However the fall wind is here.
Sami had dance in the morning Saturday. Then, Sami and I went to her friend Kira's house in Pennsylvania (over an hour drive). Sami had a gift for Zoe her new puppy. A vet visited her school this past week and gave everyone dog treats and Sami couldn't wait to give them to Zoe. Since it was such a nice day we drove out in the country (just 20 minutes from their house) to Last Chance Ranch. A wonderful farm that helps animals in despire. They rescue horses that are abused or getting sold at auction for food when they still have some good years in them. The girls loved petting the horses and taking a ride. However they weren't ponies, they were huge horses. Shires I think. Wait till you see the picture of the one Sami is on. Marge (how funny is that my mom's name). Sami wanted this one because it had a purple blanket and saddle. We also painted pumpkins, looked for marbles in hay and played on the moon walk. After some lunch we went back to Kira's house play abit. The owne had even driven to Louisanna and picked up stray dogs. Right now they are looking for foster homes. They can't be adopted for 6 months incase the owners are looking for them.
check out their site: http://www.lastchanceranch.org/
Sunday we took pictures for a dear friend who was celebrating her 50th wedding anniversary. Congratulations Betty and Pat. It was Betty's birthday too ! Happy Birtday.
We surprised the family as they came out of church. We took individual family groups shoots and a big picture of everyone. Another wonderful fall day (bit too windy for a good hair though). After taking pictures we picked up Sami at our neighbors (her second home) and went to Buffalo farm in Readington (just 15 minutes from our house) for a hay ride. It was lots of fun. They are actually Bison and they make wonderful burgers.
I have a busy week with an Usborne Book fair at Children's Corner. Last week I did a show at my doctor friend Vicki's. She donated all her free and discounted books and I donated my commission so that we could order 28 wonderful books for the sick kids at CHOP. Let me know if you would like to host a party. It can be online or a home show. You don't have to donate your books, but my profits will continue to got to books for CHOP or money to Alex's Lemonade Stand where all the money goes to ped cancer research. Want to help me?
Check out my online catolog....www.ubah.com/a2416
Tuesday, October 11, 2005 8:20 AM CDT
Sami had a nice day at Kira's house on Sunday. Dan and I had a Town and Country meeting not far from their house so it was a great opportunity for everyone. The rain started Friday night and the cold weather is settling in. The first storm (I think it was hurriacane Jamie) has past with lots of flooding (we are ok) and now today another storm is coming our way. There was at least a break in the rain for Sami's walk a thon to benefit her school yesterday. Dan took her to audiologist to pick up her right hearing aid that needed to be fixed. She did great with the testing. She looks very grown up sitting in the chair by herself. It used to be that she had to sit on my lap for everything.
Last week the FM system came in. She told me that the teacher put something on her ear to help her hear better. So it sounds like they have already tried it. I plan to stay out of it so she doesn't have a choose. I just encouraged her.
Sami's school works on a six day cycle. I know it is odd when there are 5 days in a week, but it is starting to make sense. There is a special every day like, gym every other day and the day she doesn't have gym she has either art, music or library. She has speech 2 days, but she doesn't miss any specials. She seems to like Milltown and her classmates. Of coarse she loves getting on the bus. We don't have any problem getting her up for the bus. When she comes off the bus at 11:40 I take her right to children's Corner. She doesn't like that. It is a small class of mostly boys (just one girl 3 days a week). Generally she doesn't mind that but I guess she is getting older and she says they are mean.
Yesterday we got in a big EK success order. We all had fun pricing and placing things on the wall. Even Sami helped. She loves the princess stickers.
We have a crop night scheduled for this Friday. Dan is a bit worried that we will have too many people ethis time. I guess Fridays are better than Thursdays for our customers.
Tomorrow I have Usborne Book show at Dr. Vicki's. We are donating the free books that she would normally earn to CHOP.
Don't forget, between Oct 8-16th, go test drive a Volvo. The are donating $20 for every test drive to Alex's Lemonade Stand.
Thanks,
Thursday, October 6, 2005 8:21 AM CDT
Well it worked. You have new pictures. I'll try to get him to update them again this weekend. Never fear, we have plenty of pictures to post.
Yesterday I found out the FM receiver system that the school ordered came in. In addtion, I got the call that her right aid is fixed. Dan will take Sami to Princeton on Monday to pick it up and complete the testing. Hopefully they will hook up the FM system (the teacher wears a mic and her speech gets transmitted directly to her aids) after that. I have a feeling she isn't going to like it. I'm going to stay out of it and let the professionals handle it.
I took Sami to meet Shauna and Kaylee yesterday and we went to the vets farm to ride Frosty Morning. It has been several months since we had been there. Sami took right to her again. I think it was best not to go back to Faxy the horse that throw her. Sami wasn't scared at all and kept asking me to let go of the lead line. Now Frosty is a large pony about 24 year old and Faxy is a bit bigger actually a horse about 5 years old. So I can't really see Frost running like Faxy did, but all the same, I didn't want to let go just incase. Also Frosty wanted to eat the grass so I had to keep her head up. After riding we grabbed some dinner on our way to the 4 H open house. Unfortunately prep does not begin till 1st grade so Sami will have to wait another year to join. And even that is just crafts and about horses. She won't be able to join the actual horse club till the 4th grade. Anyway, there was a clown club and Sami just loved it. I asked if they could be at our Alex's Lemonade Stand next year and they were very interested. You know there is a club for about anything? trains, model planes, go carts, badmitton, archery, and of coarse: chickens, sheep, goats, cows and sami's fav horses.
Looks like this nice weather will end tonight. Rain and cold front is heading our way. We are hoping that it will clean up on Saturday afternoon so Sami can ride Frosty again.
Sunday Sami is going to her friend Kira's house since Danand I have the Town and Country trade show.
Big news at the store www.graysfamilyfoto.com, Sandy Lion sticker order came in...the stuff is so nice. Most hand made. Join us for our next crop night Friday Oct 14th. Call for reservations. We have limited space and we have some confirmed people already. I'll be demonstrating the Wish Blade. Bring your titles to be cut. Online orders available (for those that can't make it....Patty).
Monday, October 3, 2005 1:04 PM CDT
another week just flys by.
Wednesday Sami did great at her Audiology appointment, however we found the right aid (the one she broke over the summer and was suppose to be fixed) is still not working right with 30 istortion. So it has gone out for repair again. Luckily we didn't have to finish up the last part of the testing since that wasn't working so we got out a bit early. Then we headed west taking all the back roads crossing the state from Princeton to Flemington for hair cuts (1 hour drive). Then from there north to our home in Bridgewater where Sami went off with a neighbor and I picked up another mom for Back to School night. The great thing is that we have a new school. The bad thing is that there is pratically no parking so we had to get there a 1/2 hour early. All went well. I'm the classroom mom so I had to get donations and volunteers for parties and such.
Thursday was out first Crop Night. We disappointed that we didn't get anyone. We are still learning what day is going to work best for everyone. Our next crop night is scheduled for a Friday night Oct 14. Sandy Lion stickers just came in today. I'll be updating the store website soon...www.graysfamilyfoto.com
Friday we had a photo shoot so Sami's teacher and our friend Chris took Sami to dinner with her new boyfriend and kids. We meet them there after we took 18 girls pictures. It was a beauty party. They had their hair and nails done next door and came to us for pictures. It was great fun.
Saturday Naz and Anjali took Sami with them to a party. That gave me a jump start on my Sunday project which was clean up the garage. Now I can get my car in the garage and we are all organized which makes me happy.
This week there is something for Sami on the calendar almost every day. today we went to the court house to get her passport renewed in preparation for her make a wish.
Tomorrow she has a play date with Conner and Jakob. Wednesday she is going horse back riding and Friday she is going home with Cameron for a playdate after school.
Don't forget to sign in with the guest book and bug Dan to update the pictures. He says why do it no one ever signs on....
Tuesday, September 27, 2005 7:17 AM CDT
This past weekend we made a quick trip to Baltimore for Dan's Dads' surprise 80th Birthday party. It was great seeing all the Gray family. But too quick for sure.
This week we have back to school night on Wednesday. Sami also has an audiology appointment in the afternoon.
Thursday is our first CROP NIGHT at the Store. Call for reservations 908-359-5590
Friday I'm going to donate Platelets. Blood products are in high demand with the tragedy in the Gulf. The Penn NJ region is normally low getting a portion of their blood supply from the mid west, so now more than ever we all need to donate. Those undergoing cancer treatment need whole blood and platelets on a regular basis.
Thanks,
Sandy
Friday, September 23, 2005 9:05 AM CDT
Well, a normal week here as Sami completes the second week of Kindergarten.
Sami had her first Ballet/Tap lessons last Saturday. I'll get Dan to post some pictures he has them at the store.
Next week Sami's has a routine Audiology appointment to check the stablity of her hearing loss. They call it a hearing aid check as they are making sure the setting are right for her loss.
We are also looking forward to Back to School night at Milltown School. Dan hasn't been there yet. OH, the classroom parents where choosen last week and my partner and I was choosen (since we were the only ones that volunteered).
Calling all scrapbookers !
Join us for our first CROP NIGHT at the Store. Call for reservations 908-359-5590
Thanks,
Sandy
Friday, September 16, 2005 6:10 AM CDT
Well the first week of school has come and gone. We are all finding our grove. We should have the routine down by next week. I'm still figuring out the best time for Sami to be asleep. It is a little hard for her (and us) to get up at 7am after the relaxed 8:30 we had been doing. Bed time has improved from the 10-10:30 bedtime to a more reasonable 9. I would just like to get that closer to 8:30 or at least asleep at 9 instead of lights out at 9, but it is tough. May nights we are eating dinner at 8 since Dan doesn't get home till 7:30-8. Another problem is that even though Sami is going to sleep at 9, I have too much to do with Usborne Books and Scrapbooking that I don't bed any earlier.
For those that don't know, I am an Usborne Books at Home Consultant selling quality educational books . Most are educational kids books helping kids learn to read, learning a new hobby, learning about science etc.... Really interesting subjects for kids of all ages (like us). I even bought some that I'm interested in reading like mythology which I did lousy in school and space with internet links which I have always enjoyed. I bought a book about World War II with some beautiful illustrations for my father-in-law for his birthday which he has thoroughly enjoyed. Go online for a glance at the more than 1300 titles (www.ubah.com/a2416) or give me a call, I'd love to show you the wonderful quality. Once you handle the books, you will fall in love as I did. I'm looking forward to a busy fall selling season. With the commission I get from the sales of the book, I plan to donate to Alex's Lemonade Stand and CHOP and Ronald McDonald House. Every year we give items to CHOP and this year with the discounts I get on books I plan to donate double the books. Our calendar is quickly filling up so call me today to book your home show.
Gray's Family Foto has jumped with both feet into scrapbooking. I'm working on updating the website to show our growing product line. Another task that keeps us up till midnight. The website is still a work in progress, so look past the construction and check back: www.graysfamilyfoto.com. Or stop in the store and see how we have changed in the 2 short years we have been in business. Located on 206 at New Amwell Road just behind the Dunkin Donuts. 908-9359-5590
Sami had a play date with her friend Cameron on Tuesday. They play so nice together. It is a joy to have Cameron with us. We went to the park, had dinner, they played in the neighborhood and then we took her home.
Saturday Sami starts Ballet and has a birthday party for her friend Alyssa.
Sunday is the Make A Wish picnic. We are looking forward to spending time with fellow NB survivor Maddie and her family.
Monday, September 12, 2005 8:12 AM CDT
Today was Sami's first day of Kindergarten. She was excited to get on the bus with the big kids in the neighborhood. It is the also the first day for the school as Sami is starting in a brand new elementary school, Milltown School, Bridgewater, New Jersey.
We went to the school on Friday for an open house to meet the teachers and take a bus ride. Sami loved it. Some of her friends from Crim will be in her class in the morning. Some will be in the class next door or will come in the afternoon.
Sami will be home about 11:30 at which time I will drive her to Children's Corner for the rest of the afternoon.
Last week was busy, wow, I guess I should start about Sept 1st. I went to Milltown School to help the librarian fill the library with books. It was very fun, fast and easy as it was very organized with helpers and boxes of books color coded to the shelves. Sami was at her old babysitters that week. We meet Aunt Arlene for dinner on Friday night. Saturday we had Amy Sach's Bat Mitzvah. It was great fun with lots of kids and activities which Sami loved. Amy did terrific. We were very proud of her. She is a great friend and neighbor to Sami. When we got home our friends for Syracuse were already here. Tom and Sue came down to fit Sami for her dress. Sue made it herself. Their daughter Michelle is marrying boyfriend Glen Oct 22 and Sami is the flower girl. Sunday was full of fun fitting the dress, playing at the park, having a picnic and visiting the store. then we meet Michelle and Glen and some friends for dinner as they were also in town for a bridal shower. Sunday they all left after breakfast and we went to our friends the Briegs for a BBQ.
Tuesday Sami's played with Anjali while I worked. At lunchtime Sami had doctor and dentist appointments. All went well. I wanted Sami to see her pediatrician after the report from the Oncologist that her back was beginning to show signs of curvature and high blood pressure. The doctor thought her back looked good and the pressures were normal. But we will keep a watch.
Wednesday Sami started back to Children's Corner. This is her 3rd year. The directory told me she did fine and walked around like she owned the place. Most days she will be half day, but days that Milltown is closed she will be all day.
as I mentioned earlier we went to the new school Friday after that Sami kept herself busy in the neighborhood riding her bike and visiting with neighbors. She is funny carrying my phone around calling to tell me where she is. I actually kind of like it.
Saturday Sami went to Ballet open house. She starts next week taking Ballet and Tap for 45 minutes Saturday mornings. After the open house we went to the farm to help Shauna set up for Kaylee's birthday party.
Sunday September 11th was Kaylee's 3rd birthday. She's not a baby anymore. She started school 3 days a week as well. Everyone had great fun with all the family and friends coming to celebrate.
Monday, August 29, 2005 1:56 PM CDT
Just back from CHOP. Sami has a routine 6 month clinic appointment. She is officially over the 40/40 mark. 40 lbs and 40 and 1/2 inches. She is on the chart at 25 percentile and 5th percentile. She wasn't happy about the blood test, but the results are normal and not required the next visit. The doctor promised her just the pee test next time. In addition she is due for some heart tests like EKG and heart echo.
As she moves further from the fear of relapse she moves into the next stage of what did the treatment due to her body. The doctor is noticing a consistently high blood (for a child, normal for us). This can be caused by the treatment to her kidneys. So Dr. Reilly plans to discuss with a specialist so we may be looking at some kidney tests sooner than the next visit.
Another common problem from treatment regards Scoliosis due to radiation of the spine. Sami is showing some early signs of curvature of the spine.
Everyone was quite pleased with Sami's progress. She is very active and healthy. The only real affect at this time from the treatment include hearing loss, but her bright pink hearing aids help her and she will continue to get speech therapy in school.
Last Friday she completed her last day of Tae Kwon Do camp. This week she will be at her old baby sitter's house (our adoptive family)...until school starts. Children's Corner starts Sept 7 and public school starts the 12th.
Bus Orientation for Kindergarteners at the new Milltown School was changed till September 9th. That is the same day as the open house so it makes more sense. However rumor is it that the school does not have a co to open and opening day maybe postponed. I don't agree. I was a volunteer helper at the school library today. They were very organized. We completed putting the books on the shelves in a 1/2 hour! Most of us thought we would be there all day.
Tuesday, August 16, 2005 9:51 AM CDT
Just back from a wonderful vacation at my sisters in Puyallup, Washington. Sami loved playing with her 4 cousins.
My sister Patty and her husband Roger celebrate their 25th wedding anniversary today (Aug 16). While we were there we had a party. It happened to be our Dad's birthday so we had double the celebration.
We burned a CD of all the pictures we took before we left for the airport, but I laid it down on the counter and forgot it so it will be a week or so before I can post some pictures from the trip.
Sami is now at Master Lee's Tae Kwon Do camp. They are loocated just across the parking lot from our camera store: Gray's Family Foto in Hillsborough, New Jersey. Dan can see her from the store window. Sami is loving it.
Next scheduled Clinic appointment is August 29th.
Sandy
Sunday, July 31, 2005 9:45 AM CDT
LEMONDADE Stand Today
Sami decided to have a lemonade stand. I thought it was a wonderful way to honor Alex, with tomorrow, August 1st being the first anniversary of her death.
If you don't get a chance to stop by Sami's stand today, you can make your doantions payable to: Alex's Lemonade Stand and mail to:
Sami Gray
56 Huntley Way
Bridgewater, NJ 08807
or make a online controbution on Alex's site at: www.alexslemonade.org
Thursday, July 28, 2005 9:31 PM CDT
Well, I'll start off to say Sami is fine !
Friday's ride on Faxy went good until she heard her friends from the barn talking to her and she started to rush to get back to the stall. Her rush turned into a gallop which Sami bounced right off. After a few freighting moments, we learned Sami was fine and was ready to go swimming. I thought that was a great way to cool her down because I wasn't sure how we were giong to get ice on all the scraps which would turn to bruises. I remindered her that Carol, Lisa and Steve from Saddle Club and Ms Cirona (our friend from Children's Corner) all have fallen and that can happen when you ride a horse. She is not afraid and is ready to go riding.
Sunday she ran around the house pretending she was a horse. Monday we all got haircuts and visited with Annalee and Alex. Tuesday Sami had Sean's birthday party at a lake (a great place to be on the hottest day in years - over 100 degrees) Wednesday we visited Sami's old babysitters and great friends Liz and Mary Lou. Thursday Sami had another birthday party for Chazz at Kid Zone.
Thursday afternoon we were all interviewed by Rick Adams from Partiot Media. As I expected Sami didn't talk. Here is a list of questions and proposed answers I prepared. Though the taping went a bit different as we were not reading answers. The segment will air on Pat Media's channel 8 for those with that cable company. Not sure of the date as yet.
Community Corner Questions
Sandy & Dan Gray- Samis Parents
When was Sami diagnosed with Neuroblastoma?
May 2001, at 13 months. She is now 5 years old.
What is Neuroblastoma?
Neuroblastoma is one of the most common solid tumours of early childhood usually found in babies or young children. The disease originates in the adrenal medulla or other sites of sympathetic nervous tissue. The most common site is the abdomen (near the adrenal gland) but can also be found in the chest, neck, pelvis, or other sites. Most patients have widespread disease at diagnosis.
How does someone get Neuroblastoma?
Unknown. It is a nerve cell that does not mature probably and quickly multiplies.
What was that like for you when she was diagnosed with this disease?
Earthstopping before, we enjoyed our time with miracle Sami who was conceived by IVF after years of trying. Dan and I both worked full time and traveled with our jobs and for fun. Sami had taken 4 plane trips including Italy where she learned to walk in Venice all before the age of 1. It would be 2 years before the next trip.
How many treatments did she have to go through?
The protocol was intense with 5 cycles of heavy doses of multiple chemotherapy over 5 months. Several surgeries including the remove of the tumor. 2 stem cell transplants requiring complete isolation for more than 3 weeks each time, and limited exposure for 1 year. 10 targeted radiation treatments. 6 months of oral Accutane.
Offically completed last dose of medication on September 7, 2002
What was life like for you day to day?
Just that living only for the moment. Not knowing what the next moment would bring. It was the first bit of advise her doctor gave me. It was too overwhelming to look past the time. Even last year when some scans were not providing the expected results, the doctor reminded me to take one day at a time.
How was Sami handling all this?
Sami doesnt remember being sick. She doesnt understand what cancer is and that she is a cancer survivor.
How would you describe Sami?
Active, normal 5 year old. She is a leader, however she also has wonderful qualities like her kindness and desire to please and make others feel better.
What kinds of things does she like to do?
Sami has a very busy social calendar. Parents of her classmates, whether it be boys or girls, call me to set up playdates. She passion is horses, though she loves all animals. She rides horses as well as bikes. She loves school and books. She loves swimming and her new fun is fishing. You can always her hear playing imagionery family or singing.
What was that like to hear the news that she was cancer-free?
Well, it was like pulling teeth to hear those words. When Neuroblastoma comes back it is not good so doctors are cautious. We knew that the live cancer cells were not appearing on the scans as of Dec 01, however she did not complete her treatment until Sept 02. Even then we were reporting remission but we didnt get confirmation until we asked the big question after the Sept scan results. Sami continues to be monitored every 6 months. After 5 years she will move to once a year with the long term clinic. There they will be monitoring long term affects of the treatment she endured.
What did you learn from this whole experience?
There are treatments to cure cancer. We were both jaded by the deaths of our mothers from cancer. We like to remind people there is hope, just look at Sami. Most importantly enjoy every moment we have together.
How different is your life now compared to a few years ago?
We are learning what a normal schedule is like. Sami will start Kindergarten in September. We can plan for her future (but not too far ahead) and continue to live for the moment.
What do you think was the deciding factor in Sami beating cancer?
Excellent treatment at CHOP, Childrens Hospital of Philadelphia.
Is this a cancer that can come back?
Yes, and replase provides very little hope because the body becomes resistant to the therapy.
How supportive has the community been?
Our family and friends are our support. AND the people we meet along the journey. We keep in touch with the families who went through treatment during the same time. We utilize the caringbridge website to network with fellow NB patients. We support families with new diagnoses.
What is Alexs Lemonade Stand?
Alex was a Neuroblastoma patient at CHOP. She came up with the idea at the age of 5 in the hospital receiving treatment. Her idea was simple, to have a lemonade stand to raise money to help kids get better. Each year the stand grew. Last year Alex set a goal to have a stand in every stand and raise $1 million dollars. She got her message out to the world asking other kids to help her. She raised $1.4 million. Sadly Alex pasted away August 1, 2004. But not before setting the goal for 2005 to be 5,000 stand and $5 million dollars. The big event is generally June 11th weekend, however there are stands that are held year round. Sami has impromptu stands in our front year whenever she feels like it. We participated again this year with a big event at our store in Hillsborough on June 11th. We raised $3,000 with totals from the June 11th weekend of over $1.5 million. So we hve a long way to go, but with big sponsers like Volvo and . We will make Alexs goal.
How did Samantha help this cause?
Sami holds the stands, makes posters, hands out flyers and asks for donations. She knows we send the money to Alex to make kids get better. Just recently we explained that Alex died so we have to continue to help kids get better.
Whats it like to see your daughter participating and helping out in this way?
We are very proud of the enthusaim Sami andthe efforts Sami puts forth towards fund raising. And we are honored to help anyway we can.
Whats the future look like for Sami and your family?
Busy. Sami will start school in the fall. Dan will be running the store where we offer discounted sitting fees for donations to CHOP and Ronald McDonald house. I recently began selling Usborne Books at Home so I can use my commissions to support Alex and other fundraising opportunities with free/discounted books to CHOP. I am a Red Cross speaker for Blood and Platelet donations.
How can people find out more about Sami and about Alexs Lemonade Stand?
Samis website: www.caringbridge.org/nj/samigray
Alexs website: www.alexslemonade.org
Friday, July 22, 2005 10:27 AM CDT
Great news...Sami has been moved to AM Kindergarten at the new Milltown School to open in September. Not such great news from transportation as they have told me they will not bus her to Children's Corner. At least she will get on the big bus with the other kids in the neighborhood in the morning. I'll have to drive her to Children's Corner at lunch time.
Sami was wonderful riding Faxy yesterday. Jamie, an experienced rider who works at the farm, said she rides like a natural. We plan to go back tonight for another ride and also spend more time swimming. Last night we were in a rush to get to Flemington for the free music concert on Main Street. It was great meeting Marie, Annalee and Alex. Dan brought Shauna and I taco bell so we were happy. Hope to do it again sometime.
Saturday Sami as Sameer's 3rd birthday party in Bordentown, NJ.
Sunday I have a scrapbook workshop at my neighobrs...want to join me? I'm hosting a workshop at my house on Thursday, Aug 25 at 6:30... if you want to come let me know.
Thursday, July 21, 2005 7:51 AM CDT
After school on Tuesday Sami went to her friend Conner's house for a playdate and dinner. At 7p, we went to the Library for storytime and meet their friend Jake. It was fun the dressed in their pjs and listened to the stories. Afterwards we took out some books.
Wednesday after school and dinner and Dan got home, we went to the RV college to the Plantium. It was cool, you need to check it out. Just $5 each for an hour show of the stars and plants.
Tonight we are going to the farm. They have a new riding horse named Faxy. It isn't a pony, but she is just as tall as Frosty so Sami should be fine. Should she stay at the farm, it will be a horse she can grow into....and I'll get a change to learn as well. We are very excited. After reiding we plan to meet Sami's friend Annalee in Flemington for music night on main street.
No word on Sami's final schedule for Kindergarten. We have the bad luck of learning that she has been selected for afternoon Kindergarten and I'm working to have this changed. And still working on her placement at Children's Corner the rest of the day and how to transport her back and forth.
More to come....
Tuesday, July 19, 2005 7:54 AM CDT
Well, hello from hot and steamy New Jersey. Personally I'm staying in the air conditioning and my sinuses are still bothering me. Even Sami and Dan had some problems. Not like a cold, just pressure. But we are all fine.
Sami is busy with juggling two schools and activities and play dates in the evenings and weekends.
Last night we had Make A Wish come back. You may remember about 2 years ago they came and Sami did not make her wish. She really didn't know what a wish was. We were trying to get her to say she wanted to go on the Disney Cruise with Zachary. Though we were told, there is no time limit. She is entitled to her wish. When she is ready to let them know.
Well, she has been talking about meeting Carol from Saddle Club for months so we began research. When Lauren and Toni came, she was a bit shy but knew what she wanted. She doesn't have any optional second wish so if they can not arrange this wish they will have to come back and try again. No problem.
I hope to get new pictures soon. In the meantime, be sure to check out the great picture of Sami in her Saddle Club clothes from Australia.
Sandy
Thursday, July 14, 2005 1:04 PM CDT
Just in from Team Alex....
Thank you for hosting an Alex's Lemonade Stand. We have had an overwhelming response from around the country this year and it has been difficult to keep up with corresponding with lemonade stand hosts. We appreciate you participation and support of Alex's Lemonade Stand for Childhood Cancer.
The latest news:
We are moving fast towards our goal of 5000 lemonade stands across the country this year. We have over 2000 stands registered already and are getting new registrations every day. If you know any families, schools, or businesses who might be interested in participating then, please send them a link to our website. Alex's Lemonade Stand has raised over $1.5 million already this year towards the $5 million goal.
There have many stands around the country this year. They locations have included; front yards, race tracks, hotels, malls, schools, stores, other businesses, fairs, concerts, and many, many other locations. There has been a 48 hour swim-a-thon, a 24 hour lemonade stand, a group of girls hosting a stand every Sunday for the summer, and a month long stand. There have been stands hosted by families, schools, camps, stores corporations, churches and many other groups. We are just thrilled at the number of people committed to helping and supporting Alex's Lemonade Stand.
The affiliation with the race horse Afleet Alex has been wonderful. It has raised awareness of Alex's Lemonade Stand and childhood cancer and helped us to raise a lot of funds for childhood cancer. It also allowed Alex's Lemonade Stand to have the "Triple Crown" of lemonade stands this year at the Kentucky Derby, The Preakness, and the Belmont Stakes.
The children's book Alex and The Amazing Lemonade Stand has been doing very well and was recently translated to Japanese. The book has really helped to spread the word about Alex's Lemonade and to get kids, families, schools and businesses excited about helping out.
The new Alex's Lemonade Kit which was recently published has also been doing well. The kit is available at book stores around the country and has everything someone needs to host an Alex's Lemonade Stand; posters, a small book about Alex and the history of the stand, 'host' stickers, thank you notes, and powdered lemonade. Check out and share this cool link to spread the word about the kit: http://www.perseusbookspromos.com/lemonade/
The new Alex's Lemonade Stand theme song is also out. It is written by the legendary songwriter Kenny Gamble and Bunny Sigler. Kenny Gamble wrote and/or produced such well known songs as Love Train, If You Don't Know Me By Now, Don't Leave Me This Way, and many other hits. They were inspired by the story of Alex and her lemonade stand and wrote The Lemonade Song. Listen to the song by going to www.alexslemonade.com.
Country Time Lemonade recently came out with Alex's Lemonade Stand/ Country Time powdered lemonade. It has done very well and is available at some supermarkets around the country. Some of the stores that are carrying it are A&P, Superfresh, some Giant Stores, and a bunch of other supermarkets nationwide.
Thank you so much for your support, we sincerely appreciate it,
Sincerely,
Jay & Liz Scott and Team Alex fro Alex's Original Lemonade Stand
333 Lancaster Avenue
#414
Wynnewood, PA 19096
610-649-3034
www.alexslemonade.com
Wednesday, July 13, 2005 7:18 AM CDT
Busy and very hot summer.
July 1st Sami started 2 new classes. The bus picks her up here at the house in the morning and takes her to the Bridgewater High School where she attends the Extended Year Program which is a program to help with skills she learned from Pre-K so she will be prepared to enter Kindergarten in September. Here she is will all her friends like Hannah, Dianna, Kevin, and Conner.
After this class she is taken by bus to Children's Corner. Also beginning in July is a summer program. Most kids are in camp, but the offered this year a class from 1-4 called Jumpstart to Kindergarten. She loves being in the Kindergarten classroom. This class is also an extension of prek with readiness skills for kindergarten.
Starting in September Sami will be in 1/2 kindergarten at public school and the rest of the day at Children's Corner. We haven't heard yet if she will be in am or pm.
Saturday we drove to Ocean City, MD to spend two nights with Sami's cousins. It was great fun. Sami loved the beach and the pool I think even more. She can really get around the pool now with just a ring float.
We will post new pictures soon.
sandy
Friday, June 24, 2005 12:39 AM CDT
Sami is enjoying the summer weather.
We have been having play dates all week, having loads of fun and getting home late.
Check out the new pictures of Sami.
Wednesday, June 1, 2005 8:05 PM CDT
A BIG THANK YOU to all of you that visited our Lemonade Stand today (and those that donated previously). A special thanks for Amanada Cullen and her friends and family for all their help.
We raised almost $3,000. Right now we stand at $2,677 with promises of more to come this week.
The kids in the neighborhood will hold a stand on the block on Sunday. I will be sending the money into Alex next week. It is not too late. You can mail your donation to us or go online at www.alexslemonade.org
Dan, Sandy, and Sami Gray
56 Huntley Way
Bridgewater, NJ 08807
908-704-8057
You should be seeing local coverage in the newspaper. There was a photographer at our stand.
Alfeet Alex won the Belmont. They will be donating a percentage of their winnings to Alex's Lemonade Stand.
Thanks,
Sandy
Tuesday, May 31, 2005 10:20 AM CDT
Have you seen Usborne Books at Home?
Hostess Special:
Through the end of July, I will be offering double free books for the hostess with home show orders of $250 or more. Help me build my business.
Who do you know that would enjoy hosting a show or purchasing quality books?
Example: An average show retails $400 if your show totaled just $250 you would normally receive $40 in free books. NOW through August 1, a hostess can choose $80 worth of quality books. Plus 1/2 off and other monthly specials.
Contact Sandy Gray for more details.
Sandy Gray
Independent Consultant
56 Huntley Way
Bridgewater, NJ 08807
908-704-8057
email: gray56@optonline.net
online orders: www.ubah.com/a2416
Sunday, May 22, 2005 2:11 PM CDT
Sami had a great time at the South Hunterdon Relay for Life.
We meet Norma Zimmerman who directed us to the Survivor Tent. There Sami received a bag full of goodies (from Norma, thanks) and a t-shirt. They even had a shirt waiting for her in her size. She wore proudly all day. AND at the survivor tent, working at a volunteer, was Samanatha Novak our friend that gave Sami the wonderful leather Harley jacket that she wears all the time. And after the opening cermonies, all the Novak's walked with us on Sami's victory lap around the track. Johnny carried Sami on his shoulders.
Shauna and Kaylee meet us and we ate dinner together. Sami jumped in the moon walk, visited with the farm animals, got her face painted and received ballons from the clown. Fun was had by all.
Sandy
Friday, May 20, 2005 9:21 AM CDT
Well, I liked the Usborne books so much that I decided to sell them. I'm now a Usborne Books at Home consultant.
I will be setting up a website for online orders. Those interested in hosting a show, I will be offering a special through Aug 11 for all shows totaling more than $250 in sales will earn double free book rewards. The show can be in your home or just a book/online show. There will be more details to come.
Sami is getting ready for her Lemonade Stand tomorrow here at the house. We are having a neighborhood block garage sale and the kids are going to help Sami sell lemonade. Sami has already had 2 stands this year in preparation for the big event to be held at the store on June 11th.
If you can't make our lemonade stand this weekend or June 11th at the store, make your check payable to Alexs Lemonade Stand and send to us at:
Sami Gray, 56 Huntley Way, Bridgewater, NJ 08807
Or better yet, have your own stand in your neighborhood. Remember the goal is $5 million AND 1,000 stands. It is easy, just have fun.
Saturday at 4pm is the Relay for Life at South Hunterdon high. We have participated in the North Hunterdon the past 3 years. However a friend has been encouraging us to come to South for more fun for kids. So join us if you can.
Don't always have the money to make a donation? Donate platelets! It is free. Give the give of life....Call the Red Cross for details 1-800-262-5663
Thanks,
Sandy
Wednesday, May 18, 2005 1:53 PM CDT
Thanks to everyone that purchased USBORN books. Sami was able to pick out 18 books of her choice. Those that missed out don't worry. We are going to do a book drive/fair whatever (still working out the details) for the holidays with the proceeds (new books) going to CHOP (the kids).
Sami is busy passing out her lemonade stand flyers around the neighborhood. I hope everyone can join us on June 11th at the store. Gray's Family Foto, 411 Route 206, Hillsborough, NJ 908-359-5590
Remember if you can't come, you can still send in your donation. Or have your own stand. Log onto Alex's site for details: www.alexslemonade.com
Look for Alex's labeled Country Time Lemonade in your grocery and ask them to carry it if you can't find it!
We still need volunteers to make and post signs. We have the supplies. We also have signs for you to post at local shops and flyers. Lets get the word out we want to surpase Alex's goal of $5 Million dollars and 1,000 stands.
thanks, Sandy
Saturday, May 14, 2005 8:58 AM CDT
Great weather....
Sami is having a great time with play dates and enjoying the neighbors in this wonderful spring weather.
We have planted flowers that the chipmunks (and other animals) appear to enjoy once again.
A neighbor gave Sami a cute table and chair set that she is enjoying picnics with her friends in the front yard. She has moved up to the 16 inch bike and doing great with her balance and control. Check out the new pictures.
Thursday night we had a Usborn Book party. Sami loved being able to pick out new books. If anyone is interested we have the online party open till Wednesday (May 17th). Go online at www.ubah.com/v1754 and Sami gets credit for your purchase.
Last night we had an imprompto meeting with some old friends that have moved back to the east coast. Steve and Angie and Kira with baby sister Melissa. Kira and Sami used to be part of a baby group we had when the kids were just infants. It was great to catch up.
Today we spent the morning with daddy at the store and helped with photographer friends/customers that were using our studio for family portraits. Then Sami and I went to a neighborhood high school where they were raising funds for Habitat for Humanity. It was a great kids carnivale and we saw a few of Sami's friends from Crim School (Conner and Kevin)
Details about our lemonade stand are coming together. Join us at the store on Saturday, June 11 from 9-3 or have your own stand. Learn more at www.alexslemonade.com
Wednesday, May 11, 2005 8:22 AM CDT
Tuesday, Dan, Sami and I traveled to Philadelphia Red Cross to tell our story. Here is the speech I made.
I am here to tell you why I donate Platelets. I was personally touched that strangers in the community donated platelets and helped to save my childs life. I started donating in April 2004 so I could help those in need like we once were...
In May 2001, the week of Mother's Day, our 13 month old daughter Samantha was diagnosed with Neuroblastoma. NB is an aggressive cancer of the sympathetic nervous system. Sami's tumor was so large in her abdomen that it appeared as though she was pregnant. The biopsy revealed that the cancer had spread to her bone marrow which classified the disease as stage IV.
I was told that NB is a rare disease with unknown causes. At that time there were about 500 cases of NB a year generally affecting children under the of 5 with survival rates of about 30%. Of course my husband and I went through all the emotions of shock, anger and despair. But we believed if we just took one day at a time Sami could bet the odds and she did.
Sami had all her treatments at Children's Hospital of Philadelphia, CHOP. If you donated platelets or blood products between May 2001 to March 2002, you helped save Sami's life. Her protocol included 5 cycles of high dose Chemotherapy, 6 hour surgery, 2 stem cell transplants, 10 radiation treatments and 6 months of oral Accutane. Sami completed her last dose of medication and was declared in remission on September 7, 2002.
Sami's first admission into the hospital was 4 weeks long. During that time, I researched and made arrangements to directly donate my blood. It was difficult for me to travel to the blood bank by bus with transfers and my struggle to be with Sami 24/7 made blood donations difficult. Therefore, I had to depend on blood donations made by strangers to help Sami. I was the primary caregiver for Sami and I also worked full time throughout her treatment. My husband worked 2 hours away in New Jersey and visited on weekends or when he could.
During Sami's apheresis for stem cell transplant, I learned about apheresis platelet donations at the hospital. I tried to donate, but was deferred because I was nursing Sami at the time. I knew then, that when Sami was better I was going to pursue blood donations to help others.
In 2004, with Sami well, I set a goal to donate platelets at least 4 times a year. The donating center is an hour drive from my house and as all of you know the process is about 2 hours so finding 4 hours to donate (with a full time job and family to take care of) is a challenge. This was a huge dedication for me.
Some of you have probably experienced the same side affects of apheresis that I have. Most affects are just annoying like the tingling in back of throat and leg cramps. The nurses at the center in Princeton have learned how to adjust the apheresis machine so these affects are minimal. I also believe a little discomfort is worth the end result. The patient is going through much more pain and is depending on my platelet products. This, I have experienced first-hand. Without platelets, a patient experiences side affects like poeteakeye, nose bleeds, brain bleeds, and possible stroke. This is why platelets donations are so important.
My husband recalls a memory of Sami being home between treatments. He was administering a shot to improve her blood counts. The needle area began to bleed and would not stop. After calls to the doctors, it was determined that her platelets were low and the next day we had to go to the hospital for Sami to get platelets. During the year of treatment, Sami received 34 units of platelets.
Today, Sami's only visible signs of her illness come from the scars of her surgery and her brightly colored hearing aides. There are many side affects of chemotherapy, but the drugs which end in platin cause damage to the tiny cells in the inner ear that can not be repaired or regrown. So Sami has permanent severe to profound hearing loss in the high tones in both ears. With hearing aids, Sami can hear the sounds she previously missed. Now she is developing skills to say those sounds. She currently attends a public school Pre-K program for early intervention. Next year she will attend a main stream Kindergarten.
Sami continues to have follow up visits to CHOP. Doctors will monitor her throughout her life for secondary issues related to her treatment which includes heart, kidneys and other problems.
The American Red Cross and I thank you for your platelet donations. I wanted you to hear our story so you can be reminded why you are donating platelets. It is for all the Sami's out there that need your help. Please encourage your family and friends to donate platelets. Thank you.
Friday, May 6, 2005 6:29 AM CDT
Today is a busy day.
This morning we have Mother's Day breakfast at Children's Corner and at 2pm I have Mother's Day tea at Crim School.
Sami has been preparing gifts, songs and surprises for weeks.
It will be nice to catch up with the moms at Crim. We are all finding out the future of our children. I had Sami's IEP meeting this week. Still no decisions and nothing we didn't really know before the meeting. She will go to the new school in September, in a class designed to mainstream children with disabilities. It is called a co-teaching Kindergarten where there are 2 full time teachers. One special ed and the other regular ed. Sami's disabilities come from her hearing loss the the inability to use appropriate expressive language. What I understand is the hearing aides are not an magic devise that turn on the lost sounds in Sami's ears. She still needs to learn to process those sounds, and then learn to say them. She is doing great, but still has a long way to go.
Now we need to understand how the day will work for Sami. Kindergarten is only half day. Too many details and questions to list right now. When I have the answers I will explain.
I must go and wake up sleeping beauty so we start this celebration of Mother's Day. Though this holiday is full of memories of 4 years ago this week when Sami was diagnosed with Neuroblastoma. Look how far she has come. Check out the new pictures !
Happy Mother's Day.
Sandy
Wednesday, April 27, 2005 11:42 PM CDT
Sami had Kindergarten orientation today. She was very excited and can't wait for the new school to be finished. It will be great that she will be the first to enter this school called the Milltown School. I will have her IEP meetings to determine which class and services she will get May 3rd.
The weather has been great...spring! Sami has been out every night riding her bike. She has great control.
She is having lots of play dates.
Tuesday, April 19, 2005 9:52 PM CDT
Sami held her first of many Lemonade Stands today.
Her friend Bhavya was here for a play date and together the held up a sign and yelled "ice cold lemonade." They went through over a gallon. It was great timing as it was the first day over 80 degrees this year.
Sami is beginning to understand more about the stand as I explain it to neighbors and she joins in to tell that the money goes to Alex. I just told her today that Alex passed away last summer.
Thanks to Dad and Madison for the generous donations for Autism. Sami walked around Crim School 3 times.
I registered Sami for Kindergarten today. Thanks for your help Christine.
Sandy
Monday, April 11, 2005 1:32 PM CDT
Hello all
It is that time...I have spared you from most of the fund raisers, but this one is associated with the handicap program that Sami attends at Crim school.
Don't feel obligated. Donate as little as you like, when you want, when a cause you support is benefited, or when you have the money to spare. Whatever works for you, I won't judge, I'm not big on this myself. But the school have asked that we don't go door to door so you are my only resource.
For further information: www.njcosac.org
Sami is asking for you to sponsor her in the Crim School Walk for Autism. Supporting the school walk can help two causes:
Sami will learn about Autism
Funds raised will benefit the Autism program at Crim School.
All participating students will receive a certification of appreciation and other gifts and prizes for individuals and class depending on participation.
Donations need to be sent to Crim on April 15th, but if you would like to donate let me know how much and I'll put in for you to meet the deadline.
Thanks,
Sandy
Wednesday, March 30, 2005 8:21 AM CST
Sami had her 5 year old well visit yesterday with Dr. Gora.
She is a healthy happy girl weighing in at 37 lbs (25%) and 39 inches (3%). She got 3 shots that she was not happy about. But mom was glad to hear that she is done with shots until she is 14. However Sami says she doesn't want to be 14. So Dan told her to go from 13 to 15.
We are busily planning our Alex's Lemonade Stand for Saturday June 11th. I need helpers. Or have your own stand. Our goal is 1,000 stands and $5 Million dollars. The stand can be June 11 or any day, or every day.
One thing you can do now is go to your neighborhood stores and ask them to carry Alex's labeled Country Time Lemonade.
More to come...
oh, and check out the pictures from our Paris vacation.
Sandy
Sunday, March 27, 2005 9:16 PM CST
Today was Sami's 5th Birthday !
She had a great day on Saturday where 6 of her friends from school and close family/friends came to celebrate.
Thank you all for your love, friendship and thoughtful gifts.
Easter Sunday, Sami's actual birthday we relaxed at home till about 3 when we went to the farm for dinner with our extended family the Salerno's. It was a great night.
We missed you Krista !
Friday, March 18, 2005 10:31 PM CST
Just back from our vacation to Paris.
We had a great time. The weather wasn't that great. Just as cold as home and no sun which doesn't make for very good picture taking. But don't worry Dan took plenty. I'm sure he'll get some posted soon. Wait till you see the one of her in her leather coat riding a motorcycle. Dan said she was passing a boy!
We went to museums of coarse, toured around on an open air bus (in 30 degree weather thanks to Sami), road on all the trains and tooled around as Ms Cirona would say. The food was wonderful and the people very friendly and helpful. Yes, I said we were in Paris France.
We went to Euro Disney on my birthday and added to our trading pin collection.
Sami is getting ready for her Easter Birthday.
Tuesday, February 15, 2005 4:20 PM CST
Sami had her date with Zachary today. We took pb&j sandwiches but Zachary wanted McDonalds. So after their big blood draws (it was nothing really but to them it was a big deal), Sami urined in a cup, and quick visits with the doctors, we were off to McDonalds. We were all lost as there have been many changes to the hospital.
After lunch and some high fives the doctors were off to meet Kyle at the school bus as we were off to give donations to Ronald McDonald House.
All is well with both kids and we will meet up again in 6 months Aug 16th follow ups at clinic.
Sandy
Thursday, February 10, 2005 7:15 AM CST
Well my schedule is all messed up.
I got a call from Long term team that our doctor made a mistake and Sami doesn't start with them till next year.
So we had to change our appointment to....oh, maybe there is a bright spot, the date is now Feb 15th.
I have to go call Zachary's mom to see if the kids want a belated Valentine's date.
Thursday, February 3, 2005 9:31 PM CST
We are keeping busy and HEALTHY here. I don't know why, but we are very grateful. Everyone around us and even Sami's friends and teachers at school have been sick. But Sami continues to be healthy. Even 3 years of a continuous running nose stopped in November. Now that could be back in the spring as alergies, who knows.
I had a meeting with Sami's teachers, therapists and case manager yesterday. It was determined that she will have a complete evaluation to determine her eligibility for services next year. We feel she will continue to get speech and she will probably be recommended to attend the co teaching kindergarten. We will know more in May.
Sami has a CHOP appointment with the long term follow up team Feb 16.
As for fun, she has Danielle's swimming birthday party on Saturday and Super Bowl at the farm on Sunday.
Thanks for checking in, please sign and tell us how you like the pictures from the snow.
Sandy
Tuesday, January 25, 2005 8:13 PM CST
Well we got about 14 inches of snow this past weekend. Check out the picture of Sami having fun in the snow. She just loved me pulling her around the street. We have a retenion bason at the end of our street so most of the kids like sleding down the hill. However it was so deep Sami couldn't walk so well so I had to carry her everywhere. I enjoyed sledding down a neighbors driveway the best because I didn't have to carry her up in the snow.
We hope to get a bit more tomorrow. And someone told me more this weekend. We love snow.
Sami's cousins Steven and David and grand dad are up for a quick visit before they start back to college. She loves all the attention.
Thursday starts one of 3 parties this week.
Sami continues to be healthy and happy !
Thursday, January 20, 2005 9:29 AM CST
Well Sami has started the birthday party circuit. One down and 5 to go over the next 3 weeks. The norm I hear when kids hit school. But Sami is in 2 schools so I think we will be hit twice as hard.
Sami loves the snow. Yesterday we got about 2-3 inches. It was a light snow, but Sami insisted that we make a snowman with a carrot nose. Well, I took all the snow from the driveway and made piles so we have a laying down snowman. It actually looks cute from her window. You can see it better than you could a stand up snowman.
A big storm is heading our way with estimates of 4-18 this weekend. Too bad it couldn't be during the week to cancel school. Not that it matters to me with working virutal, there are no excuses.
In March we are going on vacation to Paris. It will be nice to celebrate my birthday on the trip. Sami's birthday is on Sunday, March 27th so I'll have to plan the events before we leave. Currently we are looking at a home party for about 8 kids like we did last year with the family party to follow.
Remember to sign in...we know you are checking.
Sandy
Wednesday, January 12, 2005 9:39 PM CST
Well the new year is in full swing.
I have been scheduling doctor appointments this week including Sami's first follow with the long term care team at CHOP for Feb 16th, Dentist March 1 and routine 5 year old well visit with the Pediatrician March 29th.
Sami is back to her normal routine with Children's Corner in the morning and Crim School in the afternoon. The birthday parties are starting now that the holidays visits are slowing down.
So far Sami has 4 birthday parties scheduled. I can see planning for her party is going to be hard already and I haven't started yet.
We do still have one more holiday date scheduled for this weekend. Zachary and the Doctor family are coming to visit on Saturday.
We are keeping healthy and happy and hope you are too!
Saturday, January 1, 2005 11:01 AM CST
Happy New Year !
Sami stayed up to watch the ball drop last night. She had a date with her friend Kevin. We all had a great time.
Check out the pictures from the holidays and visiting family.
Sandy
Tuesday, December 21, 2004 9:30 PM CST
Happy Holidays 2004, to our friends and family!
It is true what they say about as you get older the days seem to go faster. Busy with work, family and friends we have seen another year fly by leaving us further away from Samanthas illness. We continue to support our families who are still enduring illness, but we are glad to say Sami is not one of them. If you have followed her website you know that doctors continue to perform follow up tests on Samis liver, but after a year the issue is stable and undiagnosed. We know she is alright, but continue to pray for her health as there can always be complications due to all the treatment she endured.
With the opening of our camera store, Grays Family Foto last year (www.graysfamilyfoto.com), Dan has been busy working 6 days a week framing, developing, scanning, printing and taking pictures. Whether the request is conventional film or digital he can get whatever you need. Im quite proud at how he has learned to manage all the aspects of the store on his own. We do have some great part-time help that provide assistance to our customers and Dan. I continue to work full time at American Express and work at the store when time permits.
During the holidays last year, we offered free sitting fees to those who donated toys. We completely filled explorer with bags and bags of toys that we delivered to Childrens Hospital of Philadelphia (CHOP). This holiday season we are offering a reduced sitting fee when a customer brings in new books or DVDs. CHOP just completed the new oncology wing with private rooms and a DVD player for everyone. We hope to build a DVD collection for the kids to enjoy during their stay. In the spring 2004, we joined Alexander Scott in her quest to raise $1 million for Pediatric Cancer research. Alexs goal was to have a lemonade stand in every state, an event that she had held for 4 years raising over $200,000. On June 12th, we had our stand at the store along with more than 300 stands around the world. We all worked to get corporate sponsors to pay for expenses like lemonade, cups, flyers so 100f the money received went to the Alexs Lemonade Stand Cancer Fund. Sami continued to have impromptu lemonade stands throughout the year at home. In addition, Dan left the donation jar up at the store. We donated more than $8,000. About half of the money was raised on June 12th and with continuing stands and corporate donations Alexs goal was reached in October. Unfortunately Alex did not see her goal meet. She passed away August 1st after battling Neuroblastoma for 7 years. Just like Sami, she was diagnosed at 1 year; however she never gained remission status. Learn about Alexs stand at www.alexslemonade.com.
Owning your own business doesnt leave us much time for vacations. Luckily our family has come to visit us. Now that the studio and frame room have been moved to the store, we have reclaimed our basement as a family area. Sami has taken ownership of the large area, that was the studio, for her toys. She even celebrated her 4th birthday with her friends from school in her new playroom decorated with Dora the Explorer. We are working on an additional guest room which was the frame room and some day I hope to convert the darkroom into an elegant bathroom. In April, we took Sami to Florida for a fun filled week Disney and Universal Studios. While we were there we toured Sheratons timeshare, the Vistana Villages. In anticipation of going to Disney every year and the investment value, we dove into ownership. We purchased a one week 2 bedroom condo that we cant wait to come home to. Sami and I took some day trips including Sesame Place with the Salernos and Great Adventure with the Doctors. In August, our nephew Jordan came to stay with us for 2 weeks and he worked at the store half day and watched Sami the other half a day. He was such a great help and a treat to have such a well mannered teenager in the house. In September, we took a vacation/business trip to attend a custom frame convention which happened to be Atlanta where two of our best friends live: Schwarz and Hemphills. It was great fun for Sami to play with Celia and Nia. It was also nice to enjoy some relaxing time with friends, hanging around pool and being together.
Sami started public pre-K during the summer. She loved the bus coming to pick her up. In September she started back to the nursery school at Childrens Corner in Bridgewater moving up to the pre-K class in the morning and returning to the public school Crim for the afternoon pre K. Crim provides a language based pre-k class and speech therapy to help Sami learn to speak the sounds that she missed hearing due to her hearing loss from Chemotherapy. It took some encouraging and an ear piecing reward, but now she wears her hearing aides every day even reminding me when I forget to put them on her.
Samis favorite color is purple and she loves animals especially horses. We found a local farm that has half hour pony rentals where she rides and we walk along side through a wooded trail. It is great fun for her and exercise for me. She loves to sing and have play dates with her friends. And she has imaginary animals just like I did at her age. Some say she looks like me and others say she looks like Dan, we think she is a great mix of us both.
Thanksgiving we will spend with Samis god mother, Arlene and her family and friends. We are planning to attend an annual Christmas Eve event at our friends on the farm, the Salernos. They are really more like our family here in New Jersey. Then after Sami opens her presents from Santa Christmas morning at home, we will drive to Maryland to gather with our family in Baltimore. We are quite excited that not only will we be with the Grays for Christmas dinner, my sister and her family are flying in from Seattle for the holidays. We will celebrate with the Yorks on Sunday. Anyone in the area of my Dads can join us for an open house on Sunday, December 26th starting at 4pm.
Love, Dan, Sandy, and Samantha
Thursday, December 16, 2004 8:44 AM CST
Below is a message from the parents of Alex Scott. Alex was an ambious 8 year old girl who had a goal to raise $1 million dollars to help kids get better. Her goal was acheived however sadly after 7 year battle she did not survive Neuroblastoma herself.
Season's Greetings to all,
We just wanted to give everyone a quick Alex's Lemonade Stand update before the end of the year.
