History

Saturday, March 15, 2008 7:33 PM CDT

Wow, Im so behind!!!

Last month I took Anthony SKIING!!!. Grandpa has a condo at Windham, and lo and behold thats where The Adaptive Sports Center is, They cater only to the disabled. Anthony had his lessons with Bernie and Vinny, Well I must tell you, Anthony did better at 5 yrs old with no vision , then I did at 14 with vision!!! He did so great, he was very comfortable in his ski boots, maybe because he is used to his orthotics, But he did fabulous!!! I posted a clip of him skiing on Youtube.com , enter anthony dones when you get to youtube and you can see the 24 second clip.

Anthony is doing well learning Braille, he can identify words, and numbers now. He will probably go to regualr school next year, Academically, this boy is smart. I got him a cD collection, of learning the russian language, it has 4 cds, Anthony pretty much mastered the 1st cd in a week, and he loves it. What kid says to their mom" mommy I want to listen to the Russian CD please" he is too funny, he is also counting in Russian too.

He also has a knack for singing, so i wil lget him into lessons as soon as I find someone for voice lessons, the boy is talented. I know its a short and boring update but no news is good news!!! I will have vic post a new picture of Anthony skiing!

Take care!

Saturday, December 15, 2007 10:54 PM CST

Happy Holidays Everyone,
This is a really long overdue update. I was waiting for Vic to change the pictures, well he was ahead of me. I have run into some old friends recently and they told me I needed to update Anthony's page, so here I am!!!
oK well, Anthony just celebrated the 5th anniversary of his transplant on December 12, A big THANK YOU to Dr's Stevens and Rubinstein and THE ENTIRE STAFF at The New York Blood Center's National Cord Blood Program who work so diligently to save people's live. Thank you for starting this program that saved our little mans LIFE.

To All of Our nurses, and PCA's on 4th Floor BMTU at Schneider Childrens Hospital, who took such good care of Anthony when he was just 5 months old, Wynette, Anthony is not a baldy anymore, I know how you love your baldy's! you all have a special place in our hearts.

To Dr's Sahdev,Lipton, Vlachos and the hem/onc residents who were a part of Anthony's transplant team, THANK YOU for choosing Hematology/Oncology as your area of expertise, for your knowledge of blood disorders, stem cells, and all other things (I dont want to know about) that SAVED ANTHONY'S LIFE. we are forever grateful!!

5 yrs ago, we didnt know If AVD would be alive on a day to day basis, He is a medical miracle. look at him now. 5yrs cured, 5 yrs strong.

Anthony is still riding, he actually has graduated from Hippotherapy to some dressage techniques. so we may have an equestrian on our hands , as well as a musician. Anthony can sing " God Bless America" like Ronan Tynan and Celine Dion, He will ask you who you want him to sing it like!!! and he does! He will also sing Fergalicious and Clumsy. he will definately be singing in the future.

He is in kindergarten, and as always is the mayor of the school, as well as being the chick magnet. He says the cutest things sometimes. He is doing very well with his mobilty skills and using his cane to navigate his way around.Karen has been doing a great job teaching him. Anthony knows all the states, their capitals and their nicknames. He knows ALL the U.S. presidents, including the vice presidents as well as their first ladies, or as Anthony likes to say " The First chicks" He spells his name, and some other words, still learning Braille, he's having some trying distinguishing some of the letters in Braille, but he'll get it

this Winter, Anthony is finally old enough to ski. I had mentioned last year that he was going to learn to ski with guides at Windham Mountain, they have an adaptive ski center for the disabled and he WILL learn to ski, atleast once!!!he can hate it, but he is going to try it.

Thats about it, nothing really to report. Want to say good luck to Baby Gavin and his family, Gavin is getting ready for tranplant for OsteoATROCIOUS, another sweetie diagnosed with this awful disease, we are rooting for you Team Gavin!

HAve a healthy and Happy Holiday season and a very Happy New Year to all!!!

Love,
Tracey

Tuesday , July 3, 2007 11:19 PM CDT

Happy Summer Everyone!!!

Anthony went to his first Yankee Game on sunday july 1 and got to meet a new friend, Jorge Posada!!! Some of you may know that Anthony aside from the Osteopetrosis, developed a condition called Craniosynostosis. Well Jorge Posada's son has the same conditon and had 7 surgeries to correct it to Anthonys 1.!

Vic contacted the foundation that Jorge started, and told them about anthony. that was thursday. Vic got notified Saturday night that we would be meeting Jorge at batting practice. It was awesome!!!

Anthony Loves listening to the Yankee game with his nurse Kathy,and knows the whole infield, their numbers ,names and positions.When Jorge came over to us, he said " its nice to meet you Anthony" and Anthony replied back" its a pleasure to meet you Jorge" he was so cute, Jorge called Anthony his amigo, and Anthony says " he's speaking Spanish. He gave Anthony a ball and signed it, took pictures, and chatted.He is a real class act.

After the day was over, Vic and were talking and we both mentioned how we though it was great that Jorge went out of his way on short notice (and took the time to hear anthonys story)to meet us. yeah he is a celebrity but he is also a parent that went through the same thing as we did, He understands Because his child went though it too.it was a day to remember!

School is out, and Anthony is ready for summer fun!! He will do a 6 week summer program starting on July 2nd. Ok we have some big news here. Anthony may be in a movie! We're keeping our fingers crossed that he gets the part, what a great oportunity. Its an independant film, no Hollywood A-listersand it will be a foreign film. The Anthony's part would be that of a blind orphan from the Chechan War. Anthony will have to speak 4 lines of Chechan, should be no problem for him since he can speak spanish, Russian, chinese and can distinguish a Hindy accent!! He doesnt speak any of these languages fluently but can speak it well , he has a good ear for it. He had an interview last week, and he charmed Arielle, the writer. So we should hear back in a week or so. What a huge moment for us and everyone that knows what he went through. just 5 years ago, we were looking for a donor for this awful disease that he was diagnosed with, and Anthony fighting for his life with chemo, surgeries, blood transfusions, platelet transfusions, and cord blood transplant. And now 5 yrs later, to see him possibly in a movie, and hey , he could be the first blind actor, there arent any in Hollywood ya know!!! so we'll keep you posted if he gets the part!!

