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Sunday, March 06, 2016
February 1st-February 29th:
January 1st-January 31st: With less PT therapy from four days to two days, Nicholas' body sometimes become a little stiff and with the cold days coming up after having a lot of summer weather during the Christmas break, more stretching excersise at home wit the rubber band. Daddy has made a decision about running the 2016 NYC Marathon. Now he is just getting ready to run a couple half marathons before the big one.
December 1st-December 31st: The family had a IEP meeting with the NYC DOE about Nicholas' future and his physical therapy. During the meeting his physical therapist came to a conclusion that Nicholas is healthy to be around the school education atmosphere, so they are graduating him from PT. Funny how since the family brought a lawyer to the meeting and the DOE brought District 13 PT Supervisor, a DOE PT Manager and one of the assistant principal at Nicholas. The meeting was both positive and negative and at the end of the day, we resolved nothing. The celebral palsy results from two years ago in which the physical therapist team from the DOE did not pay attention to, this time around the Manager paid attention since the lawyer was there and results from Nicholas' last check up from HSS. After that meeting the DOE is playing hard and after listening to there report on Nicholas the family came away stunned with the lies and inconsistency of there report. The holidays was great.
November 1st-November 30th: The Nicholas Modestin Toy Drive is in full swing. Both local NFL football teams donated gifts for the toyr drive. The New York Giants donated an autograph football for a lucky fan and the New York Jets donated a big box that only the party coordinators know what they donated. Queen of All Saints Roman Catholic Church in which Nicholas and family attends is one of the big spots of dropping off gifts for the toy Drive. Nicholas gave a speech after the 1030am mass and looked outstanding. Thanksgiving was quiet as the Modestin family went upstate New York to spend time with Nicholas' mommy side. This time around every body had to pitch to complete the dinner. The weather was nice so the kids got a chance to play outside. Report cards came out and it was a solid day for Nicholas and a day full of joy and smiles for mommy and daddy. Still no physical therapy at Support By Design for Nicholas as he just has 2x30 at school. Mommy and daddy just have to wait for his IEP meeting in December and hoping for the best that Nicholas will get the much needed physical therapist back from the district 13 office.
October 1st-October 31st: Look who was on TV on PIX 11 Morning News. Nicholas was a model for Leukemia & Lymphoma Society of NYC modeling clothes for Burlington. He had a great time with another who won the battle against childhood cancer modeling clothes on live TV. Once mommy/daddy get the link of the news they will display it. Nicholas danced the nene while modeling. Mommy and daddy did not get a answer back from the PT Supervisor, so for now Nicholas gets only 2x30 PT therapy at school. The NYC BOE does not realized how much Nicholas needs to continue his outside therapy to build back up his muscles in his legs. At least one person would disagree with the PT Department. Nichols had his yearly check up at Hospital of Special Surgery and during his check his left leg is still weak and needs to continue outside with the right exercise machine to build back up his muscles in which therapy at school can't give him. For Nicholas to get back strong after his check up, he needs the consistency of physical therapy after school. While the family hopes for a change of mind and decision from the PT Supervisor, mommy and daddy are creating and doing extra physical therapy at home with Nicholas. Walking longer routes after school and running around the MS track around the apartment. Saturday Academy started as PS 11 gets Nicholas ready for his state test in Science, Math ELA. His teacher Ms. Morris is getting him ready for the test. One thing in favor for Nicholas in his firve years at PS 11, is that he has been blessed with having solid strict, discipline teacher who gets the best out of him. The homework she gives Nicholas, has him writing two paragraphs a night that is improving his writing and how he can break down a chapter a put it in writing and math skills that has him resolving the problem with a show of work and quick response. After Saturday Academy, Nicholas goes to choir practice at school. This year he belongs to thre choir. Saturday Academy, PS 11 and Queens of All Saints. Nicholas love to sing and now he can practice and show the world his voice. This month was also Nicholas' six month check up at the hospital. He grew a couple inches to 54 and lost a couple pounds to 102. His flexibility is getting better, but you can still see the stiffness in his legs. To build back up his muscles, mommy and daddy have to do research and find a stationary bicycle for Nicholas to pedal and built back up his legs to continue his fight and determination to ge back 100%. The Nicholas Modestin Toy Drive started this month as Nicholas spent the weekend with his father passing out the letters. This year Nicholas is doing his toy drive out of Queens of All Saints Roman Catholic Church and he passed out letters to the restaurants around the Fort Greene/Clinton Hills area. Nicholas and daddy did a lot walking one Sunday that when the days was over, Nicholas realized how much walking around DeKalb Avenue, Myrtle Avenue, parts of Fulton, Lafeyette Avenue and Classon Avenue.