We are happy to tell you that lemonade stand activities are still very busy, with quite a few different types of fundraisers going on every week still.
We would like to thank each and everyone of you for helping to make Alex's Lemonade Stand successful and for helping to make the momentum from June carry forward.
Alex's Lemonade Stand will be bigger in 2005. People are contacting us everyday who want to participate next year. Alex's Lemonade Stand Days will be June 10-12, 2005, a full weekend this year to make it more flexible for people to choose which day works better for them. This will also allow many of the businesses who want to help during this event to participate on Friday while more employees are at work. We are also hoping to get many schools involved before the June date. This will hopefully help to generate more interest leading up to the June weekend.
We will be talking with some more potential corporate sponsors in early January. We welcome any and all ideas you may have to make 2005 even more successful! We are determined to give it all we have to reach the $5 million goal in 2005.
The money raised this year is making a difference for kids with cancer. Here is a partial list of what the money is doing:
Alex's Lemonade Stand funded a research nurse practitioner at Children's Hospital of Philadelphia last year. It was very successful, allowing twice as many kids to enroll in clinical trials. When we asked researchers around the country what they needed we were told again and again that they needed staffing help. They needed research assistants and data managers to work in the labs.
We are happy to announce that so far this year Alex's Lemonade Stand has funded grants to hire the following positions across the country:
1 research nurse practitioner
4 data managers
1 research associate
This is 6 more full time people working on pediatric cancer research and this is just a start!
Alex's Lemonade Stand has also funded this year:
1 year Young Investigator's Grant through the National Childhood Cancer Foundation (NCCF)
1st year of a study through Hope Street Kids, this study has a goal of eventually reducing the toxicity to children receiving chemotherapy
1st year of a new study through the Children's Neuroblastoma Cancer Foundation (CNCF)
Part of an endowment to hire a fulltime physician researcher at Dana-Farber Cancer Center in Boston.
We are still in talks with our advisors and researchers about more grants to make.
Have a very safe and happy holiday season,
Jay & Liz
www.alexslemonade.com
Alex's Lemonade Stand
333 E.Lancaster Avenue, #414
Wynnewood, PA 19096
Phone 610-642-1728
Fax 610-642-9891
Friday, December 10, 2004 8:41 PM CST
Happy Holidays
YES we are all busy shopping, but try remember to enjoy every minute of every day. Smile in line. It reallly does reduce the stress. Speak positively to everyone around you. Your good mood will inspire others. :-)
We are very busy with the store. Dan has been there every night past midnight. I help when I can between working full time, taking care of the house and spending time with Sami. Luckily we have great friends and Sami loves play dates so this time of year it all works.
Last week Sami's class shared a stomach virus with all of us, except for Dan which was lucky as we can't afford him to be in bed.
Blood donations are dangerously low. Please donate !
I will be going for my apherisis appointment on Sunday. Yes, the Red Cross accepts and encourages donations any day of the week.
Best wishes
Sandy
Friday, December 10, 2004 8:41 PM CST
Happy Holidays
YES we are all busy shopping, but try remember to enjoy every minute of every day. Smile in line. It reallly does reduce the stress. Speak positively to everyone around you. Your good mood will inspire others. :-)
We are very busy with the store. Dan has been there every night past midnight. I help when I can between working full time, taking care of the house and spending time with Sami. Luckily we have great friends and Sami loves play dates so this time of year it all works.
Last week Sami's class shared a stomach virus with all of us, except for Dan which was lucky as we can't afford him to be in bed.
Blood donations are dangerously low. Please donate !
I will be going for my apherisis appointment on Sunday. Yes, the Red Cross accepts and encourages donations any day of the week.
Best wishes
Sandy
Thursday, November 25, 2004 8:35 AM CST
Happy Thanksgiving
Thank you for stopping by the check in with Samantha. She is happy and well, except for the continuing cough that has both of us. I took her to the doctors on Monday just to be sure that it wasn't an infection, and all was clear in her lungs and ears. It just has to run its coarse. But we have the great news that she has gained weight now up to 37 lbs, and 39 inches tall.
Sami's next oncology visit is in January (I think I need to make the appointment).
Today we will spend time together. We plan to go to Sami's godmothers house to join her friends and family for a Thanksgiving Feast. However Sami wants PIG (she is into pig stories). So we plan to make pigs in a blanket for her.
We are thankfull for all your support.
Enjoy.
Monday, November 1, 2004 6:58 AM CST
Sami had a great time trick or treaking.
We started out early with Kevin about 3:30. They made their normal route around the neighborhood which is generally about 2 courts than work their way back. This time I took the wagon as they are usually tired by the second court. But not this year. It wasn't till the last house on the way back that they had enough (for now). We went back home for a drink of milk and banana to get refueled.
Then Kaylee arrived and we did our block. It was her first time so Sami had to show her how it is done. It was very fun. But that wasn't enough for them. I loaded them up in the wagaon and took them up the street to another court.
Everyone loved Sami's costume. She was a cowgirl with a horse, well you'll see when Dan posts the picture.
Sandy
Wednesday, October 27, 2004 9:46 AM CDT
Hello All
Sami has been just busy with life. Two schools every day from 9-5, homework (which she loves), playing and eating and plans every weekend. She still doesn't go to bed till 10 even with no nap now. And to be honest it just isn't worth my stress to try any earlier. At 10 pm lights out and she is gone in 5 minutes. When I try earlier like at 9:30 she tosses till 10:05. I guess it is just her body clock. Though I'm a bit worried about what will happen on Saturday when the time changes.
Last Saturday we went to Zachary and Kyle's birthday party. It was great catching up and hearing all about their Make A Wish Disney Cruise. However we wish we were with them (Sami hasn't made her wish yet).
Sunday we went to a cookout at a neighbors and Sami had great fun with all the kids carrying her around. Though the ribs and chicken were great (thanks Scott's cousin) I enjoyed the marshmellows over the fire.
Yesterday Sami had her first school field trip with the Crim School. Dan went along and had a great time (maybe he will post some pictures).
The teachers continue to say what a "pip" she is. She is very nuturing and seems to find a child that she attaches to and takes care of (maybe if they need it or not I'm not sure). She loves the school bus, the pumpkin farm, and the park where they had lunch. Since the day was switched that she went to Crim in the morning, she just skippped Children's Corner and came home at 1:30. Our neighbor's teen gets home at 2:30 so she watched her till 5. It was a nice day and all the kids were outside playing. Sami just loved it.
We went to my friend Lori's house for dinner. Sami played with the twins Gaby and David. We left at 8 so Lori could get them to bed, but Sami was still going and wanted to go shopping (since we were passing the mall). We needed to get Gaby and David's birthday presents since they will be turning 6 next week so we ducked into the mall for a bit of shopping.
Sami can't wait for Halloween this weekend. I'm sure to have pictures from that next week so check back.
Sandy
Sunday, October 10, 2004 4:03 PM CDT
Sami had a great weekend. Friday she went to her god father's for a sleep over. She did great. Probably because she loves Jason and Joann and especially likes playing with their 5 year old son Joey and his baby brother Justin. When I went to pick her up on Saturday she didn't want to come home. Thanks Joann and Jason, let us know when we can do it again.
Sunday Sami had a play date with her classmate Cassidy. They had a great time at Cassidy's house making jewlrey, playing on the swings and taking a walk to the nearby farm to see the cows and pick pumpkins. Thanks Lisa and Chris. Sami had a great time. Of coarse she didn't want to leave there either (see a pattern).
Then we are off to what I thought would be a nice picnic lunch and horse ride. However Sami was too interested in the horses to eat. Kaylee (formly baby Kaylee) meet us there with her mom Shauna. The kids rode for a half hour on Pudding and Black Beauty. Everyone had a blast. Again, Sami didn't want to go home so we tagged along on Shauna's shopping trip. After tearful goodbyes we parted heading home. Sami fell asleep on the ride. I knew she was tired but since she never takes a nap anymore I was quite surprised. I guess all those tears did it.
So I carried her in and she is taking a nap. Which gives me a few minutes to catch up on updating the website.
Thanks for checking in. Drop us a note.
Sandy
Wednesday, October 6, 2004 9:03 PM CDT
So weekdays have been busy with school and work. Just normal routine.
Sami has had some play dates with her friends from Children's Corner like Bhayva and Madison. She has a date planned with Cassidy soon.
Last weekend Sami went to Crayola with Krista and the weekend before we went to Great Adventure with Zachary. It is amazing how the time just flies.
We visited with some friends that now live in out of state that we hope are moving back. It was the infant playgroup reunion of Sami, Kira and Annalee. The kids played great together.
Friday we are attempting her first really sleep over (not just at Naz's next door), but almost an hour away at her god parent's house. She has been looking forward to having a sleep over with Joey.
Just a normal family....
Wednesday, October 6, 2004 9:03 PM CDT
So weekdays have been busy with school and work. Just normal routine.
Sami has had some play dates with her friends from Children's Corner like Bhayva and Madison. She has a date planned with Cassidy soon.
Last weekend Sami went to Crayola with Krista and the weekend before we went to Great Adventure with Zachary. It is amazing how the time just flies.
Friday we are attempting her first really sleep over (not just at Naz's next door), but almost an hour away at her god parent's house. She has been looking forward to having a sleep over with Joey.
Just a normal family....
Sunday, October 3, 2004 9:01 AM CDT
ok, I asked Sami what she wanted to say on the this update and she said, "don't tell me about it."
That is her favorite expression when she is doing something she thinks you won't like.
Well, fall is here and with has come the busy schedule of school and the store. I'm doing my best to keep up with work and the house as well.
Sami goes to Children's Corner Monday - Friday at 9am to 5pm. It is a wonderful Pre-K program and though she loves the school, her new teachers and most of her classmates as half of them are with her, we continue to have drop off problems in the morning. I know it is just an act for me, but makes for a stressful morning.
In the middle of the day Sami leaves her class to board a bus to Crim Public school in Bridgewater. There she is in a Pre-K handicap class to get the special attention she needs to ready herself for Kindergarten. The stree here is that she doesn't get a chance to eat lunch with her freinds. She generally eats in the Children's Corner office or on the play ground. Her bus comes at 11:50 and she is back by 3:30. So she only misses lunch and nap with her classmates. When she comes back she has snack and plays with her friends till I pick her up. She really does love it despite the problems she gives me in the morning.
Sami wears her hearing aides all day, every day with no problems. I think the purple molds were key as well as the getting her ears peirced.
So after the first day of school Sept 8th, we left for vacation to sunny hot Atlanta. We had a great time. We stayed at hotel with a pool which Sami totally enjoyed. We had picnics in the room, dinner with friends and time to relax and be together. Dan was able to attend some framing classes and Sami and I got to visit with friends from NJ that moved to Georgia last year. It was great meeting you at the Zoo Stephanie and Nia (and baby sister). Sami loves playing helper with the baby feeding her in the car etc... The visit was just too short however. Thanks for all the clothes, Sami just loves them.
Well I'll post more soon...
Thursday, September 2, 2004 7:31 PM CDT
Well I finally connected with the doctor tonight. Thanks Dr. Wormer for being so patient. I gave Sami a big huge for you.
The results have everyone confused. Needless to say the MRI study yesterday was inconclusive. The area of concern on the left side of the liver that lite up during the MIBG scan did not appear on the MRI. However the MRI shows 3 - 1 cm nodes on the right side when contrast was injected.
So what is it? They don't know.
What do we do next? Scan again in a few months.
ugrrrr...
Thursday, September 2, 2004 4:16 PM CDT
Hello all
I know you are waiting for results from Sami's MRI yesterday. I am too.
The doctor and I are playing phone tag. I missed his call by minutes this morning when I took Sami to babysitter. Then I carried the phone around everywhere I went and somehow missed his call again. I guess I was on the phone and missed the call waiting.
So I guess we will all have to wait some more.
Thanks for checking in.
Sandy
Thursday, August 26, 2004 9:29 PM CDT
Well Sami had her routine Audiology check up. All went well. Maria was happy with her progress. She is wearing her hearing aids every day. There was no change in the results as they have been constant for quite some time. Though we did have about 20 minutes of concern when Sami decided that she would wait for the big beeps instead of telling us when she heard the small beeps. Then we finally got her rolling again with the game and finished up that part of the testing. She did great with the word games getting only 3 wrong. Sami's digital hearing aides have 2 programs. Maria adjusted the second program to help when Sami is in a loud classroom or background noise setting that she can switch to program 2. In addition she set up the hearing aides as an FM receiver. This way the teacher can were a microphone that is relayed to her hearing aides. In total this visit took about 2 hours.
Sami is very excited to start school on September 8th. She already received a letter from the Pre-K teacher Mrs. Clancey. We haven't heard which class she will be in for Children's Corner. Remember she will be at Children's Corner Nursery School in the morning. The bus will pick her up there and take her to the township's elementary school where she will be in a class with other Pre-K children needing assistance. Specifically she will be getting speech therapy every other day. Then she will be returned to Children's Corner at 3. For the most part she will miss naptime.
Sami is really ready. She likes to do homework with me writing her letters and numbers.
Sandy
Thursday, August 12, 2004 7:14 AM CDT
Please read journal for more details from this past week. This is an update of the MIBG results.
No evidence of Neuroblastoma!
However something is still lighting up in Sami's liver. What that is, no one knows. Just like the scan in March, there appears to be something (they haven't actually called it a mass and I haven't heard how big) in Sami's liver. In March it was unclear if it was uptake from the MIBG left in the organs as it was in the area where the liver over laps the stomach (which I thought it was however the radiologist did not). This time the same area lit up. However after a 360 scan it is now clear that this problem is only in the liver.
Again, I haven't heard any size mentioned but it does appear to be the same size as the last scan. The only difference is that they say it is brighter. That means it has taken up more MIBG which could indicate that it may be denser.
So next steps? Sami is scheduled for an MRI Sept 1st. This will give a better picture of the liver's structure. Hopefully we can find some answers.
Thanks,
Sandy
Wednesday, August 11, 2004 2:11 PM CDT
We have certainly been busy. Luckily I have had Jordan here to help out with Sami.
Last week Sami was off from her normal nursery school Children's Corner as they are closed in August. However she did have one week left of pre K from 8-12. Jordan went to work with Dan in the morning and came here in the afternoon to watch Sami. Sami loves it.
Saturday we had photo shoots at the store, then at 5 we drove to Cowtown Rodeo for another late night.
Sunday we were up early with Sami. Dan and Jordan made pancakes. After breakfast we took Sami to a farm to ride a pony. It was a beautiful day and Sami had so much fun she didn't want to leave. We stopped at a buffalo farm for fresh steak and burgers to take to a friends' for dinner.
We had a great time with the Brieggs. We haven't seen them since Brynne's birthday the first of the year. The weather was perfect for the kids to play outside and Jordan helped to mind Sami as well as Brynne and Boone. We had a wonderful visit.
Monday, Jordan and Sami and I met Tony, Shauna and Kaylee at Sesame Place for a wonderful day at the kid water park. Of coarse Sami was there till closing. I wasn't really surprised when she fell asleep on the drive home, but I was surprised that she woke up and ate at 9pm. I was a bit worried since I needed to get the iodine drops in her for the MIBG scan.
Tuesday we meet with Sami's new doctor, Dr. Reilly. She really isn't new as we used to see her every day when Sami was inpatient. So it was nice to see a familiar face. Dr. Don has moved to Florida helping kids with cancer in the Orlando area.
After clinic we were on to get Sami an IV for the MIGB injection. However we didn't antispate a visit to the ED (they now call the ER...ED for Emergency Department). Jordan fainted and they were worried he hit his head. All is well and we were out by 2pm.
Wednesday we were up at 5am to get to CHOP for the 9am scan. We let Jordan stay home to sleep. Sami slept the whole way down. I'm not worried much anymore about her not eating in the morning as she has never been a breakfast eater and we don't encourage it for this reason. See Sami is sediated for MIBG 45 minute scan so she can't eat in the morning which is why we schedule the first scan of the day.
All went well. We made sure everyone knew our concerns and they checked results with radiologist after the first scan. Then they did a second 360 scan of abdomen. It appears that something is still appearing in the liver. They still don't think it is residual uptake of organs, but don't have the results to know if it is different from the March scan. We will post the results soon. Dr. Reilly checked in with us, but the results were not complete before we left.
This time Sami woke up on the table just as they finished. Though she was on longer (about an hour and a half). Still drunk however, she wanted to eat and drink. Mostly eat Oreo cookies. Not my recommendation for just coming out of sediation but how to you explain that to a drunk? She ate 2 cookies then threw it up. The nurse helped by getting some zofran and IV fluids. We were out by 12. Sami ate crackers and cookies on the way home with some water with no problems. She watched tv and ate lunch when she got home and played computer games with Jordan in the afternoon on her new purple computer chair.
Well, I guess this is long enough. I'll update when we get the scan results.
Sandy
Sunday, August 1, 2004 8:24 PM CDT
It is with a sad heart, lump in my throat and tears in my ears that I have to tell you another child has died of Neuroblastoma.
Not any child, this was Alex from Alex's Lemonade Stand.
Liz and Jay informed us that at about 4 pm today Alex passed on peacefully with us holding her hands.
here is the message from www.cnn.com
http://www.cnn.com/2004/HEALTH/conditions/08/02/alex.lemonade.ap/index.html
Remember Alex's goal was to help children get better. This year she wanted to raise $1 million for Pediatric Cancer Research.
Although the experimental treatments were not successful in rescuing Alex, they gave her choices and quality time to live her life on this earth and making a difference in this world.
The last total I heard was over $700,000. With the efforts of family and friends that goal will be acheived. To learn more about the Lemonade Stand.
www.alexslemonade.com
Sandy
Wednesday, July 28, 2004 4:02 PM CDT
Well just back from the mall. Sami finially got her ears pierced. For those of you that don't remember, we made Sami a deal and if she wore her hearing aides every day she could get her ears pierced. Well it has been almost a year, but she has done it. She lets me put her hearing aides on every day. She just loves the new purple with sparkle molds. Dan will post pictures soon.
Not that we got many pictures, while I was reading and signing all the paper work, she jumped up in the chair the girl dotted her ear lobes with purple pen, we all approved and before we knew it one was done and Sami had a great big smile on her face. I don't even know if Dan got a picture. I was looking at the papers I was signing and I don't even think Anjali our neighor who came for support saw it either. The next one was done the next minute and we were on our way with beautiful purple (did you expect anything else) ear rings.
With the Mitras home from their 6 week trip to Malaysia and India, the hamsters and fish are heading home. I was surprised how willing Sami was to let them go. When she saw Anjali she ran in the house to get the cages. But no fear, Sami still has her hamster and blue fish and her new addition orange fish. The family is growing.
Our nephew Jordan is coming next week to watch Sami after pre K. Children's Corner, her normal nursery school that she has been attending since September, is closed in August. She will go back to Children's Corner in September moving up from nursery to pre k. She will attend the morning session. then the township will pickher up in a bus at Children's Corner and take her to public school for the Pre K handicap class. In this class she will get the speach therapy and attention for language development. So far she loves Pre K at the red school which is the high school where the summer sessions are held. In the September the class will be at the Crim school here in Bridgewater.
Well more about school later. The month of August looks like this:
First week Pre K in the morning. Bus picks up at 8 am brings her home at 12. Jordan will watch her in the afternoon
Second week, no school. I plan to take Sami to Sesame Place on Monday (anyone want to join us?) Tuesday and Wednesday she has to go to CHOP. Tuesday clinic to see Dr. Reilly (Dr.Don Eslin has move to Florida), get an IV for the MIGB and injection. Wednesday back to CHOP for 9am MIGB scan. Thursday and Friday Sami will be back to her first daycare and great friends (like family) Mary Lou and Lis.
The rest of the month Sami will be with her daycare family.
Don't forget to drop us a line or say a hello on the guest book. We check every day.
Sandy
Monday, July 19, 2004 11:03 PM CDT
Sami continues to love the BUS. However it is getting harder to wake her up and it doesn't help that the bus keeps coming earlier. It is coming at 7:50 now.
Last week Sami had play dates with Alyssa on Tuesday, and my good friend Lori came for dinner with her husband Dave and 5 year old twins David and Gabrella. The kids played great, Dan made a fabulous dinner and it was just nice to be able to sit and relax and talk, while the kids played.
The rest of the week flew by as usual with Sami at the Red School (as she calls it) which is the Pre K summer school at the high school in the morning and Children's Corner in the afternoon.
Saturday Sami and I went to the store to help Daddy with a couple of photo shoots. Maureen is a four year old like Sami that needed a bit of encouragement to get her photos taken. It all worked out in the end.
At the same time we had 2 customers come in that are also friends. My good friend Becky. We worked together in my previous position American Express 6 years ago. She looked great. Our coworker Ros meet us for lunch. It was so nice to catch up. And Jill (and neighbor) with her children Amy and Michelle. Thanks girls once again for helping with Sami. She has so much fun with you.
Sunday we went to Sami's godfather's Jason. We haven't seen them in so long. We missed Joey's birthday and previous dates had to be changed to to weather and sickness. This date probably should have been cancelled due to rain (we couldn't go swimming) however it was nice just staying in and visiting. Sami and Joey played so well. Sami wants to come back and spend the night in Joey's race car bed.
4 years old is great and getting better!
Sunday, July 11, 2004 10:33 PM CDT
Sami is doing fine. The fever continued through Friday. Saturday we hung around the house while Daddy worked. We took a walk after dinner and visited with some neighbors.
Sunday we had guests from Syracuse, Tom, Sue and Michelle. Sami had a great time treating them to Dan's famous pancakes and showing them around our new store. The last time they were down to visit we were considering the purchase so it was alot for them to see all the changes we have made.
Sunday afternoon our teenage neighbors organized a block party for kids. The adults hung out and caught up on the summer events. It was great fun. Thanks Danielle, Emily and Jessie for organizing the event. Thanks Amy and Michelle for helping with Sami and the smaller kids. They had about 16 kids altogether partisipate.
Sami is excited about school bus coming tomorrow. I was surprised how easy it was go get her to leave the block party (it was closing up), take a bath (and get her hair washed), we did her nails (purple of coarse), and she was in bed by 9:30, asleep by 10. AMAZING.
However she did miss a call at 10pm from our neighbors who are on vacation in Malaysia. We miss you Mitra family ! Hamsters and fish are doing fine.
Sandy
Wednesday, July 7, 2004 2:48 PM CDT
Well, another fever ! What is up with this? Isn't summertime suppose to be sickfree?
She started with a slight runny nose over the weekend. Nothing unusual for her. Then a barky cough on Monday, but just when she woke up. Then Monday night at bedtime she felt warm but went to school Tuesday without any problems. Tuesday night a fever which now explains the mood she was in late in the evening.
Wednesday of coarse was all booked up between work and play things scheduled so we had to make some quick changes. Sami can't go to school until 24 hours free of fever.
So Dan stayed with Sami this morning so I could work. I took Sami to her audiology appointment at lunchtime. I almost cancelled but she was fine all morning. The appointment was to fix the broken tube on her hearing aide and get new molds (she picked purple with sparkles...look out).
She fell a sleep on the ride to Princeton and I woke her up when we got there...hot with fever. Luckily I brought Tylenol. But she gives me such a hard time taking meds.
The audiologist checked her ears and they looked fine. I think it is just a virus in her throat so I'm hoping she will shake this fever by tomorrow. She is napping now and I hear the bark cough a bit more now. So she is sure to stay home from school. I just made an appointment at the doctors at 11:30. She had this last Sept as this journal so appropriately informed me. She may need antibotics (I hope not).
Krista is off from work Thursday as we had it planned originally that she would pick her up from school. I just changed the agenda that she will just come here in the morning so I can work.
Hopefully Sami will be ok for school on Friday.
Sandy
Tuesday, July 6, 2004 10:29 PM CDT
Sami is having a great time at her new school. She was accepted into Bridgewater's Pre K class. She started her 6 week summer class June 28th. It goes from 8am to 12pm at the high school.
She thinks it is great that the bus picks her up and takes her to the RED school as she calls it.
At 12 the bus takes her to what she now calls her "old school" Children's Corner.
Check out the pictures to see how excited she is. For those that knew I was dragging her out of bed to get to Children's Corner by 9, will be surprised to hear that she is up at 7:30 getting ready for the bus to come at 8.
She is wearing her hearing aides, every day pretty much all day. She hasn't asked for her ears peiced yet, so I'm just waiting till she asks so I can finially say YES.
Sandy
Monday, June 28, 2004 8:44 PM CDT
Thanks to everyone that joined us at McDonald's tonight. We raised $135 for Alex's Lemonade Stand.
McDonald's was disappointed. They expected more. But we were happy just to have the friendship, share Alex's story and as Liz said, even $20 is another step towards a cure.
Dan now has the fever virus that Sami had last week. I'm still the hold out hoping that I can pass this by.
Sami had a great time getting on the school bus today. We will post pictures soon.
Sandy
Friday, June 25, 2004 8:22 PM CDT
Dan's birthday was Wednesday, but it wasn't quite the day we had planned.
Sami came down with a fever at 3:30am. That kept her home from school, but she seemed to feel ok if the meds were onboard. Once they wore off she was achy and clingy. We made decided to stay home for the night.
Thursday she woke to a temp at 7am. After all day without a fever, I thought we were in the clear and she would be able to start her new school on Friday. However, her temp returned at midnight.
She spent the day Friday at home. She was fine, no fevers. Though we are all disappointed that she missed her first day of pre-k.
Monday is another day. The good news is that the bus doesn't come till about 8. I thought she had to be at school at 8.
We hope everyone can join us at McDonald's in Hillsborough on Monday June 28th. We plan to get there about 6:30. McDonald's is donating 15 f sales from 5-8 to Alex.
Alex is up to $500,000 and with the events planned this year they believe they will reach the goal of $1k.
We hope to have another lemonade stand soon either at the house or at the store. Maybe not as big, but just as much fun. You can have your own stand as well. If you need help just ask.
So if you can't attend, feel free to send your donations to Sami or directly to Alex at www.alexslemonade.com
You can purchase Alex's book online as well. All the profits go to the fund.
Thanks,
Sandy
Tuesday, June 22, 2004 9:12 AM CDT
Sami can't wait for Friday to go on the bus. She starts the summer Pre-K session for 6 weeks. The bus will pick her up in the morning and take her to the high school where the summer classes are held. Then at noon, the bus will take her to Children's Corner her regular nursery school.
In September it will be a different schedule as her Pre-K class is from 12-3. She will be at Children's Corner in the morning and the bus will pick her up and bring her back to Children's Corner. We are lucky that her nursery school is in district.
Remember to join us for dinner on Monday, June 28th at the McDonalds in Hillsborough. McDonalds will donate 15% of the sales to Alex's Lemonade from this location during 5-8pm.
It is raining here today and I need to get back to Sami's school soon. I am helping at lunch today with Bhavya's Mom Bindu. Sami's teacher has a luncheon to go to so we are playing teacher. The kids are very excited.
Sandy
Thursday, June 17, 2004 4:37 PM CDT
Money is still coming in the mail from friends and family. THANK YOU !
You can also donate on alex's site at: www.alexslemonade.com
We will have a another fund raiser for Alex Monday, June 28th from 5-8pm at McDonalds in Hillsborough. Sami will make an appearance for dinner about 6:30. Join us if you can. McDonalds will donate 15% of the sales to Alex from this location during 5-8pm.
SAmi has her spring concert at school tomorrow. She is very excited that Grand Dad and Aunt Arlene are coming.
Sandy
Sunday, June 13, 2004 5:16 PM CDT
Final total for our stand including the stand at home and at Pathmark: $7,582.80
At last word from Jay, Alex's dad, they were over $300,000 and still counting. We should continue to get updates through the week, but the real total will come in next week when all the paperwork is due to Alex.
Thank you to all that donated your time, efforts and money. Especially to suppliers: Staples, Office Max, Wegmans, Party City, Burger King and Country Time Lemonade. A big thank you to Amanada, Brianna and Nicole for pouring lemonade, adhering tattoos and entertaining the kids. Thanks for all our friends that made treats.
We are already discussing how we will do better next year.
for those interested in Alex's book, go to her website at: www.alexslemonade.com or to www.amazon.com
It was great !
Sandy
Sunday, June 13, 2004 5:16 PM CDT
Final total for our stand including the stand at home and at Pathmark: $7,582.80
At last word from Jay, Alex's dad, they were over $300,000 and still counting. We should continue to get updates through the week, but the real total will come in next week when all the paperwork is due to Alex.
Thank you to all that donated your time, efforts and money. Especially to suppliers: Staples, Office Max, Wegmans, Party City, Burger King and Country Time Lemonade. A big thank you to Amanada, Brianna and Nicole for pouring lemonade, adhering tattoos and entertaining the kids. Thanks for all our friends that made treats.
We are already discussing how we will do better next year.
for those interested in Alex's book, go to her website at: www.alexslemonade.com or to www.amazon.com
It was great !
Sandy
Saturday, June 12, 2004 1:32 PM CDT
************NEW TOTAL***********
As of 4:00PM our total is $7,213.74
*************************************
It is not too late to donate, log onto www.alexslemonade.com to make an online donation as well as purchase her book.
so I don't forget, I want to mention a wonderful visit from Sal who lost his son from NB last year. I wish I had more time to speak with him. Sal if you read this contact me.
I would also love to speak to the couple that donated $5,000. I don't have details about the visit because I was off with Sami getting balloons at the time. Some are saying it was an individual donation and others were asking if it was a collection. I understand you may have a connection with another NB child. I'd love to reach out to support them. So please contact me as well.
I didn't have time to visit with the Sharbaugh family, the Grimaldi's and so many more of my wonderful friends that time after time, come to show their support.
Big thank you to Fisher family for traveling all this way to bring Catie to reunite with Sami. Catie and Sami roomed together at CHOP....and looking at pictures today, we were shocked to say it was 3 YEARS AGO !
As Sami and Catie move further away from treatment enjoying normal childhood, I look to Maddie as she is ending treatment and ready to begin this journey of having normal days.
Thanks to Catie and Maddie for coming to Sami's lemonade stand. We are so glad you are here to celebrate with us. You made my day !
Prelimanary results are in....
Gray's Family Foto is estimating $6,700.
The whole day was wonderful. A few exciting moments included:
$5,000 cup of Lemonade !
$100 drive by (no lemonade requested)
The kids had a blast drinking lemonade, eating snacks and best of all the tattoos.
THANK YOU to Amanda, Nicole and Brianna for helping to serve lemonade and treating the kids with tattoos.
WE are still waiting on reports from the Pathmark stand and the home stand. Total to follow soon.
Sandy
Wednesday, June 9, 2004 2:36 PM CDT
Count down to June 12th. The Lemonade Stand that is sweeping the country. Alex, as seen on the Today Show and Oprha, has a goal to raise $1 million dollars for pediatric cancer research and we are going to help her. I heard the count is up to 300 stands being held this Saturday. If you want more details about Alex's goals go to her website at www.alexslemonade.com
Our stand hosted by Sami with visits from her fellow neuroblastoma survivor friends Catie Fisher and Maddie Benoff will be at Gray's Family Foto, 411 Route 206, Hillsborough, New Jersey from 11-3.
Of coarse Lemonade will be served by Sami as well as juice and water. Friends are making snacks including Naz's banana bread, Jill's rice krispy treats and Lori's chocolate covered pretzels to name a few. Close friends and their kids are coming to help out including: Nicoles Puppet Show. Amanda and Brianna's tattoos and kid grab bag items.
We will have Volvo raffle tickets at a cost of $10 each or 3 of $25. or you can go to Alex's site to learn about other options. A copy of Alexs book on display or you can purchase today on amazion.com. The Official Childhood Cancer symbol of New Jersey: Rainbow Ribbon Pin for sale $5 each to show your support to Pediatric Cancer.
Our supporters have been Staples and Office Max for copies, Sunkist for Lemonade, Wegmans for water, Burger King for ice and cups and McDonalds for large thermos ball. In addition, Dan has arranged with Pathmark in Hillsborough by the new Lowes and Kohl's to hold a stand at their expense. Friends of the Benoff family will host at this location.
We look forward to a great event, here at Sami's Lemonade Stand for Alex and at the other stands throughout the USA (and Canada as well).
If you need directions or information call Gray's Family Foto at 908-359-5590
UPDATE: Pick up the STAR LEDGER Friday. Sami was just interviewed and photographed at her Lemonade Stand. The reporter told me there are other stands in NJ as well in Roxbury and Summit.
Dan told me Star Ledger, yet I just went through the paper and I didn't see anything. Meanwhile a neighbor passed me by and said they read the article in the Courier News. I have checked on line and have not found the article as yet.
I have had two neighbors call to say they have heard the announcement about the lemonade stand on WPJL.
In addition, our friend Joey in Wilkes Barre, PA is having a stand. Check out Joey's website: http://www.caringbridge.org/pa/joey/
Friday, May 14, 2004 8:19 AM CDT
Plans continue for our Lemonade Stand. Volunteers and donations are needed. Call for details: 908-704-8057
As everyone on Caringbridge knows, these kids need help. And help can be in the form of money or a pray. All are needed.
Today I'd like to tell you about a courageous girl named Alex. Alexandra Scott knows first-hand the need for a cure for childhood cancer. Two days before her first birthday she was diagnosed with neuroblastoma, an aggressive cancer of the sympathetic nervous system. After seven years of treatments, she is still fighting, with doctors and researchers still trying to achieve a cure.
At the age of four, Alex decided to do something to make that cure more likely. Her idea was simple: she would hold a lemonade stand and donate the money to her hospital to help kids get better. Her parents were proud but skeptical; Alexs response was typical of the attitude that has carried her through seven years of intense treatmentI dont care, I will do it anyway!
During the past four yearswhile continuously battling cancerAlex has raised more than $190,000 for pediatric cancer research. On June 12, 2004, children throughout the country will join Alex in her search for a cure.
Just like Alex, Sami was diagnosed with Stage IV Neuroblastoma just after her first birthday. You know what she has endured. But Sami is blessed with remission from this terrible disease.
Sami, her family and friends are honored to join Alex in her goal of a Lemonade Stand in every stand on June 12, 2004.
Visit the Grays Saturday, June 12th from 11am-3pm at
Gray Family Foto
411 Route 206
Hillsborough
908-359-5590
If you can't make it yourself, send your donations or make a treat. We need treats and activities for visitors. Your suggestions and help are welcome.
Learn more about the lemonade stand at: www.alexslemonade.com
News from Alex:
Just back from taping Oprah Show and received $25,000 donation from Kellogg's for The Fund!
Raffle tickets are available for a 2 year S40 Volvo lease
Alex's book available May 28th at book stores
Article now available in Creative Kids Magazine, a Better Homes and Garden Magazine.
Tentative June 4th date for Today Show.
Saturday, April 24, 2004 9:32 PM CDT
Air Fare to Orlando $250.00
Hotel Room near Disney $125.00
Watching Sami Jump, Scream, laugh and hug the Characters PRICELESS
Last week Sami went on a tripIll let Sami tell you.
Hi Guys,
My Mommy and My Daddy took me on a fun trip last week. We started out meeting a friend of My Daddys near the Philly airport, Mike. He is Daddys best friend since they were 6 years old. We went to a fun place in Philly called Dave and Busters for dinner and after they had lots of fun games. I wanted to stay all night but had to go.
We got up early in the morning and went to the airport and got on a big airplane and flew for 2 hrs. When we got off the plane it was bright and warm. We were in Florida to visit Mickey Mouse.
Our first stop was at Sea World. I was looking for Mickey all over but all I could find was a bunch of fish. We saw some real big fish and some baby ones too. I like the babies the best. After spending the day there we went to our hotel and guess what we did? I pretended I was a fish and swam in the pool. It was so much fun playing in the pool. I wanted to stay in all night but my Mommy and Daddy had to pull me out of the water and we went up to our room and got dressed and went shopping for some snacks for Sami.thats me. Oh did I forget to tell you all the cloths I picked out to take on the trip were purple..my favorite color.
Tuesday we got up early and drove over to Mickey Mouses house. We started out at MGM. I got to see Bear in the Big Blue House. Then we saw my favorite Beauty and the Beast. I think I could have stayed there all day to see Beauty and the Beast. We did some shopping and then went on the Mono Rail to Magic Kingdom. I was the co-pilot of the monorail. I got to sit up front on the ride and help the man drive it. The first thing we did when we got there was to see a parade. I got to see Mickey and all of my friends, even Beauty and the Beast. We went on a boat ride, train ride, and I got to drive a car too. I played in the tree house and went on Buzz Light Years ride. I won. I beat Daddy and helped My Friend Buzz. And we went all over the park. The last thing we did was to go to the Philharmonic Mickey show. It was 3D where I had to wear a cool pair of glasses (but they were not purple). I loved all the music, and it was funny too. oh we got a private show, we were the only ones in the place. It was so much fun I was dancing at my seat. After that we went shopping on main street and I got to help the nice people there straighten up all the Mickey dolls. My Mommy helped me out to the car and I was so tired I fell asleep before daddy got the car started.
Wednesday we got up and went to a fun breakfast at the Beach Club. Minnie was waiting for me when we got to the restaurant. Goofy and Chip and Dale came around to my table to say hi to me. It was so exciting. Afterwards, my Mommy and Daddy took me to a nice place to look at our new vacation home so I can go back to visit Mickey and all my friends every year. We went to dinner and sat upstairs on the balcony to eat and watch a real funny show. It was called the HoupDeDo review. They were real funny. During the show they brought lots of food around. I really liked the ribs and fried chicken. They had the best bread and butter, I could have had just that. After dinner we went to see the horses and we went on a fun ride. They were real nice horses: Mac and Rod. We went back to our hotel to relax and get ready for another busy day.
Thursday we got up early and we went to Universal Studios. This was the first time I was there in Florida though I saw it in CA last year. It was so big and had lots of fun things to do. I helped Jimmy Neutron and meeting Sponge Bob Square Pants. I got a real nice purple Dora shirt, did I tell you purple is my favorite color? Then we went to see Barney. He was so big and Purple, my favorite color. We got to see the Animal Show with all kinds of doggies, cats and even a pig in it. We got to go on lots of rides and my favorite was Cat in the Hat ride. I got to go on it 2 times. I did not want to get off. I made a new friend at dinner and had some good pasta. After we ate we went out side and they were playing lots of music me and Mommy were dancing to it and having lots of fun.
Friday morning we got up early and went to breakfast with Mary Poppins, Alice in WonderLand, the Mad Hatter, Pooh and Eyeor . I had lots fun there, but it was time for us to fly home. I had a great time with my Mommy and Daddy and cant wait till next February to do it all again. Do you want to join me?
Friday, April 16, 2004 9:29 AM CDT
Alex needs your help!
Alexandra Alex Scott knows first-hand the need for a cure for childhood cancer. Two days before her first birthday she was diagnosed with neuroblastoma, an aggressive cancer of the sympathetic nervous system. After seven years of treatments, she is still fighting, with doctors and researchers still trying to achieve a cure.
At the age of four, Alex decided to do something to make that cure more likely. Her idea was simple: she would hold a lemonade stand and donate the money to her hospital to help kids get better. Her parents were proud but skeptical; Alexs response was typical of the attitude that has carried her through seven years of intense treatmentI dont care, I will do it anyway!
During the past four yearswhile continuously battling cancerAlex has raised more than $190,000 for pediatric cancer research. On June 12, 2004, children throughout the country will join Alex in her search for a cure.
Samantha Sami Gray was born March 27, 2000, to Sandy and Dan Gray of Bridgewater, NJ. Just like Alex, Sami was diagnosed with Stage IV Neuroblastoma just after her first birthday. She endured 18 months of intense therapy including five rounds of high-dose chemotherapy, an 6 hour surgery to remove what they could of her primary tumor, two stem cell transplants, 10 cycles of radiation and six months of oral accutane.
Sami is blessed with remission from this terrible disease which is quite rare with a 30 urvival rate. Sami, her family and friends are honored to join Alex in her goal of a Lemonade Stand in every stand on June 12, 2004.
Visit the Grays at
Gray Family Foto
411 Route 206
Hillsborough
908-359-5590
Saturday, June 12th from 11am-3pm
Learn more about the lemonade stand at: www.alexslemonade.com
We still need stands in the following states:
South Carolina
North Dakota
South Dakota
Wisconsin
New Mexico
Idaho
Mississippi
Utah
Hawaii
Alaska
Kansas
Colorado
Wyoming
Tuesday, April 13, 2004 9:49 AM CDT
Great NEWS !
The urine test was normal.
As you may know from following the journal the past few weeks, Sami's last MIBG scan showed a questionable area in her abdomen. The urine test checks the Catecholamines in her body. All reports came back normal indicating no live Neuroblastoma in her system.
We are waiting for official report and next step from Dr. Don. We suspect there will be another scan ordered in 3 months.
Thanks for all your prayers and support.
Help us with Alex's Lemonade Stand June 12th.
States we still need confirmed stands for June 12th. If you know of anyone in these states who may want to host a stand have them e-mail us or Alex at stands@alexslemonade.com .
South Carolina
North Dakota
South Dakota
Wisconsin
New Mexico
Idaho
Mississippi
Utah
Hawaii
Alaska
Kansas
Colorado
Wyoming
Monday, April 12, 2004 6:49 AM CDT
Saturday Sami went on an Easter Egg Hunt with Kevin. Kevin was the lucky one to find a special egg, which got him a 12 inch chocolate bunny. IT was a beautiful day though a bit cool when the wind would blow.
Granny and Grand Dad were on hand for the festivities. Afterwards we went back home for lunch. Sami road her bike and waited for Kevin which turned out to be an all day hold out. First he went down for a 3.5-hour nap, then dinner, errors, family visit and bath. I felt like we spent the day in front of his house.
Though we did get some fun in. Granny and Grand Dad helped us clean the back deck. We put out the awning and had a picnic lunch. Sami painted with Granny. Afterward they headed out for the 3 hours drive home.
Sami and I had to deliver reprint pictures to a couple we took their wedding last year. We know the family as they watched Sami her first year of life. They were visiting one of the sisters that recently moved into a new home close by. Sami had a blast with the kids playing on the swings, trampoline and even a tracker ride.
Then we went to Toys R US; I was still stalling because Kevin wasnt ready for playing. I talked her into going to find a Dora lunch box that we did not find. But she did get a new toy for the bath, which she needed. Dora of coarse. After dinner Sami wanted to take a bath. Then a movie and popcorn together to end a beautiful day.
Sunday was Easter and we all went to Wegmans to get breakfast and food for the week. We played and cleaned up the office a bit. Then we went to the Salerno farm to have Easter Dinner. To be honest, Sami was dressed and ready to go at 10am! And dinner wasnt till 5:30.
Today Sami has off from School. She has a play date with Bhavya this morning and hair cut this afternoon.
Should be a busy week before vacation next week. The calendar is filling up.
Friday, April 9, 2004 12:46 AM CDT
Wednesday night we joined Sami's friend Bhavya for an Easter egg hunt. Sami had a great time, though I was embrassed for forgetting her basket. Though the Wegmans bag was more practical for picking up hundreds of the plastic eggs with football chocolate inside, yummmy.
Thursday we meet our friends the Glickman's from California. We all went to their house last year about this time for a visit and to see Mickey Mouse at DisneyLand of coarse. It was great to catch up as it was....
We went to the Discover House Muesum to let the kids play, they all had fun.
Then granny and grand dad York arrived. We had dinner and enjoyed the evening.
Today Granny is watching Sami so Mommy can work. Dan is at the store and doing well. Nothing really planned for this evening.
Saturday is another Easter Egg hunt. This time with Kevin.
Wednesday, April 7, 2004 9:22 AM CDT
Well, crazy day yesterday so I didn't get a chance to post.
It was Dan and my 20th Wedding Anniversary. What did we do? work of coarse.
Sami had a regular 4-year-old pediatrician appointment at 1pm. I picked her up at school after lunch. She was happy to skip her nap (which she only takes at school, she hasn't taken a nap for me in almost 2 years).
She was happy to see Dr. Gora and was very cooperative. She weighed in at a whopping 37 lbs on the chart at 50 percentile. And growing another inch, she was 3 feet 2 inches hitting the chart at 15 percentile. All functions were normal, everyone was quite pleased.
We discuss the recent scans as she had a conversation with Dr. Don in the morning. The plan is to check her catecolomines (however you spell that) with a urine test. Neuroblastoma gives off this chemical that is released in the urine and can be measured. Many children with Neuroblastoma get this test often. Sami hasn't had it since she was first diagnosed. She was so great, we had to go to an outside lab, which we first had to find because they had moved. Then she pee-peed in a cup, which we made a very big deal over. Now we hope and pray.
I believe the plan is to scan again in 3 months and in my opinion it should be another MIBG.
Sami and I spent the rest of the afternoon shopping and visiting. I dropped her off at a friends the Grimaldi's: Lori and Dave's with there twins David and Gabriella at 5. Sami went to T-Ball practice with them, ate dinner, took a bath and had loads of fun.
Meanwhile Dan and I had lovely dinner at a new restaurant at the mall.
We picked her up at 9;30 and the whole way home she asked to spend the night at the Grimaldi house. next time I guess.
Sandy
Monday, April 5, 2004 7:28 PM CDT
Well a call from Dr. Don has put us once again on a roller coaster ride.
I can't explain it as well as he did, but the radiologist sees an area in the abdomen taking up MIBG. It can't be confirmed if is it Neuroblastoma (malignant) or another type of blastoma that is non malignant or even take up of the organs which if scanned the next day would have been cleared.
He has order a urine test that checks for VMA and HVA key tones. It is called Urine Catacolomines (not sure of the spelling). Even if this test is normal, he recommends a scan in 3 months.
I know I'm really bummed. But the choice of test MIGB or Cat scan is up to us. I have questions, before we decide which test.
You know if he wasn't so quick to say no more cat scans 3 weeks ago, this wouldn't bother me so much. Well, maybe it would.
Sandy
Friday, April 2, 2004 11:26 PM CST
Well the news you have all be waiting for...Samis bones are clear.
We dont have the official report from the doctor, but we are confident that the full scan will be confirmed clear on Monday.
Why Sami needed an MIBG scan. During her 6-month check up 2 weeks ago, I mentioned that she complained about her legs hurting. I know it is just growing pains. But to be cautious, the doctor order an MIBG scan. MIBG is a radioactive medication that Neuroblastoma cells like and eat up. When scanned if there are Neuroblastoma cells they will light up. She hasnt had an MIBG scan since after the 2nd transplant 2 years ago. Actually, except for the first scan we think they have all been clear.
The Study (as they like to call it). Sami did great Wednesday. She didnt want to see Dr. Don, she wanted to go to the peditricans office to see Dr. Gora. But we headed past the peditricans office to CHOP. It was an easy drive with not much traffic. It took about an hour and half or so. Sami sang, read books, wore her hearing aides and looked for purple (her favorite color) cars and trucks. We arrived early and headed for clinic. Don called yesterday and said he wanted CBC and panel. Sami played until her name was called for triage. Blood pressure, weight and temp were the order and it was all fine until the nurse brought the heat packs in. Then the screaming started. I asked if they could at least wait until the thermometer was out from her arm. We got out the door and Heidi was directing us to a room to put the IV in. Everyone came out to see this screaming kid. Meagan helped hold and with a quick check of the best vein, Heidi was in with one stick. Way to go Heidi (it was four sticks 2 weeks ago for her cat scan). Dr. Don came by and she told him to leave (sorry Don she wanted Dr. Gora today, next week when she goes to see Dr. Gora she will probably ask for you). Sami gave Heidi got a hug.
After the IV was secured and taped they put a big no-no on her arm like a cast, Sami loved the attention. Immediately said she wanted to go to school to show her teacher and friends. But we were off to get the MIBG injection. Over to the hospital to check in, we had to wait an hour for the meds to be ready. The nurse took it slow and discussed with Sami all the movies they have for her in the scan room. Though Sami said no to even Dora the Explorer stating she wanted to go to sleep for pictures. So the IV stayed in overnight.
Sami called all her cousins and friends and went to school to show them her tubies. We tell her she used to have tubies all the time in her chest but she doesnt remember.
Thursday it was out of the house by 6:30am. More traffic and rain made this ride more than 2 hours. I was tired which made the drive seem longer and hard. Dan had to work unexpectedly (when you own your own business and the help calls out at the last minute there is nothing else you can do). We arrived at the hospital and waited a bit for triage. But it was Helen (our favorite) that called her name and Sami expected the worse. I told her no owies today and the tears went away. Normal check in with nurses and doctors and sleepy meds were in by 9:20. Did I mention this was a 9am scan (they are always late). Helen and I stayed in the room with Sami as she snoozed on a table just 20 inches wide, but 4 feet off the ground. Dont worry, she is strapped in with tape. This table moves under the scanner and she is sandwiched inside. It is a long test, estimated at 45 minutes, which scans her full body. But time seemed to fly as we all discussed what Sami has been through and how great she is doing. There was some concern at first that she had a full bladder (this girl can hold her pee) which could cause problems reading the scan, but I explained our attention was on bones.
After the scan, the radiologist stepped in and the tech asked if the bladder needed to be emptied, he said no, it all looks fine (or something like that). They talk to techs, not the parents. They save that for the doctors to tell you. But I was comfortable with that. If he saw any problems, he would have asked for more.
Because of sedation, Sami was sure to sleep another hour. I left her with Helen and got some breakfast and visited with the 3 South (formally 3 East) staff. As always Dan armed me with lots of pictures to hand out to our old friends the nurses that cared for Sami. Sami usually isnt up for visiting after sedation. As a matter of fact, she woke up and was raring to go. Not a good sign for me as I had hoped for a sleepy Sami. On the stoll to the car she decided that she wanted cookies. She directed me to clinic which she stole oreo cookies. She was awake the whole way home. I had hoped for a nap myself when we got home, but no such luck. Because I was tired, my patience was short. She was quite demanding and active. She is not suppose to do any activities because the sedation meds make her coordination off, like she was drunk. It was a rough afternoon for me.
By Friday, she was back at school and had a normal day.
Dr. Don called to say he cant yet confirm all went well with the scan. There is a comment by the radiologist that he needs more details regarding the organs taking up MIBG. We have heard this many times before including the need rescans the next day. This area noted by the radiologist is where the liver and the stomach overlay, near the kidney and vein cava where the original tumor could not be removed. But we know this tumor is dead so it is not taking MIBG. It is just the overlap making the appearance of MIBG. So we have to wait for confirmation before we can truly celebrate.
Sami will continue to take iodine drops for the next 3 days to protect her throid from the radioactive MIBG iodine. I have been able to hide it in drinks this time so it is nothing like the issues we have had in the past.
The future. Sami is far from the sickness of 2 years ago and we are grateful. We hope now to move away from the scans and all the tests. Her next scheduled appointment with oncology will be in March 2005. We will meet a new doctor in clinic where they will test her blood and that is it.
Sunday, March 28, 2004 9:04 PM CST
Check out the pictures from the party.....
Sami had a great birthday on Saturday March 27th!
THANKS for all the posting. We do get disappointed when there is nothing to read. It is great to see all the people that still follow Sami through this journey. THANKS AGAIN (and if you haven't signed in awhile, please do)
She woke up happy after going to bed at 11:50pm, just 10 minutes shy of her birthday. She partied hard with her friend Kevin whose birthday was the day before hers. Then she came home and watched the new Cat in the Hat movie we bought. I thought for sure she wouldn't make it through the whole movie, but she did. I carried her to bed when the movie ended at 11:45 and she was asleep by 11:55 or less.
Saturday we woke about 8:30am. She was happy and giggling. She took a bath and got her hair washed for the big day. Though I couldn't talk her into a dress. She did wear the new top that her god parents gave her for xmas that I have been trying to get her to wear. So that was nice.
I gave her a pedicure and manicure and painted her nails purple. The color of the month. She watched Cat in the Hat 2 more times. She wanted me to sit with her, but I was able to get a few things done around the house in preparation for the party.
Jack, Dottie and 3 of the Wiley boys, David, Jordan and Johan arrived about 1. They helped me with more decorations and entertaining Sami. Daddy followed shortly after with balloons. Then Aunt Arlene came with the Dora cake, cupcakes, party crafts, gifts and food....wow!
From there it seemed like the guests followed one by one. Jason (sami's god father), Joann, Joey and Justin were next to arrive. Then Sami's teacher from Children's Corner Chris Ceronia and her niece Madison, and 5 of her friends from school: Bhavya and her mom, Peyton and her mom, Justin and his mom, Cassidy and her mom, and Madison and her mom. Kevin was a guest with his parents and well as our helper and friend Anjali from next door.
Everyone got a spill proof cup and choice of drink, then we went down stairs to party. Everyone was given a pot to decorate as well as a message that goes over the door knob. It was great fun, and I couldn't believe how quiet. Highlights included pin the tail on swiper and dora the pinita. Cupcakes were a big hit and everyone helped open presents. Surprisingly there wasn't one duplicate present or card. THANKS EVERYONE.
After the kid party at 5, more friends and family came. From next door Naz and Kabir joined Anjali, Salernos: Betty, Shauna, Krista and baby Kaylee (who isn't such a baby anymore at 18 months).
Sami got calls from Aunt Patty and Grand Dad and granny Karan.