Horse riding started last week. Anthony is riding Yankee this year and his therapist Tracey is already trying to corrupt Anthony with Boston Red Sox nonsense. Tracey Is a red sox fan, and we are Yankee fans, so, everytime Tracey says " Go Red Sox" Anthony replies" boo red sox, go yankees!!! Kathy( his nurse) has him well trained.

vic and Kathy both go over the yankeee roster and he knows all his players, positions, and their numbers. Anthony is going to his first Yankee Game this sunday. We cant wait to see his reaction to the crowd, and hearing the ball hit the bat, he is going to love it!!!

Anthony has started swimming, he went in Ali's pool and then in grandpa's pool. He is quite brave now as he will wear his swimmies and venture off, just 6 months ago in Mexico, he wouldnt get off the steps, it was a security issue, and now he is so confident, Anthony went on a boogie which he calls " a NOSE board" henis too cute this kid.
we''ll put up pics of him swimming and some other ones we come across. HAPPY 4th of JULY!!!!

Love,
Tracey,Vic and Anthony

Monday, April 9, 2007 7:27 PM CDT

HAPPY EASTER !!
As you can see Anthony looks all grown up in his handsome little suit, Mr GQ himself!.

Anthony is doing terrific, he is so smart, funny charming and quite the flirt with the ladies!

Now that Spring is here, we are getting ready to get back to the stables to ride Cajun again. Last year Anthony was doing really well with trotting, steering, and stopping the horse, he was really doing great with commanding the horse. so now that he is 4 months older and a little more mature, we'll see what he is capable of this riding season.

Next Sunday we're taking Anthony into NYC to see Diego Live,he loves Diego, so he will have a blast!

There is really nothing to report, other than the common cold Anthony has had all winter, he is healthy!!!. We'll keep you posted.

Monday, January 22nd,2007 1:53 PM CST

Another one of our Osteopetrosis buddies, lost his battle yesterday.Evan Rosenberg was just 6 months old, please say a prayer for his family.

www.caringbridge.org/visit/evanrosenberg
* NEW PICTURES POSTED*

Nothing new to post really. The holidays were nice, Anthony "got" Santa this year. He loved everything that Santa brought him and continues to ask when Santa is coming back! we were going to take Anthony skiing this winter, but the people at the adaptive sports center at Windham ask that the kids are 5, so next winter he'll start on ski's.

Now that he is done riding his horse until spring, I want to look in martial arts classes. There is a karate school 10 min from us that the teacher is certified to teach blind children. However vic and I feel that judo or jujitsu, which is learned on the floor, (its all grappling techniques)and teaches you how to defend your self and fight on the ground.We think it might be more beneficial to him,to learn to defend himself this way. someone might think how easy to knock Anthony down becasue he cant see, not knowing that he'll kick their a** because he knows how to fight on the ground. we'll see.

thats it for now!

Monday, December 4, 2006 10:11 PM CST

Hola de Mexico!!!
Anthony and I are here in Cozumel, Mexico visiting grandma and grandpa. The weather here is a beautiful 85 degrees, some rain here and there but I'll take it over the weather back in NY!

Anthony is enjoying himself immensly. We went swimming with the dolphins, actually it was more of a dolphin encounter. He kissed,got kissed, hugged, danced and fed the dolphin. It was great, Anthony was a little hesitant, but he did like feeling the dolphin, her name was Ninfa. He really liked the noises they made, he continues to make their clicking noise. He and the dolphins actually have something in common. They both use echolocation.Its using sound to locate objects,as Anthony gets older, he will master this skill.

He really loves the beaches here. The water is very warm and crystal clear, I really enjoy snorkeling, a little crushed Nacho's brings the fish eating right out of your hand, I'll post pics when I get home. Stay warm and Ill post another update when we return in a few days.

Adios,
Anthony y Tracey

Friday, September 22 , 2006

It is with great sadness that one of our Ostepetrosis friends, Nate Hernandez passed away today. He had fought a long battle with Osteopetrosis and complications from the transplant. Please say a prayer for his family. Rest in peace little man.

Greetings to all, Hoping your all enjoying your summer. Its been so busy that we havent had time to update this summer.

Anthony had a great first year in preschool. He ended in June but started up again 2 weeks later for a 6 week summer program, and that just ended .

Anthony turned 4 on July 11, His party was at Chuck E. Cheeses and he loved it! thekids in his class loved it too, they all had such a great time! Anthony did lots of swimming this summer, loves the pool and the ocean, He really is a summer kid, I now realize that he prefers summer to winter, he hates getting all bulked up in layers in the snow, Can't wait to see if he loves skiing this year. Time will tell.
He still rides his horse OJ every Saturday, he is now sitting on a saddle and posting, and (trotting too,) he is doing really well on the horse, and he loves to hear OJ chew his carrots after they ride! HE is still doing piano lessons, it has been a little slow over the summer because of scheduling conflicts, but he will back to it when school starts.

health wise, he is doing terrific. He has had a lot of colds this year, but no fevers. Today we went for a skeletal survey to see what Anthony's bones look like. We know they are doing what they should be, because he has no transplant rejection problems. Just want to see what they look like. He is now 33 lbs 38 inches, he is catching up.

He also started to use the braille writer in school and he can even identify letters in Braille, We know it will come fairly easy for him because he can already identify the letters of the alhabet as well as other objects.