September 1st-September 30th: The month started off on a good note as Nicholas participated in Mets Kids Day sponsored by the Mets and Leukemia Lymphoma Society of New York. He got a chance to bat and throw the baseball with Mets players. The one thing he loves is running around the bases for a chance to see how his legs are doing. He was running with his braces and did a great. The only mistake was he missed touching third base. The weekend after that he got invited by Moms in Training to spend a day having fun and exercise. Nicholas stood out in the Hip Hop Class dancing the Nene that he left him father speechless. School started out on a great note then in the second week school, Nicholas was moved from one class to another class. The reason was his IEP. PS 11 got a new student with a IEP who needed to be in the ICT class so to accomodate the student, Nicholas was moved to another class. Nicholas was upset about the move, but he had to move due to school and state laws when it comes to IEP students. Mommy, daddy and Nicholas went to speak to the principal at PS 11 and she explained the rule and laws of the IEP. The decision was made and Nicholas had a new teacher. After four days in one class, Nicholas got adjusted to his new teacher and new classmates. Mommy and daddy had a meeting with the new teacher and she broke down the subjects and steps of what Nicholas will be learning throughout his year in 4th grade. The one bog thing is every night he has to read a book for hour and write two paragraph summary. Daddy taught Nicholas to write down key points of chapters and turn it into sentences and that will be great help of writing the two paragraphs. The greatest feeling for the whole family was going to see Pope Francis in Central Park. On that day Nicholas went to school to take a math test and daddy took him out to see Papa Francisco. His teacher was happy that one of her students was going to see the Pope. Nicholas and daddy waited for at least five hours to see Pope Francis and it was a special day. First a rainbow came out in the sky and then the Pope Francis gave us a blessing as Nicholas held out a picture of himself and a miraculous medal. After the Pope Francis passed by, Nicholas was interviewed by 1010 WINS News radio. All the happiness of the Pope dashed away the week after as the NYC Board of Education will not approve of giving Nicholas his RSA Packet to continue working with Lima at Support By Design. Since the mandate says that PS 11 got two Physical Therapist, Nicholas can do all his PT therapy in the school. This means that Nicholas will be taking out of class four days a week in which mommy and daddy would not accept. After going back and forth with the PT Suprvisor, he decided not to approve the RSA packet and rather have Nicholas lose PT sessions and have him taken out of class four days a week. The NYC BOE say they care and nuture a child education, but how can they care and nurture of taking a kid out of class four days a week. Parents have the right to protect there children and the supervisor rather see the mandate instead of Nicholas' health first. Now mommy and daddy have to wait and see if the paprent advocate can help with the decision. A lot of loop holes like two years ago and hope they realized they mistakes they made.
August 1st-August 31st: Nicholas was happy to get his state test grades and he passed both Math & ELA with flying colors. Thanks to all the great teachers at PS 11 who guided him in preparing for the state test at Saturday academy. With camp about to over, mommy and daddy had to plan what they were going todo with Nicholas for three weeks before school started. The family spent time traveling and sightseeing, visiting family and going to physical therapy to finish off the summer.
July 1st-July 31st: Nicholas became more mobile and improved his body motion with the help of his summercounselors having him swim every day of camp. Heat wave was beaming hot sun this month and it was great for the campers to be in the pool swimming and learning. For everytime Nicholas was in the water, his left leg was getting stronger and his stamina of walking and running longer got better.
June 1st-June 30th: Another solid school year for Nicholas and he finished off Ms.McCoy 3rd class with grades that brought smiles to mommy and daddy. Summer camp started for Nicholas and he was off to Sunrise Day Camp to enjoy himself with other campers till August.
May 1st-May 31st: The family heads down to the nations capitol for Nicholas' cousin Chanel graduation from Howard University. Nicholas was happy to see his cousin and told the world about her graduation from his therapist to his teacher. We drowve around DC so Nicholas could see the monuments.
April 1st-April 20th: Nicholas goes for his three month blood test at the hospital. He gained about 2 pounds and grew about 1/2 inch. Overall his body is getting more flexible and he is feeling more confidence in himslef in running around and not thinking to much of his next move. Physical Therapy is getting more intense in both at school and at support by design. The one thing that Nicholas is getting better at, its his stamina and endurance. He can run/walk a good distance with losing his composure. During the spring break week, he spent his time visiting family and going to therapy.