Things winded down about 10pm, and sleeping arrangements found Sami on the family room floor with John and Jordan. She did great. Well, that was after ET movie went off about 12. yes, we have a night owl.
Today was beautiful. Sami played with the boys. Then we drove to Newark to pick up Sami's cousin Angela at the train station. She leaves in Queens now. but it is further than we all figured at it took her 2 1/2 hours to get to Newark. She couldn't have meet up in Baltimore quicker.
We showed the family around our new photo store and had lunch at the Chinese buffet. After that the Wiley's needed to get home and Angela was worried about her journey as well. Dan took her back to Newark and I stayed with Sami.
It was a gorgeous day, 66 degrees. Sami rode her bike and scooter, played with the neighbors and just had fun. I got a big of gardening done (the animals dug up my flowers last night) and straighten up the garage a bit.
We went to Wal-Mart so Sami could spend some of her birthday money. All Dora the Explorer: a pillow case, video and cd of music. She still wants a Dora sweat shirt and umbrella, but we can't get it all at once. The fun part was we used the self check out and Sami did the scan, bag and paying herself.
The next two days should be normal. After that we have to go to CHOP Wednesday for MIBG injection and Thursday for scan.
Well, got to run.
Sandy
Friday, March 26, 2004 1:31 PM CST
We are getting ready for the big day !
Sami's 4th Birthday is March 27th.
Family and friends well be here to celebrate with all things Dora the Explorer. It will be a great day.
Sami did great Wednesday at CHOP satellite office in Princeton. She saw the audiologist Maria. Her hearing is the same which is good. She has been wearing her hearing aides a little each night, as well as with the speech therapist and just this week at school during reading time.
Sami knows that if she wears and takes care of her hearing aides she can get the reward she wants so badly....her ears pierced. Hopefully if she continues to wear the aids at school, we can get that reward by the end of April. The goal was March, but I think we need to hold off a bit.
I'll update soon.
Sandy
Saturday, March 20, 2004 10:37 PM CST
so as I mentioned the cat scan went fine.
Sami drank the contrast dye in grape Kool Aid in a purple cup with a purple straw. About 1/2 way through I think she got the idea that we wanted her to drink this more than she wanted to. We kept it stressfree as much as we could. Then after 3/4 we said ok and she went to sleep at 11pm.
Wednesday we picked her up out of bed at 5:45 and placed her warmly in the car seat. She woke up and I covered her with a blanket and pretended to sleep with her. It worked as she slept most of the ride. She woke up half way with a cough and vomit and announced she had to go potty which isn't easy on the journey we take. She slept the rest of the way.
Sign in and all went well. She didn't want to drink the contrast. We used the same drink and cup and she only took a slip and refused. We offered lots of rewards, but the treat of the nose tube got her to drink a bit. Then we offered a ballon. So when she got half way daddy went to get a purple ballon. She really wanted Dora Explorer, though daddy came back with Barbie. It had some purple but she didn't want it. I did get her drink a bit more then three quarters gain which was fine. Now on to IV. Well that was not fun with four sticks to get a good vien. She was not happy, but I promised it would be gone by the time she woke up and it was. The good news was after the scan they also did the heart echo so she didn't even know about that.
As usual, she slept and slept until we woke her at 11 or so. Drunk of coarse she couldn't walk so put her in the stroller to see everyone on 3 East, while it is 3 South really now. Sami wasn't up for visiting, but it was nice to see Jackie and all the nurses. We left pictures for those we missed.
I carried her most of the time at clinic she said she was sick and I took her to the bathroom. It is so much nicer than when she was small and would get sick all over both of us. But after that she was hungry and ate cookies.
It is so funny what she remembers of clinic and CHOP. The first thing in clinic she directed me to the Pharamcy across from day hospital for stickers. Then she directed Dan to the kitchen for cookies.
In clinic we had a brief visit with Alex, she was in for platlets. Remember we are helping Alex with her goal to have a lemonade stand in every stand June 12th to raise money for Neuroblastoma research. I'll post more details soon.
Then during her exam with Dr Don, she fell asleep in my arms and slept the whole way home (YEA!)
The good news is the dead tumor is the same size it has been and she(we)no longer needs to go through this stress. She has been transferred to the long term follow up oncology team. she will return in a year for blood tests and every other year for heart echo and ekg. That is it!
On a sad note, Dr Don is moving on as well. Taking a similar position at a hospital in Orlando. We told him we will make our appointment in FL next year.
The bad news is that I mentined that she complained about leg pain about a week ago and Don suggested a MIBG scan. Yes, another stress. The good news is that she doesn't have to drink anything. The bad thing is we have to return to CHOP on Wednesay March 31st for IV and injection of radioactive dye. Then return for IV, sediation and MIBG scan on Thursday the first of April.
I still think it is an over kill for toddler growing pains. But everyone thinks we should get it done to be sure. It has been more than a week and she has not complained about leg pain. We could always cancel. But for now I'm resolved for keeping the plan as it stands.
Let me know your opinions.
Sandy
Thursday, March 18, 2004 1:36 PM CST
NO MORE CATSCANS !
No, I'm not mad. Sami did great. Yes, it is stressful as you all know. But I find getting Sami to drink the contrast, the long drive to CHOP in the morning hoping she will sleep and not ask to eat, the IVs, and then once more getting her to drink the contrast dye STRESSFUL. I haven't even mentioned the results of the test.
See I know Sami is fine. So the results of the scan is the time for me to relax. Sami has dead tumor left in her abdomen. If you look back at the journal entries to September 6, 2001, you will read the horror we were in when the surgeon came out of the operation 5 hours into the 12 hour expected, to tell us he couldn't do any more without risking her life. As divesting as that was, we learned with time, her treatments killed that dead tumor. And not only that, the past 5 cat scans have shown that the dead tumor has continued to shrink to the point that unless you are the radiologist, you wouldn't even see it. It is so tiny Sami's oncologist can not see or feel it.
I'll update all the details soon.
Sandy
Monday, March 15, 2004 1:57 PM CST
Saturday Sami and I had fun. It was sunny, but windy which made the 34 degrees feel even colder.
We went to Daddy's store because Sami needed her play cell phone fixed. Our friend Scott was there so he helped out. We visited for awhile then left to get flowers.
I promised Sami, who is in a purple mood these days, that we would get flowers. We got purple and yellow panies.
Then we went to the book store. We read some books and bought 2 Dora the Explorer books.
Dora is the theme of her 4th birthday party this year. She can't wait.
We went the Cullen's: Eric, Lauren and Amanda for dinner at Ruby Tuesday's. It was great catching up. We haven't seen each other since before the holidays so we exchanged gifts.
Then we walked the mall and bumped into our next door neighbor's the Mitra's: Soem, Naz and Anjali (Kabir was with a friend). We parked in the same lot so Anjali came home with us.
By evening the swollen red nose that Dan had in the morning was to his cheek and left eye. I told him this looked like an infection and he was going to the doctor's in the morning.
Sunday Dan was even worse. We were at the doctors at 9:30 and he was given a 24 hour shot of anitbiotic for a rare deep skin infection. Apparently it is pretty serious. He was told to return Monday and if it wasn't better he was going to be admitted to the hospital for IV antibiotics.
He was feeling ok, except where the shot was given. We went to afriends in Flemington: the Hills: Jim and Sharon. They own a frame shop too and we borrow and share tools. Sami and I walked Main Street and came across a nice Brunch. The 3 of us ate and Sami of coarse made friends.
Then back home Dan slept the afternoon away. Sami and I planted flowers, and played outside. Still a bit cold, not as sunny but not as much wind so it was nice.
Monday was normal, well except Dan went to the doctor's. Instead of being admitted, he was given another shot and oral antibiotics. He is at work and dragging a bit, but that is what you do when you have your own business.
Tomorrow is the big day. Well it is the night that I'm worried about. I have to get Sami to drink the contrast dye in preparation for the Cat Scan on Wednesday.
Wish us luck.
Sandy
Friday, March 12, 2004 10:01 PM CST
Sami is doing well.
Sunday we drove to Maryland. We visited with my highschool friend who has a daughter Sami's age. They had lots of fun. Then on to grand dad York and granny Karan's house.
Monday was my (mommy's birthday). We celebrated with the Gray side of the family at the Wiley home. Sunday was John's 13th birthday so it was a big family affair. All 4 wiley Boys are home schooled. Well, Steven is in college now, but he was home till 3pm. David, Jordan and John were given a personal day to celebrate birthdays as Jordan was sick for his in January and David's is in 2 weeks.
Brooks is home from college so he and Aunt Diane came over for lunch and cake of coarse.
Speaking of Birthdays...Sami has one coming up herself. She can't wait. She has invited a few friends from school and anyone else she talks too, though mommy is going to have to limit it since our house isn't big enough for everyone. High on her list are the Wiley Boys of course.
Tuesday we ran around with grand dad and visited with my friend Michelle. She gave Sami lots of bags full of small toys and things. Thanks Mic she loves them. Especially the heart bead hanging thing. We need Seamus to come untangle it again...and the bear jewlry box.
Then back home....
Wednesday we were back and work and school. Sami had speech therapy and did great. It is just getting there that is stressful for mom and she cries the whole way (lucky it is only a 10 minute drive). Then we went back to school for a fun night of games.
Thursday was just normal with a Wegmans run for some food. Sami helped pick out her favorites, then went to the play room.
Friday was sunny, but windy and cold. Our friend's the Tryon's came for dinner. Sami and Annalee played wonderfully. Though Sami wasn't into sharing with brother Alex. We still have to work on sharing and understanding that the toy will still be here when they are gone.
Sami and Dan are asleep. It looks to be a fun weekend of visting. I'll update soon.
Tuesday, March 2, 2004 6:27 AM CST
Trying to finish up a project for work, I ran a bit late picking up Sami from school. Just as I was about to send the last email, I got a call from the school at 5:20.
Sami had a fever of 102. They gave her Tylenol and had her at the office. I ran off to get her, just 5 minutes away. While driving I called the doctor and got an appointment at 7:45.
Sami was quietly coloring and the director was amazed how well she sat and played with a fever. She obviously wasn't feeling well. Red cheeks and tears in her eyes, she told me she wasn't feeling well.
But everyone in the school has had this. A cough and high fevers. Last week there were days when I took Sami to school and there were only 6 kids out of 26 in class. I had hoped she would miss this one, but no such luck.
Doctor said her ears here clear, throat was good and lungs were clear. But the nose was all stuffed up. Just a bad head cold. Now I still say sinus infection since there was a fever. But no antibiotics prescribed. We try to dry the cold up and hope for the best.
In the meantime, Dan and I have caught this cold. Both of us are coughing and sore throats. Hopefully we won't get the fever.
Sami was good overnight, no fever as yet. She has to stay home today as the school has a rule that the kid is not allowed back until 24 hours fever free. But she is good. She'll watch movies and tv shows she never gets a chance to see will I work. May be stressful, but it is the advantage of working at home. Last night I put in a few hours to cover any down time holding Sami.
Sandy
Friday, February 27, 2004 10:48 AM CST
Sami's has a busy social calendar. Of coarse Dan and I work all day and Sami is at Children's Corner school from 9-5. It is a great place and Sami loves it. She has lots of friends and great teachers.
She is finally getting out of wearing the same two dresses every day (I'm tired of washing it every day). It has been 3 weeks. She got a hole in her tights on Tuesday and hasn't asked to wear a dress since. We were all very excited on Wednesday when she left her baby home from school (on purpose) for the first time since Christmas. We would all, including the teacher, love it if she would get out of the phase of taking the baby to school.
Monday was a nice to be at home in the evening after the busy weekend with the Wiley boys. Jack brought John and David up to visit. Sami has such fun ordering them around. It gave me time to read a book.
Tuesday we meet Lori and the twins: David and Gabriella for dinner at Fuddruckers. Wednesday was speech and Thursday Krista picked up Sami. Tonight we have hair cuts and tomorrow we hope to see baby Jamie Hittner, Nicole's new sister.
Well, this week's Speech Therapy did not go as well as last week. I guess she knew what it was about and wasn't in the mood. She wouldn't put her hearing aides on and she made me come in the room which they don't like. It is only a half hour session. I think it took 15 minutes to get her to put them on. Then she didn't want to talk. By the time she got warmed up, it was time to go and she didn't want to leave. GO FIGURE.
Hopefully she'll do better next week or I'll have to rethink spending all this money and aggravation.
Sunday Arlene is coming to watch Sami so Dan and I can go to a frame show in New York.
Sunday, February 15, 2004 9:46 AM CST
Well Sami did great with the Speech Therapist.
We arrive at 9am for school. After a bit of organizing where and who, I asked Sami to come with me to another room. I told her Nataile wanted to hear how well she wore her listening ears (hearing aids). She put them on with no trouble. She willing answered Nataile's questions. Surprising was able to finish 3 evaulations. But after about an hour she was getting tired of it all. We sent her back to class to have fun while I talked to Nataile. About 15 minutes later the teacher came to tell me that her ears hurt. One of the hearing aides was knocked off and was buzzing. She has had enough.
Sami came in as average. Which is what the school director had been telling me. And average does not give you support from the school system to give her therapy. So I have arranged with the Speech Theraptist to meet with Sami once a week.
The report I have always received from friends, family and the school has always been, we understand her and she hears us. But the problem is Sami is not hearing all sounds. And at this age, most kids can't pronounce all sounds. But those kids will learn generally without therapy. But Sami can't hear those sounds. So if she doesn't wear her hearing aides. She will not hear the sounds. Which is why she doesn't say them.
My news year resolution was to get Sami to wear her hearing aides 1 hour a day. We have done pretty well. Most day she will put them on. And generally for a few hours (because she forgets about them). But some days she wants knowing to do with them. I hope to get the school/teachers to help by teaching her when they have circle time (reading books) she wears her hearing aides. And when she is at therapy with Nataile, she wears them. My hope if eventually she will wear them all the time. And by the time she is in school is is normal for her to hear the sounds, say the sounds, and that she is just a normal kid.
As for the rest of the week, we are all fighting colds. Even Dan got this one. Nothing big, no fevers. Just running noses and sore throats in the morning.
Sami's god father Jason, and his family JoAnn, Joey and Justin came to visit Wednesday. We had a fun pizza party and opened presents since we had not seen them since before the holidays. Sami and Joey played great.
Friday I went for my first donation of platelets. The Aphersis process I have explained in the past. Platelets is what these kids get the most. And doners are NEEDED. Check my link on this page or call 1-800-262-5663
It is a commentment. And regular doners are most needed. The process takes about an hour and half. There is a new process where you only get one needle. The blood is rmoved, platlets are separated and bagged and the rest of your blood is returned. It is so neat that is is done with one needle. There are some side efforts due to calcium lost during the process, but they warn you and TUMS are great at resolving the cramps and tinkling quickly. I can't wait till I can go back. Platlets can be donated every 2 weeks if you iron is good. Though if you do blood donation at the same time you have to wait about 6 weeks. I did it all so I will wait till April to go again. It is a great feeling to know that my donation will help so many kids like Sami.
If you don't have time to sit for Platlet donation at the Red Cross, think about a regular blood donation which can be done at donation sites including business in your area.
Sandy
Sunday, February 8, 2004 9:05 PM CST
Just a normal week here. Sami was in school all week. Though after a few days of a dry nose, I noticed it starting to run again by mid week. Friday she woke up with a cough, but it seems like post nasal drip cough. I let here sleep in a bit and she was happy and ready for school. Seems like she gets stuffy at night. Not sure if it is the cold night air or alergies.
Today we went to check out the new Walmart in Whitehouse where the old LaneCo used to be. I still miss that store. I love Wegmans, but before that my favorite was Laneco. Sami seems to know when we go to Walmart we look at fish. She doesn't ask at another store. Generally we just look. But she really wanted a big gold fish. And it wasn't the normal ones that go in a bowl. It was the kind that need an aquiriam. So I figured a betta fish would be the next best thing. There was a beautiful blue one that she liked. He doesn't have a name yet. But check out the picture at the Walmart check out counter. It is hard to figure exactly where the fish is because of the Lion King sweat shirt Sami has on.
This after noon, Dan's friend John and his daughter Victoria came over for a visit. They exchanged presents tsince we had not seen them since the holidays. We missed you Milka and Jonathan ! Sami and Victoria played wonderfully. So much that they didn't want to leave to go eat. We went out for Chinese then to our store to do some framing of John's pictures. The kids were great. We got a lot of framing done. It was a lot of fun for all of us.
Sami has her speech evaulation at school tomorrow. Wish us luck. I need to get her to where her hearing aides at school at 9am on a MONDAY morning. Yea right. I'll let you know how it goes.
Sandy
Wednesday, January 28, 2004 8:08 PM CST
Another big snow...but only a delayed opening for Sami.
We did get in a quick snowman in before school. Sami had to run into the house and get carrot for the nose.
Her nursery school is more like a daycare and they try to be open as much as possible for people like myself who still have to work. It is hard being virtual. People think you can work all the time, but if you have a 3 year old at your feet you don't get anything done.
Well, we are planning our next trip to disney for April. The character breakfast and dinners are scheduled. We are all getting excited. This trip we plan to go to Sea World and Universal as well as Disney.
We are participating with another family with a fund raiser for Neuroblastoma research at CHOP. It is a great way to donate money and know exactly where all of it is going. The goal is to get a Lemonade Stand on June 12th in every state. Check out Alex's site for more details. http://www.alexslemonade.com/2004lemonadestands.php
Any one interested in helping let me or the Scott's know.
Thanks,
Sandy
Tuesday, January 20, 2004 10:31 PM CST
Last week was cold and snowy. With that Sami had a cold which happily gave to me...luckily Dan continues to be healthy.
Sunday in the snow we ventured out see Disney on Ice. Sami loved it. It was the 3 Jungle adventures: Jungle Book, Tarzan and Lion King. You all know that Tarzan was my favorite, but Lion King was Sami's.
She is into wearing Disney sweatshirts these days thanks to a sale at the Disney store, she now has the princess, tinker bell and simba (I think she is wearing that one tomorrow). But you never know what she will choose. Each morning is a surprise of the combination that she must pick herself. She continues to wear the cowboy boots that Shauna got her every day !
Looks like a normal week ahead.
Sandy
Thursday, January 15, 2004 11:09 AM CST
Sami's first official snow day!
All public and daycare are closed today. Last night we got about 6-8 inches of snow and the temperatures are a frigid 0 degrees. With the wind chill they are calling for -20 to -40 below zero tonight and that is Fahrenheit not Celsius!
Sami has a cold, but what else is new.
She is playing inside and having a blast.
Sandy
Friday, January 9, 2004 10:51 PM CST
Well, is everyone back to the weekly routine after the holidays?
We are still doing visiting as sickness made us cancel and delay some dates.
Saturday we had Christmas Eve at the Salerno's. We missed the real thing because Sami had a fever. It was loads of fun and lots of presents. It is our second home.
Sunday we went to the Doctor's. Check out the pictures.
We are trying to get back into a routine. Sami still doesn't want to go to bed at night, and mornings are generally tough to get her up, but we had some help this week. My next door neighbor and Sami's best friend Kabir (4th grade) came over at 8am to wait with us until his bus comes at 8:45. It helped his mom, so she could get to work on time. But it helped us even more, because when Sami hears that Kabir is here, she gets up and dresses and walks to the bus stop with him. It was great. Except for the one morning that we didn't hear him at the door and he went to another neighbors. And I needed him that morning more than ever. That was Wednesday.
Wednesday Sami had a Dentist appointment. I had to give her a happy pill so she would be cooperative with the Dentist. We didn't start off well. She did not want to get up, she did not want to go potty, she didn't want to get dressed and she didn't want to brush her teeth...but I crushed a pill in a small half fulled cup of water and somehow I got her to drink it. Some of the pill was left in the bottom so I was nervous that she didn't get it all, so I added more water, but she wouldn't drink it. After some disagreements over getting dressed, I put her in her room to think about it. She came out 10-15 minutes later, she was in a good mood, ready to go potty and more agreeable. I could see the drunk affects of the pill. She went potty, got dressed, I brushed her teeth, she finished the water. By this time she was falling down but wanting to still push her baby in her stroller...heading for the steps I could see I was in for trouble. I had to support her under her arms. I'm all too familiar with this drunk state from all her ct sediations.
She was unusally hungry which is unlike her to eat in the morning. Must have been the drug. I had a banana out incase she wouldn't drink the water with the pill. I was going to put the pill in the banana and hope she didn't notice. Well, I wasn't sure if I should still put it in or not. A quick call to Dan and he confirmed not to give her any more. She ate the whole banana. Now I was worried that she would vomit in the car while I drove her a half hour to the Dentist. I kept thinking I should have brought a change of cloths and wondering how I was going to clean up that beautiful, new pink fake fur coat that Aunt Arlene just got her. She wears it every day along with the new cowboy boots she got from our friends at the farm...thanks Shauna. The whole school is talking about these boots that she has to wear every day. OH, and Dan and I have to wear our boots every day as well.
Well, after a hundred questions of where we were going we made it to the office in Flanders. She didn't want to go into the little rooms. It isn't doctors so much that she is afraid of, she just doesn't like the small rooms. I think waiting in clinic and staying in hospital rooms has had a real impression on her. But somehow Lisa got her to sit on my lap and get her teeth cleaned. It was the wait for Dr. D. that was the hardest. I was getting nervous what was going to happen.
Sami had one cavity that he wanted to fill and there are 3 others that he is watching for now. Not bad considering all that she and her teeth went through. You have to remember, she got most of her teeth while getting chemo. We had no schedule to brush, she vomitted all the time...
I have seen an improvement since I have pushed the brushing every morning and night. It has been over a year now that she has been on a regular schedule. Hopefully we can maintain if not reverse some of the damage.
But she was good, they put a mask like thing over her nose with oxygen and probably laughing gas or something I don't know. She cried in protest not pain, but held my hands. The cavity was filled in 5 minutes and she was out of there.
She wanted McDonalds on the way home but Dr. D. said nothing hard till dinner so I didn't want to push it. I opted to go home and make pasta, but she was not happy. But she ate it and more and more. She watched movies the rest of the afternoon. I offered to take her to McDonalds for dinner but she decised that ice cream would be better.
Thursday she returned to school under small protest but with Kabir's help she got up great. When we got to the door her friend Cassidy came right and up and said she missed her yesterday. After that I was out of there.
Friday Sami forgot her baby. For those that don't know, with the money she got from friends and family, Sami went shopping. We bought a princess scooter with the money from the Slacks (thanks Patty, Roger, Lee, Chris, Holly and Andrew). She had to go to 4 stores to find the right baby. Her name is Emily. Thanks Mary Lou and Jim ! Aunt Arlene came that night to take her shopping as well. Sami told Aunt Arlene she needed a stroller for Emily because she was too big for the umbrella strollers we have. We found one, and then went on to shop for the coat I mentioned earlier.
So back to the baby at school today that we forgot. She wanted the baby to sleep with at nap time. So I promised I would come back at lunch time, bring her baby and eat with her. The teacher asked me to read a story before nap time. It was all great fun. And the best thing is that she let me leave and she took a nap. I wasn't sure how that was going to work.
Tonight Big Big Na (thanks Naz) our next door neighbor (Kabir's mom) made us a wonder chicken and rice dinner. After dinner, daddy, mommy and sami watched movies in our new play room in the basement. It isn't done yet, but the tv is set up and some toys that she hasn't played with in awhile are around. It was relaxing. Now Dan and Sami are in bed. I should go too.
Please right in the guest book, we love to see the messages.
Sandy
Tuesday, December 30, 2003 8:48 PM CST
We had a wonderful day together.
We packed up the car with TOYS and headed to CHOP to play Santa.
Our free sitting fee with toy promotion went well. We had about 40 families come for portraits. Not bad for our first year. Most families brought at least one toy. And some people just brought toys just to donate to the cause.
It was great seeing all the nurses, doctors and staff at the clinic and hospital.
Monday, December 22, 2003 9:17 PM CST
This month has been full of sickness for lots of people. Sami and I have skated past the real serious stuff, yet it has still set us back and made us cancel several play dates and holiday plans.
First it was the week of vomitting and diaherria for Sami. Then the flu (or something for me). And now Sami has a sinus infection. After a weekend of low grade fevers and only a stuffy nose, I took her to the doctors to confirm she needed antibotics for a sinus infection. Ears and chest are fine which was great since so many of our friends have upper respitorary infections.
Hopefully Sami will be able to go to school tomorrow to give gifts to her teachers. It is the last day until Jan 5th.
On the good news we have spent 3 weeks snugglying and being close. Daddy on the other hand has been hard at work keeping the store running. Most days working 10-16 hours. Yesterday was his first day off since before Thanksgiving. Somehow he has stayed healthy.
Please sign in and let us know you have checked in. Sorry Dan has been too busy to load new pictures. Hopefully we can get back to normal soon.
Wishing everyone a wonderful holiday !
Love, Sandy
Friday, December 12, 2003 5:29 PM CST
Sami is doing great today.
She started eating yesterday. We made the first trip out of the house in a week.
She meet Santa at daddy's store. We will post pictures soon.
Sandy
Monday, December 8, 2003 5:19 PM CST
Sami is not feeling well. It is really hard to see her so lifeless.
She appears to have the flu. Started Sunday morning with vomitting and diahearria. I thought it was a 24 hour thing and she would be better today, but she seems even worse. Slept most of the day...
Hopefully she will be back to normal tomorrow, but I have a feeling this is going to last a few days.
Sandy
Friday, December 5, 2003 9:30 AM CST
It is snowing....
Check out Dec 5, 2002 (last year) and you will see we had a similiar Nor-Easter snow storm.
Today we expect 3-6 inches of snow with about 6 more inches expected tomorrow.
Everyone is very excited.
Sandy
Wednesday, December 3, 2003 10:33 PM CST
Nothing new here. Busy of coarse.
Sami has a running nose but nothing new about that. Though last Monday and Tuesday it seemed to stop after more than a month. I had even made an appointment to see the doctor on Tuesday and I cancelled because she was finially better. But that was short lived, Wednesday it was back again.
Though we are pretty much back to 10pm bedtime (from the 11) it is still sometimes 10:30 before she is asleep. Mornings are still hard, yet getting up is alittle easier but not great. She even got up on her own on Tuesday at 7:30. Boy where they surprised when she arrived early to school. It was a fluke because Wednesday was back to 8:30. I try to wake her between 8-8:15, but I sometimes get busy with work and loose track of time.
Last Sunday Dan and I took Sami, and her friend Kevin and his parents to the movies to see Brother Bear.
This past Tuesday I picked up Sami early from school and our neighbors Anjali and Kabir to see Cat in the Hat.
We are getting ready for the holidays. Sami loves riding in the car at night looking at all the lights.
And don't forget to sign in and let us know that you still check in on Sami. We enjoy reading the entries.
Thanks,
Sandy
Wednesday, November 26, 2003 10:36 PM CST
Happy Thanksgiving to ALL !
Dan and I are thankful to have Sami with us. Just 2 years ago today, Sami came home from the hospital from her first transplant.
After 5 rounds of chemo and surgery, Sami entered the hospital for the unknown outcome of transplant on Halloween. Though it was not easy, Sami recovered in record time and was discharged on Thanksgiving day.
Sami's sitter Liz brought us Turkey dinner and we sat with Sami on the family room floor watching the dog show in shock that we were home.
It has been a long time since the vomiting every hour, diharrea and morphine withdraws. Sami doesn't remember which is fine with us. But Dan and I remember oh to well.
We are very thankful that Sami survivored this terrible disease. And we hope that all the other kids with Cancer can survive it as well.
Happy Thanksgiving !
Wednesday, November 19, 2003 1:32 PM CST
Hi everyone Sami here,
Wow what a week I had. My Mommy and Daddy took me on the best trip to Disney World. We flew down and I had lots for fun making new friends at the airport waiting for our plane. And when we got to Florida we had a Blue van to drive around in. It was so exciting. Flordia was hot. We got to wear shorts every day.
The next day we got up early and went out for breakfast. Mickey was the chef and Mini, Goofy, Chip and Dale were his helpers. I got to run around and play with them while I ate. After that we went to see Cinderellas Castle. It was so beautiful. We got to go on some cool rides and then My Mommy had a surprise for me. My buddy Zachary and Kyle were in Disneys Magic Kingdom too. We had a blast going on rides together and playing. It was so much fun. Then my mom, dad and I had dinner in a Castle. I could not believe I ate in Cinderellas house. Afterwards there was this great fire works display.
I dont know if I can remember everything that went on, but here is some of what I remember. My dad took about 1200 pictures if you want to come and see the events as they occurred.
We went on rides, played, ate some neat food, went on rides, played some more in the Dino pit (digging for bones in the sand) and went on rides, and saw lots of cool friends like Mickey and Mini, and went on rides. I was even talk enough to get on a kids roller coaster. Though it was more like an adult ride so my mom held on to me tight.
Some other highlights include
celebrating Zachary's 4th birtday at the Polynesian Breakfast (and seeing all my disney pals)
the electric parade at Magic Kingdom where we sat right in front of Cinderellas Castle with the Doctor family. They were the best seats in the place for the parade and the fireworks after.
The jungle safari at Animal Kingdom. I said with Zachary, Kyle and their mom, Dana.
Tarzan Rocks, Pohantos and Lion King shows at Animal Kingdom.
Fireworks at Epcot and shopping with mom to get matching purple shirts for all 3 of us
Space ship earth at Epcot with dad, Dana and Zachary (though I was a little scared of the dark after that last ride my mom took me on with the dinosaurs)
MGM was cool. I got a chance to meet Lilo and Stitch. I saw all my friends in a parade (including Mary Poppins). Mom and Dad bought me a sericel of Tinkerbell and the artists were there to sign it. They say they are going to frame it real nice for my room.
We also visted my mom's family friends: Aunt Betty and Uncle Dick. It was so nice to meet them. They live in Port Charlotte, FL right on the water. I called them Grandma and PopPop.
The end of our trip was a dinner at California Grill. Mom timed it so we could watch the Magic Kingdom fireworks from our table. It was great.
I really love visiting Mickeys house did not want to leave it so I look forward to visiting it again. I think I hear mom say we are going back in April.
OH, and people keep asking if we stayed at Give Kids the World. No we did not. This was not my make a wish yet. I dont quite under the wish stuff yet, so they said I could wait till Im ready to choose what I want.
Monday, November 10, 2003 6:18 AM CST
Just home from a wonderful week vacation in Disney.
We will post an update and photos this week.
Sandy
Friday, October 24, 2003 8:15 PM CDT
Well, fall is here. The heat is on. The cars have frost in the morning and Sami has given us all colds.
It has been hard getting Sami up for school in the mornings the last couple of weeks. So I started, 8pm bath or at least 9pm pjs and 10pm lights out. Not working that great. If anything, she seems to frustrate us so much that we give up and she is up later than ever. Though we continue to wake her at 8am, she doesn't go to sleep any earlier. Some say the weather. And that could be it. We hope to get some relief when the time changes this weekend.
Dan is doing great with the store. He is doing alot of film processing, digit scanning and printing and lately a big run on exostic framing. He has sold a couple of cameras and has alot of people interested with the holidays approaching. We are starting to get some portraits booked, though we had our first cancellation tonight which was disappointing.
We have a campaign running for the next two months if the customer brings in a toy we will waive the $25 sitting fee and donate all toys to CHOP. Great response so far. We will keep you posted on the details.
I am still working one day a week at the store(currently Thursdays) though my business driven leave is about to end this month.
I'll get Dan to post new pictures soon.
Sandy
Saturday, October 11, 2003 7:20 PM CDT
THANKS to all those that could make it to the Grand Opening of Gray's Family Foto today.
Dan, Sami and I all wore red shirts, black pants and had faces painted with flowers (yes even daddy at sami's request).
We hope you had a good time:
Grand Dad Bud and Granny Karan; Arlene; Naz, Kabir and Angali; John, Milka, Victoria and Jonathan; Craig, Donna, Chas, Ashley and Josh (Mark's family); Betty, Shauna and baby Kaylee; Kathy and Brianna; Dave, Pat and Kevin; Jason, Joann, Joey and Justin; Carol and Charlene; John, Cheri, Emily and John; Bob and Linda; Dave, Lori, Gabrella and David, Dave and Bryne; Vickey; Lauren and Amanda; and Grand Dad Jack.
We appreicate your support !
We will post pictures soon.
Sandy
Friday, October 10, 2003 6:39 AM CDT
Sorry we haven't posted much lately. We have been busy getting the store ready for our official opening.
Grand Opening of Gray's Family Foto is Saturday, Oct 11 from 11-3.
We will have a clown, face painter and lots of food.
We hope you can stop by and see us.
Sandy and Dan
Gray's Family Foto
411 Route 206
Hillsborough, NJ 08844
908-359-5590
Friday, September 26, 2003 10:17 PM CDT
A busy first week for Gray's Family Foto. Dan is working fulltime Monday thru Saturday 9:30-7 (5 on Sat). I'm working on Thursdays and when I can. Our friend Laurie is working partime and a full time person is starting Oct 1.
Business is great. The people are friendly and welcoming us. We are cleaning, throwing out and setting up equipment. It is great fun.
Sami loves to play with the register. She pretends to take my film and money and gives me change. We are taking a camera tomorrow to take pictures of her so we can post some.
This past Wednesday Sami and I went to our friend's the Grimaldi's. Sami played with 4 and a half year old twins, Gabriella and David. They had great fun eating pizza and ice cream, playing dress up, games, and more.
Thursday morning Sami smashed her finger in the bifold doors. Which didn't start off the morning so well. I put a bandaid on it at her request, but it wasn't such a good idea because as the day went on the swelling came out the top of the bandaid and cut of celicuation. I took it off when I came home but I was worried because it was so purple. Today it was very bruised, but looking better.
After school on Thursday, Krista picked up Sami in her new VW Cabrio. They had a great time at the mall and playing outside. Though Sami forgot to ask her to put the top down.
Friday Sami and I went shopping for pumkins to put in the yard. The bad thing is she decided to put the window down on the way home and held the pumkin out the window and it was lost. She is very disappointed. I guess we have to go hunting for more this weekend.
Aunt Arlene is coming tomorrow to see the new store. Grand dad Jack is coming up for the weekend. Sami can't wait. We hope to go on a hay ride for pumkins on Sunday.
Sandy
Monday, September 22, 2003 7:59 AM CDT
Another great weekend together.
Well, Daddy had to work on Saturday. But Sami and I played around. After a leisurely breakfast, we went to the bank where Sami helped others count their coins in the Penny Arcade. Next time I have to bring her bank. We got bank checks for the closing of the new store and money for the cash register to open on Monday as Gray's Family Foto. Grand Opening is scheduled for Oct 11th. Please come!
Then Sami and I went to Anjali's soccer game. They are a winning team for the first time in 4 years. And as a bonus we saw Jesse and Emily playing on next the field. Sami had fun.
Then off to lunch outside at a hot dog stand in the neighborhood. They sell corn and fresh vegs from the garden. And they had lots of chickens so we sat and watched them.
Then off to the book store. Sami picked out some new books and books on tape. We had great fun reading there and in the car.
Then off to Gray's Family Foto where daddy was working. We helped out, cleaned and planned how to set up our new store. It is currently a mini lab, fine are, custom framing and studio photography. We will be cutting down the art inventory and moving things around to add cameras and digital printers and supplies.
Then off to dinner. There is a 2 year old in Hillsborough with Neuroblastoma just like Sami. The police were having a spagetti dinner to raise money. We came to support the funds as well as show the parents and interested people that you can survive this horrible disease. Please check in on Maddie and give her family hope.
www.patmedia.net/benoff
Sunday Dan had some work to do for the store. Sami and had some fun shopping and playing with Kevin. Dan made a wonderful dinner that we took to our friend's Jason, Joann, Joey and new baby Justin's house. Sami had lots of fun with Joey. The baby is adorable of coarse and soooo good. check him out at www.caringbridge.com/nj/babykilyk
Back to work and school for the gray's on Monday. Looks like a pretty normal week.
I spoke to a few people intersted in information about childhood cancer and neuroblastoma. Here are the links I promised.
http://www.acor.org
http://www.rare-cancer.org/ped/faces.html
Also, know someone that is sick? having a baby? tell them about Caringbridge. You don't have to have cancer to get a free website. Link about caringbridge to learn more.
Sandy
Friday, September 19, 2003 8:18 PM CDT
OK, so Tuesday night was the stresser for us. How do we get Sami to take the contrast?
Unplanned, Sami played with Kevin down the street. That turned into dinner at their house. Now how to I get her home to drink the contrast and go to bed. So we talked to Kevin's mom Pat and we decised that I'd go home get juice and contrast and get Kevin to drink the same juice and maybe Sami would drink hers. Well it didn't work. Sami took one sip and said she didn't like it. Kevin added that he didn't like it either and he didn't have the contrast. It was just apple juice! But then
sami wouldn't drink it. Too late kid, the contrast is in and you have to. AFter about 20 minutes, only about an ounce was gone. I took her home and explained that he had to drink it for her test. AFter about an hour we gave up. I think she drank about 3/4 of it. But it was hard to tell because I kept adding ice. Worried, but nothing I could do. She finally feel asleep about 11. I package for CHOP, extract cloths, hide snacks (because she can't eat till after the test) pictures for the nurses etc... I think I got to sleep about 1am.
The alarm went off at 5:15 and I was in the shower immediately. By 5:50 I was dressed. Dan had made our lunches and packed the car. I picked Sami up out of bed, put her on the potty and then in the car. She slept till we got about 20 minutes from CHOP. We got a great parking spot in the Wood Building lot. Then walked across the bridge to the hospital. We checked in and everything went smoothly.
Then we learned that Helen wasn't there. She was teaching a class. Our nurse was nice, she did Sami's vitals and got the contrast ready. Alex, was I suppose to the have lemonade cold? I brought lemonade, it was warm, the contrast foamed up and was a deep yellow like juice. She took one sip and said she didn't like it. She wanted it in her box that the lemonade came in. AFter 20 minutes and about 2 oz they decised to put an ng tube in. Though the nurse couldn't get it in right and after 20 minutes of fighting they took it out. I would have had the juice in the tube because you knew it was past her stomach.
At this point Sami was mad. I told her if she didn't drink it all quickly they were going to come back and try to put the tube in her nose again. It was hard, but I got her to drink it. Well, all that was in the cup. I think there were another 3 oz in another cup, but that was all I was going to do.
We talked about taking pictures and she was all set to go AWAKE. Then she saw the cat scan and freaked out. So back to sediation. She went out quick and they didn't have to use very much meds. Back to cat scan for Sami. It is now 11am. Her scan was scheduled for 8:30.
I went to the new wing for 3 EAST, now called...3 South (I think). It was a bit strange. But nice, new and clean. GLAD we will never spend the night there though!
Everyone missed seeing Sami, but I handed out pictures.
But the time she woke and I got her to clinic it was 12:30. Triage and blood draw went quick. We waited abit for Don...now an attending so we didn't have to wait to see anyone else.
In the car at 1:30...we rushed off to the new store making record time. No Sami didn't sleep. Who says kids nap in cars? Mine doesn't.
Dan and I were closing on the loan at 2pm (needless to say I was late) for the purchase of 1st Stop Photo soon to be Gray's Family Foto.
We close on the business on Monday. mark your calendars, Oct 11th for a party and grand opening.
Sandy
Wednesday, September 17, 2003 3:47 PM CDT
The Cat Scan was fine, but as expected getting Sami to drink the contrast was a nightmare.
I'll post more later.
THANKS PAULA for the great Harry Potter presents. It was waiting for us when we got home. Sami loved opening everything and had to put the movie on right away. She is downstairs right now laying on the pillow with the Harry Potter pillow case and cover....
she is calling me I must go. I'll add more later.
Sandy
Monday, September 15, 2003 7:28 PM CDT
Sami is doing well....though we have noticed a runny nose. Not sure if she has a cold or just allergies. Welcome to nursery school!
With Sami's emmunities distroyed during transplant, it is like starting all over with all the viruses and colds. And she wants to get them all in her first month of school.
As for school, Sami is doing great. She goes into her class and plays right away. Dan even said last week that she wanted to play with the rice (like a sand box) but the teacher wanted her to paint. Sami wasn't interested. She has her own idea of when to do things.
Sami continues to take a nap on her barbie sleeping bag and pillow. Only problem is that she makes me take it home each day. All the other kids leave them there and take them home on Firdays.
Sami has a routine cat scan on Wednesday at CHOP. Dan and I are stressing over getting her to take the contrast tomorrow night. Can't wait till it is all over. I'll let you know how it goes.
Sandy
Thursday, September 11, 2003 10:40 PM CDT
Sami came home from school early yesterday with a stomach virus. Seems like one thing after another. Welcome to daycare!
We hung out together. She took a bath (but got sick) so we watching movies, ate crackers and drank water (but she got sick). I limited the crackers,pushed the water and by 4:30 she seems fine. Though she didn't eat much the rest of the day. Mostly drank water and ate ice pops.
Our friends from Make A Wish came to visit tonight. Thanks for the gifts Felisha and Vickie ! Sami loved the princess stage and Belle barbie-style doll.
We will continue to wait until Sami tells us what SHE wants. We think a cruise and land package from Disney would be nice. But even that we will wait till she is older so she can remember and enjoy every minute.
Thursday I was off and I monitored Sami's stomach issues. She had no problems with toast. After about an hour I thought she could go to school. Though she wasn't too modivated to go anywhere. She wasn't sick, she just wanted to play with mommy. We put make up on one another and took a walk ot the bus stop to meet the kindergardeners in the neighborhood. Sami would love to go to school on the bus. That is until she actually has to do it and leave mommy. By 11am it wasn't worth taking her to school. Instead I took her to Dan's new store. It isn't offically ours yet, though he has the keys and is working (and still being trained) like it his. Hopefully next week we can finalize the paperwork.
Today was baby Kaylee's 1st Birthday. Krista came over after school and she followed me to Sami school to learn how to get there. On Thursdays this month, Krista will be picking Sami up at school while I work with Dan at the store. After that we drove to the farm.
Sami played with baby Kaylee, we visited the horses, played with the dogs and Sami's favorite opened presents. Family and friends came to dinner and had cake. Sami had lots of fun with Nicole and Kaylee.
Sami went to school on Friday without any problems. After school I took her to Alyssa's 5th birthday party at Romp Around. The bigger kids were more experience than Sami. She did better when I went in the tubes with her (oh my knees).
It is a rainy Saturday. Sami and I laid around all morning eating breakfast and lunch in bed and watching Barbie and Shrek. Then we went shopping for Barbie tops. Sami has barbie pjs but we finally found a top in her size. We bought 3. I'm getting wise to her wanting to wear something 2 days in a row (and sleep in it). When she gets hooked on something it lasts few days.
She can go from Thomas the Tank Engine to Barbie, then Bob the Builder and right back to Disney Princess. She has a shirt for them all now.
Next Wednesday is Sami's 6 month clinic check up and cat scan. Not looking forward to getting her to drink the contrast dye the night before. Thanks for the suggestion of Lemonade, Liz. That is our plan. Partically because Alex told us last time it was good and Partly because it is her favorite juice box drink. We are just trying to figure out how to get right amount of juice and contrast in the little juice box so she doesn't know that it is different.
Thanks,
Sandy
Tuesday, September 9, 2003 10:49 PM CDT
Sami is doing great. 2 more days of meds and she can't wait. This stuff tastes terrible. M&Ms are the only way to get her to take it. Sorry Mary Poppins the spoon full of sugar wasn't enough.
Sami started school full time (M-F 9-5) at Children's Corner here in Bridgewater. It is a great nursery school with very tenured teachers. Not like most where the teacher changes even during the school year.
yes, the schedule is based on a school year where it starts in Sept and ends in June. July is camp which you will remember that is how Sami got started 3 day a week for 1/2 a day.
Now the teachers till me it is like she has always been there. Actually even the 3 day of camp they were telling me that she caught on to the routine and rules very well.
There really wasn't any adjustment for full day. She was going to daycare full day anyway. The few day she wasn't sure if she wanted to go in, but with the other new kids crying, and the confusion of where to put everything etc... she went in without a tear. Though daddy did see her eyes well up and get red. The second day was better and now she tells us she wants to go to school and which car and who she wants to take her. It is still a drop and go. Meaning not to hang around or she won't want you to go.
September is circle month. They are learning about their surrounding, setting up routines (potty, snack, storytime, playtime and nap time). YES, Sami is taking a nap. Of coarse with her new Barbie sleeping bag from Angali and Barbie pillow case, on a cot, with all your friends, who won't sleep from 1-3.
On her first day, Sept 3rd, I actually picked her up early so she didn't take a nap at school. We rode to South Jersey to see Grand dad Jack and have dinner with his sisters. Sami had a blast with Danielle and John, playing the drums.
On her second day, Thursday Sept 4th, Sami had a follow up at the doctors so I picked her up at 3pm. I actually had to wake her up. She was sound asleep. If they would have just told me I would not have believed it.
On her third day, Friday, Sept 5th, Sami stayed all day. It was great, though I missed her.
After work and dinner, we packed up the car and heading to Baltimore to visit family. The first time since Christmas.
Sami woke Saturday mornng at Granny Karan and Grand dad Bud's house. We went to watch Jordan and David play baseball. Afterwards we had a cook out at the Wiley's house and a cold swim at their grand parents Jim and Mary Lou's house. Sami stayed with the Wiley's for pizza dinner while mommy and daddy went out for crabs and shrimp.
Sunday we hung around grand dad Bud's. Friends Carol and Charlene came to visit. We went to dinner at Applebee's then headed home for the 3 hour drive. Sami was asleep 10 minutes into the ride (unusal, but nice)
Then the full week began on Monday. I was missing her by 11:30. but she continues to do great.
Tuesday we meet up with David and Gabriella at McDonalds. Lori and I caught up a bit between kid interuptions. We hope to do it more often now that they are so close.
Wednesday we are expecting a vist from Make A Wish.
Thursday is Baby Kaylee's 1st Birthday.
Friday is Alyssa birthday party.
Enjoy the new pictures.
Monday, September 1, 2003 10:25 PM CDT
Hi Everyone,
Well Sunday night was a rough night for Sami. She had a very bad cough all night and Sandy gave her the nebulizer treatments at 1, 5 and then at 9 in the morning with no positive response. Once she got up and saw Tom, Sue and Michelle waiting for her she perked up a little as Dad was making Samis favorite pancakes. We knew she was not her self since did not eat any and when everyone was done Sami just wanted Mom. Sandy called the family doctor who had seen Sami Thursday and Sunday, she said to take her to the ER. Tom, Sue and Michelle were great making it a bit easier for us to pack and get off to CHOP.
We called Nicole the nurse on call and told her what was up with Sami ( she remember Sami) she said she would call the ER and let them know we were on the way in.
Sami was asleep the entire ride to CHOP (that is about 90 minutes) which is very unusal.
When we got there they took Sami right away to a private waiting room till a bed was ready and then I think 3 doctors looked at her and felt that this was in her throat not her lungs. They asked if we wanted an x-ray and said we were not sure, I think they could feel we wanted it but was not sure if we wanted to put Sami through it so they order it.
She was so good with all the nurses and doctors. As one of the docs was getting ready to examine her she asked for : Chicken nuggets, french fries, coke and a toy please, that was a good sign so Dad went to McDonalds to get her what she wanted.
When she went in for the x-ray she was so good she even smile as the tech was taking the x-ray, since we said to her that he was taking her picture. The x-rays turned out very good, no problems in her lungs. That was such a brick off our chest.
The Docs came back and said that Sami had the Croup. They gave her a nebulizer treatment with a steroid and gave us a new antibiotic prescription that she needs to take 3 times a day for 10 days. Not what we wanted to hear since Sami does not like to take oral meds. We were in and out of the ER in 2 hrs. I think that must have been a record.
Samis voice sounds a bit scratchy and you can tell she is not quite up to her full energy but you know she is fighting it and getting better.
We stopped off to pay a quick visit to the nurses on 3 East to say hi and let them see Sami. She had impressed them with how she has grown and turned into a little girl. Not the baby they remember when she came in when she was only 13 months old.
Then we stopped for dinner at Jillians and let her pretend she was playing the games (she doesnt know that we didnt put money in). Then we walked about Franklin Mills Mall before heading home.
It is 11 pm and our little night owl just fell asleep.
Dan
Sunday, August 31, 2003 8:08 PM CDT
So how is Sami is what I have been hearing.
Well, Thursday Sami went to the doctors and we found that she had a double ear infection. Antibiotics and back to day care. Saturday coughs were worse so Sunday back to doctors with Bronchitis.
Saturday we went to breakfast with Sami's friends and families: Annalee and Kira. It was great to see Angie, Steve and Kira since they have been living in Arizona for 2 years. Marie, Jeff, Annlee and Alex were great fun. We took lots of pictures and Dan will post some soon.
Saturday afternoon we received our guests from Syracuse: Tom, Sue and Michelle. Sami has enjoyed all the attention. We took a drive to Hillsborough to show them the new store. More to come shortly. Then we went to dinner at Famous Daves, though Sami wanted to go to Applebees. We shopped at the mall and bought new tinker bell panties and went home to watch the new Lilo and Stitch movie.
Sunday as I mentioned we went to the doctors. Then we meet, Daddy, Tom, Sue and Michelle at Wegmans to get Sami's prescription for an Nebulizer treatments and dinner.
At home we ate lunch outside under out new awing on the deck. The weather was prefect, no humidity and about 80. MY weather. It was a quite a surprise as it has been so humid lately.
We took a ride to New Hope area. We stopped in at Washington's Crossing and walked the beautiful grounds, we drove along the Delaware River and stopped in a Sand Castle Winery. After some wine tasting we headed back home for a wonderful sea bass and steak dinner. Great grilling Dan.
Sue, Michelle and I took a walk as Sami showed up around the neighborhood on her bike. Then dessert and we are trying to get Sami ready to bed.
I'm sure Sami is on the mend.
Sandy
Thursday, August 28, 2003 1:19 AM CDT
Just a quick note to say that Sami is sick. Her first real illness other than colds.
Everyone at daycare came down with fevers at the same time on Tuesday. After a dose of tylenol she was fine. Laid around a bit and watched tv. About 5am another fever, motrin and fine. So I took her back to daycare. She cried and complained of stomach pain all day, but no fever. I picked her up about 3, gave her some motrin and she slept for 2 hours. When she woke up she told me she was hungry and smiled. I knew she was fine then. I gave her some tylenol. After eating, watching some tv, playing with Buttercup, almost exactly 3 hours after tylenol her stomach hurt again. Now a dose of motrin and fine. She didn't go to sleep until 11:30pm.
I plan to call the doctor again tomorrow to figure out what this is. Some are saying fifths and others have been diagnosed with strep.
Anyway, all plans for our visits this week have been called off.
I'll update tomorrow.
in the meantime, check out the pictures dan posted yesterday.
Tuesday, August 26, 2003 12:06 AM CDT
Busy, busy as the summer comes to a close.
Sami is really maturing. You can tell that she is becoming a reasonable 3 and half year old. Sure there are those times that she isn't ready to leave, but we are finding ways and routines that help her understand what needs to be done.
Sami is very loving and caring. A joy to have around.
This past weekend Sami had her first overnight, away from home and away from mom and dad. Dan and I had a wedding to shoot on Friday. Naz and family (really Angeli and Amy) watched Sami all afternoon, evening, slept together and breakfast in the morning. Yes, there were a few times when she got tired that she wanted mommy, but all went well. Thanks girls.
Saturday we went to a party with some neighbors to visit an old neighbors new house. IT was great fun.
Sunday we went to the Jersey Shore to visit Sami's friend Kevin. During the summer Kevin is at his grandmother's house most of the time so we haven't had much play time. Kevin showed us around, had lunch, took us to the beach, Sami played in the Atlantic Ocean, ate ice cream, played in the sand, took a boat ride, ate dinner and played and played. She had fun with grand ma, grand dad, Pat, Dave, Jerry, Susie and Kevin of coarse. Though she didn't want to go home. She cried for 20 minutes before falling asleep about 9:30. Traffic was heavy so the hour and half ride took more like 2 hours.
This coming week we have Make A Wish coming on Wednesday, a visit with Annalee and Kira on Thursday, Krista on Friday and the LeRoy's coming for the holiday weekend.
We are planning a short trip to Baltimore for the beginning of the week. Anyone interested in getting together let us know. It is our first trip since Christmas and probably will be our last till then.
Weekend trips have been hard with Dan working on Saturdays. Starting next week it will be more rewarding as the store he will be working will be his own.
After many years of operating our own photography studio from our home, we will be moving it all and more to a retail operation in Hillsborough. More to come as the plans get finalized.
Sandy
Thursday, August 7, 2003 1:17 AM CDT
Sami is doing great, and enjoying all the attention from our guests.
In July she has enjoyed weekend visits from Granny Karan and Grand Dad Bud, Aunt Arlene, Aunt Diane and cousin Angela, Angela again with boyfriend Bill, Grand Dad Jack, Aunt Dottie, Uncle Bob, David, Jordan and John. shuu... It has been busy.
In addition we have had play dates with Rose and her family Nicole and Lauren, Great Adventure with Zachary and the Doctor family, Swim dates with Catie and the Fisher family, dinner dates with Krista, pizza picnic with Kevin, play dates with Alyssa, block party with the neighborhood kids, birthday parties and more.