School starts September 7 and Anthony will be going a full day. 9 -2:30 5 days a week!!! Think of how smart he will be by next year. Well lets see ,He can count to 100 in english and Spanish, he knows the ABC's in English and Spanish, he has a crazy memory, doesn't forget a thing!!!! Vic will be posting pictures, enjoy the rest of the summer!

The Dones Family

Thursday, May 18, 2006 3:53 PM CDT

This is Piano Playing Anthonyat his recital. He was really cute and did a great job. he even said so himself when he took his bow.

We've been back from Mexico a week now and Anthony really had a great time. He loved the ocean and Grandpa's pool and most of all he loved all the Spanish being spoken around him!. When ever he would hear people speaking, he would say" they speaking spanish!" He was really good on the flights and CRACKED up every time we landed,. he thought it was the funniest thing!

This past Monday his class had a Mother's Day Tea, It was so great, he was so excited whe nhe heard me , he couldn't stop hugging me. The class made a video as a group and individual, it was so great. The gifts they made and gave to us were so adorable. Is taecher and aids made such a nice effort and did such a fabulous job for us moms. For Father's Day they have a tee ball game with their dads, how great is that? Thats really it to report. till next time!

Monday, May 1, 2006 2:56 PM CDT

Wow, I can't believe how behind I have been in updating this webpage. Anthony is doing so great, everyday he learns something new. We have great news to report.

Anthony will be in his first piano recital on May 13!! Who would have thought 3 yrs ago Anthony would be where is he is now! He will be up there for all of about 1 min.! but it will be the first of many! He even gets a trophy.

This Thursday we are going to mexico, Anthony will love all the Spanish being spoken around him, and we'll be there for Cinco de Mayo, which is a big holiday there. We'll be staying at my dad's house which has a pool, so Anthony will do lots of swimming!

Anthony went back to horse riding this past weekend. It was his first ride since just before winter, and he remembered how to trot, steer left, steer right, and stop. He has a great memory. Anthony was also invited by a member of the NYPD's Mounted POlice Unit, to come and ride a Police horse at Chelsea Piers!!! My brothers friend Wayne is the officer that invited Anthony to come and ride, He said they would be honored to have Anthony come and ride. He would wear a police helmet and ride Jack, Jack is their GIANT horse that leads all the parades, apparently he is the Shaquille O'Neal of the horses. we'll post pictures when we set up the date., and pictures of Anthony's recital.

till next time!

Saturday, March 18, 2006 1:48 PM CST

I hope you all enjoy the new pictures, especially on the homepage, Vic is pretty good with the graphics.Not to much new to report here.

We had a little scare last week, Anthony's school bus was hit by a dump truck that ran a red light,I happened upon the scene as I was going to the store, thank god all the kids were ok, they took them to the hospital and they were all released soon after.

Anthony is doing great, getting big, and really speaking so well, sometimes he will answer you in Spanish, or tell you to speak Spanish. He is a really funny kid.

I have met so many families throughout the country and in Europe who's children have Osteopetrosis, some kids have had a great outcome, others have become angels. Its all of us determined parents motivated to spread awareness about this horrific disease that we are proud to say that we are in the process of starting an Osteopetrosis foundation. We will all be the founding members of this group. to be ther to help other future OP families with financial assistance,support, advice and knowledge. we have some very amazing people in our Osteogroup and together we can make this happen. I'll keep you posted when we make up awareness ribbons.

We had a parent teacher conference last week with Anthony's teacher. She made the sweetest comment. She mentioned that sometimes she doesnt feel like the teacher because she is learning so much from Anthony, she said he has taught her so much. She really adores anthony and all her students,
Anthony continues his paino, and will be in a recital in May, dont get excited, he likes to play what he wants not what the teacher tells him, he is really just soaking up everything he learns, he knows all the notes, but only wants to do his own thing, stubborn little boy!

Horseback riding starts again soon, cant wait for that. Have a Happy Easter and a Happy Passover!!

The Dones Family

Friday, January 27, 2006 1:33 PM CST

Sorry for the long delay in updating. Ill have Vic post new pictures this weekend. Before I start with my update, I just want to say that our hearts go out to Barbara and Paul Wersten. The lost their little boy this week Ryan this week. Ryan had Osteopetrosis and passed away unexpectedly. Please say a prayer for them.

Anthony continues to do well, He loves his teachers and all his pals in school. Anthony is starting piano lessons tomorrow!!! We took him to an open house at a piano store, where they teach piano, and they said Anthony has a gift and he has perfect pitch, so not only will Anthony be a pianist, he will also be able to sing!!! Look out Stevie Wonder, here comes Anthony Dones!!! He is going to really enjoy this, We'll post pictures of him playing with his teacher.

Thats it for now, Please keep our other OP babies in your thoughts: Brenna, Nate, Austyn, Carlee and Ryan

Wednesday, December 21, 2005 6:47 PM CST

*NEW PICTURES POSTED*
If any of you can recall last February we accompanied The New York Blood Center to Washington DC to speak about Anthony in front of Congress regarding The Cord Blood Stem Cell Act 2005. The bill was to get the funding and have a National Cord Blood Registry- like The National Marrow Donor Registry. It will be regulated and regulated correctly, and will enable more women to donate their babies cord blood at their time of birth. So that more people in need of a stem cell transplant will now have a better chance of survival when there is no suitable donor , one that will reject less and offer a better outcome for the patient.
Over the weekend when deliberations were going on, Anthonys name and story were used. Apparently we had a big impact on the House of Representatives!

So today, president Bush signed the Cord Blood Bill at 12:16 pm- I feel great knowing that regardless of how scared and nervous I was to speak in front of congress, I spoke from my heart about the love of our life Anthony. And how without donated cord blood he would not be alive today. It was beneficial to have Anthony there, so young , so happy and so healthy right in front of their eyes. Its no wonder the bill was passed! It was either they passed it, or they would have felt the wrath of the Dones Family!