March 1st-March 31st: Happy Birthday Nicholas. You are 9yrs old. Mommy and daddy surprised Nicholas by taking him to Lion King on Broadway and dinner after the show. He was excited and enjoy the show and especially sang all the songs he knows from the Lion King. PS 11 started a boy's chior that Nicholas became a member that will br practicing after the three hours of studying for the state test on Saturday. The one talent that Nicholas has other than his love of building robotronics, he loves to sign. He likes to sign the 80/90 classics during the house when mommy and daddy are listening and dancing. The biggest honor of the month, was when Nicholas was honored and became a honorable knight at St. Baldrick's Foundation Shave For A Cause Event. The event was to raise money for Childhood Cancer, as Nicholas and another kid, cut hair to donate to kids battling that deadly disease we call Childhood Cancer. Nicholas cut the hair of man and the event raised $25,000. We Say Thank You to the Ryan Family & St Baldrick's for the great event and honoring Nicholas.
February 1st-February 28: Quiet month as Nicholas continues to get ready for the state test in April after his Spring Break. He has gotten a little taller and running more with more control of his body and not getting off track. He started a therapy is which he just works with hand motion and kicking. Sometimes when he walks he just does not move his left arm, but now the therapy is working on motion, strength and coordination.
January 1st-January 31st: Happy New Year. Nicholas brought in the new year full of spirit, love and happiness. During his Christmas brwak, he spent time with family and friends. This was the first Christmas and New Year, the family decided to stay home and relax instead of traveling. Once school started, he was back getting ready for the state test, by going to Saturday Academy. PS 11 is getting the students ready and every day Nicholas' parents can see the difference how he is approaching the test. One weekend Nicholas was pplaying basketball with the Men's Basketball team from St. Francis College of New York. he shot, ran and improved of using the back board of getting his shot in. The one big improvement is his physical therapy both in and out of school. Lima continues to work him on stamina and improving his flexibility at Support By Design and Peter from NYC DOE is working more on mobility and having him use his whole body of creating more sports like games to make him use his whole body. Lima has ordered Nicholas to wear night braces to make the legs stronger and straighter.
Sunday, February 09, 2014
December 1st-December 31st: This is the first year since 2008 that Nicholas did not have his annual Nicholas Modestin Toy Drive for his friends battling luekemia at The Brooklyn Hospital Pediatrci Oncology Departemnt. This year daddy ran the NYC Marathon to raise money for the Leukemia & Lymphoma Society of NYC. After Christmas a family that knows Nicholas from Queen of All Saints Church, donated several toys to Nicholas to give to the hospital. Nicholas' body had to slow down as he was going to PT Therapy five days a week as his PT Therapist at school came back. During the Christmas Break, he just rested his body and played with his new toys. One gift that Santa dropped off the was a set of engibe running Lego toys that Nicholas built with the help of his father. The days of rest for Nicholas was good for his body and his mind.
November 1st-November 30th: The month started with daddy running the NYC Marathon which Nicholas spent the day with mommy, cousins and aunts cheering on daddy. Daddy ran a solid race until mile 18 in which his left leg started to act up and slowed him down. He did finish as ran tha last eight miles in pain. Great day to see my daddy finish the NYC Marathon in honor of me and my friends battling luekemia. He raise over $4800 for a great cause and to continue fighting to find a cure for childhood cancer. Nicholas' PT Therapist at school missed the month of November recovering from a car crash, during that time he was working hard with his PT Therapist at Support By Design, HSS and the electro therapy at home. Nicholas PT is happy with the continuing hard work of Nicholas, that his left is not dragging and he is walking stronger in a straight up position. Now we just have to slow him down from walking side to side. Overall he is taking little steps, but getting stronger and realizing what he has to do.
October 1st-October 31st: Nicholas' thrid grade teacher McCoy is working Nicholas to a point that he is improving in various ways of understanding what he is learning. The math work of multiplication and division of word problems is working him hard on a daily basis, but he understanding on how to break down the problem and show work. PS 11 started a Saturday Academy for the students who want the extra help to get ready for the state test in April. Nicholas is going to class 9am-12pm on Saturday's and is enjoying his time getting prepared for the test. Phyiscal therapy going strong and his body is becoming more flexible and he is actually running a little faster with better balnce on his body. Daddy continues to get ready for the NYC Marathon on November 2nd. Nicholas had his three month check up and he grew a 1/2 inch and gained 1 pound up to 99. He also got a flu shot that will take care during the winter flu season.
September 1st-September 30th: Summer is over and school starts as Nicholas enters 3rd Grade. His teacher is Ms. McCoy and she is a solid hard work teacher who will continue like every teacher Nicholas has had at PS 11 to get the best out of him and keep up his solid work of doing classwork in and out of class. Mixup in the insurance company as they can't or will not cover the electro therapy machine for us. Now we have to figure out how to get this machine, so Nicholas can get the treatment of building back up his muscles and bones in his left leg. Even though the legs is a little stronger, everything willhelp to continue for him to get back to 100%. With the marathon two months away, daddy's training has increase and you can him more focus and ready to run 26.2 miles in honor of Nicholas and the all the kids around the world battling chilhood cancer.