In August Sami will be spending Mondays with Mommy and Tuesday - Friday at Boci's home. Sami has great fun there with Alyssa, baby Emma, Mikey, Carly, Julian, and more.
Today Sami went to get new molds for her hearing aids. Due to her size and grow, she periodically needs to get new molds. Because Dan had to work unexpectly and he had planned to spend the day with her and take her to Princeton for the new molds, instead he took her to work. Rob's daughter Susan came to help keep Sami occupied. Sami enjoyed Susan's company so much that she made Susan go with her to get the new hearing aid molds and wanted her to come home with her. Maybe another time.
August seems to be booked solid with lots of visiting. We hope to see Rose and family, Eric and family, and make our first trip to Sesame Place this coming week.
Grand Dad Jack plans to bring his sisters up for a visit on Wednesday and Sami has birthday parties on Sat and Sun next week.
We look forward to visiting with Kira as she makes her first trip east since moving to Phoenix over 2 years ago.
We will keep you update as time permits. Dan has tons of pictures to post so watch for changes to come.
Sandy
Friday, August 1, 2003 10:02 PM CDT
Well school/camp was fun. Three days a week really got me ready for full time. Now they are on vacation. I'll go back in September.
I'll continue for August to Boci's home. Liz and Boci take good care of me. IT has really been fun lately. First Carly had a birthday, and then Jullian and in two weeks Mikey will have a party. I'm so glad they invited me. Because I'm their older friend. By at least 4 months.
Today I played with my big cousin Angela. It was so much fun. She brought her boyfriend Bill. He is cool. He even let me brush his hair and put butterfly clips in it. Too bad dad didn't get a picture. He looked cute.
Tomorrow we all go to Aunt Rhodas for a big party. I can't wait to see my grand dad Jack and all my other cousins. I'll update you later.
Sami
Saturday, July 26, 2003 9:21 PM CDT
Hi Everyone,
Sorry my Mommy or Daddy have not updated this sooner. I have been keeping them very busy. I go to camp 3 days a week and have lots of fun there. Then after camp I have had lots of fun with Mommy and Daddy. One day my Daddy picked me up and we went to a farm and went pony riding. It was so much fun I wanted to stay there all day.
We went to the rodeo again and Grand Dad York and Granny came up last week to play with me. We had lots fun shopping and I wore my listening ears for Grand Dad.
This past Friday Aunt Arlene came over and we had lots of fun. We went shopping and I showed her all my friends at Wegmans while we were getting food for dinner.
Today we had a block part for the kids. It was so much fun playing with everyone in the neighborhood. It was a nice day to run around and have lots of fun.
Well I am getting ready for bed now. Please drop a note in the guest book, I love to hear from all of my friends and see how they are all doing.
Love Sami
Monday, July 7, 2003 9:42 PM CDT
Today was Sami's first day at Children's Corner. A preschool that she will attend in September full time. But today and the month of July is camp. A chance for Sami to get used to the new school.
She was very excited, she picked out her Thomas the tank engine t-shirt, her special panties and pants, right down to the socks and shoes. She helped Daddy pick out, make and pack her lunch in her new Thomas lunch box. She carried her Cinderella beach towel and purple bathing suit. We walked in happily....but two feet from the door to her classroom she froze. Dad left with just one photo and a broken heart to see Sami holding back the tears with red eyes. Ms Cerona held her as we peeled her hands from my legs. I had planned to stay if she wanted me to, but I could see it was time for me to leave and let her get used to her new school bond with her teacher.
Ms Cerona appears to be a kid herself. But with 17 years experience, she credits this as her first and only job. And she loves it. Oh, maybe not this time of year as she watches the older kids grow up and graduate. But you can tell they all love her.
I'll get the names of her other teachers and helpers soon and post pictures.
I picked Sami up and received a warm welcome from Ms Cerona who told me after a few tears and a mad attuide, she perked up and had a great day. I found her emerging from the sand box with a smile. She told me all about her day and had to give Ms Cerona a big hug before we left.
School was a big hit.
Monday, June 30, 2003 11:01 AM CDT
Wow another busy week. Dan will post new pictures soon.
MOnday, June 23rd was Dan's birthday. After work, Sami and I picked him up and took him to Great Adventure. We had a great time. Sami, the darn devil that wants to get on Superman (but she is too short) got on the log flume. I didn't think she would becuase she doesn't like to get wet. But is was hot and we all enjoyed it. Then off to the kiddy rides till closing.
The tuesday Sami and I went swimming in our hot tub that during the summer we keep cool (like bath water) for a relaxing dip. It was close to 100 each day.
Wednesday evening Sami had a date with her boyfriend Kevin. The six of us: Kevin his mom Pat and dad Dave and Dan, Sami and I went to St. Ann's Festa of good food and fun kid rides. They had a great time. And luckily they didn't notice that she was an inch too short to get on the rides. Kevin is a day older and a head taller.
Thursday Sami and I spent the day together. We started at her new school which she loves. She took her new Thomas the Tank Engine lunch box and was the hit of the class. I hung around...next week she goes it alone. Afterward we went to lunch and to our friends Mike and Laurie. We got in the pool with their daughter Nicole. We all had a great time. I thought she would fall asleep on the way home, but no such luck. I don't even remember what we did after that, but I know I wanted to stay out of the heat.
Friday Sami went to the farm and spent the whole day swimming, playing with baby Kaylee, the horses, dogs, cats, Krista and Steve.
Dan and I shoot a wedding for a friend so Krista watched her right into the night. We missed her...
Saturday Sami and I spent the day together and by evening we meet up with Dan and drove to Woodstown, NJ for Cowtown Rodeo. Come meet us some time it is fun.
Sunday I had a reunion with some old friends from my former position in Lawrenceville. It was great to see you all.
It is Monday and I'm exhausted from the heat and running so much. I hope to have a quiter week, but Forth of July is approaching. I have a long weekend with nothing scheduled. I haven't had time to put anything onthe schedule. Company is welcome and Sami and I are thinking of going to Maryland but Dan has to work....Anyone got any ideas? let me know.
Sandy
Sunday, June 22, 2003 10:50 PM CDT
A Day out with Sami.
Hi guys Sami here.
Last week my Mom and Dad took me for a long drive. The entire week before they were telling me that we were going to see Thomas the Tank engine. Guess what? When we got done driving we were at Thomas. He was sitting on the track waiting for me. I knew he was excited to see me because he had a big smile on his face and when he saw me he tooted and smoke came out of his top.
We got to ride on Thomas and it was a really nice ride. I held the tickets for the conductor to collect when he came by. I loved looking out to see the corn growing and all the cows and Ba Bas (horses) in the field.
I got to play with lots of Thomas things and go on lots of fun rides and even go to ride in a horse and buggy, maybe Tom will take me for a ride some day, I really enjoyed it.
We stayed at a real nice place. They had a heated indoor pool that I just loved playing in. I did not want to get out I was having soo much fun.
I hope everyone enjoys looking into my world and getting to see the pictures of what I am doing. Let me know so I can keep Mom and Dad on top of the site.
Love to all my friends
Sami
Thursday, June 12, 2003 7:16 AM CDT
Sorry for not updating for the relay of life. Dan is working on the pictures that should be posted soon.
The weather was perfect. After all the rain we have had this year, we were prepared for anything.
Thanks to all that donated money. I didn't get a total this year as it rained on the closing ceromonies.
Sami had fun with Arlene, Krista, Betty and baby Kaylee. We walked the track, played with bubbles, ate and played some more. But when Kevin and his mom and dad arrived it was like she was right at home. It didn't matter that we were at the relay. They were so excited they just had fun.
The weekend was a rain out and we didn't do much. Krista came on sunday to try once again to see NEMO. Sami loved it. Now she wants to wear Nemo panties and tatoos.
And...with heavy heart I must note that our friend Colby has grown his angel wings and left this earth. Please check out his site: http://www.caringbridge.org/pa/colby/
We will be going to see Thomas the Tank Engine on Tuesday and may need to make a detour to Pittsburgh for a COLE hug.
Sandy
Thursday, June 5, 2003 10:42 PM CDT
Sami and I had a great day together.
We were on the road by 9:30 to get to CHOP. No not for a scheduled appointment with a doctor, but a fun date with Sami's friends: Colby, Cameron, Zachary and surprisingly Kyle. Of coarse Laura and Dana too.
We arrived about 11am and went right to 3East to visit with all the nurses. Sami continues to surprise everyone as they don't recognize her with all the hair. She is tall and big to them as they are used to her being carried about like a baby. She is all grown up now.
Dana sat with Colby in the Day Hospital as Laura took a walk and I survised Sami and 3 boys! Not an easy task for me, but we survived. Then off to McDonald's for lunch.
After lunch, Cameron (Colby's 3 year old brother) came along with me and Sami to go to Great Adventure. Cameron feel asleep one mile from the park and Sami and I couldn't get him to wake up until about 10 minutes before the end. He enjoyed it all the same. By then it was 5pm and Dana and Laura were on the way to Dana's house. We headed there as well.
We couldn't have planned it any better as I pulled in just behind them. Perfect timing.
Lets do it again sometime and give me more time to take the kids on rides at Great Adventure.
We played at Dana's and ate dinner. Sami and I headed home at 9pm. The Cole's were spending the night.
What a great full day of fun. It was wonderful to be normal with you all...sending all my love.
Friday is this years relay for life. Checkout the pictures from last year. Dan will update with 2003 pictures probably over the weekend.
Sandy
Friday, May 23, 2003 4:34 PM CDT
I have been getting questions about Relay for Life.
Relay for Life is a fund raising opportunity for the American Cancer Society. Last year the North Hunterdon chapter raised over $125,000 toward cancer research.
Check out the pictures from last years event....Sami was the honored guest taking the first lap, getting her picture in the newspaper and announced at the ceremony. She didn't actually walk, but I carried her round the track in celebration of her survival from cancer. At that time, she was still undergoing treatment and we had not yet heard the official words of REMISSION.
Today we are confident that Sami has beaten this disease. We are very honored as more than half do not. We continue to follow and support several of our friends that battle this disease every day.
CHOP: Children's Hospital of Philadelphia is a leader in innovative and experimental treatment.
Currently we are asking for donations to support American Cancer Society's research to treat cancer. It is a huge challenges that and this event, Relay for Life is an inspiration celebration as survivors from around the county and state will attend.
It is like a walk a thon but around a high school running track. Outside of the track are sponsors bill boards and banners. Lining the track are thousands of white bags with candles. Each bag has a name of a person that has been diagnosed with cancer. Some have survived the disease that we list at "HONOR" and some have not and we list their names as "IN MEMORY."
See the pictures of the luminaries....A $10 donation is requested for each luminary. Last year I didn't understand the process and I only had one luminary for Sami. This year I want to see lots of them with her name. I'd love to see her name circle around the track. So help us light the track with the name SAMI.
Or send your donation with a name of someone you know that you would like to honor or remember.
Send me an e-mail with the name and amount of your donation so I can get the requests submitted in time for the June 6th event. I will pay for your donation and ask that you send me a check payable to Sandy Gray and mailed to: 56 Huntley Way, Bridgewater, NJ 08807
Thanks !
Thursday, May 15, 2003 7:39 AM CDT
It has been two years since diagnoses and I remember it like it was yesterday.
The whole week leading up to the day, May 16th, was crazy. The week before I had to take a business trip where I spent my first two nights (and only time ever away, as I spent every night in the hospital with Sami) away from Sami. She walked the house looking for me all night. Dan and her slept in the rocking chair.
On Friday at daycare she made me a mother's day gift. She put her hand and foot prints on a pot and planted flowers (with Liz's help of coarse she was only 13 months). That is why she has paint all over here in the May 11, 2001 picture.
On Saturday we went to the doctors yet again and asked to be referred to a gastro specialist. She agreed that the problems seemed intestinal (which I had said all along) and planned to research a specialist on Monday. Symtoms: bloated stomach, vomiting, pain etc...
On Sunday was our first mother's day. We spent a quite day at home together.
On Monday I had to commute to New York for a meeting where I also consulted over the phone with doctors and argued to get Sami seen the next day.
On Tuesday Dan flew to Chicago for his first business trip with a new company. That same day, Sami and I went to Robert Wood Johnson to see a gastro specialist.
She was sent immediately for an ultrasound, which showed a mass. And that is all I knew. She couldn't eat, they tried to put IVs in, tried to get her to drink contrast dye, put her to sleep and tried to get cat scan of her abdomen. Tried because her illness had her so sick, that she was full of fluid and it was difficult to find veins.
Meanwhile I was alone, with no way to get anyone. Finally Arlene arrived, Liz and MaryLou and Dan flew home. He arrived at the hospital as Sami's pediatrician was about to tell us what she now suspected to be Wilm's Tumor or Neuroblastoma. We spent one night at RWJ then transferred to CHOP, Children's Hospital of Philadelphia.
2 years later, we still feel like CHOP is our family and home. Luckily Sami was so young that she remembers mostly good, fun things like the playroom, the nurses, the bubbles and now she can even reach the automatic door button herself.
For the first year we were at CHOP more than we were home. I think I counted about 250 days. The good news is that Sami has not spent the night at CHOP in 14 months. She is on 6 months clinic visits and cat scans.
Sami is a health happy 3 year old.
She is walking, talking, eating and potty trained. Her only obstacle is hearing. If we could only get her to wear her hearing aides she would probably do even better in speech. But all in all, we are extremely blessed.
Thanks for all your support. We couldn't have gotten through this without everyone's help.
Now, we are preparing for the annual Relay of Life. I would like to ask for your donations of $10 to light a luminary for Sami. I'd love to see her name circle around the track. Last year I didn't understand the process and I only had one luminary for Sami. This year I want to see lots of them. So help us light the track with the name SAMI.
Thanks !
Saturday, May 10, 2003 11:30 PM CDT
Happy Mother's everyone!
I am so thankful to have Sami with us today.
It was two years ago that she was diagnosed with Neuroblastoma. The memories are like it was yesterday.
But today she is a normal three year old. Running, playing, falling down, skinning her hands and knees, needing band aides and love from mommy.
She is riding a two wheel bike (with training wheels). She always remembers to where her helmet.
She is getting into everything princess and of coarse still loves her babies.
Her only real lasting handicap from treatment is hearing loss. It has either continued to get worse, or the testing and Sami are getting better results. She continues to refuse to wear the hearing aides, but that doesn't stop us from trying. Eventually she will hear the difference and want to wear them (so they tell me).
But today I'm writing to tell you that she has decided to give up diapers. For the most part she has been wearing pull ups and going on the toliet when it was convenient. But now SHE wants to wear strawberry shortcake and princess panties. And, she finally understands that she has to go on the potty to get that. There is no turning back now.
What a great Mother's Day gift.
Sandy
Wednesday, May 7, 2003 8:36 PM CDT
Yes, it has been awhile since the last update...but the pictures have been changing every 2-3 days. Have you noticed?
There hasn't been a journal entry since Easter.
Speaking of Easter, we had a wonderful day. We took Sami to the park to get a nice shot of her in her Easter/3rd old dress. She was beautiful model. The only problem was too much sun so her eyes would close. We spent most of our time going from park to park and spot to spot looking for shade, color and the best setting. But those that have seen the wallets will agree she looks great.
After pictures, Sami took a nap (as a matter of fact I think the last one. Afterwards we went to the farm for a family dinner with our best friends the Salerno's.
Sami had a great time...as you will soon see from pictures.
We days and weeks are good. Sami continues to enjoy every moment. She took a trip to CHOP with Daddy to get new ear molds made for the new hearing aides. We all went down to get the earing aides last week. Sami did great wearing them for about an hour....thanks Colby. Even though you were sleeping, she had them on for you. After her appointment with the audiologist, we visited with Laura and Colby. He was feeling much better, but a bit sleepy. They loved Sami's cookies (well Laura and Dana did - Colby isn't much for sweets).
Then off to meet Mikey from Atlanta. He meet us in New Hope for dinner. We took a stroll and then off to our house where Mikey spent the night. In the morning he went with DAn and Sami to the farm to meet everyone that he has heard so much about. Sami showed off all the horses even the new baby 'rosie nosie.'
Friday night Aunt Diane came to visit and Saturday morning Grand Dad Jack. Sami had a great time shopping, eating donuts, ham&cheese and anything else she could. She rode her bike (thanks Zoe she loves it) and played with the neighbor kids.
Sunday we were off to a birthday party in Brick, NJ. Sami's friend from California was in town to join in the fun for her 2 year old cousin Hunter. It was a great bash with swings, slide, doll house, and animals. yes, there were pony rides and farm animials to see, touch and feed. Sami loved playing with Paige and Joelle. We have missed them so much (as you can tell from all the photos we have been posting from CA trip).
After the party we went to Six Flaggs Great Adventure where we got a season pass to go on rides all summer long. Sami loves rides and had a blast going from one to another. By 8 we were all tired and ready to be home. We will come back another day and meet Zachary and his family for fun.
That night Sami didn't feel well. Gas and stomach pains. probably from all the junk and excitment. By 10pm she lost everything she ate for dinner and was pretty sick. But by morning she was eating and acting like herself. I kept her home from daycare incase it was a virus, but it didn't seem to be. Naz watched her in the afternoon so I could get some work done.
Sami had her first real dentist appointment. Well, she didn't get her teeth cleaned because she wouldn't sit in the chair, but the doctor was able to do a quick exam and found one cavite and a couple to watch. Most likely due to chemo, but we will be watching sweets a bit more closely now.
Sami and I are going to spend the day together tomorrow. Hopefully I won't have too many errons so we can enjoy.
Please sign in.
Monday, April 21, 2003 9:38 PM CDT
Keep checking the pictures. Remember we had about 900 from vacation. Dan is posting new pictures every 2-3 days. Sign in and let us know you stopped by.
It is time to prepare for Relay for Life.
June 6 and 7 is Relay for Life at the North Hunterdon High School. Last year Sami was the honored walker. We all had a blast and can't wait for this year's event. Sami's sitter and friend, Krista Salerno is our captain.
If all works out with the committee there will be a hot air balloon set up to give the surviors and friends a ride. Dan has arranged the details with a old friend who flies balloons. Actually so that many people can take advantage of the ride, the balloon will teather. That is where the hot air balloon, tired to ropes, goes up a few hundred feet and back down. Donations are requested to benefit the American Cancer Society.
Those that would like to walk and join our team, please let me know as soon as possible as we are forming our team. We are also looking for a name of our team, if anyone has any name suggestions let us know.
Those that can't come to walk with us, but want to send donations, send me an e-mail.
Remember, you can request luminaries for your friends that are living with cancer or someone that you would like to honor in memory. Luminaries are $10 each.
Questions: please send me an e-mail at gray56@optonline.net
Sunday, April 13, 2003 0:12 AM CDT
Well, I cant tell a story as well as Marty and Dan from Samis perspective so I will give the play by play.
We flew to California on Wednesday April 2nd. It was a beautiful day in LA. We checked into the hotel and we lucky to get an upgraded room to a suite. We toured the area to learn where everything was (Disney, groceries, etc..) and so Sami would take a nap. Dan and I had lunch in the car while she slept. When she woke up we went to downtown Disney and walked around. She had lots of fun in the lego store and we tried on princess hats together in the largest Disney store. Sami bought a ball/balloon with princesses on it. Then off to the store to get some groceries before returning to the room.
Of coarse being on east coast time, we were all ready to fall asleep early, but woke even earlier. We had no problem getting to our breakfast reservations with Minnie Mouse at 6:45am. Sami had fun playing with Max, Pluto and especially her friend Minnie. She ate well too (mostly pancakes). Her favorite was playing limbo with Minnie.
Then we were off to the hotel to wait for Samis friend Paige and her family to arrive. They checked into the hotel and we walked to Disneyland from our hotel (7 minutes). We headed right for fantasyland with some stops to see characters and rides along the way. Paige is also 3 and she loved riding the rides with Sami. We all had a great time. The sun was shining, but the breeze was cool. Perfect for us.
We all loved the parade and got in one more ride before the park closed.Paige and Sami took their daddys for a drive.
It seemed every where we went the item on the menu was hot dogs. The kids didnt seem to mind, but we adults had enough by the second day.
The second day we went to breakfast at 8am with Chip, Dale and Pluto. We sat at a table just by the door where the characters hung out. The kids ate a bit, but the adults enjoyed a wonderful brunch as well as drinks (yum). Afterwards, we went back to the hotel to check out and go to Disneys California adventure for the day.
The Aladdin show was great. The kids were good sitting for 45 minutes. And baby Joelle got a much needed nap. Then we were one to its a bugs life rides and shows. That was perfect for them. We all enjoyed the rides.
Sami got a nice album with signatures from the characters as a gift from the guest services team. Thank you!
Then we went off to dinner at Ariels Grotto. There we ate outside on a cool California night. Goofy was great, drawing pictures for the kids. Pluto played and had fun and Chip and Dale liked to dance the conga line. Sami and Paige loved talking to Ariel.
After dinner we drove to the Glickman home in Northridge. Thanks so much for letting us stay with you: Marty, Stacy, Calli (especially for giving up your room), Paige and Joelle. We had lots of fun.
Saturday we relaxed around the house in the morning, and in the afternoon we went to a train museum/park that was great for the kids. We got the chance to climb on the engines and ride a small train.
Sunday we drove to Santa Monica Pier. There are lots of great kids rides. Things I never thought Sami would get on. But they are fearless getting on every ride they could, and wanted to get on others that they were too small. Look out Great Adventure, Sami will be there this year.
Sunday, April 6th was Dan and Sandys 19th Wedding Anniversary. Marty and Stacy watched Sami while we went to dinner at a Japanese Steak House. It was very relaxing; though we are so boring we couldnt come up with much to talk about without thinking of Sami.
Monday Marty worked and Paige went to school. Sami didnt want to stay so she came along with Stacy, Joelle, Dan and I to NBC Studio tour. Stacy and I are big Days of Our Lives fans. We also have another thing in common. We were born on the same day, March 8.
The tour was good, but the best part is usually the displays, furniture, carpet, ok anything Days. But this time we had a first. (Stacy has probably been on this tour about a dozen times and this was my second time), one of the Days characters Nancy was in the hall talking to some people. We asked if we could talk to herand then we even asked to take pictures and she happily agreed. She loved Joelle. But who wouldnt with those big eyes and great cheeks. She has been such a great baby through our busy trip. She would be great on camera.
I told Patrika Darbo (Nancy Wesley on the show) about Sami being a cancer survivor and she went to get Nadia Bjorlin (her daughter, Chloe Lane on the show). Chloe has leukemia on the show and is undergoing a bone marrow transplant currently. Nadia enjoyed meeting Sami and hearing her story. They eagerly took pictures with us, which Dan will be posting soon. This was the thrill of my trip.
Tuesday, Dan, Sami and I went to Universal Studios. We had a nice day. The weather got a bit warm for us so we tried to stay out of the sun enjoying the shows and attractions. Most of the rides were for older kids so Sami didnt get a change to hold her arms in the arm and scream much.
Wednesday, April 9th we flew home. The flight was delayed due to thunderstorms in New Jersey. But Sami didnt mind. She meet some friends in the boarding area that were on our flight: Quin and Veronica. Quin and Sami and the same age. We hope to meet up with them again sometime.
Arlene picked us up about 11pm, by the time we dropper her off at home, got a snack at Dunkin Donuts and got home it was 12:30 and Sami didnt got to sleep till about 1:30. Which is normal for her if we were on the west coast. Yes, and she is still on west coast time as Thursday she went to bed at 1, Friday 12:30 and tonight it was midnight. If we keep up this time frame it will be another week before she is back on schedule.
Today, SaturdayDan worked. Sami slept all morning getting up about 11:30. Though I did try many times to get her up. She played outside with the neighbors all day and no nap. A bunch of us even went to dinner about 8pm. It was fun. Thanks Pat, Dave and Samis friend Kevin; Kathy, Rob and Samis friend Katie.
Be sure to check the pictures every day as they will be changing often.
Thursday, April 10, 2003 10:22 PM CDT
Well we are home safe and sound.
Hope you enjoyed the update from Sami's point of view written by Paige's father, Marty. We are honored that he took the time to write journal. We love his sense of humor and hope you did too. If you didn't read it, check it out in the history and write a comment in the journal.
We checked daily and were very disappointed that no one wrote in the journal to let us know you liked it. Maybe you thought it was Dan.
We took about 900 photos, so look for the pictures to change every couple of days.
I'll update with the events of the week in California soon.
Sandy
Tuesday, April 8, 2003 2:35 AM CDT
Today I flew all the way to Los Angeles for a fun filled stay with my friend Paige Glickman and her family. We went to the words largest amusement park. The park is called Southern California. We saw huge mice, silly dogs and princesses. Paige and I went on rides and now I have that Small World song stuck in my head. We had a giant suite at the hotel (we had the 3 room Presidential Suite) and while that was nice My friend Paige had an even nicer room. Her dad kept calling their room Vice Presidential Suite. I think he looks like Al Gore. After 2 days in a hotel we went on the freeway for a ride to Paiges house. My dad called it an E ticket ride.
We stayed at the Glickmans home in Northridge they have a big dog and we took her for a walk. I got to carry the supplies. My dad will not tell me what the poop bag is for. We took another ride and ended up at the pier. At the pier we went on more rides and played boardwalk games. I did not puke. The next day was Travel town Paiges mom said it was a wonderful place full of history and a lot of trains. My dad called it an old freight yard. They let me where the hat.
My trip is not over yet. So far we have seen Disneyland, Santa Monica Pier, NBC and Universal Studios and Travel Town. I have eaten a hot dog at every one of these places. I still have not puked. Thanks to Marty, Stacy, Calli, Paige and little Joelle Glickman. This has been a very cool trip.
Monday, March 31, 2003 7:07 PM CST
It is time to prepare for Relay for Life.
June 6 and 7 is Relay for Life at the North Hunterdon High School. Last year Sami was the honored walker. We all had a blast and can't wait for this year's event. Sami's sitter and friend, Krista Salerno is our captain.
Those that would like to walk please let me know as we are forming our team now. We are also looking for a name of our team, if anyone has any name suggestions let us know.
Those that can't come to walk with us, but want to send donations, send me an e-mail.
Remember, you can request luminaries for your friends that are living with cancer or someone that you would like to honor in memory. Luminaries are $10 each.
Questions: please send me an e-mail at gray56@optonline.net
Thursday, March 27, 2003 10:52 PM CST
Sami had a great day on her birthday.
The weather was perfect, sunshine 65 degrees.
Dan took off to spend the day with her. They went to breakfast with daddy's friend Scott.
Then they drove to Camden, NJ to the Aquarium. Dan tells me she enjoyed being outside more than inside with the fish. The merry-go-around and the train were her favorites. Well along with the big big boat - SS New Jersey was in port.
After a long day she took a nap on the drive home. But they made a stop to pick up her birtday cake at the Gaston Ave bakery. She picked it out. Yellow cake, choc mouse filling, whipped cream outside and Thomas the Tank Engine on top. The day before we went to party city and bought Thomas accessories: hats, blower toys, plates and napkins.
Sami's god mother Arlene and her god father Jason with his wife Joann and son Joey came bearing gifts (something Sami is now getting into opening). Naz, Angali and Kabir came as well. And of coarse Pat and Kevin came down. We celebrated Kevin's birthday yesterday.
After everyone left about 9:30, Sami sat down to watch Cinderlla and feel asleep about 10:30.
Friday she will be at the farm with Krista.
additional comments from Arlene, "her first birthday she had black hair, her second she had no hair, her third birthday she has light brown hair."
how far she has come in one short year.
Last year she had just finished 2 transplants and radiation. She had an ng tube in her nose and she didn't eat much of anything.
This year she has a full head of hair that we have to cut monthly (or more). She eats everything in site..especially fruit and vegetables. She had gained 10 pounds !
It is quite amazing to think about how far she has come.
Wednesday, March 27, 2003 12:20 PM EST
Today is Samantha Rose Gray's 3rd Birthday.
Wednesday, March 19, 2003 6:45 PM CST
I know, I know...what has taken me so long to update.
We are busy...being normal. But we check the guest book every day. We know that many of you are checking in, so don't forget to sign and let us know.
Sami is doing great. Yes, the running nose is constant. Doctors say she is just catching up on all the viruses that she missed. Daycare is great for that. Remember she goes to a family daycare on Monday and Tuesday. Wednesday and Thursday she is home and Krista comes to play. Friday Sami goes to Krista's home at the farm so Sami can play with the horses, dogs, cats and many human friends. It is a busy week.
Dan was away on a business trip March 2 for 5 days and I was sick with food poison just after which laid me up for several days including my birthday where I had to cancel my plans.
We all have enjoyed the snow, but we are so excited Spring is here and the weather has been great. Sami loves to play outside. All the kids in the neighbor are wonderful. Sami especially likes to play with Anjali, Kabir, Kevin and Katy. She has had play dates with Alyssa from Daycare and Maureen our financial advisors daughter (hope your lip is better).
Friday, March 14th was Sami's appointment with the audiologist to get her hearing aids. She did great with the new ear molds and testing, but by the time the hearing aids were programmed she wanted nothing to do with putting them in. We have been trying them alittle each night. It isn't going so well. But we will be patient.
Wednesday, March 19th Sami had her 3 month CT Scan. The night before she had to drink the contrast dye, which didn't go so well, but we got most of it in before she fell asleep in my arms sitting up with a cup in her mouth. We had been struggling for and hour and a half to get her to drink it. My fault, I gave her a drink she hadn't tried and didn't like. Plus the contrast tastes bad. In the morning she drank the contract dye with apple juice without much of a problem.
Of coarse we saw all our friends at 3 EAST. Some I don't even remember their names so I am sorry, but here are a few: Sami's favorite Jackie and primary nurse Marie, Kitsy, Danielle, Ellen, Anita, Susan, and again lots more.
Child life friends: Terry, Rochelle and Stephanie.
Sami meet Dr Don (she even recognized him coming up the steps) and audiologist Laura in the halls.
The sedation group was so glad to see Sami as well. Thanks Helen and Ruby! You are the best! (one stick again Helen, you are good)
The Clinic was crazy, I don't think I saw Kelly, but we did see Cindy, Connie, Susan and a special thank you to Kim for all your hard work finding our the special blood tests Sami needed for one year post transplant.
Back to the CT Scan. All went well. The IV was easy, she went to sleep well. The scan was CLEAR. She took a long nap, woke up happy (but drunk). Didn't get sick...
.... And the good news, she doesn't have to go back till September. She is now on 6-month clinic and CT Scans for the next 4 years.
Don't worry CHOP friends, we will come to visit during Sami's hearing aid checks, which are monthly.
Dan will post pictures soon. I must admit we haven't taken much lately.
Sandy
Sunday, March 2, 2003 10:34 PM CST
Sami is doing fine. The cold is much better. One more day of antibotic. Though the nose continues to run. But not as much.
Wednesday we took her to Children's Corner a nursery school in the area. She will start there 5 days full day in September. We were lucky to get her in as there is awaiting list. Thanks to some friends Sami got in. Now she is on schedule to attend the next three years: 3year class, 4 year class and full Kindergarden. The local district only has 1/2 day kindergarden and I wanted her in full day. She can wait to go (until that day that she has to leave mom of coarse).
For now she will continue her schedule with her daycare and Krista. I like the varity, though I know kids like the routine that the nursery school will provide.
Friday was her day at the farm to play with her pals: Sassy, Joey and Patches. She had a blast with Krista's sister baby Kaylee. At almost 6 months, she can sit up and play more with Sami. Of coarse she made her way around the stalls to see all the babas (horses).
Saturday we all went to NYC to a frame show. IT was relaxing and fun. But lots of trips to the potty. Sami did great. She actually went 3 out of the 6 times. And only had one pull up all day.
Sunday however, home with mom all day...she didn't go potty once. We had a relaxing day together.
She is sleeping and I need to get to bed as well.
Best wishes to all.
Sandy
Sunday, February 23, 2003 10:06 PM CST
Sami continues to have a running nose. I don't remember the last day it didn't run. This week, though no more fever (just that one Sat morning a week ago), she has continued with post nasal drip, bad coughing at night and boggie nose in the morning. Saturday we made another trip to the pediatrician to get some antibiotics. Though, Saturday she had already seemed much better then the days before. Hope to kick this bug out soon. Not that it has slowed her down one bit.
Sunday we went to Ronald McDonald house in Philadelphia to visit our friends the Cole's. Sami may cookies for Colby and ran around the place with his brother Cameron.
Then we left left Philly to head towards home to visit Sami's friend Brynne. We hadn't seen them in a very long time. The kids got along great. Nice to see the 2's fading away and fun beginning as they mature at 3 year olds (Brynne was born 1/1/2000)...Sami will be 3 on March 27.
Sami loved playing with Brynne's baby brother Boone. And it was great to see you Karen and Dave, thanks for dinner.
Looks like a normal upcoming week. Hard to believe February is almost over. Time to look back and see how far we come. Sami was less than 9 kilos (18 lbs) this time last year. Now she is 29. She had just finished radiation, not eating, and getting her nutrition from an ng tube for the first time. She was still nursing, but usually just to sleep or comfort. She has come a very long way.
Sami's next trip to CHOP is March 14 for earing aids and March 19 for 3 month cat scan.
Sandy
Saturday, February 15, 2003 7:48 PM CST
Well, what a great winter. Lots of snow, pretty and cold. And along with that seems to be endless colds. It is hard to tell when one of Sami's cold begins and ends. Just seems to be continuous. Though she doesn't seem to miss a beat. She has had a clogged up nose for over week. Then this week she woke up with crusty eyes and bloodshot. Concerned of pink eye that has been going around at daycare, I rushed her to the doctor. Seems that the virus that has attacked her nose has gone to her eyes. No pinkeye, just a virus which as of today seems to have traveled to her lungs. This morning she woke up coughing and a fever 100.7. One dose of Tylenol and on she went to play the day away.
And eat. Can this kid eat. Mostly fruits and vegs that she loves to dip. But she does love cheese like mommy. Pasta, french fries, hotdogs, peanut butter and jelly sandwiches and ham and cheese sandwiches are still a hit. She gained 1 1/2 pounds since the last doctor visit less than a month ago.
29 1/2 lbs, 34 1/2 inches
Sami loves to play with Buttercup, our hamster. She is very gentle and loves to ..."hold her." (I hear all day).
Hoping for lots of snow tomorrow....
Thursday, January 30, 2003 at 09:17 PM (CST)
Well, Wednesday was Sami's follow up ENT and Audiology appointment and we made the big step. The agreement is that Sami would benefit from two earing aids. We are reluctant as always, but know that it can only help. We go back for fitting in 3-4 weeks.
For those of you that don't know, the "platin" chemo drugs (Carboplatin and Cisplatin) are known to distroy hearing. The good news is that Sami's hearing loss is mild to moderate.
And beside earing loss she has virtually no other side effects or set backs from the 18 months of drugs. She is meeting all milestones. Just a normal kid. In less than 2 months Sami will be celebrating her 3rd Birthday!
As you can tell her hair has grown back beautifully, she is eating, growing, talking and learning to go on the potty like all other kids her age.
Thanks for you support and messages, as always. It means so much to us. We check every day. So sign on and say hello. Dan will continue to post new pictures every few days.
Thursday, January 16, 2003 at 02:15 PM (CST)
Well we are in full swing with the new year. Forging our way into a routine of normal life.
Monday and Tuesday Sami is back at her original daycare. A loving home where she is cared for by two special people in our lives: Mary Lou and Liz. The mother and daughter team watch a variety of boys and girls under 4. When Sami first came to their home is was one of 2 girls. Since then the boys have moved on to nursery and preschool and girls are now the norm with little Mikey and a few baby boys. Though generally Sami seems to graviate to boys, she is finding a close bond with her new girl friends Carly and Jillian. the kids, the different toys and surrounds keep her active all day. Which leads us to naps that continue to be a problem, as all the kids lay down together and at the end Sami is the only one watching the movie. Sometimes she just skips it with the rest time enough and other times she asks to go home to take a nap so I pick her up early. She is asleep before we get home and takes a good 2 hour nap.
Wednesday and Thursday, Krista continues to come to the house. It is nice for all of us. Sami gets to play with her presents, watch her movies and get one on one attention. There is no rushing in the morning to get Sami feed, dressed and out the door to daycare. Krista is patient and enjoys cooking breakfast and lunch for Sami.
Friday, Sami goes to Krista's house at the farm. Dan drops her off on his way to work. As you all know Sami loves Sassy the dog (and her friends Joey and Patches) and all the horses (especially Ba ba ba bad - which is why she calls all horse, baba). I pick her up in the evening and sometimes she falls asleep and doesn't wake up till morning.
Saturdays are mom and Sami days while daddy works.
Sundays are a day for us to be together!
Keeping checking the photos. Dan continues to change them every couple of days. And sign in and let us know you visit. Or send us an e-mail. We would love to hear from you.
Sandy
Wednesday, January 08, 2003 at 09:54 PM (CST)
Hope the update hasn't fooled you into not checking pictures. Dan has been posting new pictures about every 3 days at the request of friends to see more photos more often. In the past week he posted 9 pictures of Sami with family and friends over the holidays. This coming week he is working on photos from our visit at Zachary's house.
So don't forget, check the pictures daily and log on to let us know you came to visit.
Sami, of coarse she is fine. Busy with friends. We would love more company!
Thursday, January 02, 2003 at 08:27 AM (CST)
Happy New Year.
We had a great time at the Doctor's house...Stu, Dana, Kyle and Zachary that is.
It was great visiting with Zachary's family and friends.
Sami played with 6 BOYS and loved it. Dan will put up pictures soon. In the meantime, check out the new pictures from the holidays.
Sandy
Monday, December 30, 2002 at 02:55 PM (CST)
Happy Holidays
Sami has had a great time. We are still partying. It started Dec 23rd with friends and presents. Then to the farm the 24th with the Salerno's. Lots of presents. Though Sami appears to like to open one and play with it. She really doesn't like to put it down to open the next present.
Christmas Eve the snow began it fall. It was beautiful at the farm. So we had our first white Christmas in over 30 years.
After we opened presents at home as a family. We drove to Maryland for presents with the Gray family. It was great visiting with all the aunts and uncles and cousins. Sami had a great time. Then off to the York house for some relaxation and more presents.
We came home on Friday and brought one of Sami's cousins, Steven. Then the rest of the Wiley clan and Jack came up on Saturday. It was a busy day making cookies and candies. We had our annual holiday party on Sunday. It was a great time. Thanks for coming...Arlene, Esther, Naz, Anjali, Kabir, Jill, Larry, Amy, Michelle, Scott, Kathy, Ryan, Brianna, Lauren, Amanda, Mike, Laurie and Nicole and of coarse our family: Jack, Dottie, Bob, Steven, David, Jordan and John.
Today is Monday. Everyone has gone home and back to work. So Sami and mommy spent the day visiting friends: Amanda and Nicole. Now Sami is napping.
Tuesday we will take Amanda and her mom Lauren to CHOP. Amanda has collected hundreds of hats for the children at the hospital. We will deliver them to the clinic and go out to lunch to celebrate.
Wednesday we plan to make a trip to Whiting to visit Sami's boyfriends: Kyle and Zachary.
Happy New Year and Health to everyone!
Sandy
Thursday, December 19, 2002 at 08:47 AM (CST)
da ta da taaaaa...
and the results are CLEAR SCAN !
That means no growth in the size of the remaining tumor in Sami's abdomen. As some of you may remember, the surgeon was not able to remove the entire tumor from Sami's belly. It was adhered to her veinacava going up through and behind her liver. Chemo and transplant and radiation have killed the tumor, but it lies dead in her body. We always thought this would just remain and the doctors would watch it. But as a bonus, not only did it not get larger...it has shrunk once again. To the point that our oncologist says he can't even see it anymore. The radiologist says there is still some there. But because it is dead, there is no threat to Sami.
All plans went perfect. Sami took a nap late Tuesday night till 7pm. Sounds like a bad thing to those moms that want their kids to go to bed at 8. But I wanted to keep Sami up till 11 or 12.
See she needed to drink a juice that contained a special contrast dye for the CT Scan. We planned for a movie and popcorn to fill her up and make her thirsty. It worked. Throughout the popcorn she was asking for juice, but we had to wait till she was done eating. Once she drinks the contrast juice, she can't have anything till after the test Wednesday. So about 10:30 I gave her the juice, she drank it down - 8 oz, which is not so easy for a 2 year old. Then we read a few books and in bed by 11:30.
The plan was for Dan and I to get up at 5, get ready, warm the car then pick Sami up out of bed at 6am and put her in the car where she would sleep the 2 hour drive to Philadelphia. And it worked. This makes life for Dan and I less stressful. Sami usually doesn't sleep on this ride. And to pass the time she usually eats. But she can't eat or drink anything. So we needed her to sleep and she did.
So on to registration and sedation. Sami needs to be completely still for the CAT scan and for a 2 year old that means asleep, so she was sedated. Helen was great, she got the IV on the first stick, a few tears but all went well. Within seconds Sami was laughing from the versed (1.2mg) and asleep with the other drugs (nembutla 36mg/fentanyl 12mcg). They tried something different (fentanyl) this time and it worked well and the effects were not so long lasting.
The scan was a quick 15 minutes.
All clear. Helen said we did a good job getting the contract into Sami. Her bowels lite up good so they could be seen on the scan. Once done we were off to the sedation area to wait for Sami to wake up. Only mistake, we woke her a bit too soon and they like to see them eating before they leave. We offered a lion, "dinamial" a drinkable yogurt. Big mistake, but the time we got to clinic, she threw it up all over me. Luckily Sami was still in the hospital purple pjs and I had two shirts on so I could take one off. It has been a long time (since April) since Sami has gotten sick so we were unprepared. We used to have extra clothes with us everywhere. But it wasn't bad and it all worked out.
We were surprised at clinic to see Sami's good friend Catie in for her 2 month check, they are moving to 3 months as well. She looks great, and mom is pregnant with number 3 (Lynda looked wonderful as well).
The catheter used for the IV at sedation wasn't big enough to draw blood at clinic so Sami had to get stuck again for blood tests. She had band aids everywhere.
We didn't get a chance to do a height check due to her the drunken state from the drugs but she weighed in at exactly 12 kilos (26 1/2 lbs).
Next CT Scan and clinic appoint is March 19, 2003. Counts are no longer an issue, actually they won't even do CBCs anymore. We haven't paid much attention to the anc and white counts in quite some time. But the next visit they will do a test to see how Sami's memory cells are doing. These are the cells that know how to fight common illnesses. Because she had her own cells during transplant, it is believed that her memory cells have retained her immunities. It will be interesting to learn about this.
January she will revisit the audiology and ENT departments for hearing tests. Plan is for a hearing aid in her left ear only unless there has been a major change in the constant mild loss reported in the right ear.
Also in January Sami will go back to the pediatrician for well check up and immunizations (3 scheduled).
Of coarse at clinic we saw all Sami's admirers Kathleen, Cindy, Stephanie, and especially Kelly who was so happy to see her half naked. And day hospital Pat, Teresa and the rest of the gang. Sorry, it is getting so long between visits I'm beginning to forget names. It was great to see you all. I know you check the website and don't sign in. We appreciate your kindness.
After clinic we went back to 3 east to see Marie and Jackie. Lots of Sami's friends were there as well like Ellen, Sara, Anita, and more. Sorry we missed you Anne, Carrie and Kitsy. Hope you got the pictures we left you.
We have a busy two weeks planned. We will update and post pictures when we can.
Happy Holidays to All.
And healthy new year to our friends surviving cancer!
Love, Sandy, Dan and Samantha
Saturday, December 14, 2002 at 10:56 PM (CST)
Sami is doing great. We are just so pleased how normal life is. Mommy and Daddy are busy with work, and Sami makes her rounds of visiting friends.
Sunday we went on a train ride and Santa stopped in to say hello. Sami only by surprise I'm sure, let him hold her. He gave her a candy cane, but she didn't like it. Then we went to pick out our Christmas tree. Looks to be over 12 feet. We got the lights on this week. We hope to finish it up over the weekend.
Friday, I took off to spend the day with Sami. I took her to my work party in New York City. American Express put on a great party for all the kids. Entertainers, food and rides....and Santa (Ho Ho) was great too. Though the line was so long that we didn't wait around. Santa gave me Sami's present and she opened it on the ferry ride.
Saturday, Santa (Ho Ho) came around to our neighborhood on a firetruck. Sami was so excited.
Krista and her boy friend Steve watched Sami tonight as Dan and I attended out annual block holiday party. It was great to see all the neighbors. The food and company was wonderful. Sami had a great time as well. Krista and Steve took her to McDonalds and the great light display at the Duke Island Park. She was still awake at 11pm when we got home. Though I wasn't surprised...I thought she would fall asleep in the car. She fell asleep 1/2 way into the second Elmo book.
Thursday, December 05, 2002 at 11:25 PM (CST)
Well, back rested and relaxed from vacation.
It was wonderful visiting with my sister Patty and her family in Puyallup, Washington. Sami had a great time with her cousins, Lee, Chris, Holly and Andrew and Uncle Roger.
We flew in Thursday, Thanksgiving. Pretty uneventful flight except that we over slept and were a bit rushed though we had plenty of time. After an early dinner, Sami played with the kids and went to bed early.
Friday we went to the zoo to visit the elephants and other animals of course. Then we had a picnic dinner and returned to the zoo when it was dark to see the zoo lights. It got cool and I bundled Sami up and she rode in the stroller, within a half hour she was a sleep. She slept through the transfer to the car, the ride home and transfer to the bed.
For the most part Sami stayed on east coast time getting up about 5:30am.
Saturday we drove to the mountains to see snow. It was beautiful. We had a picnic snack and pizza when we got home for dinner. Then we did family group pictures that needed updating. Everyone was brought there best smiles (THANKS).
Sunday we had friends and family come to visit. It was so nice to meet all of you. Thank you Ginger and Diane for the gift. Nita's girls (Katie and Annie) for playing with Sami and Mary Beth for the prayers.
Monday Patty and I walked the mall for some exercise and shopped. The guys (Dan and Roger) meet us with Sami to have lunch. Then Sami took a nap so she would be ready to go when the kids came home from school.
Tuesday was another day to walk the mall. Then lunch with the guys and Sami. Sami took a nap and I finished packing. We picked up the kids after school and left for the airport. We had a 6:30 pm flight that made a connection in LA. Sami fell asleep about 1/2 before we landed. I hated to wake her so I not so easily, unbuckled the seat belt for the car seat and carried here out the plane in the car seat, placed it on the stroller and stroller her to the next plane, where I buckled her back in. She slept the whole flight (4.5 hours). We arrived in Newark at 6:30am on Wednesday...still sleeping, I unbuckled her car seat and carried her to the stroller once again. We waited for our luggage and Arlene to pick us up. She didn't wake up until I took her out of the car seat to transfer her to the car seat in the car.
We were all so tired we went right to bed and took a 2 hour nap. Though Sami was ready to go at 10am (I wasn't) We began our day watching tv, grocery shopping and relaxing at home.
Thursday we awoke to SNOW. I don't have an official count but it looks like about 9 inches to me.
Sami loved playing in the snow. I took her out this morning, she went to play with Naz afterwards while I cleaned the house and got some of the Christmas decorations up. Then back out in the snow this afternoon, Dan took her sledding. She had a blast.
Should be a busy weekend preparing for the holidays and visiting with friends.
Sandy
Dan will post pictures soon.
Wednesday, November 27, 2002 at 03:00 PM (CST)
Sunday was baby Kaylee's Christening. It was a beautiful day and everyone had a relaxing, good time. Sami was a good girl in Church and played with her friends Sassy and Joey (the doggies) at the farm.
Monday was back to work for Mom. Krista came to help out so Daddy could get somethings done for pictures and a doctor's appointment.
Tuesday Sami went to her friend Liz's house to play with the kids. We call it school. She has fun (and even went on the potty).
Sami has more interest in asking to go potty these days. I haven't been pushing it because I knew vacations could set us back, we are just going at her pace.
Wednesday we had SNOW. Sami went to the farm to play with Krista. They had fun, until it melted. But it was pretty snow. Covered the grass and trees, but the roads and sidewalks were ok. It has been so warm the ground wasn't cold enough for it to stick and make a mess of the roads for driving.
Thursdays we are off to my sisters for Thanksgiving.
Enjoy, we are truly thankful this year.
Just as a reminder, last Thanksgiving Sami was released from the hospital after her 2nd transplant....on Thanksgiving Day. Liz came over with Turkey platters for Dan and I and we enjoyed the evening together.
Saturday, November 23, 2002 at 10:53 PM (CST)
Well another week flow by. We are getting into a routine with Daddy working now (but we don't like it).
Monday Dan and Grand Dad York played about and in the evening we went to the movies to see Santa Clause 2 (I mentioned that last week). Tuesday Sami went to visit her friends at Liz's house.
Wednesday, Mommy and Sami drove Grand Dad York half way home meeting Steven in Pennsylvania. We are used to that drive. Sami watched Barney on the way down and slept on the way home.
Thursday I took Sami to the farm in the afternoon to play with Betty while I had my yearly physical (all is well).
Friday, Sami went back to the farm to spend the day with Krista. They gave baby Kaylee a bath, made cookies, helped Tony in the barn and played with the new kittens. Sami didn't take a nap of coarse, but did fall asleep on the ride home about 5pm. AND SLEPT all night...till 7am Sat.
Saturday Daddy had to work...But he made us chocolate chip pancakes before he left. Then Sami went over to visit Naz and family and I got some work done. Sami and I went to Toys R US and bought the new movie "Spirit" I thought she would like it...horses and all. And she did.
Sunday we are going to baby Kaylee's Christening.
Tuesday, November 19, 2002 at 07:06 PM (CST)
Just a normal family continuing with daily life.
Sami is an active 2 and a half year old. This weekend Daddy had to work so Sami and I played. It was stormy and rainy so we were in most of the time watching movies and playing.
Sunday night daddy came home and brought Grand Dad York from Baltimore. Daddy and Grand dad played with Sami on Monday while mommy worked. Then after work, we all went to the movie theater. Sami's first time. It has always been a transplant restriction that she was not allowed in crowds and germ infested theatres. But we went to see an older move at off times with stadium seating. I think there were 10 of us all together to watch...Santa Clause 2. Sami was really good. She sat on my lap most of the time eating popcorn. It was fun to hear her gasp, or chuckle and the funny parts. At the end, she danced in the aisle during the credits.
Tuesday Sami went to play with the kids at Liz's house and in the evening played with daddy and grand dad.
Until next time...we are just being normal (and boring).
Friday, November 15, 2002 at 07:41 AM (CST)
Sami has had a busy week. Tuesday she went to visit her friends at Liz's house. Wednesday and Thursday her friend Krista was here to keep her busy. Thursday we went to Sami's friend Annalee's house. It was her brother Alex's 1st birthday and the kids played, sang Happy Birthday and ate cate.
Today Daddy took Sami to the farm where she'll play with Krista today. I'm sure they will have lots of fun. Daddy took her motorized car, baby and stroller, lots of food for Sami and special dog treats for Sassy and her friends.
It will be a lonely weekend with Daddy working. Sami and I will be out looking for trouble.
Give us a call.
Monday, November 11, 2002 at 01:55 PM (CST)
Sunday Sami went with Naz, Angali and Kabir to visit Amy's cat Zoe. Zoe was so glad for company. Afterwards they played next door. Mommy and Daddy got some chores done around the house.
Then it was such a beautiful day we couldn't stay in...so we took at trip to New Hope, PA to see Thomas the Tank Engine. Sami played with the trains, got a Thomas tatoo, visited the animals and rode on Thomas. What fun.
Check out the pictures!
Saturday, November 09, 2002 at 10:12 PM (CST)
Sami is doing fine, though a running nose all week kept us alittle closer to home and away from kids. It really didn't turn out to be much of a cold at all.
Daddy starting working this week so we really missed him. Especially his home cooked meals. Sami will be going back to her first sitter one day a week and Krista (our friend from the farm) will continue to come here the rest of the week. So far it is working out okay.
Today Daddy was working and the weather was wonderful,so Sami and I went to the park. There was a dog show going on. All breads competing on the jumps and tunnels and stuff. It is really fun to watch. And Sami loves to visit with all the dogs.
Of coarse we couldn't go to the park without a few trips down the slide and a swing on the baby and grow up swings.
Sunday and Monday we look forward to spending time with Daddy.
Saturday, November 02, 2002 at 11:01 PM (CST)
I know everyone is anixously awaiting an update and pictures. But Sami keeps us busy.
Last weekend, Grand Dad York and Granny Karan came to visit. They brought Sami a really nice bear from our friends at the Moose. Spinosa Bear is a healing and conforting bear. He has 12 audio tapes with inspiration and motiving themes. So far we have listened to the sleeping tape, sorry to say it isn't helping. Sami continues to go to sleep at 10:30 whether we start at 10 or 9...
Sunday my friend Stephanie and her daughter Nia came to visit. It is the first time Nia and Sami have seen each other since Sami was diagnosed May 2001. We took Nia to a farm in the area for a hay ride, pony ride, moon walk and lunch. Back at the house the girls played with the Thomas trains...though SAmi was not a good host. We caught her pulling the trains out of Nia's hands and running to hide the trains in the living room. We have to work on sharing. Though fun was had by all, I think Stephanie liked Wegmans the best.