I was supposed to update on Anthony's anniversary , the 12th, but I just didnt get around to it. IM actually glad I didnt because there was really to much to tell. We had some family over for cake and coffee and Anthony blew out his "birthday" candle. It was very nice to see how far he has come in 3 yrs.just this time 3 yrs ago we didnt know what the outcome would be, didnt know if he would even survive chemo let alone having to deal with rejecting his transplant. He has come so far in such a short time, overcome so many obstacles and reached so many milestones. We cant be prouder.

This past weekend we were in Woodloch Pines, Pennyslvania. Since they have snow, we went tubing. Anthony our little daredevil , went by himself. We got it on video and this is the email from Vic attached to it.

"This past weekend my lil boy Anthony went Xtreme. That�s right, after what he has gone through in the past 3 � years, once again he proved, he�s got no fear. Down the mountain he went, and at the end he was begging for more and proud that he did it �all by myself�. What a feeling that must be. I guess to paint the picture: imagine being blind folded and walking up 10 � 15 steps, asked to sit down in a tube, and in the blink of an eye you�re flying down a mountain. That�s why he�s my hero!! Unfortunately, there is no audio"

anyone who wants to see the video clip, email either Vic or myself. Thats pretty much it, Anthony continues to do well. He is a regular kid with a cold. A cold that he fights. snotty nose and raspy voice and all. Have a very MERRY CHRISTMAS, HAPPY HANUKKAH, and a HAPPY NEW YEAR to all!!!

Love,
Tracey, Vic & Anthony

Friday, December 9, 2005

Anthony with Santa and Redford. This is where Anthony rides every Sunday, and Redford was the first horse Anthony rode last year. Anthony has been riding Tiara, they share a nice bond.

I will update more on Monday on Anthony's anniversary

The new picture on our homepage is a picture of Anthony and his "transplant" sister Jaclyn. This picture was taken last night at the Waldorf Astoria in NYC. We were attending the New York Blood Center's Biennial Chairmens dinne when we met Jaclyn. They were honoring someone from Newsday. There must have been about 800 people. Jaclyn is a cord blood transplant recipient and is also a transplant survivor. Jaclyn was diagnosed at age 15 with AML, a form of leukemia. What a beautiful girl! We have heard so much about JAclyn we were so thrilled to have finally met her!Anthony really took a liking to her. They have alot in common.It was really a nice time.

Anthony was dancing up a storm on the dance floor. He particulalry liked swing music the band was playing. He was such a good boy considering how exhausted he was. I really felt bad for having him out late on a school nihgt, but there arent too many opportunity's where a 3yr old gets invited to such an event, it was something that we couldnt pass up! Anthony pased out when we came home and was up for school the next morning.

Im so glad that we are a part of the New York Blood Center family.They have Their cord blood program head by 2 of the most down to earth, magnificent doctors in the world. They adore Anthony so much and love to see their survivors. Of course we are forever grateful for them for the technology they started that gave our sweet little boy a second chance at life. So this Thanksgiving holiday, be thankful for what you have,your health, your family and your friends. Have a Happy Thanksgiving, enjoy! till the next update , on Anthony's transplant anniversary December 12.!!

Please say a prayer for Nate, Brenna and Ryan, all babies with Osteopetrosis that were transplanted and are fighting for their lives, they really need the prayers

Till the next update..

Friday, October 14, 2005 3:14 PM CDT

Hope everyone is enjoying the rain, we're supposed to have a wet weekend, That means no horseback riding for Anthony again.
Anthony has now been in school over a month now and loves it! he is doing great and doing lots of fun things that he never gets to do at home. He goes to computer room, and has cooking class, movement therapy ( along with his 3 other therapies). He is walking great and learning how to use the long cane, he has a loner one now, but his teacher has ordered one thats the appropriate size for him.

I forgot to post this last week, but we were in Newsday on Mon. Oct.3rd, It was a story on what else.. the private cord blood companies vs. public donation. Also this Thursday Oct.20 we were asked to speak at a press conference and ribbon cutting ceremony at Long Island Jewish Hospital. The hospital is New York Blood Center's newest cord blood donation collection site! HOORAY!!!! more NY mothers can now donate their babys cord blood. So we will be speaking, so watch the news on Oct.20, I cant tell you a time because I dont know , butI would watch 5,6, 10 or 11pm news. It will be on the major news staions, so get your VCR's or Tivo ready!!!We're very excited to be a part of this, since Anthony was transplanted right next door.

Thats about it to report, we proud to say that Anthony is a normal healthy 3 yr old equipped with occasional attitude!!!

Thursday, September 8, 2005 2:45 PM CDT

ANTHONY'S FIRST DAY OF SCHOOL !!!!!

Anthony walked down the driveway to the bus, he was a little hesitatnt to get on, his backpack was bugging him, its a little heavy with his notebook ! but he had a GREAT first day. His teacher said he was very cooperative and might have been the only kid in the class that didn't cry. Lets face it, Anthony needs a break from mommy so this is his time. His teachers have his cubby, chair, and his tasks in braille. Such a great school, he is going to really grow up these next few months.

He gets most of his therapies in school, still gets feeding at home. his orientation and mobility teacher starts working with Anthony tomorrow. His name is Mike, Mike will be the one that teaches Anthony how to use the long cane and move about in public. Anthony already started using the cane, without formal training but really picked up on it , its like he knows he needs it!

Walking is really getting easy for him, and he really can follow your voice and turn at the precise right moment- he is really good at locating sound.

Anthony is still riding on the weekend. last week he trotted on his horse! not bad for a 3yr old! I cant even get on a horse let alone, trot. Last week he rode a new horse named Cora, she was a really blonde, he usually rides Roger but Im thinking Anthony and Cora are a better match!. thats it for new , I will post again soon!