August 1st-August 31st: Fun month for with summer camp and enjoying his time with his friends at camp. The camp counselors have given Nicholas a great workout in the swimming pool that has given him more flexibility. Daddy is going strong training for the New York City Marathon. He runs during the week and on Saturday's he has a long for 10-18 miles. During his off days from camp, Nicholas goes to physical therapy and Support By design in the afternoon and in the morning he starts off his day at Hospital of Special Surgery doing electro therapy and intense workout.
June 1st-July 31st: I want to aplogize for putting two months together. June was interesting month for Nicholas. First he finished the 2013-2014 school year strong with solid grades in Ms. Frazier's class. Ms. Frazier was a hard working straight to the point and no games teacher who brought out the best in Nichoals found his strength and weakness that wil help improve in certain areas going into 3rd grade and the state test. The PT department at the NYC Board of Education gave the family the run around. After reassigning thr first PT therapist, they gave us a solid therapist in Mr. Peter and now going into 3rd grade, Nicholas is going to have a new therapist. Funny how mommy and daddy do not know what is going on from the supervisor and getting most of the answers from the therapist and Nicholas' Parra who talks to the therapist. When the 2014-2015 school year starts in September, mommy and daddy have every right to be upset a little, because they never got a final report from his PT/OT therapist to see what Nicholas is doing and what he needs to improve for the upcoming school year. Everybody jump all over Nicholas' father for speaking his voice on Nicholas, but now we just wait for the next meeting about Nicholas and take it from there. Once school was over, Nicholas was bound for Sunrise Day Camp three days during the week and other two days Physical Therapy. Monday he went to Support By Design and on Wednesday double PT. In the morning at Hospital For Special Sugery and in the afternoon, Support By Design. HSS has more exercise machine for Nicholas to work on the early morning workout is great for hime. Nicholas also started getting electrotherapy at HSS to start building up the weak muscles in his leg . Every day is a step for a full recovery for Nicholas. He is strong and is a fighter when it comes to his PT sessions. The traing and the hard work preparing the New York City Marathon November 2nd is paying off bifg for daddy. He is losing weight and gaining lots of confidence of making his promise come true to Nicholas to compete and finish the NYC Marathon. The long runs on Saturday's 10-15 miles is encouraging as Nicholas reminds his daddy every Friday night to run strong and run the extra miles. The one thing that keeps daddy inspired to run and complete this race is Nicholas fun loving attitude and enjoying life as he always tells daddy, when are you running once I see him after coming home from camp. I thought ate first to get me out the house, but it was all encouragement.
May 1st-May 31st: The month of May was full of appointments and First Communions to attend and to be part of for Nicholas. The second opinion appointment was at Hospital of Special Surgery witha Dr. Scher and his staff. The day was long at the hospital, but after the full check up, X-ray and talking with the doctors and therapist, mommy and daddy came away with questions and answers that they would like to find out about Nicholas cancer and during his treatment. His bones and muscles are strong, his waist is intact with the good bones, but his gait is unbalanced, drop food on his left foot, left side his weak and his brain still controls his body. The doctor wants the mommy to ask the oncologist and neurologist to see if Nicholas had a stroke or a mini stroke during his cancer treatment or did the chemo slip it into his brain to cause the swelling. He also wants he to find out what is the name of Nicholas sickness of his brain affecting his left side of his body. Nicholas body was getting measured by the doctor and two physical therapist to see how far his body can be stretched out and the movements of his left leg and foor that was seen as weak and needs more PT to strengthen up the bones to buold Nicholas muscles and strength back that he needs to recover. After the full examination, Nicholas was fitted for his new brace that will be only be worn on his left foot to help walk straight and reduce the limp. The doctor will like to see Nicholas in six months and the physical therapist would like to work with Nicholas. Now mommy will call the insurance company and see how much therapy Nicholas can get for a full year or a month. The next week after the second opinion came the First Communion of Nicholas' cousin Manny on Saturday in upstate New York and Sunday was Nicholas' First Communion. The Modestin family made to trip to celebrate the special day with Manny and when the First Communion was over and the mass was over, daddy had to return to the city to work and mommy and monny and Nicholas stayed back to eat and have fun with the family. Sunday came and is was Nicholas' turn for his First Communion. Both sides of the families came, mommy side and daddy side. Nicholas looked stunning is his suit and walkin up to get his bread and the blood of God. The week before during practice the priest asked the parents how Nicholas would take his wine and daddy said a sip. On his first sip of wine after taking the bread, Nicholas took a big gulp of wine, that when he came back to his seat with mommy and daddy he said his chest fely a sting as the wine went down his tummy. After mass, the family went to eat at Rustik Resturant and the food was delicious as our landlord and owner of Rustik treated us with open arms and delicious food. At the end of the month, Nicholas went back to HSS and picked up his new long foot brace and felt no pain after two days of walking with it.