Thursday was Halloween and to my surprised, Sami was not scared. She loved dressing up, wearing her "to to" balerina outfit all day. She went to her old babysitter's house Mary Lou and Liz...Wegmans and of coarse toured the neighborhood with Anjali and the gang.
This weekend, Grand Dad Gray is here. Gran Ga as she calls him. We enjoyed a quite afternoon at home playing and watching movies: Grinch (with Jim Carrey) and Mulan are this weeks favorites. Throw in some 102 dalmations and Toy Story and you know what we watch all the time.
Watch for new pictures...soon
Sandy
Tuesday, October 22, 2002 at 10:44 PM (CDT)
Hi Guys, Sami here,
Well, where do I start? Last week I did so much.
Last Sunday afternoon my Mommy and Daddy packed our car up with lots of stuff and said we were going for a long ride. We drove for about and hour and stopped off at a friends house, Cindy and George and daughters Erin and Meagan. They were having and Oktoberfest party. I had loads of fun playing with all the toys they had and all the other kids. It was really a neat party, I did not want to go, but my Mommy and Daddy said we needed to hit the road so it would not be too late when we got in tonight.
They were not kidding. We seemed to drive and drive and guess what, I did not want to miss one minute, I was awake for the 6 hour drive. We stayed at a very nice hotel. I missed my home, but this was nice, it had a refrigerator to keep my snacks cold and microwave to heat them up. My Mommy had to go to work on Monday and Tuesday for some meetings. I got to play with Dad all day. We watched movies and went out and had lots of fun. Tuesday night we had dinner at the Rain Forest with Mommys boss Julie. That was a lot of fun. She is very nice. She gave me some cool Thomas cards and a Thomas puzzle all the way from England. And then, I showed them all around the Mall.
Wednesday my Daddy packed the car up again and we went for another long drive to our friends Tom and Sues house. It took us about 5 hours to get there. Guess what I did? I was awake the whole trip, I did not sleep at all. We stopped off for lunch and I had some corn and string beans with some chicken nuggets. We got back in the car and it was raining very hard the rest of the trip. I was playing with Mommy in the back seat and was watching Barney, I love to have my TV in the car and watch my favorite shows. We got to Tom and Sues house around dinner time. They had all my favorite foods and snacks waiting there. How did Tom know I loved Kit Kat bars? I had fun showing off for them.
The next morning it was just my Mommy and Daddy and we went for a ride to Rochester, that is about 1 hours. They took me to this really fun place called the Strong Museum. It had the Sesame Street steps and door there, and lots of fun thing to do with Elmo and Big Bird. They had crafts so I was able to draw and make neat things. One of my favorite things was the Sami-sized Wegmans, (that is our grocery store). I had a shopping cart my size and I could go around and shop just like my Daddy and I do at the big Wegmans. There was even a cash register and a real scanner. I even knew what to do with the bar code and the scanner which surprised Mommy. Then we went and played in this old time kitchen. I wore an apron and cooked. I feed the babies and had tea with Mommy. Then it was time to eat lunch, I had fries with ketchup and a hot dog dipped in ketchup. And after that I got to go on a Merry-Go-Round and sit on a horse (baba). I hope my Mommy and Daddy take me back there, I had allot of fun there.
We went back to Tom and Sues house for dinner and after dinner we watched some movies. Oh yeah, I stayed awake all day no nap. It was so exciting. Everyone went to bed and I wanted to watch Santa Clause so my Mommy stayed up and we watched the movie together (till 11:30pm).
Friday we stayed around the house in the morning. Tom and Sue came home from work early and Michelle came over too. We all piled into the car and went to a farm to pick apples. This was so exciting to do. When we drove up to the orchard they had some small BaBas there (I call all horses Babas). I got to go on a ride and I was so excited I wanted to stay on it all day. But I had to get off, My Mommy and Daddy said I could ride him again. We went off to the orchard on a fun tractor ride. We walked through these trees and I was able to pick off some apples. My Daddy took off the skin for me and I was able to eat them right away. They were soooo good. We all filled our bags with apples and headed back on the tractor. The great thing was the ponies were still there and I was able to ride the Patches again. Of coarse, I did not want to leave, but it was dinner time. We went to this really neat Dinosaur bar-b-q restaurant. It was fun there, lots of people and good food and these ladies game me some tattoos I could put on my arm. Then we went back home to Tom and Sues house. I got to play with Michelle and watch some new movies. Oh Man then I had to go to bed, I was having so much fun.
Saturday morning came fast, Michelle came over and we all went to the Zoo. The weather was not so good, but I still had a great time. I got to see the monkeys and my favorite the elephants. And Oh Man the rain started up and we went inside to eat and then everyone said we had to leave, Oh Man I wanted to stay all day.well it was past 3 oclock. We started back to the house and it was a nice ride I closed my eyes for a minute and next thing you know I was asleep. When I woke we were all ready for dinner. After dinner I got to play and watch some movies.
Sunday morning we woke to the smell of fresh made waffles. They were so good. After breakfast we went of a walk and met some nice kids and a dog named Jazzy. Jazzy was so nice (almost as nice as Sassy). Then we watch some football. After the football my Daddy started to pack the car up for us to go home, Oh Man I was having so much fun I did not want to leave. Oh yeah thanks Michelle for teaching me the Wet Willy and Oh Man. We got everything in the car and hit the road. After 30 minutes I fell asleep. I think I slept for almost 2 hours and only work because we stopped for dinner. We got home around 8:30. While Mommy and Daddy unpacked the car, I went over to visit with Naz, Som, Anjali, and Kabir. I sure missed them last week. And back home I read some books with my Mommy and she sang me to sleep.
Thank you Julie for the wonderful Thomas gifts, I enjoyed the short time we had, maybe next time you can come over our house and play with my Thomas set and all the other things I have. And thank you Tom Sue for letting us stay at your very nice home and letting me have the run of it. And Oh Man thanks Michelle for the fun times and playing and bringing over the movies.
After this trip I think my Mommy and Daddy need a vacation, they seem very tired. I will try and write soon to let everyone know what I am up to.
And dont forget Dr. Don said that I am in REMISSION !!!!!!!!
Love to all of my Friends
Sami
Saturday, October 12, 2002 at 11:41 PM (CDT)
Busy with a whole lot of nothing.
Just enjoying life.
Check out Sami's 2 1/2 year old pictures.
Friday, October 04, 2002 at 09:34 PM (CDT)
REMISSION !
Finally we have heard the word that everyone is waiting for. Sami finished her protocol, and the last MIBG confirmed the past two: CLEAR SCAN.
Now Dan and I have posted Cancer Free since her Dec 2001 MIBG scan that showed no live cancer cells. But doctors have been reluctant to say the R word.
Sami will continue to be monitored with catscans every 3 months for the next year and 6 months after that.
No more batrium, no more meds. DONE.
The next cat scan and clinic visit is December 18, 2002. Our longest stretch between visits ever.
This was a long week of visits to CHOP. For those that don't know it is a 2 hour drive each way. And Sami ususally doesn't sleep.
Tuesday Sami had to go in for an MIBG injection. With her tubies gone over 6 months now, that meant getting an IV. It wasn't easy, but Helen got the IV in, the injection was delivered and we went home. We decided to leave the IV in till the next day for the SCAN. Sami came home with a no-no to protect it (a velcro cover - that she can remove herself by the way). But even though she didn't need to wear it all the time, she liked it and the stickers the nurse put on it and she won't let us take off her bracelet.
Wednesday we needed to arrive at 8am. We had Sami stay up late (11pm not hard to do for her) so when I picked her up out of bed at 6am, she would sleep on the drive to CHOP. Not an easy feet as she doesn't always sleep in the car. The challenge was not letting her eat or drink because when she got to CHOP, they had to put her to sleep for the 1 hour scan. All went well. Having the IV already in made it allot less stressful for all of us.
As expected, the scan gave false reading. IT was freighting the last time this happened, but we were prepared this time. Sami's Dr. Don actually ordered the scan 48 hours after the injection but Nuclear Med wouldn't allow it. I am still protesting this decision which made us return back ... and with the IV another day, no eating or drinking after midnight, what a pain. AND somewhere in here I need to work!
The drugs that put Sami to sleep make her wild and clumsy. She acts like she is drunk. And the effects last all day. Dan even lost his patience (which never happens) after about 3 hours he needed a break. I lasted about 2 hours but we all know I'm not as patience as he is. Then Naz and the kids: Anjali and Kabir helped to keep her busy and safe. It was a long day.
So back to CHOP we headed on Thursday. IT was decided since it was a 10 minute scan just to tape her to the table and let her watch a movie. Of coarse she cried the whole time, but the scan was fine and she wasn't drunk from the sleep drugs. They took the IV out and she still wanted to wear the no-no can you beleive it?
It was great that she wasn't all druged up because we went over to Clinic to find Zachary Doctor, Sami's boyfriend. Zach was in for his one year check up since transplant. He also got a clean report and was able to stop taking batrium. You go Zach!
Sami played with the toys at clinic, made some pictures with the art therapists and helped Zach through his check up. And when it came time for us to go, she wanted to stay.
Friday I took off work and Dan, Sami and I meet Karen, Brynne and Boone at the New Jersey State Aquarium in Camden. Yes, our 4th trip this week to the Philly area. But this was for fun and we didn't have to get up so early. Sami loved the fish and the puppet show. Brynne and Sami also played in the Children's Garden taking rides on the Carousel and Train. Even though the Hurricane Lily brought us clouds and a few rain drops it was fun.
This looks to be another busy weekend. We plan to have dinner on Saturday with the Cullen family: Eric, Lauren and Amanda. And Sunday Sami is double booked with a neighbor's 3 year old birthday party and baby Kaylee's baby shower.
Wish us luck...
Wednesday, September 25, 2002 at 01:39 PM (CDT)
Sami is a chatter box. Having fun, telling everyone what to do, going to bed at 10pm and sleeping in her own bed till 8am. Life is grand. She will finish up with the Batrium next week. No clinic appointments till December. Her next MIBG scan is Oct 2.
So on to more fun. Saturday we went to visit Aunt Dolores in the hospital. Sami made everyone smile, patients and nurses alike. Then off for some fun with our old time picture friends, Kathy and Evangeline. This was a real photo job for us as we took pictures of them around the lake, in the sand and on the play ground. Sami took a nap during the actual shoot but woke up intime to play on the slide and in the sand. We have been taking pictures of Evangeline since she was Sami's age and it was great to see her grow into a beautiful young women.
After the our visit we went to Cowtown Rodeo. The longest continuously running rodeo in the country. Yes here in New Jersey. It runs from Memorial Day to September. Sami loves all the horses "ba ba" she calls them because of her favorite horse at Skyview Farms...babababababad.
Sunday we went to brunch with our neighbors the Mitras Soem, Naz, Anjali, Kabir and Sachs: Larry, Jill, Amy and Michelle. Sami loved all the attention from the kids. And they ate good too.
Monday the weather finally got cool and not so humid that we can turn the air conditioning off. We have been enjoying the sunshine and 70 degree weather all week.
Sami is into watching full length movies these days. She can even sit through Toy Story I and II in one sitting. Tarzan is one of her favorites as well (I wonder why?) Those that know me, know I love Phil Collins and he wrote the music for the movie.
We are looking forward to see the Doctor's (Stuart, Dana, Kyle and Zachary) on Saturday for Zachary's year anniversary for this bone marrow transplant. It is a big celebration.
UPDATE: Great to see Zachary and all his family and friends on Saturday. Thanks for coming Ann and Carrie. Fun was had by all.
Sunday Sami and went to the farm to see Sassy, Baba and baby Kaylee.
Tuesday and Wednesday we will be at CHOP for MIBG injection and scan.
Thursday, September 19, 2002 at 10:35 PM (CDT)
Wednesday was Sami's last one month clinic appointment. Next time she has to return for a check up is in 3 MONTHS.
But in the meantime she has to go back to CHOP for some follow up tests. MIBG scheduled for Oct 2 and CT scan Dec 18.
And now what we have all been waiting for....weight 11.3 Kilos = 24 1/2 lbs. up more than a pound. And 83 cm - 32 1/2 inches up 3 cm (about an inch). Blood pressure, temp, labs are all normal.
Sami had a busy weekend. Saturday we were invited to a Hindu Wedding. It was so much fun getting dressed up in traditional Indian garments supplied by my friend and neighbor Naz (and family). Check out the pictures (soon). And a great experience to enjoy different culture's religion and way of live. We meet some nice people and we hope to get together with a few that live in the neighborhood.
Sunday we went to the farm to welcome home baby Kaylee Salerno. Sami loves to see the baby. She helped feed her a bottle and even got the chance to hold her. Of coarse she helped Tony feed and water the horses. She especially loved feeding them treats...carrots. Watch those fingers!
The neighbor kids are at school during the day, but Sami welcomes them home in the afternoon. She loves to play with Anjali (Na) and Kabir.
As we mentioned we went to CHOP on Wednesday. We began the day at the Philadelphia Zoo with the Breigs family...Sami's friend Brynee and her brother Boone (and mom Karen) meet us. After lunch they headed home and we headed to the hospital. But all went well and we were home for dinner.
Thursday Krista came to help out with Sami...or play with her. So Dan could get some errands done...while mommy worked of coarse.
This weekend we are planning to go to the Rodeo on Saturday and have brunch with our friends on Sunday.
Thanks for checking in with Sami as she moves on to the next stage of life.
Monday, September 09, 2002 at 02:30 PM (CDT)
Samantha is done her protocol.
No more hospitals, chemotherapy, stem cell rescues, radiation and medications.
Done!
The next steps...be a normal kid. Follow up CT and MIBG scans and normal clinic visits.
Wednesday, September 04, 2002 at 03:53 PM (CDT)
Sami had lots of appointments on the calendar and kept herself very busy for the last week of summer.
Monday as posted previously; she went to Sesame Place with Daddy to see Elmo.
Tuesday mommy took off and we joined Karen, Brynee and Boone for a trip to a natural history museum in Philadelphia. check out the pictures of Brynne and Sami in the dinosaur footprint.
Wednesday we drove into New York City for dinner to meet mommy's coworker Lina and surprise former coworkers Marge and Susie. Great to see you all. It has been far too long.
Thursday Dan had an appointment at night so Sami and I were on our own. We planned a shopping trip, but she fell asleep on the way to the mall (no nap during the day). So mom cleaned all night.
Saturday we went to the Poconos to visit friends: Robyn, Joe and 4 year old Zoe. Zoe has more toys than Sami! It was great fun.
Sunday was a quite day at home. It rained all day.
Monday was Labor Day and it rained or threatened to...though we continued on our plans to visit the Salerno's at the farm. Sami had a blast with the horses, dogs, cats and family.
We are excited this week as it is the last of her meds. Let us know if you are available to celebrate with us on Sunday.
Monday, August 26, 2002 at 09:39 AM (CDT)
Well time flys when you are having fun. I'm busy at work and Sami is busy at play.
Sami started her last round of Accutane on Sunday, Aug 25. After this she is completed with her protocol. MIBG scan is due in Oct or Nov and cat scans start every 3 months (yuk!). But no more meds, as a matter of fact she can stop Batrim a month after accutane.
So for the big news from clinic...Sami gains over 1lb! She was 10.1 kilos last month and she weighed in at 10.75 on Wednesday, Aug 21. Height was the same 80cm and all other stats were good. We were in and out of clinic so fast we didn't even get the blood results, but we know they are all normal. Yes, even the preg test. That was the last one.
After clinic we meet up with Colby's parents and brother Cameron (the Cole family). We all went to Zachary's house to play with his parents and brother Kyle (the Doctor's). Yes, Sami and 4 boys. She held her own. Played and ate and lived it up all day without a nap.
Friday night we had a quick visit from some long time friends from Florida, the Brown's. Sami was an impeccable host offering to show the family around the house and opened the refrigerator to serve everyone drinks. It was great to see you James, Cathy, David and Rebecca and to meet you family.
We went to Baltimore this weekend to see Grand Dad York. Mommy had crabs of coarse and Sami ate a lot as well. She takes after the mom since dad doesn't eat them.
Dan is off with Sami to Sesame Place to visit Elmo today. She is meeting up with some friends twins David and Gabriella.
+++++UPDATE Aug 26 11:45am from Sesame Place by cell phone. Sami is upset. She only saw the last few minutes of Elmo's play and she didn't get enough. Luckily Dan says his next performance is in an hour. The twins (almost 4 years old) are in the water with Lori and Dan stepped into a shop to cool off and divert Sami's attention until Elmo starts again at 12:15pm. The Sesame Street parade starts at 2pm. Next call from Dan....Sami continued to watch ELMO 4 times and even meet a boy at the last one and talked him into dancing. Then she walked out with him hand in hand.
They got home at 7pm. Dan said they never did catch back up with Lori and the twins. Sami had a blast!
Sandy
Monday, August 12, 2002 at 08:22 AM (CDT)
Another uneventful week of a two year old.
Sami is great. Finished her 5th round of Accutane. Just one more to go.
Tuesday our neighbors came home from a 2 month vacation. Sami was so happy to see Na (Anjali) and Kabir. But she is still upset that Sprinkles and Cinnamin the hamsters went home. She went over to visit every day.
Saturday the Doctor's came for a visit. Dan made enough food for a party of 20 instead of 2. Dana and Stu were amazed at all the food. The kids didn't eat much. Nothing unusal about that. There is so much new to see and do. Sami did better than expected (but not great) sharing her toys, especially the Thomas trains. They all went swimming and fun was had by all. Though Sami is abit confused now with potty training. She doesn't understand why she can't stand up like Zachary. Great to see you Zachary and Kyle. Next time we come to your house.
Sunday we had a nice visit from some friends Michelle and Jen from Syarcuse. Sami showed off nicely demonstrating all her toys and clothes. It was very relaxing
Dan will post the new pictures later today.
Sandy
Tuesday, August 06, 2002 at 11:52 AM (CDT)
Sami had a blast at the Hamletonian last week. Check out the picture of her at Meadowlands watching the harness horse racing. She called all the horses "ba ba." The name of one of Carol's horses. But ba ba wasn't racing.
The Hamletonian race was actually on Saturday. We choose to go Thursday night because it is less crowed, at night so not so hot, and it was the first day of the kiddy rides. Only problem, Sami was too short to get on the rides. She wanted to get on the train so bad. No adults were allowed so she would have to go alone. Finally the person in charge said if another child that was older would get on with her, she could ride. I didn't think she would do it. Get on without me, with a total stranger. Well she did it and loved it. She would have gone again and again, but the older kid did not.
Friday, Krista came to help out with Sami. We are hoping when Dan goes back to work, Krista will be able to babysit for us. She is going to college this year at Raritan Valley just a few minutes from our house.
Saturday Jack and the Wiley bunch came up for a visit. Sami had a great time with her cousins that she calls the "boys" David, Jordan and John. Of coarse we ATE, played and swam.
Sunday we took the boys to the farm to see all the horses. It was so hot ! We took a swim in Betty's pool. Though she was still on vacation (coming home tonight, yea).
Monday was another hot day so we stayed inside and played.
Today, Tuesday is great. The sun is out, but it is windy and alot cooler than it has been. Sami has been playing outside. And enjoying her neighbors, Anjali (formally known as Na) and Kabir that just returned home from a 6 week vacation. Sadly the hamsters Sprinkles and Cinnamin will be going back home.
This is the last week of accutane 5th round. Looks like a busy week of visiting and company. I'll try to update before the end of the weekend.
Sandy
Wednesday, July 31, 2002 at 04:14 PM (CDT)
Well the days fly by, just a normal two year old life.
Friday night we visited some friends with a set of twins: John and Emily. Sami loved playing with the babies and their toys. She even got a chance to feed Emily a bottle.
Saturday was humid which didn't make for a good balloon day. The annual balloon festivale was in town and we attended our friends: Eric, Lauren and Amanda's party. This year they didn't fly over the house, but we could see them from a distance. But becacuse of the hazy, not good for pictures. Sami had fun on the swings and playing games with all the kids.
Sunday Sami started back on Accutane. This is the 5th round of 6. Can't wait till it is over. She still takes it with not problems hiden in the italian ice that she loves so much. Funny thing though, we get her all ready with the ice ice baby song, she eats the bit with the meds and that is it. We think she knows and she is just humoring us.
Sunday was also Aunt Arlene's birthday. She came over to spend the day. It was relaxing and we had very nice surprise for her. I invited two of her friends as a surprise: Joan and Carol. Dan made a wonderful meal.
Monday we set up Sami's new Thomas the Tank Engine table, track and trains. She is having a great time inside which is good for us since it is so hot and humid out.
Wednesday, July 24, 2002 at 11:14 PM (CDT)
Clinic Day.
Not such an early day, no rush, we left at 10 and arrived about 11:30. We went to 3East to visit Jackie. Marie and Anne were off today. We shocked some of the other nurses that have taken care of Sami and followed her process. It has been a month since our last visit and some haven't seen her in months. Is talking, walking, filling out and she has a full head of hair! Something that many of the nurses never saw before.
Sami played and Dan and I ate lunch. Then at 12:30 we went to clinic, signed in and found that Catie was there waiting for us. She had an MRI in the morning and was recovering from being put to sleep. She is going back to Sloan Aug 8th for another surgery to hopefully put an end this Neuroblastoma. She looks great! (Dan will post some pictures later)
So the moment we had been waiting for: the height, disappointing the same 80cm, but the weight, up another 2/10 of kilo to 10.3. Hey it is progress. Blood pressures and temps all normal. We didn't get the blood results back before we left, but we are all sure the pregnancy test was negative and CBC what fine. We were on our way to the Zoo by 2pm. Pretty quick for clinic. Next visit in one month.
It was a nice day for us. Not too sunny or too hot. Sami was tired, but we ventured on to see the Elephants, Lions and Ducks (her favorites) we saw some others along the way. It was great fun. And she was asleep by the time we got on the highway at 4:30.
When we got home, Sami and I took a walk and Dan made dinner. After dinner we all took a dip in the hot tub. Sami was teaching her baby how to go under the water, yet she is quite ready herself.
Then a few books and bed by 9:30.
Great Day!
Sandy
Tuesday, July 23, 2002 at 03:02 PM (CDT)
Friday Sami had a play date with her friends Brynne and Annalee.
We had a quite weekend at home. We did a little shopping, cleaned and relaxed in the pool.
Monday we went to the Farm. Sami got to play with her friend Sassy (Joey and Patches too). Her favorite horse these days is Ba Ba. I think because it is easy to say.
Sami loves the water, swimming in Betty's big pool.
Wednesday we go to CHOP for routine monthly blood tests and exam. I'll update later in the week.
Sandy
Wednesday, July 17, 2002 at 09:00 PM (CDT)
What a great weekend. Packed full of fun. Glad I updated last week before we left because there is a lot to tell you.
Saturday we drove to Maryland for a 40th birthday party for our friends Michelle and Tim. It actually their birthdays arent for another six months. And if I have my way, they will join me in the 39 club and not actually turn 40. It was a great weather day, not too hot or sunny. That is great for Sami. She had a blast playing with her new friends. She especially liked Mics good friend, Sheri. Sami would even leaving my arms to go to her. Sheri, let us know when you want to babysit.
Sunday we took off early for the eastern shore. It was Kids Kruise Day. A special event for sick children like Sami. A Yacht Club in Georgetown, Maryland sponsored a day for the kids to enjoy lunch, a cruise and swimming. There was a comedy magic show and ice cream. We got the chance to cruise with a wonderful host family: Jim and Nancy. Their 60 foot yacht was spectacular. Our guests included two other families with children that are also being treated at CHOP. We had a lot to compare and offer suggestions. It was great to meet you all. Wish all the kids the best.
Sami took a quick hour nap in the car while riding back to the hotel. But she woke up on the transfer from the car to hotel. Too much to see at the hotel, not like home. And then the best for mommy, we went to dinner at Wet Willys a local crab house. The steamed crabs were running small, but tasty. Sami loved eating the crab meat right out of the claw. She wouldnt eat the lump meat I sat in front of her. Anyone that eats crabs knows that it is time consuming. So when Sami got tired of sitting, Dan walked with her around the deck, playing hide and seek and visiting with the restaurant guests. I was able to relax and eat. It was heaven.
After dinner we went to see our friends from high school Steve and Dawn and two of their three children were home, Steven and Danielle. Danielle (just 3 months younger) and Sami are best friends. Dawn and Danielle came up last month for a visit. The two played, fought over toys, ate and wrestled together until they both were falling asleep. But can you believe Sami didnt fall asleep on the ride to the hotel. Up all day, with all that excitement and she didnt go to bed till 10:30pm.
Monday we headed home, but took a detour to Atlantic City, New Jersey. There was a photo trade show going on so we stopped in to see some friends, Dan to do some networking and see some new products. Everyone was happy to see Sami looking so good. It was great to see, Bob, Frank, Paul, Nick, Ellen and all the shutterbug friends.
After the show, it was about 4-4:30 when we were about to head home in traffic. Then we figured, we are this far, we should really take Sami to the ocean. So off we went to the Ballys beach. Sami played in the sand and waded in the Atlantic Ocean for the first time. It was wonderful watching her expressions as the water came into shore and got her toes wet. Twice the waves knocked her down, but we laughed and she was fine. Though she agreed with me that sand is yuk!
We got changed, walked the boardwalk and ate dinner. About 8pm we headed home. Thinking that she would fall asleep by the time we got to the highway, WRONG! She didnt fall asleep till we got 10 minutes from home. But she slept all night.
Sandy
Friday, July 12, 2002 at 11:03 AM (CDT)
Sami is doing great. One more day of acutane, yea! Then off for two weeks until we start the next round.
Sami has had a busy week with Daddy.
Monday we had friends from California: Marty, Stacy, Cali and Paige come to visit. We learned that Paige is a train and dog fan as well. So Sami and Paige (also 2 years old) got along great. We went to the Crayola Factory. It is a kids museum. They watched crayons get made, colored, pasted, painted and more. Fun was held by kids and adults alike. It was great to see you guys. Let us know when we can come see the new baby.
Tuesday after work we went to Old Navy and bought Sami (she picked them out) a new pair of sandels. YELLOW. Her favorite color these days. Then we went to Zanny Brainy to check out the Thomas the Tank Engine equipment. We are thinking about getting her some because she likes them so much.
Wednesday we went to our friend Carol and Rick's house after dinner. They have a nice pool. We took a quick swim but the air was cool so we lit a fire and enjoyed some snacks.
Thursday Sami spent the day at the farm. Daddy came home and did some work on resumes (still looking for the right job). Betty and Carol followed Sami as she wanted to tour every inch of the farm. She played with her pals Sassy and Joe (the dogs), hunted for meows (cats), and feed the horses. She waved to all the people working at the farm, including Tom, Tony, Shauna and Pat. She thought about getting on the tracker with Pat, but when she got close she changed her mind. Krista and Steve played hide and go seek and Sami laughed at the exitement her finding them. Mom and Dad enjoyed a productive day and nice relaxing dinner.
It will be a busy weekend. We will update on Tuesday.
Sandy
Tuesday, July 09, 2002 at 02:40 PM (CDT)
Well, it continues to get harder to keep up with Sami's activities. At least Dan keeps you all in pictures. You can tell your own story.
Sami started her 4th round of Accutane. Remember it is twice a day for two weeks. Then two weeks off for a total of six months. We have to be very careful about her in the sun, sunscreen, hats, covered as much as possible. In addition, the Accutane's effects get worse each time. Mostly dry skin that she scratches and makes sores. So I try to put lotion on her several times a day. But that is it. No sickness. She has been having running nose which we attribute to her last 2 year molar coming through. Other than that she is eating GREAT!
Lets see, last Sunday we went to Mike and Laurie's to get into Nicole's big pool. Sami had so much fun. It turned into an imprompto barbeque with their friend Natiale visiting from the UK, Laurie's parents, sister and brother in law. It was great to see you all. Sami of coarse loved all the dogs: Spencer, Chelsea and Scooter. Tuesday Sami played with her friend Annalee which I neglected to take the camera (bad me...Dan stayed home can you tell) and I don't even remember what else we did during the week. It was too hot to do much. Temperatures are hitting 100 degrees.
Thursday our normal 4th of July block party retreated to a neighbor's house for air conditioning. We did go down the end of the block to watch the fireworks. It was a great display. Sami ooohhh and ahhhhed...
Friday we went to visit a former amex friend, Maria. You notice how all our friends have pools, how nice. Maria, AJ and Anthony (a few months younger than Sami) welcomed us to steaks on the barbeque. We got to enjoy Maria's parents and sister's company as well. We had fun swimming, eating and running after the kids. Don't you just love Anthony's red hair? I couldn't get over how long it was. Because of the curls you didn't notice really how long until his hair got went and it laid between his shoulder blades. How cute.
Saturday and Sunday we relaxed at home. Enjoyed Sami's company. Straighten up the house. Organized pictures. And just hung out. It was great not to be rushed to a schedule.
Stay tuned to next week as we have pictures from Sami's visit with her friend from the west coast, Paige.
Sandy
Tuesday, June 25, 2002 at 08:56 AM (CDT)
Update, June 26, 2002. Clinic appointment results. Sami is doing great, all blood work is normal (yes the pregnancy test was negative). Sami gained 1/10 of a kilo, so she is still 22 lbs. BUT Sami grew 2 cm about 3/4. So for all of those that keep telling me that she looks talker, you are right. Next appointment July 24. Next MIBG scan Oct or Nov after she finished Accutane oral meds.
Star Ledger link http://www.nj.com/news/ledger/somerset/index.ssf?/base/news-0/102499620756270.xml
Well, Sami continues to be a social butterfly. I can't keep up with all her activities. I should write a diary each day because at the end of the week I start to dread the website updates because I can't remember everything. Luckily Dan documents everything on the digital camera.
June 16th, Sunday...Father's Day. Dan picked our activities. He choose to go see the Kelsey Run. It is a motorcycle ride fundraiser to a fellow Neuroblastoma child. They had all kinds of food and activities for the kids. Kelsey was diagnosed with Neuroblastoma about 8 years ago when she was Sami's age. She has since recovered (like Sami) and lives a normal life. She is 10, very mature and beautiful. A great role model for Sami. Check out the pictures. Kesley is holding Sami.
Sami got brave for the first time went into the big cage to bounce. There was no one in there so it wasn't so intimidating for her. But as she got more comfortable, others came in and she did great. In the past, as with the relay for life, Sami bounced on the outside always wanting to go in but scared. Not anymore.
Monday Sami walked Na to the school bus and took an unusual early nap. She had her interview with the Star Ledger for a feature article to hit the papers soon. But Sami slept through it. Probably for the best. They came and took pictures on Wednesday in which she was awake and a complete ham or was it "cheese."
Thursday we went to see Zachary and his family Dana, Stuart and Kyle. Sami had a blast! Check out the pictures. Don't these cancer kids look great? Can't even tell. They are just normal two year olds now. Can't wait to come back.
Friday, I had to go to New York for business meeting. Sami came in the afternoon to meet all my coworkers and friends. After she woke up from her nap in the car (yes, unusual as it was)...she was making herself at home inspecting all the cubicles. Check out the pictures...a few of the coworkers are pictured: Julie, Marcia, Lorig, Donna, Wilhelmina and Pat. Thanks for the warm welcome and encouragement. It was great to see you all.
After work we went to the South Street Sea Port for dinner. Sami's cousin Angela who lives in the city came to visit.
Saturday we went to the American Cancer Societies Family Day in Philadelphia. It was a nice fun day for Sami with activities for even her age like face painting, arts & crafts, throw the ball in the potty (I didn't like this game much, luckily she didn't go home and do the same, yet), but her favorite of coarse was jumping in the cage. This time it was designed for older kids. No net for me to keep an eye on her. The big kids were too rough. Luckily an 11 year old girl became friends with Sami and helped her climb up the ladder, down the slide...all in the bouncing thing. I don't know what they call those things. We all got our palms read and Sami's was very strong and good.
Sunday we went to the farm to celebrate Krista's high school graduation. Sami had loads of fun in the pool and playing with her favorite dog, Sassy.
We had too many pictures to post so Dan will be changing them mid week.
Post your comments, questions on the guest book. It has been a bit slow lately. We check every day. Thanks,
Sandy, Dan and Sami
Saturday, June 15, 2002 at 09:48 PM (CDT)
What a great week we had with Sami. It was our first vacation that we planned for Sami.
Monday we rented an RV and traveled to Strasburg, PA to see Thomas the Tank Engine.
It was alot of fun. Sami is really into trains. We we took pictures as you will see and rode the train. We spent the mornings on Tuesday and Wednesday at the train station enjoying the Thomas activities.
Wednesday afternoon we went to Hershey. We meet up with cousin Brooks and grand dad Jack. Thursday we headed back home. Back to the routine on Friday.
Saturday we had two fun appointments on Sami's social calendar. First a stop to see our friends from the Songs for Sami Benefit, the Waters family: Keith Wilhemina, Krystal and Kristina. Sami had a wonderful time. Thanks for the custom bear, Sami loves it. We will make it back soon when the weather is warmer for a swim. Then on to Johnny's 8th grade graduation party with the Novak family. Always fun and lots of food. Sami enjoyed all the attention.
This week continues to be busy. I will update next weekend.
Saturday, June 08, 2002 at 10:14 PM (CDT)
Wow, the Relay for Life was fun.
Everyone should go next year. We can have our own team, camp out and walk all night. Looked like alot of fun.
Loads of money was raised for American Cancer Society. More than their goal and almost twice as much as last year.
Watch for the Courier News (www.courier.com) for an article about all the survivors.
Sami enjoyed the walk with all the survivors. She was the honoree. Her name was announced and she was walking the stands so I had to hold her up for everyone to see. She was so special, it was great. Aunt Arlene, Stacy, Liz, Alyssa, Esther and her daughter, Grand Dad Jack and Steven were all there to support Sami, Mom and Dad.
Sami made friends everywhere. I think she had the most fun with the girl scouts blowing bubbles. She loves the pasta, cake and carrot person's grape tomatoes.
We stayed till the luminary lighting. But it was getting late and it was way past Sami's bedtime. She didn't get to sleep till 11:30pm. And she was the first one up at 7:30am. We went to the closing ceremonies at 9:30am on Saturday.
Dan will post the pictures soon.
********THE PICTURES ARE UP******************
Monday, June 03, 2002 at 11:35 PM (CDT)
Hi everyone, Sami here
What a weekend we had. Friday I went over my friend Brynnes house. Her mommy is going to have a baby very soon. Brynne will have a new brother any day. And best of all she has a new swing set and slide. We got to play and try it all out. I was her first guest. It was so much fun to go down the slide and go real high on the swings. We even ate dinner there. I ate lots of stuff. I even ate a little chicken, which I never like at home.
After dinner we played, and while Brynne and I were checking out the potty a bad storm came over her house with thunder and lightning. To be honest we didnt even realize it until the lights went out and Brynne and I were in the bathroom, all alone, in the dark. I couldnt see my mommy and we both cried till her daddy got the flashlight. Once the lights came back on we went downstairs to play in her new playroom in the basement. We made some pasta in the kitchen and jumped in the jumpalina. I was so tired when we went to go home I fell asleep as soon as we turned the corner on the way home.
Then Saturday we had some company. One of my mommys friends from school came up from Baltimore and brought her daughter Danielle who is also 2, to play for the weekend. We had so much fun I dont know where to begin. We played outside on my new picnic table with the play dough, and had lots to eat. We played with I think almost all of my toys inside and then when you thought we couldnt do any more we went to the park and played on the slides and swings. My mommy and Ms Dawn even got on the swings with us. Looks like they had a great time too on the swing. And guess what else they got to stay the night. So when I woke up in the morning they were still here and we got to play some more. After breakfast we played and played and played. We played so hard I was so tired I had to take a nap.
When I woke up my mommy said it was time to see Sassy. Ms Dawn and Danielle packed up their things and drove home to Baltimore. My daddy and mommy drove me to the Salerno Farm to see Sassy. She is my favorite, but Joey and Patches were there too. My mommy played stamping with Betty, Carol, Shauna, Laurie, Betty Boo and Vicky.
Check out the pictures, my daddy worked real hard trying to get them all on for you to see my playing.
Dont forget to come see me or send your donations for Relay for Life, June 7 at 6pm.
Love, Sami
RELAY FOR LIFE Details....
Join us June 7th at 6pm for Relay for Life in Clinton, NJ. Samantha is the honorary cancer survivor to walk or stroll the first lap (along with many others). This year caretakers will be asked to join the survivors on their walk.
Would you like to honor a loved one who has survived cancer or been lost to cancer? Here is an opportunity to purchase a Luminaria that will be displayed at Relay for Life during the candle-lighting Luminaria Ceremoney. Luminaries are laid out alongside the track and burn through the night to light the path of Hope. Each Luminary is a donation of $10. Send your name, phone and address along with the name of the individual in honor of or in memory of to me at gray56@optonline.net so I can get your loved ones name to the committee on time. Then send your donations to: American Cancer Society, c/o Sandy Gray, 56 Huntley Way, Bridgewater, NJ 08807
Survivors of all ages will walk around the North Hunterdon High School track in a victory lap and friends will honor loved ones lost to the disease in an evening candlelight vigil. The overnight event joins teams of 8 to 15 people who camp out at community sites and take turns circling a track or path to raise awareness and funds to support cancer research, education, advocacy and patient services in the community. This year, the event will be held at North Hunterdon High School and will run from 6 p.m. on Friday, June 7 to 10 a.m. on Saturday, June 8, 2002.
To find out more about Relay For Life in your community, call 1-800-ACS-2345, or visit the American Cancer Society website at www.cancer.org.
Thursday, May 30, 2002 at 10:31 PM (CDT)
Join us June 7th at 6pm for Relay for Life in Clinton, NJ. Samantha is the honorary cancer survivor to walk or stroll the first lap (along with many others). This year caretakers will be asked to join the survivors on their walk.
Would you like to honor a loved one who has survived cancer or been lost to cancer? Here is an opportunity to purchase a Luminaria that will be displayed at Relay for Life during the candle-lighting Luminaria Ceremoney. Luminaries are laid out alongside the track and burn through the night to light the path of Hope. Each Luminary is a donation of $10. Send your name, phone and address along with the name of the individual in honor of or in memory of to me at gray56@optonline.net so I can get your loved ones name to the committee on time. Then send your donations to: American Cancer Society, c/o Sandy Gray, 56 Huntley Way, Bridgewater, NJ 08807
Survivors of all ages will walk around the North Hunterdon High School track in a victory lap and friends will honor loved ones lost to the disease in an evening candlelight vigil. The overnight event joins teams of 8 to 15 people who camp out at community sites and take turns circling a track or path to raise awareness and funds to support cancer research, education, advocacy and patient services in the community. This year, the event will be held at North Hunterdon High School and will run from 6 p.m. on Friday, June 7 to 10 a.m. on Saturday, June 8, 2002.
To find out more about Relay For Life in your community, call 1-800-ACS-2345, or visit the American Cancer Society website at www.cancer.org.
May 29, 2002
Wednesday was Samis general clinic visit. No special tests, just the normal CBC, check the liver functions (due to the Acutane) and yes, her pregnancy test. Yes, we are proud that the test was negative. No, I have been told that people thing we are kidding. It is FDA regulations that ANY female taking acutane must get a negative pregnancy test each month before a prescription could be filled.
Now a drum rollSami broke the 10 K mark finally. That is equivalent to 22 lbs. We are going to move her back up to size 4 diapers. Her height is still the same at 78 cm, about 31 1/2 inches. All other routine checks were normal. Next clinic visit is not till next month, June 26. YEA!
We were a bit stressed at the wait at clinic because we had a full day of visiting planned. The good news is because we were waiting around we saw some great onco kids from 3 east that have also been home and came in for routine exams. It was great to see them with HAIRJacob, Sean, and Joey. Check out the picture of Sami trying to push Joey (a fellow Neuroblastoma friend).
After clinic we went to Ronald McDonald House to see baby Alivia. She was discharged from transplant last week. Because she lives so far away she needs to stay at the house just a few blocks from CHOP incase of fever. The good news is that she is doing GREAT. Looks wonderful as you can see from the pictures. She is eating, but with all the meds the ng tube is a must. Remember she is post transplant so we all had to wear masks, including Sami. But she is a pro at that.
Then we were on to another onco families home. We visited our good friend Kelly and her family. Her mom and dad made us feel at home. Sami loved playing with Kelly of coarse , but her sister Mary became her best slide buddy. Along the way, Sami made herself at home with the neighbors swing set, balls, kiddy poolyou name it. Check out the pictures as she directs the kids. They just kept coming.
Thursday, Sami and I went to visit our good friends Annalee, Alex and Marie. Sami loves playing with baby Alex. She is gentle and patient, though she likes to give him too many toys at once. Annalee and Sami did their best to share. And Sami taught her the great tastes of pretzels with peanut butter, lucky charms cereal marsches as Annalee called it, and Oreo cookies.
This weekend we expect a play date for Sami from Baltimore. More on the details later.
Monday, May 27, 2002 at 01:14 PM (CDT)
Well, the weeks seem to fly by. Dan has been taking care of Sami for 2 months now. And he takes care of me too, making me breakfast, lunch and dinner. I'm not doing so well on my diet though. I have been working normal hours with my job. And things are going very well.
Sami continues to amaze us. She is a busy toddler, playing and socializing with her friends.
Sami is eating great. Her appointment with the feeding clinic, which I scheduled in March when she wasn't eating, was May 22. We expected that they would see her eat and send us home. But we were disappointed, they have asked us to try somethings and come back in a month. So far we haven't put alot of heart in the suggestions and the ones we have, haven't worked. She is doing better on her own. last week she picked out the Diaminals drinkable yogurts, which she drinks 1-2 a day. That's some dairy for ya. And she has a new love, Moma's ice cream.
Friday we had guests come to visit Sami. Our friend Dana and her sons Kyle and Zachary came for lunch and a play date with Sami. Zachary is a JMML survivor. He was in transplant the month before Sami. They played like normal two year olds, as Dan feed Dana and I like queens. It was great fun.
Saturday we went to a graduation party. Lot of boys for Sami to play with. It was the first time we have ever seen her dirty. She played with trucks, went down slides and rough housed with the kids. No nap and a day of fun, she was asleep 10 minutes on the road to home. That was 6:30pm and she slept the whole way home. When we got home she asked to go nite-nite. I put her to bed and she slept until 6am the next morning. It was great.
Sunday we went to Joey's 3 year old birthday party. Joey is Sami's god father's son. Again a party full of boys. But she didn't care, she played with the cars and balls, swinged and slided, and the most fun rode as a passenger in Joey's new jeep.
Monday is quite. We had some friends over for graduation pictures. Sami helped and even joined in for a few. We plan to have a private barbeque just the three of us and relax.
This week we go back to clinic for a routine blood tests (yes and the pregnancy test). She starts Acutane again June 2.
Sandy
Tuesday, May 21, 2002 at 10:20 PM (CDT)
Hi Guys, Sami here
Wow what a weekend we had. It started out Friday afternoon I went to visit my friend Carol at the doctors office. Carol is from the Salerno Farm where my favorite doggie Sassy lives. I had fun meeting all of Carols friends that she works with and I got to play in their special play area.
Then late Friday night my Mommy and Daddy took me for a drive. After a while my mommy said it was night-night time and I went to sleep. I woke up a little as she was taking me in a house, but I was so tired I went back to sleep. Well when I woke up Saturday morning, I was so surprised to see that I was at my Gram Grams house in Baltimore. It was great I got to play with Gram Gram and Granny for a while and then a friend of my mommys named Carol stopped by with her 2 kids Charlene and Denny.. We played my favorite, doggies. I had them walking around on their hands and knees like dogs. I told them to lay on the floor and play night-night. Then we had lunch together. It was so exciting. I hated to get tired and go to sleep, but I had to. When I woke my Mommy and Daddy took me over to see my cousins: Steven, David, Jordan and John at Aunt Dottie and Uncle Bobs house. Then my Grand Dad and Aunt Diane came over to the Wiley house too. We all went out to a restaurant called Cactus Willies for dinner. No one could believe all I ate. After dinner we went back to the Wileys and I got to play with the boys for a while. Then I had to go because it was getting late. We went back to Gram Grams house to sleep and I was so excited didnt want to go to sleep so I played more with Gram Gram and Granny.
Sunday, I got up and played around Gram Grams house and a friend from the neighborhood, Sadie stopped by just to see me. She brought me this really nice Doll named Kelly. I was playing for a long time and tired myself out and took a nap. When I got up my Mommy and Daddy took me out. We went to visit my Mommys friend Donna and her family. They have a doggie named Taz. They let me play and feed Taz. It was also fun playing with Donnas daughter Christina. She had fun to and she wanted me to come live with them. Maybe next time I can visit with Christina some more. I got to meet a lot of nice people there like Donnas brother who gave me a train whistle and her parents. That was a busy house so many people running in and out. My mom said that is why she always liked it there. I didnt catch all there names, but there was a cute boy I liked that was real cool with sun glasses on. Well, everyone had to go home so we left too. We drove over to my mommys friend Lons house and it was so much fun. He has 2 doggies and a little girl, Meagan. We played on her slide. Lon and my Daddy put this really cool table picnic table in our truck to take home. Thanks Meagan. Well then we had to leave, I did not want to go, but we had to. I was also getting hungry so was my Mommy and Daddy. After dinner we went by the Church that my cousins go to. The Service was ending and the people were coming out. We were there to surprise them. My cousin John didnt even notice me at first. But lots of other people did. They all said they were praying for me to get better. And look, I did. THANKS.
Monday, we were still in Baltimore and I never would have guessed it, but after I ate my Lucky Charms cereal, my Mommy and Daddy took me to the Baltimore Zoo. We met Grand Dad Gray and the Wiley boys there. I got to see all kinds of animals, yes even my favorite elephants. I got to ride on a Choo-Choo train, and I got to sit on an elephant on a Merry-Go-Round. It was great playing and seeing so many new and fun things. Then the next thing I remember was getting in my car seat. My mommy said I was sound asleep before we even got to the highway. I slept almost the whole way home. And that is a 3 hour drive.
Check out all the new pictures of my friends and me.
Love, Sami
Friday, May 17, 2002 at 04:07 PM (CDT)
Moving on...
We are past the anniversary, and moving on to the future. Leaving behind cancer. As always we continue to live and enjoy each moment...one day at a time.
No more hospital stays, chemo and radition. A few oral meds and follow up blood tests and scans. Normal routine.
Sami is doing great. She loves being with her daddy all day. They have ventured off together and have experienced things that they both grown from. It is a special bond.
And there is always MOMA...Always ready for a hug and lots of kisses. I take breaks during my work day to have lunch and take a nap with Sami.
Sami's best friend these days is "Na" Actually it is Anjali our 10 year old neighbor next door. Naz is her mother and our wonderful friend. We tell Sami we are going to Naz and she says Na. And she calls the whole family Na.
This week Anjali's dad was busy so we had the family over for dinner and helped in the morning getting them off on the school bus. Sami thought this was great, eating breakfast with Na and walking her to the bus stop. Each day when Sami wakes up from her nap she asks for Na. Na is so patient and good with Sami. They play for hours.
We had a surprise visit from Sami's "baby group" buddy, Annalee. She introduced Sami to her new baby brother, Alex who isn't so new anymore at 6 months and 18lbs. See the photos attached. Great to see you Marie.
Hope to have more photos and updates on Tuesday.
Loves, Sandy, Dan and Sami
Sunday, May 12, 2002 at 09:51 PM (CDT)
This week marks the one-year anniversary of Sami's diagnoses. It has been a tough month of remembering how it all began. The signs we missed and the horror of the news. But look how far she has come.
This week we have posted a picture of Sami from May 11, 2001. Sami was at daycare and Liz was helping the kids make presents for Mother's Day. Her shirt was off so she didn't get paint on her clothes. Sami liked the finger paints so much that she proceeded to color herself blue. And I had to explain at each doctor's visit that the blue was not a symptom, but just blue paint that didn't wash away so easily. Note her distended abdomen, swollen legs and arms. She weighed 24 lbs.
The next picture is of Sami May 12, 2002. Now you can see the large scar running horizontal across her abdomen. All the swelling is gone and she is finally picking up some weight. You'll also notice that she has the same smile. BUT even bigger today. She is healthy and happy. Weighing 20 lbs.
Thank GOD.
This is a quiet week. No visits to doctors. No lab tests. Not a single doctor, business or personal appointment on the schedule.
Visitors are encouraged.
Love, Dan, Sandy and Samantha
Wednesday, May 08, 2002 at 10:54 PM (CDT)
Test Results are in
It was the first time we went to a local outpatient lab for a blood test. Without her central line we now have to do needle sticks. Sami is a hard one to get blood from. She has tiny veins. It took two sticks to get enough for the CBC. Of coarse she cried and put up a fuss until the needle went in. Then she says owww, stops crying and watches the nurse get the blood. She got stickers and we left right away (we visited before the blood draw with our friends at the lab and office in Flemington: Darlene, Kathy, Patty, and our nurse friends that drew her blood - thanks).
Samis reward for being a good girl, we went right to the store for Oreo cookies. She saw an empty bag in the car and wanted some so Dan pulled in the first convenience store.
Oh, and the blood test results we got today were EXCELLENT, ANC 3,712, HBG 11.9 and White count 6.4. The platelets 244 have been normal for weeks. With numbers this good we won't need another stick till May 29th clinic visit at CHOP.
Sami's cat scan was exciting as well 30% reduction. Most people worry before, during and after routine cat scans. And some of you are more nervous then us and keep bugging me for the results. But Dan and I knew this was just one more step to exit the "treatment stage" and get to the "monitor stage." This scan was to see where all this treatment has gotten Sami. A baseline in affect so as we go forward we can make sure there is no change. Sami will be tested and scanned the rest of her life. But we know that she will be fine.
Remember, all the live tumor is gone. Yes, some dead tumor was left because the doctor could not get it all in surgery without risking her life. But since the last scan in December, the dead tumor has reduced 30%! This was due to the last stem cell transplant and radiation.
This is how we look at it. There is live growing tumor and then there is dead tumor. The chemo killed the tumor. What is left is just a benign mass (dead tumor). But we monitor it so that if by chance there was one cell that was still floundering that the MIGB has missed, we will catch it with monitoring cat scans. But all signs from Sami's MIBG scans are clear. There is NO live tumor. So we will continue to monitor and move on with out lives. As soon as we get done this Accutane therapy, cancer treatments will be over.
Samantha continues on her 2nd of 6 regiments of Accutane twice a day for two weeks. Then there are two weeks of rest (no meds). Then it repeats and this continues for 6 months.
Sami continues to be just a normal two year old. Dan and I appreciate every moment. She is such a joy. Thanks for all your messages. Dan and I continue to check every day.
Sandy
Monday, May 06, 2002 at 04:24 PM (CDT)
Hello All
Samantha is doing GREAT.
Last week flew by. Yes we had a cat scan on Wednesday (no results) and hearing test Thursday. We decide on a hearing aid in the left ear to start.
She is busy visiting friends and playing outside.
Friday night we went to play with Sami's friend Brynne. She is about to get a little brother so we took them Sami's cradle to use. It is so nice when another child gets to use something of yours.
Saturday we went to the farm. Had so much fun we decieded to stay for dinner. Sami loves Betty's pasta.
Sunday we went to see Erich. Our friend from CHOP. His mom and family are great hosts. We had a wonderful dinner. Sami loved the 4 dogs, 2 cat, 1 rabbit and Erich's 3 sisters.
Today we went to say good by to Doctor Sharon as she moves to another practice. But we will keep in touch.
Hope to do a webcam this week.
Sandy
Saturday, April 27, 2002 at 08:31 PM (CDT)
Thanks for all your messages. Dan and I check daily and share in your excitement.
Samantha is such a joy. We try to appreciate every moment. You will often see Dan and I just staring and watch Sami being a normal kid.
We have endured a very long road and we are appreciative where we are. We are amazed at how strong she is and how far she has come. It has been almost a year since this nightmare started and it is hard to believe it really did. Many of our friends that suffer from cancer have not been so lucky. Sami's protocol was very aggressive and not all kids can survive the treatment. And when they do they often have side effects that last a very long time.
We are lucky! Sami has not needed a transfusion in over 2 months. She had her central line taken out. Sami is now eating on her own. Most still have feeding tubes. Sami's last 2 MIBG scans have shown no live tumor. And the only treatment left is an oral medication that she is tolerating very well.
Now with her hair growning back and she usually wears a hat to protect her from the sun...you can't even tell she had cancer. She is just a normal kid.
But this week Sami has not been herself. Many of you read that Sunday night she had fevers and complained of pain. Monday we spent at CHOP. They never did figure out why. She received antibiotics that she is taking very well (4 times a day) for 10 days. Only thing it seems to do is give her diarrhea and gas pains. And to be honest, I think her pain is common toothache from her 2-year molars. She continues to run low grade fevers about every other day and is cranky at times. Her nose runs and her hands are in her mouth.... MOTHERS, you know what that means. Teething.
The weather was beautiful today. We visited a golden retriever dog show at the local park and played on the jungle gym. Swings and slide are her favorites.