Wednesday, August 3, 2005 8:45 PM CDT

It's official...
ANTHONY IS WALKING!!!!!!!!!!!!!!
HE FINALLY HAS THE CONFIDENCE AND HE IS WALKING BY HIMSELF!!! He will follow our voice as we direct him( he is very good at this) and he has even started to let go of a surface and take off on his own!! He has even gotten so confident, that he will clap his hands as he is walking. we are so excited, we know before long he'll be running all over the place. He has made huge milestones in the past 3 weeks, all right before he starts school. He must know what he has to do, walking, drinking from a cup, and self feeding. Braille will be a breeze for Anthony, compared to learning how to walk. It will probably be so much easier for him.

Anthony is meeting with his new Teacher of the Visually Impaired tomorrow, she will come here to meet Anthony and then meet with him at the school in the next 2 weeks, this way he can learn the classroom, and she can see how smart he really is. Its also nice to know that she herself has a blind child, so I know we are in good hands!
thats it for now,

stay cool and enjoy the rest of the summer!

Monday, July 11, 2005 3:59 PM CDT

HAPPY 3rd BIRTHDAY ANTHONY!!!!!!

Yesterday was Anthony's first real party with kids, family and friends! It was such a great day, the kids had a great time and loved the pony rides. Anthony was pooped by 2pm!
Anthony went swimming and was drinking from his sippy cup!!! That is a huge step for us!.We had a pinata, and blindfolded all the kids, some kids have a really strong arm and can swing a bat!All in all it was a great day, Anthony had a great time and got such wonderful gifts.

Anthony's orientation and mobility teacher is going to start working with Anthony next month. Hopefully Mike can get Anthony walking, maybe the cane will give him the confidence he needs, we'll see. Mike will work with Anthony 2x a week. once in school when he goes and once at home. He will also get some therapies in scholl and he will still get feeding therapy at home, he has come a long way in a short time, so maybe by September he'll be a good chewer. He learned how to use his sippy cup within 2 days, the chewing is our biggest hurdle, as is the walking. He is getting TOO heavy to carry around now at 31 lbs, its gettin' to be a bit much !

July 30- is our annual family reunion in Long Beach, we're hoping the ocean is warm so he can go in, it was way too cold July 4th weekend. Looking forward to the reunion, we always have a blast.

August will be our 3 month clinic appointment. When we go , Im going to suggest we come every 6 months since we have never had a problem. Clinic days are an ALL day affair and now that he will be going to school, its not going to be fun. Im sure his doctors will allow us every 6 months. thats about it, Have a great summer everyone!

Thursday, June 23, 2005 1:18 PM CDT

HAPPY 4th OF JULY !!

Anthony has accomplished quite a bit these past few weeks. He learned how to feed himself with a spoon!! Wooho Huge milestone!!! Now we are working on how to use a sippy cup.

Anthony has learned how to climb, he was always able to get down from the couch or our bed, but could never climb and now he can!

He is really learning how to communciate. He speaks very well and very clear, and has a large vocabulary, and he answers questions, now he is starting to understand that he can ask for what he wants.

We are still working on walking. he can do it and he does, he just needs the confidence to realize that he wont fall, he is really good at following voices and walking towards the voice- So when he plays Marco Polo in the pool with his friends, he will always be able to find them!

Anthony will be turning 3 on July 11th, and he is starting to act his age!!He is getting so big, I can't belive how far he has come, and he just keeps amazing us everyday. He is having his first "real" birthday party in 2 weeks, with kids, and family and friends. He is going to have a blast!

Im going to have Vic update with some new pictures, so be on the lookout! and thanks for visiting!

Saturday, June 4, 2005 2:58 PM CDT

Hello All,
Well after 1 week, CNN still hasn't aired us. They are now going to wait until some stem cell related news breaks. So who knows when it will air.
Last week Anthony experienced his first vaction. He loved the ocean, who wouldnt love Siesta Key Beach. And he loved the pool. I think we have a potentially good swimmer on our hands!His love for the water will come in handy when he celebrates his 3rd birthday next month. He is having a pool party, so I think he will enjoy himself very much.

We also want to thank our friend's Brett & Tricia for thinking so highly of Anthony, that they made a donation to Schneider Children's Hospital, Bone Marrow Transplant unit, in honor of Anthony. They did this in lieu of wedding favors for their wedding on June 3 2005. It was so thoughtful of them to do this, we can't thank you both enough!! You have no idea what this means to us, and what this will do for the bone marrow unit. Thank you and have a great honeymoon!!

Thursday, May 26, 2005 8:27 AM CDT

CNN tonight. the piece on us will air between 7-8 pm.

Friday, May 20, 2005 6:58 PM CDT

CNN was here today doing a story on Anthony. They were here from 12:30 -5:00pm. They even came to the pediatrician's office. That was pretty cool. Its not often you have a camera crew following you and interviewing you at the doctor's office!! So since we will be in Florida next week, the show will air either next Tues, Wed. or Thurs. Sorry I dont even know the times. Its with Dr. Gupta( or something like that)

Maybe Vic can give you a heads up since he is coming to Florida after me. Take care and have a nice Memorial Day Weekend next week!!

Friday, May 6, 2005 5:27 PM CDT

**SET YOUR VCR'S FOR SUNDAY NIGHT**

Sorry Im a little overdue. We have had a busy month. Anthony has gone back to riding his horse on Sunday's and he continues to love it. He is almost an independant walker, he can do it, I think he is still a little scared.
Anthony is getting screened for his pre- school next week for September. Can you believe it already!