April 1st-April 30th: Nicholas is getting ready for his First Communion next month, spent the first Saturday of the month in mass with daddy, mommy and his entire class of First Communion practicing for the specila day, getting his first taste of going to confession and learning what he has to know and what to do on the day when he takes the bread and drinks the blood of god. Physical Therapy was delayed the majority of teh month as Nicholas' therapist from the DOE got in a car accident and sustained major injuries, was out the whole month. During that time he missed, Nicholas only had physical therapist outside at Support By Design with Lima. She has given Nicholas so tough hard working workout that has made him more flexible and more reliable of doing the exercise the right way. Lima spoke to daddy and mommy about getting Nicholas a second opinion of his leg and see if his right side of his brain is still controlling the left side of his body and to see which is right brace for his left leg to improve his walking and running. The therapy that Nicholas missed at PS 11, will be recovred during the summer as the DOE PT supervisor gave us the make up to be done in the summer. School is going solid as Nicholas is improving how to express himself in writing better of what he has read in class when he comes home form school. He is enjoying math and science. Daddy continues to train for the Marathon and started raising funds to reach his goal of $6000 and $3900 to run in Novemeber.
March 1st-March 31st: HAPPY BIRTHDAY NICHOLAS 8 YEARS OLD. Relaxing month for Nicholas. He celebrated his birthday at school with his classmates. Mommy and daddy suprised the class with cup cakes and a ice cream cake. Nicholas had a blast with his classmates celebrating his birthday. The weekend of his birthday family came down from upstate New York to spend time with Nicholas. Daddy had to go to work and mommy was left alone to attend the family and have fun. When the day was over Nicholas was tired from playing with every toy possible in his room, building every car and train tracks that he found new ways to build it. Nicholas told mommy and daddy that when he grows up he wants to be a engineer on designing bridges and tunnels. Physical therapy is going good and everyday he is getting stronger in both mind and body. Daddy is starting to do some research to get Nicholas a second opinion of his legs with a Pediatric Orthopedic to see what we have to do to improve the weakness on the left side of his body and especially in his left leg and to see of the nerves from the brain still has a affect on the nerves in his left side. Walking to school has done a solid job on Nicholas of picking up his pace and increasing his endurance. Before he wil be tired when he got to school, but now he feels more fresh. Daddy continues to train and run for the New York City Marathon in November. With Nicholas making sure that his father runs, daddy runs once he comes home from work and in the morning on the weekends. Religion school is going good as Nicholas is getting ready for his First Communion. His teacher is teaching everything that he needs to know and one Sunday, they covered Stations of The Cross.
February 1st-February 28th: Relaxing month for Nicholas. The one problem that Nicholas had to take care during his winter break from school was a visit to the hospital to see what was going on with the stomach pains he is getting off on on. First Nicholas had to drink six glasses of water to have his stomach full of water before having his sonagram. The sonagram gave Nicholas a chance to look inside his tummy and see what was causing the pain. After the test, Nicholas has a little gallstone that is either going to go away by medication or surgery. When the testing was done, daddy went to talk to Nicholas' oncologist and she explained about the gallstone what can happen. Nicholas enjoyed his week off, other that his visit to the hospital, he did some physical therapy and spent sometime upstate on his cousin birthday fiesta. The fiasco continues with the NYC DOE as the second marking period came and went and Nicholas did not get a progress report report. Witha change of PT therapist, the old therapist who got replaced on January 6th, did not give Nicholas a evaluation and or a progress report. This time around daddy has kept his silence instead of saying something and just waiting to hear, why Nicholas' parent did not get a progress report. Eye therapy is going good as Nicholas vision is improving left to right. The second marking period report for Nicholas was solid which left mommy and daddy full of smiles.