This week will be busy. Sami is scheduled for a cat scan on Wednesday. She will continue to have cat scans to monitor the dead tumor that was left inside due to the danger to remove it. This will be her first without her tubbies. She won't be able to eat or drink because she will be put to sleep. She will need to drink 6 oz of juice with a contrast die the night before and the morning of the test. Since she has never drank 6 oz of anything. I am planning to use a ng tube. She will need to get an IV for sedition and IV contrast. This won't be fun.
After the cat scan she will need to go to clinic for blood tests. She needs to get a pregnancy test every month before her doctor can write the prescription for acutane. I know, isn't it crazy? But it is FDA rules. Then a quick visit with Dr Don.
Thursday is another trip to CHOP. Sami has another appointment to get her hearing checked. Hearing loss is common with some forms of chemotherapy. So far the hearing loss has been mild and only in the high tones. We hope it has not gotten any worse. But we are still planning that she will need to wear hearing aides.
We will continue to update as time permits.
Sandy
Tuesday, April 23, 2002 at 09:53 PM (CDT)
Sami had a good night no fevers.
She was a bit cranky at times during the day and ran low-grade fevers off and on. But you wouldn't know it the rest of the day.
She ate great today. It started out slow, but after some juice and of coarse italian ice (yes for breakfast) she had pretzels, french fries, a few bits of chicken nuggets, chocolate chip pancakes, more juice, andnew things to add to the menu were fish sticks and mac and cheese and popcorn.
She played really good by herself which is always a treat. Talking up a storm (though we can't always tell you what she is saying...she has her own language). Dan took her to Walmart to a walk around. The weather was beautiful today but cold 45 degrees and windy.
I worked normal hours (yea) and afterwards we went to pick up Dan's car from the shop. On the way home we stopped by the Raritan train station to watch the trains come in. Sami loves choo choos.
We continue to ask her what hurts, but no answers as yet. She is taking her oral meds good now. Don't know what changed her mind, but we like it. Especially since the new one is 4 times a day.
Check out the new pictures from last week. Including Sami's fun opening the 4 presents that my coworkers sent. THANKS Friends!
And the zoo...were it was 100 degrees.
Love, Sandy, Dan and Sami
Monday, April 22, 2002 at 08:39 PM (CDT)
Sami had a nice weekend with Grand Dad Jack and her cousin Steven. Of coarse they went to Wegmans and she ate and ate. Dad says he is having a hard time getting past the donuts and butter sections. She thinks we need butter every time we go to the store. The way she eats it you would think so. We have bought more butter in the past 2 months than Dan and I have since we have been married.
Saturday, Sami finished her first two weeks of Acutane. The meds are 2 weeks on, then 2 weeks off and so forth, for six months. She is having the dry, cracking mouth (not too bad) and dry patches on her body. She is also having some red areas that come and go. We are unsure if this is related to the Acutane or her white cells growing. Her white count went from 2.3 to 3 in less than a week. Platelets and Hemogoblin are normal. ANC was 780 today up from 520 on Wednesday.
Yes today...we had to make an unexpected trip to CHOP. Last night Sami had fevers and pain. We still don't know why. Maybe because of all these new cells. But the good thing was we didn't have to go to the emergency room (since she doesn't have a central line to worry about), we waited till clinic opened in the morning. We took our time because when she woke she didn't have a fever. I was able to work and get clothes packed incase they kept her overnight.
It was a long day at clinic. We had to wait for available docs (though Sami's dr don and our friend that was on call last night dr patrick stopped in to give us a good thumbs up that it didn't look bad) After the fellow, we had to wait for the Attending. Sami was undressed and wanted to run the halls with just a diaper. It made us uncomfortable, but she had a blast. Her nurses wanted to join her in her freedom (right kelly?) But it was decided to take a culture of her blood, put her on antibiotics and send her home with the understanding that she would have to come back is she gets another fever.
We will let you know more tomorrow.
Thursday, April 18, 2002 at 10:31 PM (CDT)
*******************CHECK OUT NEW PICTURES APRIL 21 2002***************************
Hi Everyone,
Samis visit to CHOP went great. She got to visit with all her friends. Dr Don went over her blood results and said that they were just about normal. Normal are we getting a kid that is normal, we are enjoying every minute of it. He was very pleased as to how she is doing. This was the first time she had to have her blood taken through her arm, since she does not have her tubies any more. She was a bit scared but she pulled through like a champ. When the nurse was done Sami said all done and then blew her a kiss.
Her next step is for a CAT scan on May 1st and her hearing test on the May 2nd. And her oral meds are going good so far.
The Zoo was hot! When we left at 11:30am it was over 100 degrees. Not the Gray weather. Sami enjoyed seeing all the animals and really like the monkeys. We got a family pass so we plan to go back. It is only 5 minutes from CHOP.
And then later that day after CHOP we went to the Grimaldi's for dinner. Sami loved playing with the twins. And the 2 dogs, as you all know Sami loves dogs.
Sami had a long day and played hard. She fell asleep in the car not too far from home. Sandy was able to get her inside without waking her. So we knew she was tired.
We will update the pictures this weekend for everyone.
We love you all
Dan
Tuesday, April 16, 2002 at 10:15 PM (CDT)
Sorry for not updating sooner.
Sami is just off being a normal kid. Keeping Dan and I busy chasing her. We are making play dates, visiting people and guests are coming here.
Lauren, Eric and Amanda came to dinner on Sunday. Sami had fun playing with Amanda and serving everyone pasta. Since we had not seen each other over the holidays, it was Christmas in April. What fun for all of us (not just Sami and her birtday that continues to be celebrated).
Monday, my friends from Amex came to visit: Susie and her husband Tim. It was a quick visit, but Susie promises to come back to have a tea party with Sami again soon. Thanks for the presents!
Monday was also tax day and Anjali's birthday. See her picture (from last week). We took her out for ice cream.
Tuesday we stayed pretty much inside with the AC on. The weather reports were for 84 degrees, but Dan's car reported 95 and up to 101 in traffic. Sami has to stay out of the Sun so we played inside and visited next door at Anjali's house.
Wednesday we have a clinic appointment with Dr. Don at 1:30. i tried to schedule a few other tests for the same day to save a trip, but it didn't work. So we are going to do some fun stuff.
We plan to leave early in the morning to get to the Philadelphia Zoo when then open at 9:30. We plan to see Sami's favorite Elephants and monkeys. She has never been to a zoo so it should be fun. We won't stay long since the weather reports are for 90 degrees...and again Sami shouldn't be out in the sun which is why we are going early morning. We need to be back at the hospital mid day any way.
At CHOP we need to visit some friends including Jackie (our favorite receiptist), Marie(our favorite nurse), and our patient friends: Erich and Alivia just to name a few.
On the way home we plan to stop and have dinner at the Grimaldi's. We haven't seen the twins (now 3) since last summer.
Keep sending your messages we check everyday even though we don't always have time to update the journal.
Sandy
Wednesday, April 10, 2002 at 09:32 PM (CDT)
Update: Please everyone say a prayer for a little boy just like me, suffering from neuroblastoma. He died Tuesday night and his name is Michael.
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What a beautiful day. We went to visit my friend Carol and Rick today. Sami loved being outside and strolling her baby.
Sami is eating a bit more. Today she had a motts strawberry applesauce, sipps of water, italian ice watermelon, torrita with butter, ham, another italian ice, pasta, banana baby food, chips and guamole, 1/2 kit kat bar, another torrita with butter and ear of corn (oh and a bit more italian ice).
I'm trying to wein her from nursing. So far we are down to only at bed time. But naps are getting harder even if I nurse her. Actually she hasn't taken a nap in 3 days. Though she says she wants to go night night. She nurses and when I put her in bed she wakes up. At night she is doing better, sleeping in her bed till about 2am. AFter that it is difficult to get her back in her bed, usually she comes to bed with us, but I think I have finally gotten through to her that she can't nurse all night anymore. I think she is consoled with the idea that at least she is with us. This will be a long road I can see. Sorry Doctor Sharon, I can't seem to do the cold turkey method. But I hope to be at once at night soon.
Check out the new pictures. There is one of Sami without a shirt the night before her tubies were taken out. Many of you may have seen the ends where the IVs connected...but this is the chance to see how it came out of her chest. This was the best line. It had been in since July 9, 20-01. There were 3 others but they didn't work or got infected...all within the first 6 weeks of her getting diagnosed. After the 3rd one went bad, I asked GOD for a break and HE gave us one with this one. It was great.
And you can see the line acrossed her stomach above her belly button, that is her scar from surgery.
It is kind of hard to tell her size in the picture. She is 30 and 1/2 inches, weighs about 9 kil/ 19.8 lbs, 18 month clothes and a size 3 diaper. Very tiny for a 2 year old. Friends call her peite.
Keep the messages coming, Dan and I continue to check each day.
Please note we have changed our personal e-mail to: gray56@optonline.net
Love, Sandy, Dan and Sami
Tuesday, April 09, 2002 at 03:18 PM (CDT)
I updated the sit yesterday, but I went back today and it was still on Sunday. So lets try it again.
Sami is doing great. Eating more each day.
Her favorites are torittas with butter, ham, watermelon, corn on the cob (and only on the cob) and her most favorite going through about 2 a day or more...ITALIAN ICE (watermelon flavor).
After that long ride home from Baltimore on Sunday we don't expect to take any driving trips any time soon. The usual 3 hour drive took 6 hours!
So if any one (healthy) would like to come for a visit...now is the time. Kids are welcome.
Sandy, Dan and Sami
Sunday, April 07, 2002 at 12:35 PM (CDT)
Hi from Baltimore.
Sami is on her first road trip. Yesterday she played with her cousins: Steven, David, Jordan and John. We spent the night at Aunt Dottie and Bob's house. It was so fun to watch Sami playing with the kids. And she didn't even miss Dan and I went we went to dinner for our 18th Wedding Anniversary. Though when we got home at 8:30 she was ready for bed.
No fevers, just a little pain if you touch her chest where the stiches are. And she is getting her 2 year molers that are bothering her. All she wants to eat is ice.
We made a quick stop by our friend Michelle's house. It was nice to see you Mic. Hope to see the kids and play for awhile next time.
Today we are visiting with Gram Gram and Granny. We are waiting for Granny's mom to come to meet Sami. We will make the 3 hour drive home in a little while.
Sandy, Dan and Sami
Sunday, April 07, 2002 at 12:35 PM (CDT)
Hi from Baltimore.
Sami is on her first road trip. Yesterday she played with her cousins: Steven, David, Jordan and John. We spent the night at Aunt Dottie and Bob's house. It was so fun to watch Sami playing with the kids. And she didn't even miss Dan and I went we went to dinner for our 18th Wedding Anniversary. Though when we got home at 8:30 she was ready for bed.
No fevers, just a little pain if you touch her chest where the stiches are. And she is getting her 2 year molers that are bothering her. All she wants to eat is ice.
We made a quick stop by our friend Michelle's house. It was nice to see you Mic. Hope to see the kids and play for awhile next time.
Today we are visiting with Gram Gram and Granny. We are waiting for Granny's mom to come to meet Sami. We will make the 3 hour drive home in a little while.
Sandy, Dan and Sami
Thursday, April 04, 2002 at 07:13 PM (CST)
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UPDATE APRIL 5 2002----Sami woke around 2 AM with a low grade fever about 100. We kept an eye on her all night to see if it would spike and we would have to run her down to CHOP. Well it did not, but when she woke up in the morning she was in pain and was not comfortable. Sami is very sore from the operation and is black and blue on her chest and her hand where the IV was. She is napping now and was eating better this afternoon. Will update later to let all her fans know how she is doing.
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Hi Everyone,
The day started out early. We had to get to CHOP early and Sandy and Sami stopped off to pick up Betty so she could be with them.
Sami got to see all her friends before surgery. She said by by to her tubbies and was put to sleep.
Everything went well with the surgery and she is home now.
The Docs were pleased with all of her counts and how she is doing. Though she needs to gain weight. She lost almost 2 pounds from the last visit. She is about 19 lbs.
Sami seemed to be tired and not feeling herself so she went to bed early tonight. She seems to be in some pain and Mommy is taking good care of her with that.
We will try and post some updates tomorrow let you all know how she is doing.
And we will do another night of Sami on the web cam soon toooo.
Love to you all
Sami, Sandy & Dan
Tuesday, April 02, 2002 at 08:35 PM (CST)
=====UPDATE =====
If you have Yahoo IM you can see me tonight after dinner(about 7-8pm). You don't need a camera to see us (though we need one to see you). But we can read your text messages. Download the free yahoo messager.
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Hi Guys,
What a fun weekend. My daddy was home with me for 3 days. We had lots of fun. We went for walks outside, we played, sang, and had all kinds of fun. I got to visit with Gram-Gram and Granny. Made pasta for them and had a tea party.
On Sunday My Mommy and Daddy took me to the farm. I got to see all my friends there. Made pasta for Betty and Carol. Played with Sassy in the house. It was wet outside so we had to play inside.
I visited with my favorite horse Sami. I know she is a special horse, we're friends.
My Mommy and Daddy took some nice pictures of me for my 2 year birthday. I got all dressed up for them. I am sure that Daddy will post some of them later. He said that he wanted to post some from this past weekend first.
I heard My Mommy and Daddy talking and they wanted everyone to know we have a web cam. If you have Yahoo IM you can see me. They are not sure when they will do it but anyone that has Yahoo IM and wants to see me send my Mommy an e-mail so I can say hi to you.
I have to run it is night night time.
Love you all.
Sami
Friday, March 29, 2002 at 04:44 PM (CST)
What a great week.
I am two years old and everyone keeps sending me cards, and packages. All my friends are calling and some have come over to visit.
Granddad Jack came last night and brought 3 of my great aunts: Nan, Betty and Rhoda. It was great to see them. We played, I made pasta for everyone, and we ate and had cake again.
Today my granddad York is here with granny Karan. They are going to spend the night...like a pj party. I'm sure daddy will let me help him make breakfast in the morning. I hope it is my mommy's favorite chocolate chip pancakes. They are yummy.
The weather was warm today and I played outside with my babies...though I did fall a couple of times and skin my knees and bit my lip (just a little blood) Good thing Dr. Don called today with my blood results and said my platletts are 175,000 (that is great). My hemogoblin was up to 9.9. So they are talking about taking my tubies out this week. I'm sure it won't be fun, but it gets me one step closer to being a normal kid.
Well, thanks for all the nice messages.
Love, Sami
Wednesday, March 27, 2002
TODAY IS MY
BIRTHDAY
I'm 2 years old.
Mom and Dad will take lots of pictures and post them tomorrow.
*******************The Pictures are Up now from her birthday***************************
Today my mom promises to spend the day with me and not check e-mails or work. Just her and me all day.
YEA...love sami
Monday, March 25, 2002 at 09:27 PM (CST)
Hi Guys Sami here.
Check out the new pictures My Daddy put up.
I am having so much fun. My Daddy came home early Sunday so I had all day to play with him. He took me to the store and I was able to see all my friends there and got to eat some real good fresh bread. And then we walked around the store and I got to see Choo Choo. The train runs high over our heads.
I got to pick out all kinds of neat snacks to eat. And Daddy let me try some out as we were walking around. That was fun.
If you look at the pictures you can see I went over KK's (Kevin) house to celebrate our birthdays together. I had lots of good food and cake. And we got to play with all kinds of toys. And it was fun to give KK hugs.
Well it is time for night night so good night to all of my friends.
We love you all
Sami & Mommy & Daddy
Saturday, March 23, 2002 at 09:17 PM (CST)
Sami is on the visiting tour with Daddy out of town this week. We have been looking for healthy guests and playmates.
Wednesday night Aunt Arlene came, Thursday our friend Melanie came in the morning and Betty in the afternoon. Then Friday, Betty came back and Friday night we spent with Kevin. Sami calls him KK - which is cute since his name in Kevin Kruge. Today Sami went to visit her friend Brynne. Check out the movie star picture.
Sami is doing great. Eating, playing and just being a normal 2 year old...though her birthday isn't till Wednesday.
Sami has her 2 year old pedicatric appointment with Dr. Sharon on Tuesday. She still can't get any vacinations for awhile.
I'll update the site after her check up.
Sandy
Wednesday, March 20, 2002 at 10:45 PM (CST)
A visit to CHOP today in the rain.
Sami went to visit all her friends at CHOP today. It was a scheduled clinic visit. All blood levels look good enough to pull the central line. But Mom's not quite ready and we didn't want to schedule it on Sami's birthday, so Dr. Don agreed we could wait till April 3. Then we will do blood tests, pull the line and get started with the next step, Acutane.
After blood work and triage...Sami weighed in a 9.9 kilos (about 21.7 lbs) - I was expecting over 10 kg - with normal temps and blood pressures. She was out of there before I got the chance to check if she had grown though she continues to look talk and grow out of clothes.
Sami showed off for some patients and parents waiting for their turn at clinic. She ate yogurt and bananas...smiling and talking away. She played fuse ball and jumped on all the colored squares.
Then we were off to 3EAST to see "Jackie" and have lunch with our friend Samantha. Marie was off today, but we did see Kim, Brenda, Susan, Sam and that is just to name a few of our friends.
Everyone couldn't believe how great Sami looks. And YES KELLY, Sami does have hair growing. Some people didn't even recognize her. It is a light brown similar to mine. You'll probably notice better on the next set of pictures in a week or so.
So after lunch it was back to clinic to see Dr. Don. He said to stop the overnight IV hydration and if she continues to eat stop the ng feeds as well. For now we will stop the feeds during the day and just run them at night. We have also cut back her meds. Soon we will be free of all tubes and most meds...just like a normal two year old.
As a matter of fact, Dr. Don said it is time to go back to the normal routine at the pediatrician office. So I scheduled Sami's 2-year check up for next week. Wow, we are becoming normal again.
So long for now. I'll try to get some pictures of Sami that show her growing hair for next week.
Sandy
Wednesday, March 20, 2002 at 10:45 PM (CST)
A visit to CHOP today in the rain.
Sami went to visit all her friends at CHOP today. It was a scheduled clinic visit. All blood levels look good enough to pull the central line. But Mom's not quite ready and we didn't want to schedule it on Sami's birthday, so Dr. Don agreed we could wait till April 3. Then we will do blood tests, pull the line and get started with the next step, Acutane.
After blood work and triage...Sami weighed in a 9.9 kilos (about 21.7 lbs) - I was expecting over 10 kg - with normal temps and blood pressures. She was out of there before I got the chance to check if she had grown though she continues to look talk and grow out of clothes.
Sami showed off for some patients and parents waiting for their turn at clinic. She ate yogurt and bananas...smiling and talking away. She played fuse ball and jumped on all the colored squares.
Then we were off to 3EAST to see "Jackie" and have lunch with our friend Samantha. Marie was off today, but we did see Kim, Brenda, Susan, Sam and that is just to name a few of our friends.
Everyone couldn't believe how great Sami looks. And YES KELLY, Sami does have hair growing. Some people didn't even recognize her. It is a light brown similar to mine. You'll probably notice better on the next set of pictures in a week or so.
So after lunch it was back to clinic to see Dr. Don. He said to stop the overnight IV hydration and if she continues to eat stop the ng feeds as well. For now we will stop the feeds during the day and just run them at night. We have also cut back her meds. Soon we will be free of all tubes and most meds...just like a normal two year old.
As a matter of fact, Dr. Don said it is time to go back to the normal routine at the pediatrician office. So I scheduled Sami's 2-year check up for next week. Wow, we are becoming normal again.
So long for now. I'll try to get some pictures of Sami that show her growing hair for next week.
Sandy
Monday, March 18, 2002 at 10:34 PM (CST)
What a great weekend. Dan and I just watch Sami in amazement. She is such a joy. So smart. She imitates us. Especially on the phone.
We played doggie. We bark and walk around on our hands and knees. It is so funny to watch and hear her pant like a dog....she likes it when mommy is the doggie and she holds my hair like a leash.
Saturday we went to Somerville to get mommy a new cell phone. Sami and I walked around. She sways her arms like she is one top of the world...look at me. Full of confidence and strength. Then we had a picnic lunch on the drive to the dentist. Mommy's turn to take care of herself. Daddy and Sami watched Barney in the car while they waited. Then home for a well needed nap. After dinner we went to Mike and Laurie's to surprise Nicole with a Sami visit (check out the picture of the two of them in Nicole's special pink fussy chair). They had a blast playing with doggies, making crafty puppets, and most of all...wearing underwear on their heads. Sami was a riot with this.
Sunday we had daddy make our favorite chocolate chip pancakes (Sami helps mix the batter). We played with her oh so many toys and she took a ride with daddy so mommy could get some work done.
Sami is eating more real food, taking on more of the ng feeds and gaining weight. By my scale she has gained two pounds in about 2.5 weeks. She is well on the road to recovery. Other than the ng tube, you wouldn't even know she was sick.
Next clinic visit is Wednesday. Well plan to visit all our friends at CHOP.
Sandy
Friday, March 15, 2002 at 10:04 PM (CST)
***************************CHECK OUT NEW PICS OF SAMI 3/17/02********************
What another beautiful day. We played outside with our great neighbors.
Sami continues to shine. She is such a joy. So smart, well mannered and you just want to hug and kiss her all day, AND I DO.
Sami knows that to go night-night, she has to get connected to "water." That is what she calls her IV hydration fluid. I set up 500 MLs IV bag to run over night. She has recently been able to tolerate the ng feeds to run at night as well. Up to 16 ML per hour (about a half an ounce an hour for about 10 hours) giving her 5 oz...that is good for her. I am still giving her 3 boluses during the day and we are up to 100 MLs or a little over 3 ounces each. That is a total of 14 ounces. Sami calls these ng feeds water too.
One thing we love about the ng tube is giving medicines. We administer all her meds through the tube so no more fighting for her to take them orally. It is great. She calls that water too.
Though with the weather being nicer...I lose track of time and it is hard getting in the feeds in during the day.
Also Sami is starting to eat real food by mouth. At first it was just pretzels. Then pretzels dipped in peanut butter. Then chips, orange juice, creme fillings of donuts and sugar off the top. Now it is back to pasta. And tonight she ate yogurt, watermelon and ham. It is great that she is interested in food again. She is still very picky and we still have to watch that she can digest the food that she wants to eat. There is still the problem of her stomach not digesting properly. But I think that problem is working its way out as well.
Yesterday was the last day of the Flagyl antibiotic (for bacteria in intestines), maybe that was affecting her eating as well. It is like someone turned a switch today.
We will venture to give her more real foods this weekend and hope that she can keep them down. With food coming back up usually means the tube comes up too and we hate to have to put it in. Sami gets so upset. But once it is in she is fine with it. I watched her playing with the tube today, swaying it back and forth letting the end hit each foot.
If she continues to do well, we hope to discontinue the IV hydration. And with her counts doing so well...they will probably take the central line out real soon. But we are not looking forward to that because that will mean that she will get a needle for each blood test in the future.
Well that is Samis update. We are looking forward to a great weekend together as a family.
Healthy visitors are welcome.
Sandy
Thursday, March 14, 2002 at 11:17 PM (CST)
What, no one wants to send a message if I don't update the website everyday. I do check for messages you know.
Well Sami is doing excellent !
She looks great ! Dan will post new pictures this weekend.
The weather has been great and Sami wants to be outside all the time. The neighbors are coming out of hyberation, it is great.
Today I took Sami to the farm to see Betty, Carol and friends. Especial Sassy.
Sami continues to tolerate the ng feeds. I am slowing increasing the volume. Though most foods she is just not interested in eating...or it just doesn't digest. It is a slow road.
I continue to work when Sami is sleeping. Dan is at work all day and comes home to cook for us. He is a great help.
Sami is sleeping through the night in her room and most of the night alone in her new big girl bed (converted the crib to a day bed). Something we started about two weeks ago when we came home from the hospital. I have a mattress in her room that Dan or I sleep in if she need company. But the good news she has not joined us in bed since our return home. The idea was to simulate the hospital environments since that is what she is used to. A crib in a room, with mommy sleeping in the bed next to her. Usually about 7am she wakes and wants to snuggle before getting up for the day. The mattress works great for this.
We continue to do blood tests at home. Next visit to CHOP is Wednesday.
Sandy
Saturday, March 09, 2002 at 02:41 PM (CST)
*****************CHECK OUT NEW PICTURES 3/10/02**********************
Sorry, I'm too busy to update the website each day. Though I do get on several times a day and look at the messages. Thanks we really enjoy them.
Sami is doing great. Mom and Dad are exhausted. Sami gets nutrition during the day through her ng tube, meds around the clock and IV hydration at night. It is a lot to keep up with. But each day she gets stronger and we get more in a routine.
Check out the pictures from the last hospital stay. So to those that think we have a band here at the house...no it is music therapy that visited Sami 3 times a week since she was in transplant. Thanks Caren.
Yes the tube you see taped to her face is the ng tube. It is there all the time. Unless she throws it up, then I have to put it back in (we have had to put it back in 3 times). I must say I am better than the few nurses I witnessed. But Sami hates it. She knows when she vomits and the tubes comes up what follows. She is emotionally distressed until it is done.
The weather has been great and Sami has been playing outside with her friends. The neighbors were all so excited that she is walking, talking and looking so good.
Thanks,
Sandy
Tuesday, March 05, 2002 at 12:17 AM (CST)
Sorry it is late so this will be short.
Check out the new pictures Dan posted tonight.
Sami is home and doing great. Talking up a storm. Singing! and eating (well alittle).
We went to clinic today expecting at least needing platlets and maybe blood which takes 4 hours to infuse after it arrives from blood bank.
But instead we got the good news that all was fine that we could go home. We didn't know what to do with ourselves so we went to visit our friends at 3 East. We ate lunch and were out by 2pm.
Tonight we took Sami to get her long promised new gold fish. Her first one died when we were in transplant. I think the name will just be "fishy"
You will notice in the pictures a yellow tube coming from Sami's nose. That is the ng tube I have been writing about. We connect a tube that provides nutrition like Pediasure. She is improving on the amount of feeds she can tolerate.
We hope to be home now forever, but we are realistic.
Keep in touch,
Sandy
Saturday, March 02, 2002 at 09:19 PM (CST)
We are HOME !
call us 908-704-8057
Friday, March 01, 2002 at 10:07 PM (CST)
Today went pretty well.
It would have been better if the doctors would have stayed on my plan of 2 ounces every 3 hours. They wanted to double that. So at 9am I tried but after 3/4 of the feed she looked sick. I walked her around and keep her busy. By noon it was time to start again, I only got 40% of the feed in when she started to get sick. At 3 I went back to my 2 ounce idea and it went well. But at 6 she took the 2 ounces so well that I doubled it and she did good. Tonight I'm giving her a bit more while she is sleeping and we will complete her fluid needs with hydration in her IV.
Looks like when we get home I'll be able to get at least 1/2 of her needs in her stomach with feeds and the rest will be covered with water in her central line. They don't mind sending us home with that, but they won't send us home with the nutrition in the line for risk of infection.
We continue to walk the halls ALL day. As many of you know when you call and miss us.
Molly, you called 5 minutes before we walked in the room ... we stayed for awhile eating and getting her feeds watching a new Barney she got from Courtney....then you called 5 minutes after we left to walk around.
Dana, sorry I missed you...I tried to call you back when I got a minute.
Thanks friends for all the messages and calls. It helps me so much. I live for the adult contact.
Plans are to still go home on Saturday on ng feeds, IV hydration and lots of oral meds (yes Kelly reglan). But with the tube we don't have to fight with Sami to take them. She even helps to push the syringe into the tube.
Sandy
Friday, March 01, 2002 at 12:11 PM (CST)
It is March already? Where did February go? In the hospital for us.
The good news is that Sami only has to wear her mask for one more month. It
seems so long compared to the other kids that went through transplant with.
Probably because Sami had two transplants.
Thursday night Sami's IV nutrition was turned off. The plan is to test her
onfeeds through her ng tube on Friday. IF she tolerates it we will go home
on Saturday.
The best thing is we are tubiefree. This is a relieve for me. I'm tired of
pushing that pole and Sami in the car, or carrying her or even worse trying
to keep up to her when she is walking.
Dan is home from his business trip which also gives me a break. He brought
lots of stuff home from Disney for Sami. But mom has learned she no longer ranks
in the gift department. I didn't even get the peanuts from the plane. Or don't
they do that anymore? It has been so long since we have travelled.
OH, some of you may be wondering how the test went the other day. Yes the
staff was in (boy was I mad when they cancelled the day before). But to be
realistic, they were sick and should not be around Sami. They call it a milk
test. They put 2 ounces of her feeds in her stomach and watched the action
to see if it was emptying properly. In the feeds they put a radio active type of dye that is picked up on a special type of x-ray that you don't have to where alead gown. The hard thing for Sami is she is awake, taped to a table for one
hour. She was not happy. The bad news, but it validates her eating issues, is that after one hour, 90% of the fluid was still in her stomach. Not good at all. She is taking some medications and as I have told them and I have been doing for the past few days...the feeds need to be small with a break. Not big and or continuous. Right now we are running about 2 ounces about every 4 hours. We will have to see how this goes tomorrow and make a schedule for being at home as well. It is kind of like having an infant and making a bottle.
Dan will try to post the new pictures this weekend.
Sandy
Tuesday, February 26, 2002 at 03:14 PM (CST)
Test was postponed till tomorrow because of lack of staff. I'm not happy. Still no plan to go home.
Sami is doing great, eating and playing. My concern is catching a virus in this place.
The highlight of our day is walking the halls. Sami is learning her colors. She counts the blue squares and steps on the yellow and orange. And of coarse music therapy. She has great sense of music. Loves to play the piano and marocos (sp?). Her ritual includes putting all the pics in the guitar hole.
Thanks for all the messages, you help to keep me going.
Sandy
Tuesday, February 26, 2002 at 12:23 AM (CST)
Sorry for the delay in updating.
As I mentioned previously, computer issues and busy with Sami have been the problem.
Sami continues to do well. She is walking and playing even more. Still getting 24 hour IV feeds and NG feeds. AND she is eating, yea!
She ignores the ng tube, for the most part. She calls it her sticker. She understands why she needs it and even more she hates when she throws it up (which is about twice a day - that is alot) because she knows it has to go back in.
Sami has a few tests tomorrow that may help us with her feeding issues. Hope to have more to update tomorrow.
No word on when we can come home, but I think the plan will get clearer when we get the results tomorrow.
Please call, but understand we do roam the halls quite abit. Leave a message and try to call back.
Sandy
215-590-6313
Friday February 22, 2002 11:53 PM CST
Sami is doing great with the NG tube in her nose, though the feeds are going real slow. Her goal is 50 ml per hour and she is doing 5ml (a tablespoon). When we raise it to 10 she gets sick. So it is slow going, no plans to come home.
Dan is away this week in Orlando at PMA. We wish we were with him.
We continue to walk the halls though Sami is connected to her tubies all day (no break for mom to walk her without a pole)
She is getting stronger and venturing to walk abit herself (not me carrying her 100%, more like 95%). I love those brief moments when she walks and entertains herself. Today she even sat on Alicia's (a 16 year old patient) lap and played video game.
Sorry I don't update much. I don't have much time and I can't get into the internet with my work computer so I have to use the hospital computer in the hall (there isn't one in this room).
Give us a call, there is an answering machine. We are not in the room much.
Sandy
215-590-6316
Wednesday February 20, 2002 9:24 PM CST
Hi Everyone,
Well Tuesday night Sami fought off the heat and did not have a fever. The first time since Friday. She went all day Wednesday with no fever either. We are so glad and hope we don't see a fever again.
So far Sami is looking stronger, since she has been getting the Hal and Lippids, her nutrition through her central line. But because of infection risks they won't send her home on that so Sami needs to get her nutrition through an NG Tube. Tonight it took 3, yes 3 nurses to hold Sami to put an NG tube down her nose. I think they could have used at least 2 more nurses to help. And it took Sami about 3.5 seconds to rip it out. So they had to regroup and do it again. So far Sami does not like it but she needs it. We can get many of her meds down through it and liquid nutrition and vitamins.
Mom is trying to get Sami to sleep with out Sami pulling the NG tube out.
Don't forget they changed rooms and Sami's phone number is 215-590-6316. Sandy has her answering machine hooked up so if they are out or busy, they may not make it to the phone, leave a message. They might even be in the room and able to hear you and don't forget to leave your number.
Thanks for all the prayers and positive thoughts. Sami needs everyone's support.
The goal is to get these NG feeds to work overnight and then we can get Sami off the IVs and home...maybe over the weekend.
Love to you all.
Sami, Mom , Dad
Monday February 18, 2002 5:44 PM CST
************Early Tuesday morning update *****************
Sami spike another fever during the night, 39.2 her highest ever. She has never had a temp that high. After tylenol it went down to about 38.4 still a fever. At 8:15AM they were getting her more tylenol to get it lower yet. Will update more later.
Hello from CHOP
We moved into a new room...number 15 phone 215-590-6316
Looks like we will be here awhile. Sami continues to run fevers and her ANC is going down instead of up.
They don't know why since all the cultures have been negative.
She is doing well with the IV nutritcion though they will not keep her on it for long for fear of infection. Hopefully she will eat soon. She may get an NG tube for feeds to supliment her calories since she is not eating or drinking much. At this point I don't care, we need to get her strength up and experienced moms tell us that the feeds help encourage eating.
Today she starting walking again. Hopefully she will get some strength and get well real soon.
Don't really have an idea of when we are coming home. Maybe a week. Looking for helpers. Especially next week as Dan leaves for a week business trip on Friday.
Give us a call.
Sandy
Sunday February 17, 2002 9:07 AM CST
Hi Everyone,
Well the roller coaster ride continues. It seems like as Sami comes out of one round of a fever she gets hit with another. It was looking like they were going to let her go home on Sunday, but saturday night/sunday morning Sami spike another fever. This was her highest 38.7 (about 101.8). She got sick twice in the morning and it looks like she is getting mucasitas again. Her counts are low and if it is mucasiatis then that won't go away till her counts get back.
Mom may have to go home again today to get more cloths since it looks like this is going to be a longer stay than ever thought. When Mom went home on saturday Sami wanted to be carried ALL day. She would not let Dad put her down. She was in Dads arm from 9:30 am till about 6:30 pm and I walked her for over 8 hrs.
Sami has been loosing more weight and they strated her on her IV nutrition.
Keep the prayers and positive thoughts going her way.
Love to everyone
Sami, Sandy and Dan
Friday February 15, 2002 7:31 AM CST
KEEP THE PRAYERS AND POSITIVE THOUGHTS GOING TO SAMI.
Sami just was not herself yesterday. We could tell that she was fighting something. Last night she spiked a fever again. Her temp went up to 38.5 (101). They started to draw blood to check cultures and start anti-biotics. At 4:00AM she was still running a fever. I check in on her at 6:00AM and she was sleeping with Mom and felt like she was not as hot as she was earlier.
Sami goes for her last treatment of radiation and should be over by now. We hope that this fever was brought on by the radiation and hope it goes away after the radiation.
I will try and post any updates as I get them from Mom.
Keep the prayers and positive thoughts going to Sami.
Our Love to you All
Wednesday February 13, 2002 10:08 PM CST
Quick update on Sami on Thursday Feb. 14
Day 9 of radiation is over and ONE more day.
Sami is fighting off the radiation and is not quite herself today. Sami is not running a fever now but she seems a bit warm. She has just wanted to nurse with Mom. Grand Dad Gray stopped up to help and be with Sami.
Will update more tomorrow, looks like she may go home tomorrow.
Hi everyone,
Sami had a good day. Mommy is taking her out for walks and visiting her pals all over the hospital. Her buddy Patrick, in day surgery, had to eat bacon eggs and waffels that were sent to day surgery recover for Sami and she was not there. They all missed her and were checking the hospital computer to see where she was and how she was doing. They were all glad to see her and had a blue slurpy waiting for her.
Sami got her shot tonight to help her cells a bit. We hope that they will go in the right direction and she can come home soon.
Sami is not likeing to sleep alone in the crib and will end up with Mom some time in the night and Mom does not get much rest then.
Sami and Mommys friend Carol came to CHOP to play with Sami. Like always Sami and Carol had fun.
Keep up the prayers and positive thoughts Sami has just 2 days of radiation left.
Hope to have good news tomorrow.
Our love to you all
Wednesday February 13, 2002 8:53 AM CST
Hi Everyone,
Good News.....Good News......Good News
The fever broke shortly after the fluids, Tylenol, and anti-biotic we given to Sami. Sami is fighting it all. The 24hr cultures came back negative, which is a good thing. Since Sami is post transplant they wait for the 48 cultures. The first thing they are worried about is an infection in her central line.
Sami being the social Princess of 3East, had me walking her up and down the halls all day and night saying Hi to everyone. She was feeling better but still a bit weak.
This morning she is doing so well, and her ANC is going up. The bad news is her white count went down so they want to start to give her the shots tonight.
The radiation continued through all of this so there are only 2, count them 2 days left.
We will try and update with more good information soon.
Dad
Tuesday February 12, 2002 11:58 AM CST
Hi everyone,
Well Sunday Sami was still tired from the radiation and she was still getting sick a bit more often. Then she started to get diahrea all day. She just was not herself.
Sunday night we all went down to the Ronald McDonald house since Sami had to be at CHOP for her radiation at 6:30 AM.
She still was not herself and was still getting sick and bad diahrea. When we went in we aked to have her weiged and Sami lost almost 1 kilo (about 2 pounds) this was about 10% of her weight. We aksed for them to hudrate more during radiation and aftern. They also said ahe was running a low grade feaver about 100.
With all of this Mommy want to take Sami to see the Doctors. They said with all of her sicknes she was dehidrating and to keep and eye on her temp. So I wnet out to get a thermometer and when I got bach her temp was 100.2. Mommy called the Doctors and they sadi to keep adn eye on her and if it went past 101 get to the ER right away.
Sami was tired but did not want to take a nap. She wanted to go outside. So Daddy took her for long walks inside og the Ronald McDonald hotel.
Later on when Mommy was getting Sami ready for bed and to set up her hydraton for the night (around 7:00PM) she took Sami temp again and it went up to 101.7. Mommy got Dad and called the Doctors and they said to get her to the ER right away. We were only 10 min from CHOP and we got her there in no time.
So they pumper her with fluids, took blood cultures and gave her tylenol and Sami was getting back to herself.
They admitted her and Mommy and Sami are now at CHOP. Sami's feaver seems to be gone but they want to keep her for a couple of days. And they said her ANC was low and they do not want to release her if it is low.
Sami's radiation continued as usual this moring so this is day 7 with just 3 to go.
Sami continues to fight and show everyone how strong she is. We hope that the Gray girls can come home by saturday.
We will try and keep everyone up to date on Sami.
Thanks for all the prayers and positive thouoghts.
Love Sami, Mommy, adn Daddy
Saturday February 9, 2002 11:48 PM CST
Hi Guys,
It's me Sami here.
Check out the new pictures Dad posted of ME.
Well this past week was different for me. My Mommy had to get up real early and take me over to CHOP. And then do you know what they did after they woke me up from a nice sound sleep. They put me to sleep, now isn't that silly or what. Well My mommy tells me that they put water in my tubies, I go to sleep and they take pictures, but I heard them say the are doing radiation in my original tumor site. I don't understand exactly why since the tumor is gone, but as long as it doesn't come back and this is going to make me better, I don't care.
They had to put marks (tatoos and magic marker) on me, boy I was scared the first time I woke up and saw these marks on my belly. I tried to wipe them off with a paper towel but it didn't come off. I thought I did them and was in trouble, but Mommy said it was ok.
When I wake up My Mommy and there and she lets me nurse and then I get my own slurppy. And some days the nurses even have my favorite breakfast, waffles. After I'm done with breakfast, My Mommy takes me over to see Jackie and my friends in 3East. And if the play room is not busy I get to play. A couple of times I even painted pictures with pretty stamps and beautiful colors. I like to go visit my pal Erich and check in on how baby Alivia is doing. Then My Mommy takes me back to the Ronald McDonald hotel. I have lots of new friends there. I get to relax and watch Barney and My Mommy takes me for walks all over.
This radiation stuff seems to make my belly feel funny and I can't always keep my food down, and it is starting to make me feel tired alot too.
Friday My Mommy took me home so I can play with all my toys and relax more and see all my friends....from a distance.
Saturday My Daddy and Mommy took me for some real nice walks. The weather was nice, the sun was out. I got to lay my head on My Daddy's shoulder for almost and hour as he walked me all over.
Well I need to get going for now. I want everyone to know that I love to hear from them on the web site and thank you for all of your prayers and positive thoughts.
Thanks Love you ALL
Sami
PS I heard my Mommy telling my Daddy that the pictures of me on the table getting ready for radiation are going in a book one of the doctors is doing. That's Cool.
Bye
Tuesday February 5, 2002 8:33 PM CST
Samis first day of radiation is behind her and she moves on with confidence and gaining strength.
Monday was Samis first day of radiation and she was such a wonderful girl. Since she was not allowed to eat past midnight and she was going under around 3:00PM she had a hungry morning. Considering how long she had gone with out eating I know I would not be as happy as she was. I got to go in when they sedated her since Mom would be going with the rest of the week. She was out so fast I could not believe how fast.
Everything went well and when she got out we took her back to CHOP. The radiation is done at The Hospital of the University of Pennsylvania, or HUP. When we got back to the recovery area she was starting to wake up. And then Mom nursed her for a while and then she was waking up more and wanted a slurppy, they have a machine there and she knows where it is and I bet she knows how to use it tooo.
We went to visit some of her friends on 3E and check up on baby Alivia. Everyone was doing fine. Then we went back to the Ronald McDonald House. Since Sami is an out patient for this and they have to be at CHOP by 6:30 AM for the rest of the treatments it was best they stayed close to CHOP. Sami loved it so far with her own private TV in the room so she can watch Barney and the dogs (almost any move about dogs).
Sami being Sami seems to know her way around the Ronald McDonald house already, or at least she knew her way to the kitchen, to find her pasta.
Tuesday I had to go to work and Sandy took Sami off to CHOP early in the morning. Poor Sami was asleep when Mom put her in the car. She did great again today. She got sick 2 times on Tuesday and none on Monday. Her friend Kelly and her Mom Molly were at CHOP and saw Sami and invited them over for lunch. I am sure Sami and Kelly had a wonderful time. I hope they were not comparing notes on their procedures.
Well I just want to give Samis fan club a quick up date. Mom will fill more on later. She is also getting some good pics that I will post this weekend.
Keep the prayers and positive thoughts going to Sami.
Love Sami, Mom and Dad
Sunday February 3, 2002 6:54 AM CST
30 DAYS POST TRANSPLANT
Sami is doing GREAT !
She is eating, drinking like never before. She is still getting sick. Yesterday she ate and ate, then got sick and asked to eat again. She started all over. Eating pasta, waffle, ham, bananas and I don't know what else. Then she got sick again. By this time it was after 9pm (the lastest that she has been up in awhile, but she also took her first nap in a week).
She began eating like she had the past 3 hours and I said, wait lets not go there again. I took her to bed and off to sleep she went water and all.
See, at night Sami gets IV hydration. She calls it water in her tubies. It helps to prevent dehydration because she gets sick so much.
Today I'm packing to leave for Ronald McDonald House tomorrow. Daddy took Monday off to come with us. Sami has to get blood tests at the clinic in the morning and arrive at 2pm at the day hospital to be put to sleep for the radiation to begin at 3. This is the set up day so they say it will take longer, that is why they do it in the afternoon. The nine days that follow we are due to arrive at 6am and the radiation is only suppose to take a few minutes.
Sami and I will stay at the Ronald McDonald house the week since radiation is out patient and so we don't have to endure the 2 hour ride home and back each day. We will go home on Friday for the weekend and back again on Sunday night so we can get to radiation early on Monday morning.
We are coming to an end of the treatments. Yes, she will continue to have weekly/monthly etc. check ups. AND she will be taking an oral drug for six months. BUT this is the last treatment at the hospital for her cancer.
OH, did you here? Her last MIBG scan was clear just like the one last month. Though we had a bit of a scare that the first results of this scan showed some glowing areas that concerned the doctor. But they rescaned and all is clear as we had expected. The chances of the cancer coming back within a month and during transplant no less is very unlikely.
Sami is becoming quite the little girl. Don't be fooled anyone, she is not a baby anymore. She can tell you what she wants, and if you try to do otherwise....she will set you straight.
My many thanks go to my 3 Carol friends that have helped babysit so I can get work/home/life stuff done.
Carol Roberts, you have been a GOD send coming to our house and giving of your time many days a week to care for Sami while I work. And most of all Sami loves to come to your house to see Kody the dog and JD the cat. We love all your projects.
Carol Salerno, Sami LOVES Sassy most of all (and secretly Joey too). Thanks for being my nurse sounding board and your suggestions and reassurance are worth everything to me. Thanks for coming over with Tom last week so Dan and I could take a well needed 2 hours at the mall together. Though we both felt a bit lost not having Sami to carry around. Sami loves coming to the FARM. And she LOVES Betty as well.
AND Carol Patrick my friend from Baltimore took me out for dinner Friday night - and we drank a beer (reminds me of our old Hamerjack days, NOT QUITE!) Dad stayed home with Sami. Saturday she watched Sami so Dad could go grocery shopping and Mom get work done. Thanks Carol, next time stay longer.
We will stay home today and watch the Super Bowl alone. But that is fine. It will be a few more months before we can venture to parties.
The groundhog saw he's shadow yesterday.
? Do we get 6 more weeks of winter ?
Thursday January 31, 2002 7:44 PM CST
Quick update for all the Sami fans. Friday Feb. 1st 2002.
Sami slept through the night. That was wonderful. We plan to cut back on the fluids she is getting during the night. She is getting so smart, she is something else.
Today she had a good day. She got sick only 2 time which we look at as a good thing. Sami wnet over Carol Roberts hous and was so good there. She ate played and had a wonderful time. When she got home she ate some more and then told Mommy it was night night time and had to go to sleep then.
We will try and update some more tomorrow night.
Hi Everyone,
Well Sandy and Sami got up very early this morning to make the trip to CHOP for Sami's CAT scan. Mommy thought that Sami was going to sleep the way down, but guess what, Sami was awake the whole trip. Well we had our 8 mm tape deck in the car playing guess who......yeah Barney. So this was a nice trip for Mommy Sami was very busy watching Barney.
Everything was going so smooth and fast that Mommy thought she was going to get out early and home in no time. Sami was great through the CAT scan and when she got out Mommy was there to nurse her.
Then Doctor Don can in to see Mommy and said she may want to stop nursing Sami. The MIBG scan yesterday showed her bowel area was glowing. This is the scan that if they see it glow it shows the cancer cells. He said not to worry they thought it may have been a problem with the dye. So they wanted to do another scan. She had already been asleep and they dont like to put her back to sleep twice in one day. So they took her back to the MIBG room and had to tape her to the table to keep her still. She did not like that.
Well for the results, they could not find any cancer cells in her body. The glow they saw was in a different area and was just the dye going through her digestive track. So NO CANCER !!!!!!!!!
For those of you who would like to see a miracle come on over and you can see Sami getting stronger right in front of your eyes. She is getting stronger and stronger everyday. We can not believe our eyes these last 2 days. She is eatting and talking more and walking more. Our Sami is getting better.
She is getting so smart she even tells us when she is ready for night night. And tonight as the 3 of us were laying in bed Mommy realized that this was the first day Sami did NOT get sick. She kept her food down all day and night so far.
We will try and give all of you some updates as to how Sami is doing this weekend and get some more pictures of Sami.
Keep the prayers and positive thoughts going to Sami. We can see them work.
Love to all of you
Sami, Mommy and Daddy
Wednesday January 30, 2002 11:07 PM CST
Hi Guys Sami here,
Tuesday and wednesday I had to go down to CHOP. It was nice to see all my friends again at CHOP. Today I had to have my MIBG scan, I dont know what they did because they put me to sleep. It was nice my Mommy stopped off at the Salernos farm and I got to see Sassy my pal and Betty went down to CHOP with us. THat was nice to have some company in the back seat with me.
Guess what I got to do on the ride down???? I got to watch Barney. That was so neat and Betty was ws with me to help keep my mind off of eating.
When I woke up after the scan My Mommy was there and I got to nurse and after that my Mommy was eating this cool blue slurpy and she gave me some. It was soooo good I wanted more and more and more. But I had to stop so we could go home.
When we got to the farm my Mommy let me get out and play with Sassy. I had lots of fun there. And Betty even made me my favorite Pasta. Boy just like home.
It is getting late and my Mommy and Daddy need their sleep. We are going back down to CHOP tomorrow. I heard we have to leave the house by 6:00 AM. That is too early even for me now a days.
Thanks everyone for your prayers and positive thoughts. And thanks Betty for going on the ride today, I realy enjoyed you being with ue.
Talk to you soon.
Love Sami
and My Mommy and Daddy send there love toooo
Tuesday January 29, 2002 8:24 AM CST
********CHECK OUT A FEW NEW PICTURES******************
Hi everyone,
Today Sandy and Sami are heading down to CHOP. This is going to be a busy week for Mommy. Sami is getting an injection and a blood test. The injection is for the MIBG scan she is scheduled for tomorrow. This si the scan that will show any live cancer cells. The last one was great and showed NO cancer cells. We are looking for this one to be the same.
Thursday Sami heads back to CHOP for a CAT scan. This is needed since she starts radiation on Monday of next week. They need this one to show where her organs are so they can try and miss them as they do the radiation. They will compare it to her first CAT scan and see where the tumor was and radiate around there.
The radiation is set for 10 day, monday through friday and the same the next week. The days will start out early, they want Sami at CHOP around 6 AM. At this time we are planning for Mommy and Sami to stay at the Ronald McDonald house. It is not going to be easy with the restrictions that Sami is on and her eating habits.
Sami had a great day yesterday, not getting sick as much and she ate good last night. We hope that this slows down doon. She is fighting it so hard not to get sick, and you can see in her eyes she is tired of getting sick tooo.
We'll let you know how things go today and the next few days.
Thanks for all your positive thoughts and prayers.
Love,
Sami, Sandy, Dan
Saturday January 26, 2002 8:20 PM CST
************CHECK OUT THE NEW PICTURES**************
Hi Guys,
How is everyone? I have been having lots of fun being home. Friday night my friends Carol and Tom came over and My Mommy and Daddy got to go out for a little while. It was great, I had Carol taking me all over the house. I pointed and she took me there.
I still get sick a few times a day, but I am able to fight it some times. My Mommy and Daddy follow me around with these bins.
Saturday My Daddy took me for a walk in the neighborhood and then he took me to see Sassy. She lives out on the farm with Carol and Betty. It was fun visiting Sassy and Betty. I got to eat some neat stuff and Betty made me special heart cookies. I also go to meet a race horse named Samantha Rose. Pretty neat name I think, Carol name her after ME. My Daddy took some pictures of me, Betty and Samantha Rose together. He said he will post them on Sunday.
Well it is getting late and I want to watch Barney and go to sleep. I think I will have another fun day tomorrow.
I love you all.
Sami
XOXOXOXOXOX
Wednesday January 23, 2002 10:19 PM CST
This is for the dedicated guests that look for an update each day. Usually when we are home I don't have as much to write or the time to update each day. But I know a few of you like Kelly, Betty, Roger, Karan...anyone else I should add? check Sami's website daily.
So here it goes. Sami is still getting sick about 3 times a day. Today her friend Liz came to visit. That gave mommy time to take a shower and do a bit of laundry. THANKS LIZ.
Sami and I played with her toys (she has soooo many) and watched Barney and Beethovan today. And we even took a nap together from 3 to 5, yaaa.
In the evening when Daddy comes home, Sami plays and eats with Daddy while Mommy goes up to work. After bath, Mommy steps in to put the little one to bed. These days the routine includes oral meds and hydration through Sami's central line. Then she snugs with Daddy, while Mommy goes back to work.
Tomorrow we expect Betty and Carol Salerno to come for a visit.
Don't forget to sign in, we love to see all Sami's admirers.
Tuesday January 22, 2002 9:44 PM CST
Sami's clinic visit went well today!
Our good friend Betty came with us to the hospital today for Sami's check up. It was great to have company. No, she doesn't sleep in the car. Would you if you got in the car at 9:30am, and you just woke up at 8:30am from sleeping 10 hours overnight? Yes, she is sleeping great (in bed with Dan and I)
Betty kept both of us company. I especially needed it to keep me awake. I didn't sleep much last night. Dad was sick and I was busy monitoring the IV fluids that were dripping in her central line. Sami turns during sleep and last night Dan found them around her body. We are concerned about strangling her. Funny, we don't worry about that at the hospital when she sleeps in the crib. But she doesn't seem to turn as much in the hospital. Maybe it is because of all the drugs she takes in the hospital. Speaking of drugs, Sami is whining well from the morphine and adavan. As usual she gets sick every time I give the adavan so I look forward to eliminating that soon. The morphine will take a few more days to reduce the withdrawal side effects.
Sami's blood test results were good. She didn't need red blood or platelets. Her new stem cells are doing everything they are supposed to. She'll go back to taking Bactrim on Monday.