Thursday night we were invited to the Cresthollow country Club for a Long Island Blood Service recognition dinner. I was the guest speaker, in front of 300 people. I was there to talk about Anthony. (Luckily my dad was able to bring Anthony there for when I spoke )and when I was finished speaking, I introduced Vic and Anthony up to the stage, where we got a standing ovation. A standing ovation. Can you believe that? I was told that there hasn't been a standing ovation in 14 years!!!I couldn't believe that our story brought these people to tears( well actually I could) and they thought so highly of us that the applause was unreal. It was such an honor and priviledge to do this for Anthony. We would do anything for him, and to talk about what we went through, educating people really makes me happy. There was so many people that came over to meet us, and to meet Anthony, to thank us and wish us luck, and so many people that didnt know that a babies could have chemo and a stem cell transplant. People were devasted at what Anthony had gone through.They really learned a lot in 6 minutes. we will be featured at another dinner on June 9th

We were also asked to do a press conference on Mother's Day at the New York Blood Center with Senator Chuck Shumer. So we will be doing that at 11am. Watch the News at 6pm . we will be on!!!

May 22 we are off to Florida. Anthony's first vaction, cant wait to see how much he enjoys himself. Thats it for now, have a Happy Mother's Day to all moms!!!

Sunday, April 3, 2005 3:36 PM CDT

Today we went to see Dora the Explorer Live at Radio City. It was a really nice show. Anthony enjoyed the show but I think he was more amused on the train and the subway.

Anthony started taking steps on his own, not 1 or 2 but 15. Anthony goes from doing nothing to almost having something mastered. Hopefully this will help him with his confidence and letting go. He needs to know that he will be ok if he stands up on his own. He doesn't quite understand that yet.

We are looking for an O&M teacher to start teaching Anthony about using the cane. Maybe the O&M teacher can give us other things try to get him to walk. He will be starting preschool in September, and it would really be great if he was walking by then.

Its amazing how acute Anthony's hearing really is. He is definately going to have something to do with music in life. He has such an ear for it. He can hear Usher on a commercial and he'll start singing an Usher song, and he can sing the tune exactly as is. Im looking into piano lessons for him. I'd like him to learn the Suzuki method of learning. I think its the easiest for him. The Suzuki method teaches you how to play music by listening to it. I dont think you can read music in Braille and play the piano at the same time.! He just knows what each note should sound like.

Anthony is having a CAT scan this Thursday so the neurosurgeon can see what Anthony's head looks like since surgery 4 months ago. Hopefully everything looks good.

Not much else to report, Anthony is doing wonderful , he is talking so much now, and he is so funny too, He has Vic's humor- he is a little wise a$$. He has a great personality!. The pic on the homepage is from Easter, I'll see if Vic can update the pictures tonight.

Saturday, March 5, 2005 10:50 AM CST

I would like to take this time to ask all family and friends if they could write a letter to your congressman asking him/her for their support /consideration of the Cord Blood Stem Cell Act of 2005 HR 596. This is the bill that we went to Washington DC to speak about. The bill will allow the New York Blood Center more funding to set up in more hospitals across the US, so that more mothers can have the opportunity to donate their babies cord blood. There is only 5 hospitals right now, and LIJ is in the works. They would like to have an inventory of over 150,000 units in 5 years. Doing so, would allow more patients without a matched sibling to receive transplant, so that everyone can have a match. Its a no brainer!

Just make sure your letter starts off with HR 596. This allows Congress to pull up the bill immediately on their computer. you can mention Anthony's name, as I went them all to know ANTHONY DONES, CORD BLOOD TRANSPLANT SURVIVOR. I went them to get sick of hearing our name , so that they all support this bill!!
If you do write a letter, I would like a copy of it, you can email me if you dont have our address. Thanks in advance!

Anthony is doing well without his feeding tube, He tried tuna fish for the first time last week and did really well with it, Of course this was eating it from his feeding therapist Brynn, and his nurse Melissa. When i tried it with him, he flat out refused, Thats our fiesty little boy!. I'd like to say he is walking , but he still isnt doing that, still afraid of "space" , eventually he will get there, hopefully by September when he goes to pre-school. I will update soon with new pictures. Have a great weekend!

Tracey

Thursday, February 24, 2005

Today Anthony had a visit with the GI doctor. I wanted to talk about getting his feeding tube removed since we dont use it anymore. Well, they took it out right then and there!!!!The hole is probably closed by now, it only takes a few hours to close. Thats it we are done, I think we can close the chapter on this !!!!

http://www.wirepix.com/newsphotos/index.php

Our trip to Washington Dc was amazing!!

We were treated like royalty, We have never felt so important.
So after i spoke, everyone was so touched they came up to Vic and I and thanked us for coming and sharing our story. They were even happier to meet Anthony. I think bringing Anthony , and telling our story really might make all the difference in this Bill being passed. its a bill to get funding for the public blood banks so they can set up in more hospitals, and more moms can donate!!!woohoo this was one of my goals upon Anthony coming home from transplant.

Dr. Rubinstein kept thanking us over and over for coming and sharing our story, and rearranging our schedules to be there. I told him, as many times as you thank us, its not as many thanks that we have for you, for having started the National Cord blood Program, I said YOU saved Anthonys life!

After the briefing, I was able to schedule an interview with a news station. I have been in contact with an anchorwoman from Ohio that wanted to interview me on cord blood banking. well she was able to send someone from her sister station in DC to come and interview me, so the New york blood center laughed and said that I brought my own press and that Im in high demand!
Afterwards we were invited with the NYBC to have lunch in the Capitol Building in the Senates dining room!! Wow it's restricted area! VIP is only allowed in there, and we were VIP today. We NEVER FELT SO HONORED!!!

The weather was about 65 degrees and so beautiful, we walked around a took some pictures. All in all it was an amazing day, and to think that our story WILL play a a huge part in getting this bill passed , what a high!!!! Its one of our proudest moments, doing someting in honor of our child!

I really have to thank Vic for yesterday, he is the PROUDEST dad I know. He was so on top of Anthony yesterday,Anthony was quite irrated in the briefing room and was getting very upset, Vic took Anthony outside the room, (and his face paid the price! Anthony gauged his face with his nails!) and tried to keep Anthony content. So that I wasnt more stressed, because I was really nervous!