January 1st-January 31st: Happy New Year!!! The year started off on a beautiful note as the family went to New Year's mass and had dinner before the ball dropped in Times Square. Nicholas brought light of looking for a positive year and joy into the New Year. The first day of school took the joy out of the New Year when the DOE reassigned Nicholas' physical therapist with no explination to the change. Mommy and daddy were not to happy with the DOE decision and having the PT therapist leave without leaving a report on what she did with Nicholas and to top it off, PS 11 principal sent a official letter head of how the PT therapist was fear of her life after the mediation meeting in which Nicholas' father stayed away from the therapist and still got thrown under the table. So now we have a new PT therapist, no progress report on what the old therapist did and have dadd's name on the bad side at PS 11. Positive, stay strong and keep looking up for the best is one thing daddy has kept the family together during Nicholas rehab of getting back to a 100%. The new therapist engaged with mommy and daddy and right away realized why Nicholas was not wearing braces and was walking flat footed. Nicholas was missing his braces, because his outside therapist at Support By Design ordered that Nicholas to put back into wearing braces daily. Nicholas is happy with the change since he told mommy that he is doing different challenges during his PT workouts. Nicholas had a another check up and the doctor saw both reports of the PT therapist from the DOE and reading the difference, she wondered why Nicholas PT time was cut down in the first place. Nicholas was back in center stage at Queen of All Saints children chior as he sang on Three Kings day. This time around the children did most of the signing and a beautiful version of Alleluia that the father stopped paused for a minute for the kids to get a round of applause. Nichola slikes to sign and daddy and mommy hopes that QAS can make up the chior and have the kids sing more during the year. Nicholas was honored by a cancer foundation for his hard work and ambition of beating cancer and now determined of running full speed. Another foundation invited Nicholas to play basketball with St. Francis (NY) & Mt. St Vincent Men's College basketball team. Nicholas had fun and this year he was dribbling the ball better and has pick up his speed in running and was happy to see his fellow cancer friends who beat leukemia. Daddy is continuing getting in shape to run the 2014 NYC Marathon and just wishes the cold weather will just go away. Spring please come, so Nicholas can go outside and kick the soccer ball around. Nicholas was back in the hospital for his three month check up and he came away with a clean bill of health. He gained couple pounds which moved him up to 95 pounds and added a inch to 55 inches. The oncologist Dr. Sedrak was happy to see how his body is moving better and his balance is getting stronger and work is still have to put in more to get more strength into the left foot of Nicholas. Ms. Frazier continues to make Nicholas a solid student in and out of class with the work he is doing for class and homework. He is understanding more on how to catagorized the main subject in the book that he is reading and realizing finding evidence during his homework is helping him more of understanding the main character.
Tuesday, February 05, 2013
December 1st-December 31st: Things went from to getting out of hand with the case of Nicholas vs NYC DOE physical therapy department. After Nicholas' father asked for a evaluation from the physical therapist and did not get one, he asked the PT supervisor and he could not get her to get one from the therapist. With no evaluation letter, Nicholas' therapy finally showe his goals as yed or no. The big blindside out of the blue moon came from the principal at PS11. After speaking with Nicholas' father and having a meeting with Nicholas physical therapist and the therapist supervisor, at the end of the day, Nicholas father was thrown under the bus and run over twice. The physical therapist accused of not feeling safe around Nicholas' father, but still wants to work with Nicholas. Funny how since the mediation meeting back on October 31st, Nicholas' father has kept his distance and not said nothing to the therapist, but for her to do this accusation leaves Nicholas' father name looking bad around PS11. The three years Nicholas has beign a student at PS 11, his father has never had a problems with non his teachers. Nicholas' mother was not happy with all what is going on. During alll the meetings and making sure the physical therapist feels safe, nobody decided to give Nicholas' mother a update about how Nicholas' therapy is going on. The DOE focused of making sure to make things hard on Nicholas' father, but nobody picked up the phone or speak to Nicholas' mother before or after school. With all with the therapys problems with the DOE, therapy outside was going strong and Nicholas is improving. Both therapist are doing a good job, but when a parents fights to get something back for a child during a meeting and sometimes things get emotional and people will think its attacking, but it is more defending what is right for your child. Nicholas' outside therapist, recommended that Nicholas to start wearing new foot braces to put some arc into his foot. He is walking flat footed and she wants to put the strength back into his left foot.During the month of December the Nicholas Modestin Toy Drive collected over 200 toys and donation from local professional sports teams for the Brooklyn Hospital Cenbter Pediatric Oncology/Hematology Unit Party and for kids in the hospital around the Christmas Holidays. Nicholas could not attend the party, his grandmother had a pacemaker operation. With the help of Father Ceriello and the special and caring people and parishioners at Queen of All Saints Roman Catholic Church in Brooklyn, Queen of All Saints Catholic School, NFL New York Giants, NFL New York Jets, NHL New York Rangers, Tom Coughlin/Jay Fund, Brooklyn Borough President Marty Markowitz and family and friends for all the caring, support and overall making the 6th Annual Nicholas Modestin Toy Drive of having aanother great year and making lots of kids smile full of joy and happiness. THANK YOU. Christmas and Santa brought lots of joy to Nicholas. He got most of toys from his Chrtsomas list and was happy to spend Christmas with his cousins upstate New York on Christmas Day. Christmas Eve Nicholas sang with the youth chior during the Children Christmas Eve mass at Queen of All Saints. The perfomance for the kids was outstanding and they will be singing next for Three Kings Day. Nicholas' father made it official by signing up with Team in Training and will be running the New York City Marathon 26.2 2 miles on November 2, 2014. He has been training and everyday he is running longer, but for now he is running about 2 or 3 miles a day.