Sami is scheduled for a cat scan on Jan 31st at 9am for the radiology department's study. She begins radiation on Feb 4. There are 10 sessions, Monday thru Friday for two weeks straight. She'll be put to sleep each day to reduce the risk of her moving. The plan is to radiate the original tumor site, since there is no live tumor visible. This treatment is to catch any live tumor, that is not seen by the scan, eliminating it before it can grow back. I'll still working out the details, but Sami and I plan to stay at the local Ronald McDonald house since this treatment is outpatient. It would be a pain to drive down each day, especially since the treatments will be 6am each morning.
Sami continues to be nauseated and vomit several times a day. She is hydrated at night to prevent dehydration. In the past, the sickness seems to last about two weeks. The good thing is she is interested in eating. She is routing around in the refrigerator and on the counter picking out food to eat. Her favorites continue to be pasta and waffles.
Do to her compromised immunities; she will continue to be under strict precautions for three months. This means limited visitors (no kids), visitors must wear masks (or Sami has to wear a mask when we go anywhere like clinic). She is not allowed to go to crowded places for up to a year. It is suggested to avoid malls, movie theaters and restaurants.
I'm always in need of helpers during the day. If you know anyone looking for a babysitting job, please let me know. Along with avoiding crowds, Sami also can't go to daycare. Now that the chemotherapy treatments are over, we are getting to the point that hospital stays are ending and I need to get back to a normal schedule at work. For those that don't know, I have continued to work full time clocking most of my hours when she is sleeping. That gives me little time to sleep or do anything else.
Thanks for all your support. We love reading the guest book messages.
Love, Sandy
Sunday January 20, 2002 10:50 AM CST
********************CHECK OUT THE NEW PICTURES***************************
Sorry for the delay in updating. The last few nights at CHOP I was dealing with sinus headaches (I was out of claritin) in my eyes (which made my stomach upset too) so I hated to get on the computer. It was enough of a strain just to get some of my own work done.
Today is Sunday. We are home. Grand Dad Jack and Aunt Diane are here with Dan and Sami. We are waiting for Angela to arrive. I hope to get caught up on these updates, e-mails and work.
It was great to come home yesterday during our first real snow storm. This morning the sun is shining and the snow has blanketed everything. It is wonderful. A winter wonderland. We watched a herd of deer wander through our back yard this morning during breakfast.
We have to go to clinic on Tuesday to make sure Sami's blood counts are ok. Clinic is closed on Mon or we would be there than. Our day will continue to be Wed with Don. I was so disappointed when they said we would not be going on Thursday.
Sami is still sick. She wants to eat but just plays with it when she gets it. She is back to nursing all the time.
We are whinning her off morphine and adavan (sp?). She is getting overnight hydration.
Otherwise she looks great. Lost all the new hair (still has the straglers on her head) and eyebrows and the new eyelashes that she got just last week. The sickness will be about two more weeks.
She starts radition in about 2 weeks. It is outpatient for 2 weeks. We will probably stay at Ronald McDonald House.
Keep in touch. Give us a call. Sign the guest book.
Sandy
908-704-8057
Saturday January 19, 2002 3:23 PM CST
SAMI IS HOME
More to come soon.
Saturday January 19, 2002 0:08 AM CST
Hi Everyone,
Sorry for the delay on the updates. Sami has had her tubies unhooked and she is keeping Mommy running after her, at even more energy than you can think of.
The Doc's keep changing their minds as to when Sami can go home. They want her to be takeing liquids. Sound easy, but as Sami starts to drink and gets back into nursing it seems to some up just as fast. So Sandy has been working on getting the meds right to help Sami keeping things down.
Sami was finger painting today, I can't wait to see her art work. She is like Mommy though, she does not like getting her finger all messy. What a little girl she is.
I am going down to CHOP on saturday to pick them up and make it home before the snow is due to hit. I can't wait to get them home, the place just isn't home without them.
Sandy got the information on Sami's next step and she will fill you all in on it.
Keep those positive thought and prayers coming. You can see them in Sami's eyes with her strength.
I will try and post some new pics of Sami.
Thank you all
Dan, Sandy, & most of all Sami
Wednesday January 16, 2002 10:50 PM CST
ANC is no longer an issue. The doctors aren't even worried that she hasn't had anything to drink or eat. Because she is getting so much fluid from her IVs, there is no incentive for her to drink. Would you if your throat hurt and you didn't have to?
Like last time we are having some withdraw issues. She had us all a bit worried or should I even say puzzled, last night and this morning, but we have a game plan and things are looking better tonight. The plan is to disconnect Sami's tubies tomorrow. Give her all the meds orally (isn't going to be fun - but I'm going to let the nurses take her on for the most part - here that Marie). See when we go home she'll have to take the meds orally anyway. Might as well get started. Dan and I'll need to do the fighting then (unless Marie wants to come). Hopefully we will get her to the point over the next two days that she will not need as many meds to make the transition home easier for all of us. And with the fluids turned off we are encouraging her to drink.
Hopefully we have given Sami her last GMCSF shot (miracle grow shot) Her ANC need sto be over 5,000 which we suspect it will be tomorrow. We shall see.
We have ventured out of the room with a mask on...she is so good. But I will only let her go in the Bone Marrow transplant hallway. She wanted to go further, but I didn't feel comfortable with that. We don't want to take any chances.
As for Todays Blood Counts:
ANC 3538
WBC 5.8
HGB 9.1
PLTS 16 (she got platelets today)
good night, Sandy
Tuesday, January 15, 2002 4:30PM
Day 12
Sami is napping. Benadryl is a wonderful thing. Mommy just ate dinner. Thought I would update the website in hopes that I can go to bed early tonight. Last night between working, cleaning toys, updating website and laundry...I didn't get to bed till almost 2 and Sami was up at 4 and didn't want to go to bed. By 6am, I brought her to bed with me. She loved it. But I made sure we were up before the doctors came around.
Sami is playing and getting around great. Her mouth still hurts and she is not drinking or eating. The docs are now saying she just needs to be drinking to go home. But she is not interested.
Grand Dad Jack spent the morning with Sami and went home this afternoon. Sami also got lots of guests: Molly and Kelly stopped by after her cat scan. Don't worry Kelly it will all be clear. We love and you LOOK GREAT as well. Chris, glad you stopped in with your smiling face. Give hugs and kisses to Erich for Sami. Samantha, glad to hear that Alivia is doing better and hope to have her back to 3EAST tomorrow.
Sami played CHOP Bingo today and won two prizes. They arrived while she was napping so she hasn't seen them yet.
And now what you all are hooked on...Sami's Blood Counts for today.
ANC 1674
WBC 2.7
HGB 9.1
PLTS 25
Thanks for all the support.
Sandy
Monday, January 14, 2002 11:31 PM
Day 11
Sami continues to amaze us. Her ANC was 660 today. Way above what I expected. If she goes above 250 for two days they take her off of oral meds. Because it was so high, they stopped the oral meds just in time this morning that Sami didn't have to take them. I think it made the nurses happier than Sami. She doesn't know any different.
Sami played all day finally taking a nap at 3:30 till 5:30. Then down by 10pm for the night (mommy hopes). I'm doing laundry tonight. I miss Aunt Patty. She did laundry for me every other day so I haven't had to think about it for over a week.
Grand Dad Jack spent the day with Sami and me. She loves giving him kisses through his mask. Soon Sami can leave the room with a mask on. We don't plan to go out much so she doesn't catch any germs.
Now if we can only get her to eat and drink we can go home. She still has mouth sores and in her throat. When she wakes up from sleeping she has a very sore throat. So it hurts to eat. But she has interest. That's good.
We are whinning her from her meds which will take a few days. Last time she wasn't whinned slow enough so I'm on top of it this time.
Check out the new pictures. GREAT JOB Daddy.
Love, Sandy
ANC 660
WBC 1.5
HGB 9.8
PLTS 44
Monday, January 14, 2002 10:30 AM
Day 11
Big breaking news...
Sami's ANC is so good they have taken her off of oral meds. YEA !
Blood Counts
ANC 660
WBC 1.5
HGB 9.8
PLTS 44
All we have to do is get her to drink and eat to go home. Her mouth and throat are too sore right now. But she has interest and she is trying. Won't be long now.
Sunday, January 13, 2002
Day 10
Sami had a great day with Daddy and Grand Dad Jack. Mommy went home for a couple of hours to get some work done on her super fast computer with cable modem.
But last night wasn't so good. Sami was up at 2:30 looking for company to have tea. It took about an hour and a half to get her back to sleep. Then up again at 5am. Mommy got her back to sleep once again but not for long. She was up for good at 7. Daddy's turn.
I know, you want to know her counts...you are getting hooked too, right? Well, as scheduled, the ANC is climbing. At this rate we could be home by next weekend. But there is only one problem. Sami has to be eating and drinking to go home and she isn't doing either. That could hold us up. Though she is interested in food, with sores in her mouth and throat she doesn't want to or is able to eat. It will take some time.
ANC 63
WBC .9
HBG 8.8
PLTS 78
Saturday, January 12, 2002 at 12:50 PM (CST)
Day 9
Yes, our Sami is an overachiever once again. I had hopes that Sami's blood counts today would give us the sign that she was healing with a few white cells (.3 was the goal). Instead she blow us away with .6 white cells, 25 cell count and even an ANC of 24.
Now is the time we watch the ANC number grow. When her ANC hits 200-250 they will stop torchering Sami with oral meds (YEA !) This will probably be around Tuesday. When her ANC hits over 2,000 we are able to go home (hopefully next weekend). And over 5,000 (depending on the doctor) she be able to stop the GMCSF miracle grow shots.
But we have a lot of wining to do before we can go home. Sami is on lots of meds. Last transplant she went through withdrawals, so I have already requested doses to be cut in half or lowered in antisipation of going home in about a week or so. She'll probably be required to eat and drink to leave. Currently she is not nursing which she did through the last transplant.
She see still feeling sick and has sores in her mouth and mucos, but it is nothing like it was 2 days ago.
Sami is talking alot more and playing hard (today from 10 to 4). She is napping now. I plan to wake her between 7-8. Otherwise she will be up again till midnight tonight.
Aunt Patty flew home today. We miss her already. Thanks for all the support Patty and the Slack family for letting her come (not once but 3 times in less than a year).
Love, Sandy
Saturday, Jan 12 Blood Results
ANC 24
WBC .6
HGB 9.4
PLTS 146
(notes yesterdays were correct).
Friday, January 11, 2002 at 11:19 PM (CST)
Day 9
Sami had a pretty good night. We still woke her for suctioning, but not as much as the night before last. She slept in her own bed/crib till 8:30am. Mommy loved sleeping in too (I usually go to bed at 2am).
Only problem was she woke up very swollen. Probably from laying flat all night and morning. Usually she is up at 5am or so sitting on laying in my arms which helps to move the fluid around.
Along with the swollen face, she scared me this morning with lots of red blood and mucus. Usually it is more like old dark blood that is good to throw up. I thought we might be in for a rough day and a turn where we didn't want to go. But again, this is all normal here in transplant. Her platelets are low and she got a transfusion.
OH NO...am I getting too graphic? Well this should be it. BECAUSE....SAMI IS ON THE MEND.
By noon, she was walking, talking and playing. Only suctioning was during meds and after nap. She played from 9am to 3pm. Napped 3-8 and was up till 11:30pm.
I look forward to the blood test results tomorrow. I have had a goal for Saturday to show the first signs of WBC(White Blood Cells) and looking at Sami today, I think I'm right on.
Everyone do the ANC dance. With first cells appearing, ANC is close to follow.
Seeing the light at the end of the tunnel and feeling good.
Love, Sandy
FRIDAY, Jan 11
ANC 0
WBC .1
HGB 9.2
PLTS 79 ?
I don't know if this platelet count is correct. She got a platelet transfusion and to get that the count is under 20. I think something is wrong with this number.
I'll ask tomorrow.
Thursday, January 10, 2002 at 11:43 PM (CST)
Hello All, Day 7
Long night. To help Sami with the mucositis we continued to suction her mouth out every 2 hours throught the night. This is very painful. She has sores in her mouth and her throat feels like "strept" (I think that is how you spell it - bad sore throat)
By 5:30 she wanted to snuggle with mommy, but like yesterday not to sleep (which mommy needed). We watched Barney and played with pictures and coloring. She was up till about 10am then took a nap till 12. Again woken by the suction. But she stayed up a few hours, playing with the physcial therapist and Aunt Patty. She slept from about 4pm to 8 and mommy took a short nap as well.
Daddy came for a visit arriving about 8pm. After Sami's bath she played with things in Daddy's pocket. She went to bed at 11. We will continue to suction her mouth as needed every few hours tonight. The more we get out, the less she swollows and upsets her stomach and more.
She continues to hate the suctioning, oral meds and mouth care. Mommy usually leaves the room and the nurses now double team her 3 times a day to get the meds in her. It is hard for all of us, nurses included. But Sami is quite the tropper, giving the nurses high fives and blowing kisses when they leave (she doesn't hold a gruge).
Thanks for all the new messages. You help me keep going. Days and Nights are getting long. Hopefully Sami will be on the mend in a few days.
Thursday, Jan 10 Day 7
ANC 0
WBC .1
HGB 9.6
PLTS 19
Sami got platelets again today. They say she is using them up quickly because of healing is beginning. Look for the WBC (White Blood Count) to begin to rise soon. .1 and .2 are really nothing and not a good indicator...but .3 with a trendd going higher would be the sign to start celebrating. I'm hoping by this weekend to start to see the WBC to increase.
Sandy
Wednesday, January 09, 2002 at 08:41 PM (CST)
Sleeping...Sleeping...Sleeping.
But that is okay if Sami sleeps the day away.
She woke about 5:30 this morning. I tried to snuggle with her to go back to sleep (because I needed it) but she wanted to play, check out who was outside (no one ... the sun wasn't even up yet), and watch Barney. She played with pictures and colored for about an hour and more. But 8am she was ready to go back to sleep. She slept between times when we had to wake her for oral meds. She continues to run fevers and receive antibotics, but no infections have been grown (that is good).
Thanks for Molly for bring lunch for Patty and I. It was nice visiting. We missed Kelly...but we were very glad she stayed at home just 6 weeks post transplant. We don't want you catching any germs here Kelly. Thanks for all the letters to Sami.
Finally Sami woke for the day at 2:30 ... she played and watched Barney. We gave her a bath early at 6pm. She visited with Grand Dad York and snuggled with Granny Karan while I ate dinner with Patty and Dad.
Blood Counts
ANC 0
WBC 0
HGB 10.3
PLTS 18 (see got platelets today)
Please sign in the guest book and say hello. It is my connection to the outside world. Any questions?
Sandy
Tuesday, January 08, 2002 at 09:35 PM (CST)
Day 5
Sami slept most of the day. Which is good because she feels pretty crummy.
This is all expected. As I mentioned yesterday: sores in her mouth, lots of mucos and medications. Actually we had to wake her to give her the oral meds.
The only time she really became awake today is when her good friend Catie visited through the glass door of Sami's room. Catie was there for her treatments. Sami got up and walked to the door to see her and walked around looking for things to show her. This was just enough to get her going. Then her occupational therapist arrived and played with Sami for about a half hour. She did great. But it made her really tired. She slept from 3 pm till we woke her at 7pm for meds.
After the meds she took her bath (which we planned early than usual since she has been too tired to enjoy lately). But even 7:30 was too late as she closed her eyes and almost fell asleep in the tub. When she got out and after she was dressed, she laid her head on Aunt Patty's shoulder and fell fast asleep.
She didn't even wake up at 10pm when the nurse and I gave her GMCSF shot "the miracle grow that stimulates cell grow.
Though she got a bit annoyed when we rolled her over for her diaper to be changed. We usually change her diaper 2-4 times a night and she usually sleeps through it or goes right back to sleep.
Maybe you have wondered, what is stem cell transplant?
Stem cell transplantation (SCT) is a special therapy for patients with cancer or other diseases. A stem cell transplant involves taking cells (stem cells) that are normally found in the bone marrow, filtering those cells, and giving them back either to the patient they were taken from or to another person. The goal of SCT is to transfuse healthy bone marrow cells/stem cells into a person after his or her own unhealthy bone marrow has been eliminated.
For more information see the CHOP website at: http://www.chop.edu/consumer/your_child/condition_section_index.jsp?id=-9665
Sami's blood counts for today:
ANC 0
WBC 0
HGB 8.3 she got red blood cells today
PLTS 43
Monday, January 07, 2002 at 10:38 PM (CST)
Day 4
This is the tough week. Sami is feeling pretty sick. She has sores in her mouth, mucos coming from her mouth, sore throat and more that we don't even know. We have increased her pain meds and she is fighting fevers.
Sami slept most of the day. A few times she looked at pictures, colored and watched tv. She tried to play with the physical therapists but she only lasted about 15 minutes because she got tired.
Dispute all the pain and frustration of taking oral meds and mouth care, she continues to give loving blow kisses and high fives to her nurses.
Everyone loves Sami...
Sandy
ANC big 0
WBC .2
HGB 9.4
PLTS 22
Sami got a platelet transfusion today.
We don't expect white blood count and ANC till next week.
Sunday, January 06, 2002 at 10:28 PM (CST)
Sami is feeling pretty crummy.
We increased her pain meds today to help with the mucositis and diaper rash sores. You can tell that her throat is sore and her mouth is swollen. We haven't seen sores in her mouth yet, but they can be anywhere in her GI track. Her bottom has breakdown (sores) that makes it uncomfortable to change her diaper.
But inspite all this, she continues to play and have tea parties. Her play time has shorten and the naps are getting longer. Sleeping is good. We just have to wait out this week. Hopefully by the end of the week her blood counts will begin to come back and she'll be on the mend.
Today Aunt Patty came to see Sami. She flew in from Seattle late last night. I'm so happy to have her here all week.
Daddy was here all weekend...keeping us feed and well taken care of. We will miss him this week as he returns to work.
Thanks for all the prayers and positive thinking. Sami is going to be fine and home real soon.
Sandy
Saturday, January 05, 2002 at 09:56 PM (CST)
Day 2
Just waiting for some cells to come. Probably won't see anything till next week.
Sami continues to be herself, surprising everyone that she wants to nurse and play. Yes, she is sick (vomitted 3 times today) but she bounces right back.
Today Sami colored in her new coloring books that daddy brought, watched Barney and played with toys in her toy box and of coarse her favorite: pulling out her clothes form the draw and putting them on the chair and then back again ...over and over. The thing I don't understand is why when she is done, most of the clothes are either on the chair or floor...very little in the draw.
Dad brought mommy lots of food, yummmy. And he picked up Aunt Patty at the airport at 10pm.
For those interested in cell counts:
ANC 0
White count 0
Hemoglobin 11.6
Platelets 36
Because she just got Platelets 2 days ago and they dropped drastically today from 83...she is getting Platelets again right now. Platelet transfusions are common. The last transplant she got 3.
Sandy
Friday, January 04, 2002 at 10:40 PM (CST)
Hello All
Day 1
What day 1, you say...you have been there over a week. Yes, but in transplant days, the days leading up to transplant are negative and the day of transplant is day 0 so that makes today Day 0. So far Sami has received one blood transfusion and one platelet transfusion. She will probably need platelets a few times.
The chemo and stem cell make Sami feel nauseated. But she can't tell you that. I get the clues sometimes. But sometimes I just follow her around with a bucket...which is frustrating. And when you are least prepared you get hit with it. Needless to say the vomitting has increased and well as doing laundry (which i'm doing tonight).
Despite it all, SAmi continues to play. She is quite the fighter. And full of energy especially after getting sick. You know the feeling...you feel crummy and once you get sick you feel better.
Daddy is coming on Saturday. We can't wait.
AND...Aunt Patty flies in Saturday night at 9pm. She'll be here to help for a week. AND we are sure glad.
Don't forget to check the updates each day as I add a new journal entry every night. If you miss one you can check out the history. Dan changes the pictures about once a week.
Sign the guest book as much as you want. We love to check the messages.
Thanks, Sandy
*********Look at SAMI'S New Pictures from Christmas***************
Thursday, January 03, 2002 at 06:23 PM (CST)
STEM CELL DAY !
Sami got her Stem Cells today at 4pm. Those that really know Sami and have seen her here at CHOP can will smile when I tell you that she got her Stem Cells in her favorite position....."sitting in the chair with mommy, nursing and falling asleep"
For those that don't know about Stem Cell Transplant, the Stem Cells were harvested in June from Sami. They are in a clear liquid in a needle totalling 30ML and they are pushed through her central line. No surgery, No pain. Just a bit of a smell from the preservative.
Sami had a great day. Because of the blood she got last night...she was full of energy today. She skipped her morning nap (even with benadryl) and she didn't fall asleep till 4pm. Here it is 7:30 and she is still sleeping. I'm a bit concerned how this is going to throw off the night since she usually gets her meds at 8pm, bath and bed about 9pm. Her nurse is waiting for her to wake up to change her med lines. I will probably wake her in a few minutes.
Sami's friend Zachary Doctor came to visit today. He is 90 days post bone marrow transplant. It was his first day without a mask. He looks great. Sami was glad to see him through her special double window door. Zackie's mom Dana brought me a ham dinner, mmummm good. Thanks, Dana.
Thanks for all the messages and keep in touch.
Sandy
Thursday, January 03, 2002 at 12:27 AM (CST)
Well we miss Daddy. He went back to work today. But Michele Novak came to visit and brought me lunch. THANKS.
Sami is pretty tired these days. Her hemogoblin is low, she is on morphine round the clock and she is getting sick about twice a day.
She stopped eating a few days ago (only trying a few bites of waffle or ice a day) But she continues to nurse at the surprise of the medical staff.
She has no bone marrow at this point with a cell count of 0. Platelets are dropping...probably will get them tomorrow. Her red blood cells were down to 8.4 today. The blood has been ready since 2pm but they haven't transfused yet at it is 1:30am. Hopefully they will work it in tonight. But Sami has a lot of meds running and it takes about 3 hours to run blood and that throws off the meds schedule. Oh, but they will get it all done somehow.
Because of the low hemogoblin (red blood cells) she is very tired. Benadryl makes her sleepy and with round the clock morphine the naps are becoming more frequent and longer. She is napping about twice a day ... usually just after benadryl. And now sleeping through the night, diaper changes and all.
It was a busy night, getting Sami's oral meds, bath, bed, cleaning her toys, washing clothes and me working. Now I need to get to bed.
Sandy
Tuesday, January 01, 2002 at 11:23 PM (CST)
Happy New Year to ALL
Sami did great today. Mommy and Daddy spent the day of rest with her. Though Dadd had to leave tonight to go back to work tomorrow. We will miss him until he returns on Saturday.
Sami continues to play. The anit-vomiting meds are working. She only got sick twice and that was when the meds got a bit behind.
Today Sami enjoyed watching the Mummers parade. She loved the colorful customes and music. She also loves to play with her clothes, emptying the shelf and filling up the laundry basket.
I'm hoping for more sleep than last night. She woke up at each diaper change. Her bottom is really red and sore. She started on morphine tonight.
Thanks for your positive energy and prayers.
LOVE Sandy
Monday, December 31, 2001 at 06:56 PM (CST)
Day -3 The last of the chemo went in and is over as of about 2 hours ago.
We have now put the chemo behind us. With the news from the MIBG scan (not showing any cancer cells) and the strength that we see in Sami we look forward to 2002 as a building and growing year. We will be looking out Sami's window at CHOP tonight at midnight to see the fire works going off at Penns Landing in Philly. We are looking at this as also a celebrations for Sami. A symbol of her strength, and determination to beat this.
Sami is doing great. She is still playing and running around the room keeping us all busy. She continues to have her tea parties and goes for rides in her car.
We are having a contest with Sami's christmas pictures. We are having the CHOP staff pick their favorite pic of Sami. They are having so much fun looking at Sami pictures.
They are pumping her up with lots of fluids, so we need to change her alot. She has just about stopped eating food, but she is still nursing.
This Thursday is the big day. They will do the stem cell transplant and then we wait for her cell count to come up. This should take a couple of weeks.
Sami loves to have tea parties so if you want to come to one you are most welcome (as long as you are healthy and not been around any sick people).
The phone number to the room is 215-590-6327, we would love to hear from you.
Happy New Year !!!!!
We are looking forward to a healthy 2002.
Thank you all for you prayers, positive thoughts and support.
Sunday, December 30, 2001 at 09:59 PM (CST)
Day -4 The last day of Chemotherapy.
We are going to put Chemo behind us in 2001, not to see it again. The chemo that started today runs for 24 hours and will be finished Monday at 5pm. The next 3 days are called "rest." It just means no chemo. Waiting for the drugs to do their thing and prepare Sami's body for the stem cell transplant.
In case you don't remember from last time... here is a reminder. No surgery. Just a quick 5 minute injection into her central line filled with the stem cells that were harvested from Sami herself in June.
After that we just wait until her blood counts recover so we can blow out of this hospital (hopefully once and for all).
Sami's counts continue to drop. I expect them to be pretty close to zero by tomorrow. So far she is still feeling pretty good. She has not gotten sick yet and she is still eating. She is starting to fight the oral meds so the nurses are coming in with helpers. Dan and I step out during this procedure. She seems to put on an act when we are in the room.
She likes looking out the special window on her door that allows her to see out at her level (the only room that has this). Tea parties were the hit today along with basketball. She is quite the dunker.
Dan, Sami and I plan to bring in the new year together in her room. Hopefully Dan and I will be awake to ring in the New Year (maybe we can take a nap during the day when Sami does).
We would love calls or healthy visitors. The number is: 215-590-6327.
Sandy, Dan and Samantha
PS. Last time Sandy had a lot of helpers lined up to come to the hospital. If you can spare the time it is a great help for Sandy so she can get out and do a few things like eat. If you can help please e-mail Sandy and check out her schedule.
Saturday, December 29, 2001 at 10:32 PM (CST)
Well the third day of chemotherapy. Day -5 they call it here in transplant.
Sami had a much better day. At times still wanting to nurse, but not much different than a normal day. Nothing like yesterday. The nurses think it was just a nausea and stomach upset from the new chemo drug that she is getting this time....and the antibotics kicking her stomach and bowels around.
Daddy and Grand Dad were here to keep her busy so she wasn't so bored and wanting to nurse....and her bowels are moving a bit more which is releasing that pressure.
All and all a pretty good day considering what she is going through. One of the three chemo drugs are done and one more day to go for the other two. Counts are beginning to drop as expected.
Just to give you an idea of Sami's day: she gets 2 antibotics by mouth 3 times a day. Along with that mouth care (like brushing her teeth but the concern it the gums, checks, tongue and roof of mouth). A protein drink twice a day that should help with the mucostis. In addition she gets 2 IV antibotics three times a day. She gets 4 different antivomitting meds spaced to give her around the clock releif. So far they are working (they won't always). She has not been sick.
Sami is still making her way around the room. Watched tv...Barney of coarse and new doggie friends from the movies Beethovan and Homeward Bound.
She played with her Butterfly Girl Car that Jason and JoAnn gave her for Christmas. She walked the baby that Candy and John gave her around the room. She kept asking to go outside though. That is a problem because she is in isolation.
Daddy cleaned her new tea serving set tonight that she got from the Salernos at the farm. She will serve tea at high noon for any callers.
UPDATE: Sami was ready to serve tea at 5 AM. She did not have many takers, though she was looking. So it was Sami and Mommy having tea at 5 AM.
Till tomorrow, stay healthy....
Sandy
Friday, December 28, 2001 at 10:38 PM (CST)
Well day 2 or -6 is what they call it here at CHOP.
Not sure what Sami's problem was today. She wanted to nurse all day. And even that was not what she wanted at times. She seemed tired but couldn't fall asleep. She seemed at time extremely hungery wanting to eat (usual as that is). It is like she couldn't get comfortable.
At this point all the many, many medicines are getting to her. She is full of fluids. Moving her up to a number 4 diaper (size from normal 3) and changing her between 1 and 3 hours is not enough. She is wetting through to her undershirt and dress. We need to continue through the night and hope that she doesn't urinate while changing the diaper or we could end up changing clothes and the bed as well.
Hoping for a better day tomorrow. Daddy will be here through Tuesday.
Sandy
Thursday, December 27, 2001
Happy Birthday ! Sami is 21 months olds.
Sami was admitted on Thursday for her second stem cell transplant. It was hard for her and mom to go back into isolation. 3 different Chemo drugs are running 24 hours a day for 4 days. Then 3 days of rest and the 8th day which is called day zero, she is injected with her stem cells. That is it. Well, then we have to wait for her cells to come back. Doctors say 4-6 weeks, but if Sami has her way it will be 3 weeks like the first transplant.
Keep tuned in, positive and send your message of hope.
Check out the Christmas pictures.
If you want to call please do, if the time is not good or I cant get to the phone we have our answering machine and if it comes on please leave a message so we can hear you and dont forget to leave your phone numbers, that makes is so much easier to call you back. 215-590-6327
Thanks,
Sandy and Dan
Wednesday, December 26, 2001 at 12:05 AM (CST)
OK, you have been checking the website for 2 weeks waiting for an update. I'm sorry we have been busy.
Samantha's last MIBG scan could not detect the tumor. Yes, she is cancer free. No, she has to continue the scheduled protocol to reduce the risk of it returning.
Sami is doing great. We have been enjoying every minute. But we have been busy with work, the holidays and of coarse Samantha.
Samantha was in isolation this month which kept us home bound for the most part. If she did go out in public which was rare, controlled and short...she wore a mask. All visiters (and kind workers) also wore masks upon entering the house. But it all was worth it because Sami is healthy. No fevers and with just one day go to, we are on schedule to return to CHOP for the second stem cell transplant on December 27th. I will do my best as I did in November to update each day with Sami's progress in transplant. As before we are told it could be 4 to 6 weeks. But Sami proved that it could be done in 3 weeks and we are hoping for the best this time as well.
Christmas (and the month of December at home) was beautiful. Samantha was an ANGEL. We played with her, watched her, photographed her, hugged her and kissed her. We are in all of her strength and just plain cuteness. We are so blessed.
Dan will post pictures this week.
Thanks to all for the well wishes, positive thinking, holiday cards and gifts.
Lets pray for a healthy New Year !
Wednesday, December 12, 2001 at 03:27 PM (CST)
Hi Guys
So what has everyone been up to?
I am so busy with my tea parties, and helping Mommy shop and cook. I push my basket around the house and help Mommy shop from the cabinets and get dinner ready. And of course I get my daily dose of Barney in, when I can.
It has been cold out so I am not getting to go out and play much outside. Yesterday the weather was real nice and My Mommy took me outside to play. I love to throw the ball around and have Mommy chase it. It is so nice to see the birds and planes flying around.
My Mommy and Daddy got to go out Saturday night to visit with the neighbors. My Aunt Arlene came over and we played all night. That was so much fun.
I wish everyone could come over for a tea party and see my Christmas tree. It has lots of lights and balls on it. I have a few favorites. One is Tigger pulling Pooh through a tree. They go in and out, and my other one Tweety with a punch of blinking lights. I show them to all my friends that come over to visit.
Well keep in touch and let me know what you are up to.
Love you all
Sami
PS. Mommy and Daddy say hi too
Tuesday, December 04, 2001 at 02:19 PM (CST)
Hi Guys,
How is everyone doing?
I am doing great since I came home from CHOP. I go this week for some tests. My Mommy is going to take me down Wednesday and Thursday. I get to see all my friends at CHOP.
Sorry for not keeping you up dated. I have been so busy and by the time I get my bath I am so tired I go to sleep earlier that I had been.
I have been playing and having tea parties and having lots of friends come to visit me. When my friends come over they are so nice to put on a mask. And when I want to go outside I put my mask on. My Mommy explained to me how important it is to keep the mask on, so I do try to keep it on.
My Mommy and Daddy have been so busy trying to keep up with me. I do keep them running all the time.
I have been feeling strong and good, after my last treatment. I still get sick from time to time, well 2 to 3 times a day if you need to know. And I try to let Mommy and Daddy know I am not feeling good. But then after that I am ready to go.
Oh last weekend My Mommy and Daddy went out and took me for a ride and we got a tree put on top of Mommys car. Then Daddy brought it in the house. I thought something was up when they moved some of the stuff around in the room. It is really nice, and real big, and it smells nice too. Daddy has to put woorder (water) in the tree every day. I like it. Then, my Mommy and Daddy took me out to a park. They stopped and let me sit in the front seat, I have never been in the front seat before. Daddy drove real slow and we got to see some real nice looking lights. I was so excited to see them, it was exciting and the lights were so bright, I got to see a doggie, and all kinds of animals and I even saw Santa in lights. I was real good when we went past Santa. I think he was taking some notes.
Well I should go for now, check out the pictures my daddy put up and dont forget to sign my guest book. I love to hear from all of my friends.
Love to everyone, Sami
Friday, November 23, 2001 at 10:26 PM (CST)
Check out the NEW pictures My Daddy posted wednesday night 11/28/01...
Hi Guys.... its me, Sami here. Well Thursday was a big day. The nurses and doctors have been so surprised as to how I was doing they decided to let me go HOME. I dont know why they were all so surprised. I wanted to break all the records in transplant, and I did.
It was hard to go home and leave all my friends that now feel like family at CHOP. I really liked playing in my big room. I had some fun times in there.
Well My Daddy came down to CHOP to pick me and Mommy up and he took us home. I have never seen Mommys truck so full. I though my Daddy was going to put my car seat on the roof because there was so little room in there with all my toys and stuff.
I got home and it was so nice to have all my things. And guess who I saw? Naz, Anjeli and Kabir came over and I got so excited. We visited through the door. My mom and dad dont want me to catch any germs (whatever that is). And then my friend Liz came over and it was fun to see her. She brought Thanksgiving dinner for my parents. Im not eating so much just yet so I passed.
I didnt feel real good during the night. I got a little sick and my Daddy walked me around. It was nice to know my Mommy and Daddy were both so close. He ended up putting me in bed with them since I really did not want to go in my crib alone when I was not feeling real good.
On Friday, Jason and Joan came over and we had a tea party. I got to play with them and had lunch with them too. It was so nice to have them over. Then aunt Arleen made a short stop over, it was so much fun have friends to visit.
Well I will let you all know how things are going here at home about once a week. And Ill make sure my Daddy puts up new pictures more often.
Check out the new pictures. Guess who they are of . . . . . .yup ME while I was making Sami music in my room at CHOP.
Love to all of you, Sami
Wednesday, November 21, 2001 at 10:33 PM (CST)
We are going home on THANKSGIVING !
Unbelievable, that girl.
Sami continues to amaze us. She wore her mask again today so she was able to leave the room. "Outside" is going out of the room for Sami. We walked the oncology unit and even took a trip out of the unit (but on the same floor) to get a heart echo test. We will need to return on Monday for CBC to see if she needs platelets. Tuesday she is scheduled for a GFR test of her kidneys and Wednesday she has an appointment with her doctor. WE are hoping to consolidate all that so we don't have to make 3 trips in a row.
For those that don't know. We live about a 2 hours drive to the hospital (each way). IT makes for a long day with a toddler strapped into a car seat. AND NO she doesn't sleep. Would you? you sleep all night, wake up at 8 and you are in the car by 9.
Today Sami was up at 6am (because the nurse was changing her diaper). But mommy went to bed after 2am so she wasn't happy to get up at 6. But I figured...well maybe this will change the late nap and bed time schedule...and it did in a way. She napped from 12 to 2, then unusual thing..fell asleep at 7:30. In shock, I was able to pack up a few things and help Aunt Arlene load up her car with some stuff. Then I did a few e-mails. That was until the nurse came in to remind me that she needed to get her the GMCSF shot. That wonder drug that helps her ANC increase so well. So of coarse that woke her and she got her second wind. She just went to bed at 11pm.
Sami will be discharged on Thursday. Other than tests, she will be home until the next stem cell transplant. Yes, we have to come back and do this all over again. There will be different chemo drugs and the recovery is expected to be slower, but shall see about that. Scheduled return date is Dec 27th.
Sandy
Blood results for Wednesday
Cell Count 100
ANC 2025 (keep it up)
WBC 2.7 (healing)
HGB 11.7
PLTS 81 (wow)
Wednesday, November 21, 2001 at 12:58 AM (CST)
Sami wore her mask so she was able to leave the room today. What fun ! Mom is in shock.
She is also getting back to her old self, taking late naps that mom keeps waking her to get her to go to sleep at night..which has been after 11pm each night.
I need to get some sleep since she gets up at 7....
I'll try to add more tomorrow.
Sandy
ANC 1600
Monday, November 19, 2001 at 10:46 PM (CST)
Monday, Sami played with her nurse Debbie, played with the music therpist, read book with my friend Barri-lynn (while I ate the treats she brought....scrumcious chicken salad sandwich, homemade apple sauce and birthday cake (her daughter Tracy's 14th birthday was this weekend. Amie's 18th birthday in next month- Happy Birthday girls. Now stop getting so old, you'll caught up to me - I'm 29). Carol came this evening with dinner for me and a hand as she played dollies and had tea party with Sami. She was amazed how well Sami looks.
Sami is doing fabulaous. If she would wear a mask she could walk the halls. But so far she just trashes them.
Sami is feeling so well she is having a hard time falling asleep. Tonight she didn't go to sleep till 11:00pm...that was after a full dose of benadryl.
We are looking for an ANC of 5,000 to go home. Looks like she should hit that by the weekend.
Sami's blood counts.
Nov 19, 2001
Cell Count 100
ANC 306 (what an overachiever!)
WBC 1.7
HGB 11.0
PLT 26
Sandy
Monday, November 19, 2001 at 12:31 AM (CST)
Sunday, Sami woke happy to see Daddy arrive early. He stayed at the Ronald McDonald House last night. I slept on an air mattress to give it a try before we buy one. The chair is breaking my back. The only probably is the mattress lost its air. Didn't like that. Anyone have any advise or an air mattress I can borrow. I guess we will have to break down and buy a AEROBED.
Sami was an over achiever.... getting an ANC of 16 on Day 10 of stem cell transplant.
We are shooting to break the three and a half week record. Can't wait till tomorrow.
She is doing fabulaous.
Grand dad Jack came with breakfast from Aunt Dolores. And I finished the crab cakes for dinner.
Sami is feeling so well she is having a hard time falling asleep. Tonight she didn't go to sleep till 11:40pm..that was after a full dose of benadryl and morphine.
Thanks to Zoe and her parents for the neat doctors cart and medical tools. Sami loves it.
We are looking for an ANC of 5,000 to go home.
Sami's blood counts.
Nov 18, 2001
Cell Count 25 (yea!)
ANC 16 (yea !)
WBC 0.4
HGB 8.1 (getting red blood tonight)
PLT 46
Sandy
Saturday, November 17, 2001 at 10:59 PM (CST)
Saturday, Sami woke happy to see Daddy arrive early. He brought bagels, made muffins and cookies. He likes to keep the nurses buzzing.
Marie, (Sami's primary nurse) gave her the normal morning oral meds and mouth care while mommy and daddy ate breakfast. Sami had a fun morning playing with all her toys. She enjoyed showing daddy everything. Mommy got a chance to get some work done.
Grand dad Jack came with lunch for mommy...crab cakes of coarse.
Sami took a good nap, though she fought is as long as she could till 3:30 and slept a more normal 2.5 hours comparied to the recent 4 hour naps of earlier this week.
Mommy got some more work done and had a quick dinner with daddy while grand dad Jack sat with her.
Yea, we got our first Cell Count today. This is a good sign to show that the cells are growing and her body is recovering from the stem cell transplant.
We are hoping for more cells tomorrow and maybe an ANC by early in the week. We are looking for an ANC of 5,000 to go home.
Sami's blood counts.
Nov 17, 2001
Cell Count 5 (yea!)
ANC
WBC 0.2
HGB 8.3
PLT 17 (Sami got platelets today)
Sandy
Friday, November 16, 2001 at 11:05 PM (CST)
Friday, Sami woke happy and mischief at 7:30am. Carefully examining her IVs as she stood in her crib. See she sleeps like no other toddler. Sami has a broviac catheter that comes out of her chest with two lumens that attach to 5 IV lines. The IVs include nutrition fluids and fats, morphine for pain, and two med lines for administering her many (3 currently) antibiotics. Usually she doesn't pay them much attention, sometimes she likes to check up on the nurses to be sure that they are setting up the right stuff. She also like to help the nurses flush her own lines. It can be quite intimidating to pick her up or even chase her around the room as she plays as anyone that has visited can confirm. But she knows when to stopif she doesn't she gets a big tug in her chest. No really we have them pinned to her shirt so the shirt absorbs the shock.
Today Sami played with the music therapist and got a visit from her best friend and caregiver Liz. That freed my afternoon for doing laundry and e-mails for work. She took a late nap at 4pm which mommy starting waking her about 6:30up by 7pm...BUT my fear was right, she didn't go to bed till 11pm.
Tomorrow is the weekend and Daddy is coming (with treats for the nurses I'm sure).
Thanks for all the good wishes in the guest book.
Sami's blood counts.
Nov 16, 2001
ANC none done
WBC 0.1
HGB 8.9
PLT 25
Sandy
Thursday, November 15, 2001 at 09:55 PM (CST)
Wednesday and Thursday, November 14 & 15, 2001
Wednesday Sami carried a lower grade fever most of the day and by afternoon it hit 38.5 (about 102). This is expected and 2 additional IV antibiotics were added and blood cultures were taken to diagnose the infection. Between sleeping and the new antibiotics, her blood pressures dropped very low so she was monitored through the night. All was fine by morning and the cultures did not grow any bacteria so one of the 2 Ivs was discontinued.
Wednesday late afternoon, Aunt Arlene visited with Sami while mommy ate dinner and attended a group counseling for dealing with the holidays.
Thursday morning, Sami's occupational therapist brought finger paints and they had great fun. Early afternoon, Betty and Carol Salerno came to visitbring great homemade food and gifts for Sami and mommy. Sami especially liked the toy dogs that looked like Joey and Sassy. Also the horse like black beauty.
Sami is napping the afternoons about 4 hours and sleeping through the night about 10 hours.
Mucusitis is in full swing. I call it slime. It just hangs out of her mouth..Pain is managed with an automatic morphine PCA (round the clock pain meds) and TPN (the nutrition IVs) and she is still on round the clock anti-vomiting meds.
Thanks for all the good wishes in the guest book.
Sami's blood counts.
Nov 14, 2001
ANC none done
WBC 0
HGB 11.2
PLT 25
Nov 15, 2001
ANC none done
WBC 0
HGB 13.3
PLT 24
Sandy
Tuesday, November 13, 2001 at 10:45 PM (CST)
Day 5, after Stem Cell Transplant.
Dr. Grupp feels good about Sami's progress. He said she has handled everything better that he had expected. Way to go Sami !
Today Patty and Roger flew home. Grand Dad York and Granny Karen spent the day with us.
Vomiting has been managed today though she has a lot of mucus in her mouth. OH yes, and she is teething too!
Sami played hard this morning with water and music. She took a very long nap from 12 noon to 4 pm. But she was on lots of meds and in need of red blood cells, which she is getting right now.
She is still on round the clock anti-vomiting meds, PCA (round the clock pain meds) and TPN (the nutrition IVs)
Dont forget to sign the guest book and check out the new pictures Daddy posted Monday night.
Sami's blood counts.
Nov 12, 2001
ANC none done
WBC 0.1
HGB 8.0
PLT 57
Sandy
Monday, November 12, 2001 at 12:30 PM (CST)
Day 4, after Stem Cell Transplant.
She is still nursing and the doctors think that is great. She is still getting around the room, playing with her toys and loves to play with .wwaaaatteerrrr.
Today Patty and Mommy spent the afternoon Stampin'.
Still only vomiting about 2 times a day. It will probably get worse this weekend when she starts to feel better.
She is still on round the clock anti-vomiting meds. They started the PCA (round the clock pain meds) and TPN (the nutrition IVs). She received platelets today.
Dont forget to sign the guest book and check out the new pictures Daddy posted Monday night.
Sami's blood counts.
Nov 12, 2001
ANC none done
WBC 0.1
HGB 8.7
PLT 18
Sandy
Sunday, November 11, 2001 at 11:12 PM (CST)
Day 3, after Stem Cell Transplant.
The side effects are beginning to show. Sami has just about stopped eating food. She is still nursing and the doctors think that is great. Her energy level is great considering what she had gone through. She is still getting around the room. Testing Mommy, Daddy, Uncle Roger and Aunt Patty to see if they can keep up with the IV poll, and running around the chairs.
And Sami being the Princess of the 3rd floor, she loves to stand in the window looking out at the cars driving by, looking for some friends to come and visit. And she watches the people walking by and the birds flying around. She is the social girl.
The strength that Sami has is so evident. You can see it in her eyes, the determination to fight and show everyone how strong she is.
Today Patty and Mommy went home to take a break. This was Mommy's first time since Halloween to leave the hospital. Sami had Daddy and Uncle Roger playing with her and doing what ever the Princess wanted to do.
The new room is great, Sami has lots of room to play and run.
The vomiting is only about 2 times a day so far. We expect it to get worse soon. Sami is so amazing, she gets sick and the next minute she is back to being Sami. The nurses watch her in amazement. They can't believe she is still nursing.
Dont forget to sign the guest book and check out the new pictures Daddy is posting Monday night.
Sami's blood counts.
Nov 11, 2001
ANC 100
WBC 0.1
HGB 8.6
PLT 36
Saturday, November 10, 2001 at 09:56 PM (CST)
Day 2, second day after Stem Cell Transplant.
Still watching for side effects and managing the discomfort. And pray for a quick recovery. So far the side sffects have not been too bad. Sami has gotten sick 2 times today, and is up and running moments after that.
Today is Saturday. Uncle Roger and Aunt Patty are here
Sami had a great day playing with Daddy and Uncle Roger. The mask Uncle Roger had to wear was confusing to Sami. The first thing she wanted to do was rip it off of him. After a while she left alone.
All of the doctors and nurses can not believe how well she is doing. She is happy and playing so well. Everyone stops in to check on her. She is still running around playing. Today the fun thing was taking the pictures down of her friends that mommy hung at her level so she could see them. Well she decided she wanted to move them around a bit.
Aunt Patty and Uncle Roger got to experience their first Philly Cheese Steak. And Dan and Sandy got to go out for a tex mex dinner.
Dan and Sandy.
Sami's blood counts.
Nov 10, 2001
ANC none
WBC 0.1
HGB 9.1
PLT 51
Friday, November 09, 2001 at 09:19 PM (CST)
Day 1, the day after Stem Cell Transplant.
At this point, we just wait. Manage side effects. And pray for a quick recovery. The next couple of days are called the "honeymoon period." There will probably be more to report next week.
Today is Friday and I have already worked more than I had planned this week. I was scheduled for 3 vacations days and I have already worked 3 days. I wasn't going to do much today and take Saturday and Sunday offbut I can't seem to stay out of e-mails. I have already checked twice. We shall seeI hope to work in some fun with my sister on Sunday. We plan to go home and visit with some neighbors and do some stampin' and scrapbooking.
Sickness set in late today, but Sami is bounding back quick. The diarrhea still around and her bottom is sore. She is showing signs of mouth pain so we began morphine. It is hard to tell it is the fang teeth coming in or mucositis.
Sami is playing and getting in to trouble like any toddler. Her favorites are playing with water and in the bathroom.
We sure are missing Daddy. He will be picking Uncle Roger up from the airport tonight.
Be sure to sign in the guest book and give us a call. The phone number is 215-590-6331. Should be pretty easy to remember. The room number is 3432. The answering machine is hooked up...If the line is busy, I'm on the phone either by voice or e-mail. If the phone rings, the answering machine should pick up. Leave a message, but feel free to call back as well.
Sami's blood counts.
Nov 9, 2001 5am collection
ANC (none done today > than 500)
WBC 0.1
HGB 9.3
PLT 86
Sandy
Thursday, November 08, 2001 at 09:59 PM (CST)
Day 0. TRANSPLANT DAY. Mask restrictions in effect.
Sami had a great day. Just one IV, antibotics and round the clock nausea meds. She ran around the room playing with the ball, doggie, and more. She loves to wave to friends through the windows. And two naps...Actually napping through the Stem cells infusion with was at 4:30 P.M. and just 4 minutes later it was over. We took pictures. Dan will post them later in the week.
Sami got sick just once today. Diarrhea is still a big problem, but it is normal with all the antibotics that she is on.
She isn't eating though she has had some interest in food and she continues to nurse. IV nurition will come soon.
Aunt Patty was a great help as usual. She has taught Sami to say: cookie (as in monster) and water and a few sounds that are real cute. We love her being here. Uncle Roger arrives on Friday.
Sami still loves to play in water and in the bath with toys.
Please sign in the guest book and give us a call. The phone number is 215-590-6331
Sami's blood counts for Thursday.
ANC 528
WBC 0.6
HGB 9.4
PLT 120
Sandy
Thursday, November 08, 2001 at 12:06 AM (CST)
*********IMPORTANT**************
Not for medical reason but to make sure the Princess of 3 East had the best room they have moved to the largest room on the floor. They are in room 3432 and the new phone number is 215-590-6331
Day -1. The day of rest. No Chemo...The foley was removed. Stem cells come tomorrow.
Sami did not get sick today (just once yesterday). Diarrhea is still a big problem, but it is normal with all the antibotics that she is on.
She isn't eating or interested in food and her nursing has cut back quite a bit.
Her fun today included looking out the window to see the people, cars and birds (which she knows how to say in words and sign language). She loves the new toy from the Glickmans yesterday. She likes to play with her ball and most of all her pull toy dog. But today, Mommy brought in a play tub on legs that she filled with water. IT is great to pour the water all over the floor. No really she did very well. And it is only water, easy to clean.
Daddy came to visit tonight. That was fun. Without the foley (and a short time not connected to IVs...Sami ran around our new big room playing ball and pulling her doggie.
Aunt Patty was a great help as usual. We love her being here. Carol thanks for dinner once again. It was fabulous. And the cookies are gone (the nurses helped).
Sami is loving her bathes so much we have been taking one in the morning when she gets up and one at night before bed. Benadryl comes at 9 so that is bedtime since it puts her to sleep.
Please sign in the guest book and give us a call. The phone number is 215-590-6331
Sami's blood counts for Wednesday.
ANC 2259
WBC 2.3
HGB 9.9
PLT 150
Anyone wanting to donate platelets can come to CHOP. Check out the rules at www.apheresis.chop.edu. Those wanting to donate Red Blood can donate at the Red Cross. A donation card from CHOP for Sami is needed. Call your local Red Cross with questions. I was told the donations had to be at Philly location at 7th and Spring (not at CHOP). Others tell me they can do it at there local office. So call ahead.
Sandy
Tuesday, November 06, 2001 at 11:21 AM (EST)
*********IMPORTANT**************
Not for medical reason but to make sure the Princess of 3 East had the best room they have moved to the largest room on the floor. They are in room 3432 and the new phone number is 215-590-6331
Day -3 and Day -2. Sorry I was busy with work last night and didn't get a chance to write a summary of Sami's day. Today appears to be a duplicate of yesterday so I thought I would lump the updates together.
Tuesday is the last day of chemotherapy. Cytoxan which runs over 1 hour was infused today. Sami did not get sick yesterday, just diahrea which was much better last night and so far today. She is getting round the clock antinausea meds. She isn't eating or interested in food, but she is still nursing quite a bit and drink gatorade.
Monday, Catie and her mom Linda came to visit. Linda gave us McDonald dollars so we can have treats. THANKS, great idea. It was the first time Sami wanted to leave the room. She wanted to go play with Catie. But instead we threw kisses from the door.
Aunt Patty was a great help. She took the shuttle back to Ronald McDonald House at 8:30pm. The room is really nice, the manision is beautiful. She did her chores around the house and came this morning about 10am.
Now that the showers are over, I think Sami missing them. Late night before bed Sami took a bath and didn't want to get out. She slept great, went to bed about 9pm....and didn't get up (not even to nurse) till 7am.
Today Sami got a package from her good friend Paige and her family, Marty, Stacy, Cali and Cinder. They live in California. THANKS SO MUCH...it was prefect gift. Dan will post a picture of her playing with the toy later in the week. We are expecting Carol Roberts to visit and bring lunch very soon.
Please sign in the guest book and give us a call. The phone number is 215-590-6331
Sami's blood counts to be posted later...
ANC
WBC
HGB
PLT
Anyone wanting to donate platelets can come to CHOP. Check out the rules at www.apheresis.chop.edu. Those wanting to donate Red Blood can donate at the Red Cross. A donation card from CHOP for Sami is needed. Call your local Red Cross with questions. I was told the donations had to be at Philly location at 7th and Spring (not at CHOP). Others tell me they can do it at there local office. So call ahead.
Sandy
Sunday, November 04, 2001 at 10:00 PM (CST)
Day -4, so they call it here in Stem Cell Transplant. Day 0 is the day the Stem Cells are injected into Sami's brovaic...(tubies to the rest of us) No surgery !
Sunday was the forth day of six days of chemotherapy. Scheduled oral antibiotics, premeds for nausea and fluids. Thiatepa is done and so are the showers. Cytoxan which runs over 1 hour was infused today. This is were the nausea comes in. During the infusion she is free to move around, play, sleep, and eat or whatever she likes.