Anthony did really well on the flight. It was his first time on a plane- luckily it was only 60 min. and slept during the flight both times. He was really good.

Thursday, February 3, 2005 9:28 PM CST

Before I start this journal, I just want to tell Jill and Scott our thoughts are prayers are with them and their families. Their precious 13 month old daughter, Hannah passed away on Feb.2. She fought long and hard on the ventilator for the past 3 weeks. I am so glad to have had the opportunity to meet Hannah, and her parents. Hannah was the first child that we met other than Anthony to receive an unrelated cord blood transplant. We just can't tell them enough how sorry we are for their loss.

On Tuesday Febuary 8th, we will be attending a conference on Cord Blood in Washington DC. We will be speaking in front of the House of Representatives. We will talk about how Anthony benefitted from an unrelated cord blood donor in various ways. We will just be flying there for the day, It will be Anthony's first plane ride, should be interesting! I'll post about or trip there. We are really looking forward to telling our story to people that have the power to make a difference. Hopefully after meeting Anthony , and some of the other survivors, the future of cord blood will be be forever changed for the better.

Other wise, Anthony is doing well, his scar is barely noticeable and he is losing his stitches. We will be back to the neurosurgeon in April and he will have another CAT scan at that time to make sure everything is going well with his skull and brain. He is talking so much and has even started to say some words in Spanish, thanks to Dora the Explorer!

Have a good weekend!

Saturday, January 22, 2005 9:52 AM CST

Anthony's surgery was almost 3 weeks ago and he looks wonderful. He still has his stitches, but they will dissolve on their own. He is speaking so much, and so well. he has such a personality!
He started back up with his therapies this past week, and boy when he doesnt want to do something, Watch out!! Leigh his physical therapist felt his wrath this week!. He kicked, and punched her, and pulled her hair! he has never done this before, Poor Leigh!

We are getting ready to start Anthony's evaluations this March for preschool come this September, Can you believe he is going to school already?? He will go 5 days a week for about 2 1/2 hrs. It will be such a wonderful experience for him to socialize and play with other kids with special needs. Anthony doesnt have much interaction with kids, so I think he will enjoy it.

We are waiting for the Blizzard to arrive, We want to take Anthony out in the snow, (since he has never sat in snow) and watch his reaction, hopefully we'll get some snow so we can take pictures!

Lastly, If anyone is O- blood type, please go and donate your blood. A wonderful little girl named Hannah who is 1, is fighting for her life at Schneider Childrens Hospital. Hannah had a cord blood transplant in August for a rare genetic disorder and she needs o- blood. since it is rare, and she requires so much of it, The more people that donate to Long Island Blood Services, the more she can benefit from it. Please keep Hannah, her mom Jill, and her dad Scott in your prayers. We so know what they are going through and they could really use our prayers.

Friday, January 7, 2005 1:29 PM CST

****WE'RE HOME****
Anthony was discharged yesterday, we got home at 5pm, and he was so happy to be home. What a change in his personality!!! He is drinking well, eating is a little slower, Im hoping that will pick up in the next few days.

His eyes are no longer swollen, but they are still black and blue, his head is still a little swollen and he has a nice big scar from ear to ear, that hopefully his hair will cover, if not Oh well, he is still adorable anyway!

Well we hope this it it for Anthony.He has had rough 2 years. Startting from diagnosis to surgery, chemo, blood and platelet transfusions for 2 months, a cord blood transplant, a trip to the ICU,ventilator,countless procedures that require anesthesia. adenoid removal and a craniotomy in 2 weeks apart!!! whew thats a mouthful.He really has endured more than what most people in a life time will never experience. Our little boy is healthy ans certainly hapy. Its all that we could ask for.

Thank you everyone for your support and phone calls and prayers for Anthony.

Wednesday, January 5, 2005

**HAPPY BIRTHDAY VIC**!!!!!!
Anthony is still doing well, still very swollen, and today he has two black eyes. we have to keep rotating him from side to side so his head evens out and the swelling comes down. He has his moments where he is just really uncomfortable and irritable , and then other times he has a lot to say and is his happy self. He has only had 3 oz apple juice to drink and 2 oz milk. when he starts to take more by mouth he can go home. Im thinking he'll be ready by Friday. But what a difference in the shape of his head. Its nice and round!!! Hooray for Dr. Mittler, the neurosurgeon, (he certainly earns his paycheck!)

Enjoy the new pics that Vic put on the site.

Anthony's surgery went better than expected yesterday. The neurosurgeon anticipated being in the OR with Anthony for 3-4 hours and was finished in 2! He is VERY swollen right now and looks like a little buddah. He has been sleeping most of the time and occasionally says his few favorite words" I gotcha" momma, Yes!

We will probably be going home on Thursday or friday. We are on MED4 so any one can visit until 9-10 pm. 4th floor, go to the left. We are lucky enough to stay on the hem-onc floor, alot of the nurses here are some of Anthony's nurses that took care of him during his transplant, so we feel very at home here. Take care!

Sunday, January 2 , 2005

***Visiting hours*** during Anthonys stay are 11am -8pm. If you have a cold or you are not feeling well, please do not come, Anthony will be in ICU and there are many young children that are critically ill and can not contract germs, ( remember us 2 yrs. ago??!)

We went for pre-op testing today in Hem-Onc and he is cleared for surgery on Monday Jan.3rd. The little piggy is now 27lbs.!!! he has gained 4 lbs. in 4 months, nice!!!

Everything went well after he had his adenoids removed on Dec. 15. He says so many more words and sounds now, its amazing how much a difference it has made.

One of us will try to update after surgery, try checking in on Tuesday. Hope you all have a Happy New Year 2005. Hopefully we will have some new photos to post as well. HAve agreat weekend and enjoy your plans!!!