November 1st-November 30th: After finishing off the month of October in case of Nicholas vs NYC DOE, the family thought things will die down and we will just focus on Nicholas physical therapy and getting back 100%. Things came up back up, because daddy asked for more details in Nicholas' progress report, he did not get a answer in two weeks after asking the Physical Therapist for more information. The only information mommy and daddy know what Nicholas is doing every Monday and Wednesday is from Nicholas himself. After not getting no answer from the school physical therapist, daddy wrote a letter to the therapist supervisor. With no answer yet on the details of Nicholas' therapy at school, daddy gets a call from the school principal on how the therapist and supervisor are feeling uncomfortable around daddy. Daddy was a little emotional during the mediation meeting and was defending Nicholas, but now daddy is rude, loud and now getting labeled as the angry black man by the therapist and supervisor. Since the meeting on October 31st, who ever took Nicholas in the morning for therapy, dropped him off on time and went on there business. Now to hear this from the principal just open up a can of worms. Daddy will now see if the physical therapist and the supervisor broke any confidential laws that occured in the mediation meeting and wait to see how the meeting was between the principal and the therapist and the supervisor. Funny how after speaking to the principal, the supervisor sends daddy a email to let hom know if any concerns about Nicholas to call or send a email. Good news happen when you wait. After wasting and missing two of physocal therapy poutside of school, Nicholas was back with Lima and back in the groove. Right away Lima picked up that Nicholas is walking flat footed with a no arc in his foot and now needs a brace to put some arc in his foot to make him walk better. Thank god the great people at Support By Design found us two days for Nicholas to get his 2x45 workouts. The best news of the month was on mommy's birthday. The parent teacher conference with Nicholas' second grade teacher Ms. Frazier brought smiles to mommy on her special day. Ms. Frazier spoke highly of Nicholas and how he doing a solid job inside and outside of the classroom and brought home a solid report card. The biggest suprise for Nicholas and a early Christmas present came from mommy and Santa. After spending a beautiful Thanksgiving upstate with his Grandma and mommy's family, the family drove back to Brooklyn the same day. The next day Black Friday, daddy went to work, while mommy helped Nicholas with some home and have not think of his surprise until it was time to meet daddy at Madison Square Garden Theatre. The big surprise was the Fresh Beat Band and Nicholas was excited to see one of his favorite bands in person. He sang, danced and jump up and down. Just watching Nicholas beaming of joy and his face full of happiness made the day special and mommy was just beside herself. Daddy started to train for the 2014 New York City marathon. daddy is running two or three miles a day and getting back in shape before he joins Team in Training. Nicholas started practicing with the church choir for the big show at the 5pm Christmas Eve mass at Queen of All Saints. They're going to sing five songs. Nicholas was scheduled to have a MRI on his brain, but to insurance conflicts, he would not be able to take the MRI. Now mommy and daddy have to go back to the neurologist and see what he can do to get the much needed MRI. The 6th Annual Nicholas Toy Drive is doing great and picking up the pace of collecting toys for the kids at the The Brooklyn Hospital Center Pediatric Oncology Unit. The great people and parishioners at Queen of All Saints is doing a spectacular job of donating gifts. With a week left before collecting the last set of toys, the toy drive is super.