Today, Grand dad Jack and Aunt Diane visited in the morning and went home in the afternoon. THANKS for all you help! Joe (THANKS JOE, great to see you) drove Dan to the hospital so he could take my car home tonight. Aunt Patty and Arlene also arrived in the morning. Arlene enjoyed her short visit and even extended a bit because Sami had just received a antivomitting med that makes her silly. So as you can see there was a full house. Only two people are allowed in the room at a time so we alternated. Sami was on a lot of drugs to control vomitting. Patty experienced her first and Sami's only episode today. She is not eating now, expect for a taste of this or that and nursing. Sami did much better with the nurtion type drink with Gatorade instead of Apple Juice.
It was great to see Daddy, but he went home tonight so he can go to work in the morning. He plans to come Wednesday night for a visit. YAaaaa!
Tomorrow I meet with Apheresis prescreening to prepare for donating platets. Sami got red blood today.
Be sure to sign in the guest book and give us a call. The phone number is 215-590-6341. Should be pretty easy to remember. The room number is 3429. The answering machine is hooked up...If the line is busy, I'm on the phone either by voice or e-mail. If the phone rings, the answering machine should pick up. Leave a message, but feel free to call back as well.
Remember, we are in isolation with strict rules. NO balloons, stuffed animials or anything that can't be washed. I have to clean and disinfect everything every night. Sami can't eat any fresh vegetables or fruit. She can only eat packaged foods within 4 hours of opening. And the list goes on.
Sami's blood counts Nov 4, 2001 5am collection
ANC 1965
WBC 2.2
HGB 7.8
PLT 230
If you are tracking the blood counts you can start to see the pattern of the dropping. That is the chemo working. Red Blood Cells (Sami is A +) called packed blood cell is usually given when her HGB falls below 8. Platelets are usually transfused when the PLT count is below 20. If she is bleeding or brusing platelets could be given earlier.
I plan to donate Platelets this week for Sami. It is a long process, about 4 hours where the blood is taken from one arm, white cells are collected and the rest is put back in the other arm. This is the same process Sami did to collect the stem cells that will be given to her on Thursday "Stem Cell Transplant." Anyone wanting to donate platelets can come to CHOP. Check out the rules at www.apheresis.chop.edu. Those wanting to donate Red Blood can donate at the Red Cross. A donation card from CHOP for Sami is needed. Call your local Red Cross with questions. I was told the donations had to be at Philly location at 7th and Spring (not at CHOP). Others tell me they can do it at there local office. So call ahead.
Sandy
Saturday, November 03, 2001 at 11:12 PM (EST)
Day -5, so they call it here in Stem Cell Transplant. Day 0 is the day the Stem Cells are injected into Sami's brovaic...(tubies to the rest of us) No surgery !
Saturday was the third day of six days of chemotherapy. Scheduled oral antibiotics, premeds for nausea and fluids. Last day of Thiatepa chemo today which runs over 2 hours through Sami's tubies. After that, the next chemo, Cytoxan which runs over 1 hour. This we were the nausea comes in. During the infusion she is free to move around, play, sleep, and eat or whatever she likes. One of the many dangers of Thiatepa is that it is invisible poison that can burn the skin and it escapes the body from all pores and urine. You can't see it and the burns do not appear on the skin for a few days. There are lots of precautions to prevent as much of the burns to the skin as possible. But they are inedible, so in addition to the foley, Sami also wears minimal clothes, we don't use any soaps or lotions, and gets showers every four hours around the clock! Think about us at 9, 1 and 5 both am and pm.
Last night I slept in the conference room and Aunt Diane stayed with Sami. THEY DID GREAT ! I expected a call for help to put Sami back to sleep at 1 after her shower and 5...but the call never came. I slept (woke a few times) from 11pm to 7am. Wow....I haven't done that in years. Thanks Diane.
Today, Grand dad Jack and Aunt Diane played with Sami all day. Sami felt good. She is not eating as much and the vomiting meds are now set around the clock. She has vomitted twice so far, but both times was after a nurtion type drink. We are going to change it a bit next time to see it that helps.
Daddy will be here tomorrow. YAaaaa!
Be sure to sign in the guest book and give us a call. The phone number is 215-590-6341. Should be pretty easy to remember. The room number is 3429. The answering machine is hooked up...If the line is busy, I'm on the phone either by voice or e-mail. If the phone rings, the answering machine should pick up. Leave a message, but feel free to call back as well.
Remember, we are in isolation with strict rules. NO balloons, stuffed animials or anything that can't be washed. I have to clean and disinfect everything every night. Sami can't eat any fresh vegetables or fruit. She can only eat packaged foods within 4 hours of opening. And the list goes on.
Sami's blood counts Nov 3, 2001 5am collection
ANC 2855
WBC 3.3
HGB 8.9
PLT 299
If you are tracking the blood counts you can start to see the pattern of the dropping. That is the chemo working. Red Blood Cells (Sami is A +) called packed blood sometimes is usually when her HGB falls below 8. Platelets are usually transfused when the PLT count is below 20. If she is bleeding or brusing platelets could be given earlier.
I plan to donate Platelets this week for Sami. It is a long process, about 4 hours where the blood is taken from one arm, white cells are collected and the rest is put back in the other arm. This is the same process Sami did to collect the stem cells that will be given to her on Thursday "Stem Cell Transplant." Anyone wanting to donate platelets can come to CHOP. Check out the rules at www.apheresis.chop.edu. Those wanting to donate Red Blood can donate at the Red Cross. A donation card from CHOP for Sami is needed. Call your local Red Cross with questions. I was told the donations had to be at Philly location at 7th and Spring (not at CHOP). Others tell me they can do it at there local office. So call ahead.
Sandy
Friday, November 02, 2001 at 10:33 PM (EST)
Day -6, so they call it here in Stem Cell Transplant. Day 0 is the day the Stem Cells are injected into Sami's brovaic...(tubies to the rest of us) No surgery !
Today, Friday was the second day of six days of chemotherapy. Scheduled oral antibiotics, premeds for nausea and fluids. Thiatepa chemo again today runs over 2 hours through Sami's tubies. During the infusion she is free to move around, play, sleep, and eat or whatever she likes. One of the many dangers of Thiatepa is that it is invisible poison that can burn the skin and it escapes the body from all pores and urine. You can't see it and the burns do not appear on the skin for a few days. There are lots of precautions to prevent as much of the burns to the skin as possible. But they are inedible, so in addition to the foley, Sami also wears minimal clothes, we don't use any soaps or lotions, and gets showers every four hours around the clock! Think about us at 9, 1 and 5 both am and pm.
Today, Grand dad Jack and Aunt Diane visited. Sami enjoyed her company as well as visits from patients (Eric), many parents of patients, nurses and hospital staff. Sami is still the princess of 3 east even though she can't roam the halls.
The good news is that Sami is not feeling sick. The diarrhea is beginning and the eating was a bit light this morning and afternoon. But Aunt Diane feed her a dinner meal that lasted an hour. She is not drinking juice and water as much today, but nursing anytime she needs comforting (sleep and boredom as well like usual).
We sure are missing Daddy. He is at a trade show in New York City. Dan plans to come to the hospital on Sunday.
Be sure to sign in the guest book and give us a call. The phone number is 215-590-6341. Should be pretty easy to remember. The room number is 3429. The answering machine is hooked up...If the line is busy, I'm on the phone either by voice or e-mail. If the phone rings, the answering machine should pick up. Leave a message, but feel free to call back as well.
Sami's blood counts seemed more inline today. Nov 2, 2001 5am collection
ANC 3772
WBC 4.1
HGB 10.0
PLT 396
Sandy
Thursday, November 1, 2001 at 11:30 PM (EST)
Day -7, so they call it here in Stem Cell Transplant. Day 0 is the day the Stem Cells are injected into Sami's brovaic...(tubies to the rest of us) No surgery !
Today, Thursday was the first day of six days of chemotherapy. The day began with two oral antibiotics, premeds for nausea and fuilds. Then a happy medicine so Sami won't be bothered by the foley catheter put in. See the chemo today, Thiatepa runs over 2 hours through Sami's tubies. During the infusion she is free to move around, play, sleep, and eat or whatever she likes. One of the many dangers of Thiatepa is that it is invisible poison that can burn the skin and it escapes the body from all pores and urine. You can't see it and the burns do not appear on the skin for a few days. There are lots of precautions to prevent as much of the burns to the skin as possible. So in addition to the foley, Sami also wears minimal clothes, and gets showers every four hours around the clock.
The good news is that Sami is not sick, not yet that is. Still eating table food, snacks including her favorite veggie sticks. But now snacks must be thrown out after they have been open for four hours. Dan has found individual bags to help with this new rule.
Today, our neighbor and friend NAZ came to visit. Sami enjoyed her company as well as visits from Zachary and his mom Dana and dad Stuart, Mickey and his mom Christine and many nurses and hospital staff friends including: Jackie, Raymond, Sam, Debbie, Amy, Shirey, Carrie, Ann, Susan and Marie.
Sami continues to roam the room (not the halls as she is in isolation) as far as her tubies will let her (I have to follow her around with the pole). She plays with her toys and just acts like a normal kid. Oh like all 19 month olds are hooked up an IV pole with chemo and foley catheter.
Be sure to sign in the guest book and give us a call. The phone number is 215-590-6341. Should be pretty easy to remember. The room number is 3429. The answering machine is hooked up...If the line is busy, I'm on the phone either by voice or e-mail. If the phone rings, the answering machine should pick up. Leave a message, but feel free to call back as well.
Sami's blood counts seemed inaccurate. We will check tomorrow's.
Sandy
Wednesday, October 31, 2001 at 11:30 PM (EST)
Day -8, so they call it here in Stem Cell Transplant. Day 0 is the day the Stem Cells are injected into Sami's brovaic...(tubies to the rest of us) No surgery !
Today was simple, check in, tests and hydration. Tomorrow starts a week of chemotherapy. BUT it is Halloween so they gave her a break and let her go tubie free till 6pm.
Mom made the room home, by turning the crib, setting up the IV pole so Sami could get a round the room, hanging some pictures and putting everything in its place.
Sami was asleep by 9:30 with the aid of benadyl. YES.
The answering machine is hooked up...I'll record a new message tomorrow. The phone number is 215-590-6341. Should be pretty easy to remember. The room number is 3429.
Check back often (hopefully daily) for updates. I'll do my best, time permitting.
Follow along the path with Sami as we record and chart her blood counts. I'll give further details about what all the numbers mean as they begin to change (fall and rise).
Sami's blood counts
Oct 31, 2001
ANC 4007
WBC 5.3
HGB 10.1
PLT 406
Monday, October 29, 2001 at 10:46 PM (CST)
**************CHECK DOWN FOR UP-DATE 10/31************
I am Still Home !!!!!!!!!!
Boy have I been keeping My Mommy and My Daddy busy. And they have been keeping me busy.
It is so much fun to see them trying to keep up. I just love to play my music and sing and dance all night. And that is the best time for snacks. I like to have a bite of everything.
I got to go out and play with Sassy. Sassy is my friend Bettys dog. Sassy is so much fun to play with, she is so nice.
I got to go visit my friend Juliana and play with her. She is a neuroblastoma survivor.
My Daddy took me out to Zany Brainy and Toys R Us. I loved running all over and trying out all of their toys.
My Grand dad Gray brought up my aunt and uncle (Dottie and Bob) with my cousins from Baltimore. It was so much fun with all the attention. We took them to a haunted house and hayride. It was nice out but My Daddy thought I might get cold and he put his huge warm vest on me. Boy was that warm. Check out the pictureI look like a big pumpkin.
On Sunday My Mommy and Daddy took me to the YMCA. The local Kiwanis held a pancake benefit for, guess who..no not Scooby Dooo, ME. I got lots of attention and I was the lady bug. It was so nice to see so many people come out to see me and talk to me. I do like to say HI and wave to all my new friends.
Monday My Mommy took me to see some more friends. They live in north Jersey. I got to play with Alexander, Andrew, Erin and Megan. I had lots of fun. I rocked Baby Megan and she like me tooo, even smiled. Then My Mommy took me to surprise My Daddy at his work. I got to meet all the nice people My Daddy works with. It was real nice to meet them. My Daddy has told me a lot about them.
Well I guess I will let Dad say a few word. Dont forget to check out the pictures. We have NEW ones up for everyone to see. And dont forget to sign the guest book, I like it when My Mommy and My Daddy read them to me.
Thank you to everyone..XOXOXO
Dad here..Well this is the week. The days seem to be flying by. Sami and Sandy will check in at CHOP on Wednesday for the next and tough step, Stem Cell Transplant. They will be in for the next 4 to 6 weeks. Sandy is going to try and update the site daily so everyone will know what is going on and how Sami is doing. We would like to thank Janice Ditkowsky (one of our many great neighbors) and the Local Kiwanis Club for their support and work for Sami. So dont forget your positive thoughts and prayers, this is going to be a tough one for Sami. She is strong and ready to fight. Thank you again to everyone.
Dan, Sandy, and SAMANTHA
******Wednesday Oct 31**************
Sami heads down to CHOP. She got there in time for the Halloween Parade. The Chemo starts Thursday.
For those who want to call Sandy is setting up our phone so if she can not get to the phone our answering machine will pick up so please feel free to call her at 215-590-6341, and they are in room 29 on the third floor. Talk to you soon with more Sami up-dates.
Saturday, October 20, 2001 at 07:01 AM (CDT)
I'M Still HOME !!!
I have been so busy this past week I dont even know if I can tell you all that I did. I know I have been keeping My Mommy and My Daddy very busy. I like to stay up late and see what's going on. I hang out with My Mommy and My Daddy to 11 or if I can squeeze it to midnight before I go to sleep.
I heard My Mommy and My Daddy talking about taking me to some special place this weekend. I can't wait to see what it is. And I am sure they will take lots of pictures so everyone can see how much fun I am having. Well I better let Dad say a few words here I have to run. Bye
We will have more details soon, on Oct 28th the local Kawanis is holding a benefit pancake breakfast for Sami. It is at the Somerville YMCA from 8 AM to 1 PM . We will try and make it for some of the time. Hope to see you there.
Check out the NEW pics of Sami !!!!!
Our love to everyone for there support and prayers.
Wednesday, October 10, 2001 at 11:10 PM (CDT)
We are home !
It was sad as alot of us were able to go home to our families today, yet some of our extended CHOP families needed to stay.
Best wishes to you all.
Sami will miss you.
We will be back at CHOP on Oct 31st for transplant. More details to follow at a later date.
Sandy, Dan and Samantha
908-704-8057
Tuesday, October 09, 2001 at 11:30 PM (EST)
WE'RE STILL HERE !
UPDATE Tuesday Oct 8 we got an ANC of 60 today. Hope to go home on Wednesday.
Yes, we came in last Tuesday with Fever. Sami has been fine ever since. But protocol is....after fever you stay in patient until the ANC blood counts are on the rise. That can take 10-20 days from the last chemo. So everyday we wait impatiently for the lab results.
Give us a call. 215-590-6310 Though I must worn you that we are not in the room very much. Sami likes to walk the halls and ride the elevators.
So come and play with Sami and help me. Visitors are very well.
Love, Sandy, Dan and Samantha
Wednesday, October 03, 2001 at 10:26 PM (CDT)
FEVER....
BUT you can't stop Sami from running the halls of CHOP.
Well, it was bound to happen sometime. Sami was admitted on Tuesday evening to CHOP with Fever. Tests are showing negative so far. Could be just a chemo fever. In the meantime we will be in patient with IV antibotics till Sami's blood counts return. Hopefully be the weekend.
You can try to call us, but we are not in the room much. 215-590-6310
We are planning the next steps and we will post the schedule soon. We are looking for volunteers to help during this month stay in isolation.
Thanks, Sandy, Dan and Samantha
Saturday, September 29, 2001 at 09:29 PM (EST)
I'M HOME !
Yea, that was great...just 2 nights at the hospital. 2 days of chemotherapy, but they kept me connected to fluids the whole time. Mommy had a hard time keeping up with me as I pushed my baby in her stroller through the halls. I did learn a new word, "stop". Mommy would say stop if I was going to fast and she didn't to catch up. Beleive me, I knew when I went too far. The IVs would pull at my chest. So I listened. Mommy said I was a good girl.
Friday my friends at CHOP ran lots of tests to get ready for my next step. Stem cell rescue...or what some people call bone marrow transplant. We meet with the doctors on Tuesday to discuss this process. In the meantime, I got a cat scan, heart echo, EKG and hearing tests. Next week I get a few more. All just follow up to baseline tests during diagnose to prepare for the transplant. More about that next week.
Sami is feeling okay right now. Her energy level is still up. She is playing and having fun. Her appetite has dropped today and she has had diaheria and a little vomitting. Her blood counts will continue to drop before they rebound in a few weeks. She will follow up at CHOP twice a week for blood tests and transfusions as needed.
Thanks again to everyone that supported "Songs for Sami". It was a great success. Those still wanting to donate can send a check payable to Samantha Rose Gray to Arlene Neuman 25 Frederick Street, Carteret, NJ 07008.
****We have had alot of request for the t-shirt that was made for Sami's event.If you want one please let us know by no later than Oct.10th. E-mail us with your size and address, then send a chack for $10.00 we will send the shirt when they come in. Send the check to
Dan & Sandy & Samantha Gray
56 Huntley Way
Bridgewater, NJ 08807
Thanks Scott and Paulette for a great job on the shirts*****
Tuesday, September 25, 2001 at 11:14 PM (EST)
Heading to the hospital on Wednesday for cycle 5 of chemotherapy.
It will be a busy day because Sami needs to arrive at 9am to get an injection at 9:30 to prepare for the radio active test...MIBG on Thursday at 10am. Then blood tests and start chemo. When a room is ready she will be admitted.
Thursday is the MIBG scan at 10 am and chemo after that.
Friday is a cat scan and if all goes well...home!
Dan will be posting new pictures of the benefit from Sunday, so check them out.
1:00 pm Wednesday, I just spoke with Sandy and she had been waiting for everythung to happen today. They were just calling them in to see the doctor and then start Sami's Chemo. Hope to know what room they are in soon. Sami has been running all over making new friends and doing what she does best putting smiles on peoples faces.
I will update the pictures tonight, more from the event.
New Photos are up so check out and see how much fun Sami had with all of her friends and supporters. I think the pictures tell the story.
Don't forget to sign the guest book and even just say hi, we love to read them to Sami.
Thursday 9-27 Sami is doing great. She had her scan and is out of it still due to the drugs. She has been going all over the hospital say HI to all of her friends. Things are still looking good for her to come home friday.
The Doctors said that there is "PROGRESS". They went through the scans today and feels Sami has made good progress. They only found a few live cells around her liver. The rest is ALL DEAD. Good news
Sunday, September 23, 2001 at 10:00PM (EST)
Our Thanks go out to all who made this event what it was. Sami had a blast and we just could not get over her energy.
The generosity is overwhelming with everyone involved in Songs For Sami.
We will try and update the site with pictures every two to three days. And since it is late and Sami was the last to leave and when we got home was still running around till 10PM we will update this a little later on Monday.
Again THANK YOU!
Sami, Sandy & Dan
Sunday, September 23, 2001 at 10:45 AM (EST)
UPDATE
Sami is napping.... This is earlier than expected. She will probably wake up about noon...eat lunch and arrive about 1pm. We expect that she will be at the benefit all day.
Final preparations are being made for "Songs for Sami" benefit concert.
Please join Samantha on Sunday, September 23, 2001 from 1pm to 6pm at the Flemington Elks Club. 165 State Highway 31 in Flemington, New Jersey.
There will be Live Music Featuring: Only Footprints, Gregg Cagno, Angus, Jason Lockart & Silas Creek Parkway.
Many gifts have been donated for door prizes and Auction, including Airline tickets, Hotel accommodations, Dinners at a variety of restaurants, Spa Packages, Gift Baskets, Signed Sports Memorabilia and more. See list below.
Child under 16 are free. There will be organized activities to keep them entertained.
Food and Drink Cash Bar available.
Admission is: $10 per adult.
Directions: FROM FLEMINGTON CIRCLE
Take Route 31 North. The Elks is about 2 miles on the left. If you get to the hospital and BJs you have gone too far.
From North Jersey, take 287 South to exit 17 (Sommerville) Route 202/206 South Somerville / Flemington. Continue approximately 10 miles to the Flemington Circle. Follow directions above.
From South Jersey from the 195/95 Highways, take Route 31 North, thru Pennington to Flemington Circle. Follow directions above.
From Pennsylvania take 78 East to 31 South. From this direction the Elks Club will be on the right. If you get to the Flemington Circle you have gone too far.
From New York take 78 West take 287 South to exit 17 (Somerville) Route 202/206 South Somerville / Flemington. Continue approximately 10 miles to the Flemington Circle. Follow directions above.
Auction Items:
$20.00 gift certificate to Italian Eatery
$25 Gift Certificate & 2 $10 to Barnes and Noble
$25 gift certificate for Friday's
$25.00 Gift Certificate to Linens and Things
$30.00 Gift Certificate Ann Taylor
$50 certificate off package of Memory Lane
$50 gift certificate to The Clinton House
10 Photo's 10X13, The Picture People
2 / 200 minute calling cards
2 barbie dolls, collector items
2 Baskets/gourmet coffee & teas $20.00 each
2 Continental Airline tickets
2 deli party platters / $35.00 each, Flemington/Clinton/Greenwich Shoprite
2 Delta Airline Tickets
2 Leica Cameras @ $700 each
2 Passes to Camelback Water Park
2 photo albums
2 Picture frames 1 wood, 1 crystal
2 Seafood Buffet dinners for 2, $95.00 each
2 Spaulding Junior Basketball
25 gift certificate to Wegmans
25 inch Atlantic Luggage Tote Sack
3 month family membership to Healthquest
3 Shampoos
4 Car Washes at Shammy Shine
4 Jets tickets 12/30/01 game
4 tickets each for: Yankees, Mets, Phillies
A&P 2 $10.00 Gift certificates
All Golf Miniature golf for 6
Ann Taylor Gift Certificate $30.00
Applebees Dinner for 2
Assorted Hardware
autographed Gallo Blue Chip Horse Picture 9/8/2001
Autographed NY Yankees Baseball cap: Don Larsen
Avon Gift Baskets
Basket of Baby products
Basket of hair care products facial, manicure, pedicure, haircut
Basket of hair products
Beauty Care Basket
Birthday Party for 10 at Tumbletime
Blade Scooter
Build a Bear Teddy Bear
Candlelight Aromatic Candles
Coach Watch
Collector Barbie & Barbie Toys
Conair hair style set blow dryer/curling iron
Crabtree & Evelyn Fresia Hat Box, soap, lotion
Crabtree & Evelyn Mens Travel Kit
Crabtree & Evelyn, His & Hers gift baskets
Creative Memories Scrapbook Kit
Crystal Candy Dish & Bud Vase
Dinner for 2 at Kirstens Italian Grill
Dinner for 2 at Pegasus Meadowlands
Dinner for 2 at Spiotta's
Dinner for 2 at Trackside Meadowlands Racetrack with parking
Dinner for 2: Yankee Doodle, 1 night stay with breakfast
Dinner for Two - Mikado's Japanese Steakhouse
Dinner for two at Coco Loco
Dollhouse Furnature
Floor lamp $ Stiefel table lamp
Free Consultation & $50 off package - AMEX financial advisors
Gift Certificate/Pennington Market
Gift Certificate: Day Spa
Giggles $10.00 Gift Certificate
Goko Camera
Gourmet Dinner for Two Atlantic City
Hand Blown, Hand Painted Venetian Glass pendant edged in 18 ct gold
Handmade baby quilt
Handmade Bear
Hilton Garden Inn, One night stay for 2
Horseback riding - Circle A Ranch One lesson for 2 people
Hunterdon Hills Playhouse 2 tickets for dinner theater Music of America - 1/12/02 performance
Hyatt Princetone Brunch for 2
Inn at the Hawke $50 certificate
J&J Gift basket Lenox Vase Gift Certificate/Friends Salon
Jafra Corp Gift Basket
Land of Make Believe - 4 passes 2002 season
Learning Express Gift Basket
Lenox Candle Holder
Lighting fixtures
Little Tikes Whirly Rocket ride
Longaberger Basket
Longaberger Basket Mini Purse
Lots of AT&T stuff
Marriott One night voucher
Mary Kay Basket
Mary Kay Cosmetics basket
Medieval Times Dinner for two
Memory Lane party package
Merle Norman Basket
Mikasa Vase
Mugs $15.00 gift certificate
Pampered Chef bag of goodies
Pampered Chef Gift basket
Pedicure at Legends
Pro Cut Knives
Quakerbridge Mall Basket
Quakerbridge Mall items; 2 towels @20, 2 lunchboxes @8, 2 keyrings @ 8, 4 pouporri @2, 2 portfolio's @20, 2 backpacks @10, 2 duffle bags @15
Radio Flyer Wagon
Rimowa Briefcase
Round of golf for 2 expires 12/15/01 at Stanton Ridge
Ruby Tuesdays Dinner for 2
Sammy Sousa Signed Baseball
Sensa Pen
Signed Mark Messiar Hockey Puck
2 Rangers tee shirts
Signed NFL alumni football 1968 Jets & Team photo
Signed Johnny Unites mini football
Tandem Sky Diving & Video
Tea for Two at Canterbury Corner
Tickets for 2 / 2002 season Sesame Place
Weekend in the Pocono's Chalet with 2 bdrms, loft, gas fire, kitchen, etc. Close to Crossings Jack Frost, Big Boulder & Camelback
Williams Sonoma Book Sets
Wyndham one night stay with breakfast
Yankee Candle
Wednesday, September 12, 2001 at 09:40 PM (CDT)
We came home on Monday night !
Unbelieveable, surgery was just Thursday...just 4 days earlier.
Preliminary Pathology results look good. Sami will be able to attend the benefit concert on Sunday, September 23, 2001. Anyone needing tickets can contact Sandy at sandyg4684@aol.com.
Sami will be admitted for Cycle 5 of chemotherapy about September 25 or 26th. At that time there will also be further cat scan and nuclear scan testing.
We will continue to change pictures over the coming days as we have more pics from the past two weeks that haven't had a chance to be posted.
Sami continues to do extremely well, blowing her parents, friends and family away with her strength.
Keep the messages coming.
Love, Sandy, Dan and Samantha
Wednesday, September 12, 2001 at 09:40 PM (CDT)
Thursday, September 06, 2001 at 12:05 PM (EST)
SURGERY...Thursday, September 6, 2001
We arrived at CHOP at 7:00am and Sami went with the nurse to the operating room at 8:30am. The report at 9:15am was she was asleep and IVs were put in and prep for the operation was continuing. By 10:10am the operation began. The report at 11:30am was that the surgery was going to take a very long time because the tumor is very sticky (a complication we were warned about - that we feared)...
1:30 nothing new...I have been in the Resource Center working for about 2 hours. Dan, his dad and his sister are going to get lunch. I'll continue to work and wait here till they return.
Good Fresh Chinese Food is on the menu.
3:00pm Surgeon calls Dr. Eslin and Dr. Grupp to review resection progress.
3:30pm Surgeon, Dr Von Allmen tells us he has safely removed what he could of the tumer. Samantha is in recovery and Dan went in to be with her.
6:00 pm Sami is resting in her room for the next few days. She will be at CHOP until she recovers. The doctors feel she will out soon since she is so much healthier than she was in May. The parts of the tumor were sent out to pathology to be tested to see if the tumor has been killed. We hope to get the first results on Monday.
10pm Sami slept most of the evening.
Friday, September 7, 2001
2am Sami woke and I was able to stroke her head and snuggle her to sleep almost immediately.
5:00am Sami had a restful night. She rolled to her side on her own and I placed a blanket to keep her off her back for awhile.
6:30 Doctor says she needs some help to get rid of the fluid she received during surgery so they have given Sami a medicine to help her urinate. If this works they will remove the catheter. I also hope that they will remove the nose tube out this afternoon.
Take a look at the Photo section, we got 2 pictures of Sami resting after her operation. And please don't forget to sign the guest book, we love to read the notes to Sami.
12:45 I was on the Phone talking to Sandy and Sami was starting to stur. Sami has been resting good so far. Mommy had to go and do some cuddeling with the Princess. Will post more later.
3:45 PM Sami is up and watching Barney. The doctors have taken the IV lins out and we are waiting for them to run some test to hopefully get the NG tub out of her nose and the foley off. Mommy has her all dressed in a beautiful dress. The nurses and doctors love to see her all dressed up. Looks like she is read to hit the town.
Visitors included Grand dad Jack, Aunt Diane and nurse friend Marie.
Saturday, September 8
Sami had a very restful night giving Mommy 5 hours of sleep (more than at home). She woke up and decided that she didn't need the NG tube any more so she took it out herself. Doctors were not happy because they planned to keep it in another day. But they said as long as she didn't vomit they would leave it out. After rounds the orders came down that the foley could come out. Now she is pretty tube free except of coarse her central line with fluids that she always has.
As the day progressed, Sami began to talk, play and laugh. Pain Meds have been reduced and other than getting in and out of bed she doesn't seem to be in too much pain.
Visitors included Grand dad Jack, Aunt Diane, god mother Arlene and nurse friend Holly.
Sunday, September 9, 2001
Sami was restless and woke very often late night. I think it is her bowels starting to work...gas pains! Today the auto pain meds were stopped and she was disconnected from all monitors and IVs. She was allowed to drink water and nurse. Her blood sugar is a bit low, but other than that she is getting closer to being discharged in the next day or two (as long as there aren't any fevers or complications ie blood sugar).
10pm Sami is sleeping soundly. She continued to get stronger today walking around the hospital. Hope to come home tomorrow.
Guests today included: Joe, Robyn and Zoe, Granddad Bud and Granny Karen.
Thank you for all your prayers.
Monday, September 03, 2001 at 11:16 PM (EST)
The benefit, "Songs for Sami", will be held on Sunday, September 23rd from 1:00pm to 6:00pm at the Flemington Elks Club on Route 31 in Flemington, NJ. We recommend getting your tickets in advance. Those interested in purchasing tickets, please send a self addressed stamped envelope with $10 per adult to Arlene Neuman, 25 Frederick Street, Carteret, NJ 07008
Now a note from Sami
HI Guys, well this week, like always I had lots of fun with My Mommy and My Daddy playing and going for walks and see everyone in the neighborhood.
Thursday My Mommy took me to Sesame Street with my friends David and Gaby. We got to see the parade and all the water rides, and best of all I got to see my favorite Cookie Monster. He is the best. My Mommy even got me this neat-o balloon that looked like cookie.
My cousin Angela and her boy friend came from College to visit me on Saturday. I showed her all my toys, pictures and I cleaned her back my diaper wipes. I don't know why, but My Mommy and My Daddy thought that was so funny so I kept doing it. We went to dinner at this new Japanese Steak house. I really liked the noodles that they made for me right at my table. It was a fun restaurant.
Sunday, My Mommy and My Daddy took me for a picnic with my friends Alexander and Andrew. We got to play on the swings and the slide and run all over the park. It was so much fun.
Monday, My Mommy and My Daddy took me to our friends the Salernos who have a horse farm. They have dogs and cats too. I played with the 3 doggies. Especially Sassy, she is so nice and friendly. I also got to see the race horses real close in their stalls. They were real big. I held onto My Daddy real tight when one of them sniffed me.
My Mommy and My Daddy told you I will have the surgery this Thursday. I am going to let them take over the updates so I can concentrate on getting better fast. They said that they will try and put a note up on Friday to let all my friends know how I was doing. I sure hope everyone leaves me a note so My Mommy and My Daddy can read them to me. I love hearing from all my friends.
Talk you soon, Love Sami
Wednesday, August 29, 2001 at 09:01 PM (CDT)
Hi Guys,
This week was lots of fun once again. The weather has been great. I got to go outside a lot and play with my friends in the neighborhood. I went on some nice walks with My Mommy and My Daddy. Usually after dinner, My Daddy takes me outside for a while so I can see everyone and take a nice walk.
Well on Thursday, we had lots of action here at our house. My Grand Dad, Aunt Dottie, Uncle Bob and my 4 cousins (Steven, David, Jordan and David), all boys came to visit from Baltimore. Wow what a blast. We went for walks, played with my toys and ate a lot. I was the center of attention and you all know I like that. All those guys and ME. They all wanted to hold me and of course I liked that too.
One night we even went out to dinner. My Daddy called and made special arrangements with the restaurant to give us a special room all to ourselves, away from everyone else in the restaurant. I could not believe how much my cousins ate. I think they were glad to see us go, I think they almost ran out of food. Then Friday night My Daddy cooked out on the grill for everyone. I ate a little of this and a little of that.
Saturday we had fun with the boys again. And guess who showed up? No not Santa Clause it is too early for him, it was my best friend Brynne and her Mommy, Karen. I showed her some of my new toys and we played. We girls had a wonderful time. Then they had to go. And my cousins left too. I sure missed them all. But My Mommy and Daddy had played with me and that is always fun.
Sunday my buddy Liz came over and boy she had this giant butterfly. It is so neat and colorful, and my own Hugh stuffer doggie. He is bigger than I am. And I got to play with Liz for a while blowing bubbles and stuff.
Tuesday, My Daddy did not go to work. He took me down to Philly to see my friends at CHOP. I got to say Hi to a lot of nice people. And the nurses at the day hospital gave me some more blood. I felt so good, full of energy and ready to run some more. While we were at CHOP my Mommy and My Daddy took me to meet Dr. Von Alman. He is the nice doctor that operated on me the first time I was at CHOP. He is very nice, not scary at all. I think Ill let My Mommy and My Daddy tell you more about what went on.
Hi everyone. Im glad you are enjoying Samis updates. As you know, we met with Dr. Von Alman, Samanthas surgeon. We were there to talk about her operation to remove the tumor. He has scheduled Thursday, September 6th at 7:30 a.m.for surgery. Sami is going to be his only patient all day. He said that he had a number of doctors and radiologists look at the cat scans and all agree that this is the right time to operate. The tumor has shrunk, but hasn't pulled away from the vital vessels as much as they would have liked it to. They won't know to what extent until the operation. The tumor had crushed the vena cava artery and kidneys. Now they all seem to be functioning well. Dr. Von Alman said that he just does not know how long the operation will take. Could be 6, 10 or even 12 hours. He is prepared to spend as much time as needed. He said it is tough to tell how strongly attached the tumor is to the artery and the kidney. He hopes that when he gets in and starts to chip at it that it will dislodge itself from both the artery and the kidney. His fears is that they may have to take the kidney and leave some or the tumor around the vessels. He said that many kids are walking around with tumor in them and they are OK. But we hope it will dislodge. In an ideal situation, Sami will be in recovery for about 2 weeks in the hospital and then home to get strong again and prepare for the 5th cycle of chemotherapy.
We will try to update the site on Friday since we know everyone will be looking for an update of the surgery.
Tuesday, August 21, 2001 at 11:39 PM (EST)
Guys.....GUYS!
Now that I have you attention, I thought I would let all my friends know what was happened last week in the Life of Sami Graythats me.
Well the week started off with lots of fun and playing. Monday night My Daddy tried to give me a bottle. I was not sure about this so I thought I would see how many times he would chase it after I threw it. Well he gave up after a while and I am glad I was just starting to get tired of throwing it.
Tuesday night he started with the bottle again and I thought, ok I'll play along and I drank about 4 oz. But this time, My Daddy put on my favorite Barney tape and let me lay on the floor with my favorite pillow. It was so funny they were so excited that I did drink from the bottle, like I never had done that before. And then the next night they tried to fool me by giving me two bottles, but I drank it all because I was thirsty from playing outside. They say it was 7 oz. all together.
Well on Friday they got me up real early and took me down to Philly. I thought I was going to see all my friends at CHOP. We had some nice people take some pictures of my belly. I wanted to watch and make sure they did it right, but I went to sleep and missed it all. I hope I was smiling, My Mommy and Daddy like it when I smile real big for the camera. After I woke up some of my friends gave me some blood and I was already to run around again. My Daddy had asked the nurse where his and Mommys blood was, I think they are haveing a tough time keeping up with me.
The weather has been so nice that we had been playing outside with all my friends on the Huntley Way block. And guess what I gotmy best friend Annalee's mommy, Marie stopped over and gave me a tent. I was not sure of it at first, but then I saw My Mommy playing in it and my pet doggie wasn't scaredI thought I would give it a try and love it.
Saturday Aunt Arlene stopped by and gave me a really neat-o gift.a shopping cart. My Daddy had to put it together for me. Now I am pushing it all over the house, and helping My Mommy with the groceries. My Mommy and Daddy get so excited when I eat a lot of stuffs at dinner, I eat more just to see their reactions. After dinner My Mommy and My Daddy took me out to get some ice cream, well I had sherbet. That was fun, it was a neat old store.
Sunday our neighbors Naz, Soem, Ang, and Kabir can over to play for a while and had lunch. I got tired after a lot of playing and had to take a nap. When I work up My Mommy and Daddy took me down to Philly (CHOP). We spent a few hours there, it was a neat room with a glass door so I could see all the nurses. They were a lot of fun to play with. I was at the hospital because I had to get a shot. Something about a kid I played with on Friday had the Chicken Poxbut we found out that he didn't after all on Monday. That is why My Mommy and My Daddy missed updating the website on Sunday.
Well I have to run. We will try to update you all next Sunday. Dont forget to sign the book. And if you have any questions on that really neat concert just ask My Mommy or My Daddy.
Hugs and Kisses to everyone, Sami
Tuesday, August 14, 2001 at 10:34 PM (CDT)
Hi Guys,
Guess what?
I am still home.
Sorry for the delay but I have been keeping My Mommy and My Daddy running All day and night. It is so funny to watch them chase after me. They cant keep up with me.
I have been having so much fun walking around the house all by myself. Once in a while I like to hold My Mommys hand and show her all the neat places that I like to walk around.
And they seem so surprised when I talk to them. You should see their faces, I am starting conversations with them. Telling them what I want to eat and where I want to go. I got My Daddy good one morning. It was early about 4:30 in the morning and I want to see what was going on outside, see if any of my friends were out playing. So I pointed to my hat and to the front door. Dad got the idea and went to the front door. Then I had to tell him to unlock the door, open it with the handle, and then take me out. You know he did it, but I guess it was too early for my friends to be out playing.
I had lots of friends stop by to see me. My girl friend Annalee stopped by on Tuesday. We got some good playing in. And my pal Mary Lou was over my house to check up and see what I was up to. I think My Mommy was telling her how much I have been talking, eating and walking.
On Wednesday My Mommy took me down to CHOP for an exam. I got to see all my friends down there. And on my way home My Mommy stopped off at a park and we were on the swing set and guess whatMy Daddy showed up. We had lots of fun on the swings.
Thursday my bud Liz came over and we played all night, I let My Mommy get some framing done.
When My Daddy came home from work on Friday we all went out to this kool store. It had all kinds of fish swimming in these neat tanks. Guess what My Mommy did, yeah she got me a gold fish. We named him Sunshine. My Mommy even lets me feed him.
And on Saturday Aunt Arlene dropped in for a nice visit. It was great to see her. We even went out to My Mommy's favorite Chinese restaurant. It is a real kool place, they have a big tank with great big fish in it. I wanted to pet the fish but My Mommy and Aunt Arlene said it would be too messy.
Sunday My Mommy and My Daddy took me out to visit Nicole. She is like my Big sister. We got to play, and she made me a neat-o pillow. We got to play with her 2 doggies. That was so neat playing with the doggies. And they had 6 neat-o fish, I was telling them about Sunshine and how I like my new pet.
My Daddy took lots of pictures (well is that a surprise to you) so everyone can see how good I am doing. So dont forget to check out the new pictures.
If you need information on the really neat benefit concert called Songs for Sami thats Me. Just e-mail My Mommy at the e-mail address below or my Daddy at dan@hpmarketingcorp.com
Talk to you next week.
Saturday, August 04, 2001 at 10:47 PM (CDT)
I'm home !
YES, just 3 short days at CHOP for Cycle 4 of chemotherapy. That is a record for me. Mom and Dad were so surprised they didn't even plan how to get me home on Friday afternoon. We had to wait till Dad could come get us at 8pm. But that is fine....I had a nice day playing with all my friends. Especially my best friend Katie who also has neuroblastoma. She was recovering from her surgery from last week.
Saturday was great being home. Lots of friends...Grand dad Gray, Liz, Naz, Anjeli, Natalie, Aunt Arlene and her cousin Lori ...came to visit.
Grand dad brought some funny things that mom ate and ate. Her hands were dirty and she couldn't pick me up. I heard someone say they were Maryland Crabs !
It is really great to be home. I am walking all over the house and up the stairs to catch mommy when she tries to hide. I'm learning all new words and making up my own language...it is really fun. (editing note: mom was working and dad was supervising the climb)
I hope to be home for a couple of weeks with just a few visits to CHOP for check ups. The doctors hope to have some news in two weeks of when the surgery will be.
Thanks for all your well wishes, they are great. Keep them coming. Everyone loves reading them... I have heard stories about people just coming to see who wrote something new today. Don't forget you can sign in more than once.
Love Sami
Friday, July 27, 2001 at 10:37 PM (CDT)
Hi Everyone,
This is Sami's Aunt Patty. We had a wonderful week. Sami and I had fun playing and getting to know one another again.
We went for walks every morning. Sami introduced to me to all of her friends in the neighborhood.
On Wednesday she introduced me to her doctors and nurses at the hospital. They are all taking very good care of her. The doctor said she is doing very good. She has even gained a little weight. All of her blood counts were up this week and she is getting stronger every day.
On Wednesday, August 1st, she will be going back into the hospital for cycle 4 and CAT Scan. Please pray that things will go well for Sami, and her Mommy and Daddy.
Sami is a very special blessing to all of us and she is showing us joy through it all.
Saturday, July 21, 2001 at 11:38 PM (EST)
I'm home !
Check out my new pictures. My Aunt Patty is here to visit.
Thanks everyone for your kinds words and prayers. I'm doing GREAT.
Well, I do have to go back Wednesday for a check up at the CHOP clinic. But I don't have to check back in for cycle 4 till August 1st.
Thursday, July 12, 2001 at 11:16 PM (EST)
Thanks for visiting. Be sure to sign in so we can see who made the trip. We will respond if time permits.
Sami and I are at CHOP (Children's Hospital of Pennsylvania. She is receiving her 3rd cycle of chemotherapy and managing quite well.
Friday will be day four of five day treatment and if she continues to do well we could go home the beginning of the week.
July 1, 2001
Well Dan started last Sunday on the weekly update, but I never got it out. It was busy....and now we are home.
Week of June 11 trying to manage Sami's nausea trouble and make sure she did not get a fever since her white count was at zero. The doctors wanted to get Sami to take the nausea medication orally to prepare for going home and Sami didn't want any part of that stuff going into her mouth. She would clamp her mouth shut and it was torture to get her to take it. So much so that she makes herself vomit. After 6 hours of the nurse trying to get Sami to take the meds, Sami won and they started them through the central line. She also got a low grade fever for 24 hrs so they also started her on the antibiotics.
We are hoping that she does not keep this fever. She is set-up for the Apherises this next week. This is where they will set her up on a dialysis type machine and filter her blood for them to get her stem cells out. They need these for the double bone marrow transplant she is scheduled to get down the road.
As for how Sami is doing, she is on a roller coaster ride. She has her good moments and bad ones or tougher times. She is also battling the mucositis, this is where the Chemo has attacking the fast growing cells in her mouth and down her GI track. Since her white count is at zero she has nothing to fight it. Sami had this during cycle one and has gotten as bad or worse in cycle 2 as it was in cycle one. Once her white count comes back she will be able to battle this. In the meantime, she is trying to be as loud as her daddy is when she sleeps with her snoring.
Week of June 25. Fever and all antibiotics where removed and we started nutrition because her electrolytes were all messed up from vomiting all week. Tuesday was the worse day of all. The central line stopped working...we needed that line to go to Apherises on Wednesday. All types of options were told and non were good. Sami was put on strict no food or drink ... that is difficult to explain to an infant.... because we thought she would have to go back into surgery to get new lines. To make a long story short...the surgeon was able to get the line to work long enough for the Apherises which went well on Wednesday and Thursday. Friday we were discharge and Sami is doing wonderful at home.
We have to return to the hospital on July 9th, when we expect to start cycle 3 of chemotherapy. I expect we will be there at least 3 weeks and my plans are to take on the next chemo before making the trip back home.
Look for an update next week on a website create by sami's cousins.
Dan, Sandy and Samantha
June 19, 2001
Hi Everyone
Sorry, it has been over 2 weeks since our last update. Samantha, Dan and I would like to thank-you for all the cards, gifts, emails and phone calls. It is such a wonderful feeling to know that you are all thinking about us.
After all Samanthas infections and fevers dissipated and her blood counts came up she got her central line put in again on Monday, June 11th. That was a difficult day with no eating all day, but after 3 tries the doctors got a half working line. We pray that it gets us through Apheresis. We seem to have trouble with these lines since Sami is so very small and it is difficult to put such a large line in such a small vein.
She started the 2nd cycle of chemo treatment on Tuesday, June 12th -- just a quick two day therapy and we came home for the first time on Thursday. Samantha was in good spirits (when she wasn't throwing up), laughing at times and happy to be sleeping between Mom & Dad. But there was a fear of her dehydrating so we returned to CHOP on Sunday. We are in a different room so the phone is different. Since we don't know how long we will be here I will just provide the number as needed.
I do need health volunteers to keep Sami company during the day while I try to get in some work. Whether are at home or at the hospital.
Love Sandy, Dan & Samantha.
June 5, 2001
Hello All
Thank you for all the good wishes, prayers and positive energy.
We have been here at CHOP - Children's Hospital of Philadelphia for 3 weeks
now. Through diagnoses of Samantha's distended belly as neuroblastoma,
through the first cycle chemo and our first fever.
Last Saturday Sami got her first fever. They are common. Blood cultures found 2
blood infections and a urinary infection. The hospital staff is right onto top
of things. They started a number of antibiotics to battle the infection. See
Samantha doesn't have any white blood cells to battle infection. The chemo
kills those along with the cancer.
The urinary infection seems to have been beaten. The blood infection we later
found it was being cause by the central line. It had a blood clot in it and was
not allowing proper flow in and out plus it had bacteria growing. So they were
forced to take it out and put a PIC line in her arm. They will have to put
another central line in before we start cycle 2 of the Chemo. And before they
do that she needs to get her white blood count up, and not get any other
infection.
Ever since we have been in the hospital, Sami has had a sad look on her face.
Friday she started to be our old Sami we all love and have missed. She has been
sitting up in her crib playing and smiling and we even got some great laughs
from her. She has lost almost all of the fluid, which was about 8 lbs worth.
Her hair has started to fall out. But as odd as it sounds it is a good thing.
This is a sign that the Chemo is working. And it will grow back. Any bets on
what color?
With laughter has come all the emotions as well as crying. The nice,
cooperative Sami has turned into a crocodile-tear cryer over even the simplest
tasks like a temperature under the arm or a listen to the lungs with a
stethoscope. Seems she has lost all patience for the doctors and nurses. I
think she wants this over as much as we all do.
So our next step is to wait for her white blood cells to come up. The blood
counts need to be at a certain level before we can start the next cycle of
chemo which is scheduled for next Monday.
E-mails and phone calls 215-590-6325 are welcome. If you notice someone not on
the update list, please send me the e-mail address so I can add it to the next
update.
Sandy , Dan and Samantha
May 27, 2001
Hi Everyone
I know it is a little early for our 15 month Sami update, but Dan and I wanted to share some news with you. Some of you may already know that Sami is in the hospital.
About two weeks ago Samis stomach was really swollen and her pediatrician suggested that we take her to Robert Woods Johnson Hospital for consultation. A series of tests indicated that she had fluid in her stomach and Wednesday, May 16th, we decided to bring her to the Childrens Hospital of Philadelphia.
Her diagnosis is that she has neuroblastoma -- in laymans terms its a malignant tumor in her abdomen. The plan is to shrink the tumor enough to safely remove it.
Sami has completed her first 5 day dose of chemotherapy and has had an incredible response, returning her to her original weight and size in just 3 days. She is continuing to receive treatments in the hospital to encourage new cell growth and control infections. If all goes well, we may go home for a few days before returning back to the hospital for the second cycle of chemo June 8. Her treatment may take up to a year.
Our friends have been a tremendous help during our time of need. We thank you! Well wishers are discouraged from visiting at this time to protect Samantha from infection. Our bodies naturally fight infection without us ever knowing , making us carriers. But the Chemotherapy treatment that Sami has received has left her immune system and the ability to fight infection at zero. This is a good thing. It means the Chemotherapy is working. But it leaves Sami without the ability to fight common infections, including: colds, diarrhea, measles, chicken pox and other serious and common illnesses.
Dan has started a new job and is working during the week and spending weekends with Sami and me. I am very fortunate to be able to do my job from the hospital. Phone calls are welcome, but you could get a busy signal because I access the Internet with the same line.
Our address is
Samantha Rose Gray
Children's Hospital of Philadelphia
34th Street and Civic Center Boulevard
Philadelphia, PA 19104-4399
We do have an answering machine at home and at the hospital for times that we cannot immediately get to the phone. Please leave your well wishes as we can hear the message even though we may not be able to pick up the phone.
You can also call her Godmother, Arlene Neuman at 908-474-9564, for update details.
Well keep you posted and in the meantime, please keep us in your thoughts and prayers.
Sandy, Dan & Samantha
June 5, 2001
Hello All
Thank you for all the good wishes, prayers and positive energy.
We have been here at CHOP - Children's Hospital of Philadelphia for 3 weeks
now. Through diagnoses of Samantha's distended belly as neuroblastoma,
through the first cycle chemo and our first fever.
Last Saturday Sami got her first fever. They are common. Blood cultures found 2
blood infections and a urinary infection. The hospital staff is right onto top
of things. They started a number of antibiotics to battle the infection. See
Samantha doesn't have any white blood cells to battle infection. The chemo
kills those along with the cancer.
The urinary infection seems to have been beaten. The blood infection we later
found it was being cause by the central line. It had a blood clot in it and was
not allowing proper flow in and out plus it had bacteria growing. So they were
forced to take it out and put a PIC line in her arm. They will have to put
another central line in before we start cycle 2 of the Chemo. And before they
do that she needs to get her white blood count up, and not get any other
infection.
Ever since we have been in the hospital, Sami has had a sad look on her face.
Friday she started to be our old Sami we all love and have missed. She has been
sitting up in her crib playing and smiling and we even got some great laughs
from her. She has lost almost all of the fluid, which was about 8 lbs worth.
Her hair has started to fall out. But as odd as it sounds it is a good thing.
This is a sign that the Chemo is working. And it will grow back. Any bets on
what color?
With laughter has come all the emotions as well as crying. The nice,
cooperative Sami has turned into a crocodile-tear cryer over even the simplest
tasks like a temperature under the arm or a listen to the lungs with a
stethoscope. Seems she has lost all patience for the doctors and nurses. I
think she wants this over as much as we all do.
So our next step is to wait for her white blood cells to come up. The blood
counts need to be at a certain level before we can start the next cycle of
chemo which is scheduled for next Monday.
Sandy, Dan, and Samantha
Monday, July 2, 2001
Well Dan started last Sunday on the weekly update, but I never got it out. It was busy....and now we are home.
Week of June 11 trying to manage Sami's nausea trouble and make sure she did
not get a fever since her white count was at zero. The doctors wanted to get
Sami to take the nausea medication orally to prepare for going home and Sami didn't want any part of that stuff going into her mouth. She would clamp her mouth shut and it was torture to get her to take it. So much so that she makes herself vomit. After 6 hours of the nurse trying to get Sami to take the
meds, Sami won and they started them through the central line. She also got a
low grade fever for 24 hrs so they also started her on the antibiotics.
We are hoping that she does not keep this fever. She is set-up for the
Apherises this next week. This is where they will set her up on a dialysis type
machine and filter her blood for them to get her stem cells out. They need
these for the double bone marrow transplant she is scheduled to get down the road.
As for how Sami is doing, she is on a roller coaster ride. She has her good
moments and bad ones or tougher times. She is also battling the mucositis, this
is where the Chemo has attacking the fast growing cells in her mouth and down
her GI track. Since her white count is at zero she has nothing to fight it.
Sami had this during cycle one and has gotten as bad or worse in cycle 2 as it
was in cycle one. Once her white count comes back she will be able to battle
this. In the meantime, she is trying to be as loud as her daddy is when she
sleeps with her snoring.
Week of June 25. Fever and all antibiotics where removed and we started
nutrition because her electrolytes were all messed up from vomiting all week.
Tuesday was the worse day of all. The central line stopped working...we needed
that line to go to Apherises on Wednesday. All types of options were told and non were good. Sami was put on strict no food or drink ... that is difficult to explain to an infant.... because we thought she would have to go back into surgery to get new lines. To make a long story short...the surgeon was able to get the line to work long enough for the Apherises which went well on Wednesday and Thursday. Friday we were discharge and Sami is doing wonderful at home.
We have to return to the hospital on July 9th, when we expect to start cycle 3 of chemotherapy. I expect we will be there at least 3 weeks and my plans are
to take on the next chemo before making the trip back home.
Dan, Sandy and Samantha
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