HAPPY NEW YEAR!!!!!

Thursday, December 16, 2004

Anthony had his adenoids removed and tubes placed in his ears yesterday. Everything went well. He was really groggy and unhappy after the surgery not from pain, but from anesthesia. but today , he is back to himself. One surgery down , one more to go.

HAPPY ANNIVERSARY!!!!!! Its been 2 years today that Anthony received his transplant. WOW, where has all the time gone?? I can't believe he was just 5 months old at transplant and now he is 2 1/2!!!! Hooray for my little boy and his celebration of life!!!

We just got back from a wonderful weekend in Woodloch Pines ,PA. Anthony had a great time, too bad there was no snow, tubing would have been great. Ill try to post pictures as soon as possible. At dinner Saturday nihgt, the ownner of the resort announced birthdays and announced" that "Anthony dones a very special 2 1/2 yr old bpy was here celebrating his 2nd anniversary of his bone marrow transplant, it was so nice . Grandma and Grandpa asked him to make the announcement and he came to congratulate us personally. It just so happens that when his son was 28 he had a BMT and is now 5 yrs cured of Leukemia.

This wednesday Anthony will be having his adenoids taken out, Thank god! This poor kids nose has been stuffed up for 3 months now.

January 3rd Anthony will be having his craniotomy. He will spend a few days in the hospital and I will be there with him. I'll make sure Vic updates the page so you know whats going on. Thats it for now, have a nice week!

Saturday, November 20, 2004 8:41 PM CST

Hello Everyone,
We just got back from dr. mittler's office. Anthony does have craniosynostosis, we saw his CAT scan, it was the weirdest thing, So we were able to see where his skull fused and the pressure, Dr, mittler said that we can schedule the surgery for the first week of January, so we can enjoy the next few weeks. The surgery is about 3-4 hours, he will stay in the hospital for 2-3 days. he will cut the same incision on his head but continue down to the other side.
One of the risks is blood loss, so he may need to have a blood transfusion if necessary. he will talk to Dr. Vlachos about that. we feel much better since we met with him and answered all our questions

Friday, November 12, 2004

Hello all,
Here is the link to our story in the Daily News!
http://www.nydailynews.com/city_life/health/story/241454p-207093c.html

Happy Halloween Everyone!!!
Anthony is going to be Elmo this year. This will be his first year trick or treating( evern though he has no idea what candy is) ! It should be fun. We also have a Halloween party at grandpa's house that night. We will have to post some new pictures after Sunday.

I forgot to mention weeks ago how wonderful our trip to the New York Blood Center was. Everyone was so wonderful and so excited to meet us, as we were just as excited to them. They gave us a tour of the facility and showed us new cord blood units that were donated from the day before. We met with the doctors, lab techs, administration, the women who determine whose unit is best matched for a patient, etc Everyone fell in love with Anthony, how could they not, he was hugging and kissing all the ladies, my little flirt!! Anthony had a great day, he must have known they were all behind the program that gave him a second chance. THANK YOU EVERYONE AT THE NYBC!!!

Have a great weekend, enjoy your parties and stay safe!! I will have Vic post all new pictures this weekend.

Friday, September 24,2004

** NEW PICTURES POSTED**

Hello everyone!
Its been about 2 weeks since I have posted last . Anthony is doing really well, growing up and getting so big.

Anthony started Hippotherapy last week. It's Physical therapy with the use of a horse. He's been on a horse more times than I have !! And he's 2! He really likes it and it will help him with walking. His horses name is Boomer. I'll have Vic post pictures of Anthony and Boomer. The story in the Daily News should be coming soon. It do know that it will be in a Wednesday edition of the Daily News, so be on the lookout!

Tomorrow we are going into the city to meet Tracey Jones from England. She is the first person we had gotten in touch with when Anthony was diagnosed. Her son had the disorder and he was transplanted 10 years ago, so she is here on vacation and we are really excited to meet her. Have a great weekend!

If you are pregnant, please consider donating your baby's umbilical cord at birth. Anthony is living proof what donating this valuable life saving material can do. To think that the umbilical cord is thrown away most of the time. To inquire about how you can donate your baby's umbilical cord at NO cost to you, please contact The New York Blood Center.

PLEASE, If you aren't already, register with The National Bone Marrow Registry to become donors. Its a simple blood test that determines your tissue type. Just knowing that you are registered makes it that much easier for a potential transplant patient to be matched quickly.

Secondly, there is a shortage of blood supply. Please donate blood or platelets when you can!!! Anthony was so dependant on blood and platelets for 2 months it helped saved his life!!, you don't realize how very needed it is. Thankfully Anthony always received his blood when needed, so know that when you donate, your blood IS being used to help save a life!!!!

Anthony is a fighter, he continues to amaze us everyday. His stubborness has actually been a blessing( except when I
want him to do something and he refuses!)
Your continued prayers and support have meant so much to us, we thank you so much for that.

Wednesday, July 14, 2004 4:29 PM CDT

Thank you everyone for signing the guestbook. We love to read each and every entry. Vic added two pictures just to test, now he'll add some more. We'll try to update his pictures as frequently as we can.
Anthony will meet with the surgeon on July 22, to have his mediport taken out(central line). Its a celebration alone just to have that taken out.
Anthony is enjoying all of his new toys , especially his piano. I think we have a natural on our hands! he loves his music and I think he will definately be a piano player. I will post more updates as they come! thanks for visiting the site!
Tracey

Monday, July 12, 2004 3:57 PM CDT

Anthony turned 2 yesterday. It was such a great day! we got the news last week that his immune system is normal!!!! Yippeeee. He's off all transplant meds, and we can now take him out to public places. I took him to Target last week and he sat in a shopping cart for the first time!!! I'll write more later, I was just testing this out. Too bad I didnt know about this site right after Anthony's transplant.

Click here to go back to the main page.

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