October 16th-October 31st: The month of October finished off on a beautiful note as mommy and daddy fought and won the case of Nicholas vs NYC DOE to get Nicholas' PT session back. After researching and getting advice from educational lawyers and advocates who deal with IEP and the NYC educational system the hard work paid off. The advocate that went into the Mediation Meeting at PS 11 on Halloween did a solid job of finding loop holes in Nicholas' IEP that was in favor of Nicholas and a outstanding job representing the Modestin Family. The advocate gave mommy and daddy all the room to talk during the meeting so the mediators could hear the side from the parents and stepped in when she had to explain the technical side of the IEP and were the PT went wrong writing her report. The first one was moving the mandate meeting from November 26th to October 7th and other loop holes were found that was illegal. The meeting has its up and down on both sides of the table. Daddy had to take a break when he got frustrated and took a timeout to catch his thoughts. After the therapist said Nicholas was a normal kid after scoring a 94 out of a 100 on a school base assessment. Once back in the room daddy was warned for his tone and just sat back listen to the PT and the PT supervisor and spoke his points. The big moment came when mommy spoke from the heart and got her point through that she will be the first one to tell the PT that if Nicholas was 100% he will not need and make sure to get the kid that needs the PT. Right Nicholas needs his PT to get the gait off hos body and his left side of his body strong and healthy. After mommy spoke, the DOE side took a break came back with a answer. Going into the meeting Nicholas' PT session was cut 4x45 to 2x30 and just school based. with no RSA packet for outside therapy. After going back and forth and watching every speak the important points and looking for the best of Nicholas, the Mediators came to a conclusion at the end of the meeting after the DOE made a decision. The DOE split Nicholas PT time. Mommy and daddy knew coming into the mediation that Nicholas 2x30 in the school was going to stay, because of the school law once a school has a therapist in the building. Nicholas' new PT session will be 2x30 in school which will be Monday's and Wednesday's 815am-845amd and 2x45 at Support by Design. This was a big win for the Modestin and shows that when you see that your son is getting cheated in therapy time, fight till the end. Couple days before the meeting, Nicholas had a appointment with the neurologist. Nicholas was checked out and the neurologist saw the left side still weak and a little on the right side. After the check up, the doctor would like to give Nicholas another MRI on the brain to see if the brain is clean and no black spots. Since Nicholas' brain got swelled up during the early part of the chemotherapy treatment, that affected his left side of his body, the neurologist wants to see if the brain is back to the normal side. The upcoming months he will get a MRI. Nicholas is a fighter that continues to beat and jump over the obstacles that he has faced. The glasses finally came in and Nicholas wil be seeing better from a distant and at night. There was some fun, games and running around between all the meetings and appointments as Nicholas spent a day in a cancer event raising founds for other kids battling cancer and helping out families. Nicholas, daddy and mommy ran and walked a 1.5 miles around a park. Nicholas did most of the running and felt good after run and walk. Once he got to the fnish line, he took a break and went to the obstacle course. The tires gave him some problems, but the highlight was watching Nicholas jump to the ground and crawl and dig in the mud under the railing and fnished off with a big run crossing the finish line. Great day meeting new families, Nicholas meeting new friends which a fun loving kid like him is easy to get along with and happy to see the social workers who helped the Modestin Family during difficult times at the early stages of Nicholas' battle with leukemia. Thank you to the lawyers the deal with educational cases, para legals, advocates, leukemia & lymphoma NYC society, the advocate the respresented the Modestin Family and the oncologist, neurologist and therapist that wrote letters in favor to let Nicholas get back the time he needs to get back to the 100%. Solid job by mommy for speaking from the heart and daddy doing his research and working hard and listening to all the positive advice and bringing it to the table for the Mediation.
October 1st-October 15th: The new physical therapist at PS 11 after four sessions with Nicholas, came to the conclusion that Nicholas does not need no more PT outside of the school and dropped his session from 4x45 minutes to 2x30 minutes. One session will be a 1-on-1 session and the other will be in a group session during the IEP review to define if his PT seesion should be cut down or stay the same as it was for the last three years. During the meeting all rthe NYC Board of Education reps wre just saying that Nicholas is ready by school base terms and did not think about the medical side. That means anything after school, is on mommy and daddy to find a way to get Nicholas his PT or a exercise plan. The great physical therapist at Support By Design who got Nicholas were he is now will have to wait until the NYC BOE decision of getting therapy outside of school. This hurts Nicholas. All they kept saying was that Nicholas was closer to school base terms. Which means walk with his classmates at all times to another class, to lunch, to gym and leaving school instead of leaving a couple minutes early, he will run on the outer circle with classmates during gym instead of the inner circle to improving his speed. The other one was improve his walking down the stairs by himself instead of having help from his Paraprofessional. Daddy represented Nicholas and once he heard what the NYC BOE wanted, he just did not sign any paper and will take this case to a mediation to get the minutes back. The reps of the NYC BOE did not even take the oncologist letter that Nicholas PT session should not be cut, because it would be crucial to his recovery of getting back 100%. With all the going back and forth, Nicholas is missing quality time of recovery in which he now has 2x30 every morning before class from 815am-to-845am, because mommy does not want the PT taking Nicholas out of class during school tome. The mediation meeting is on Halloween October 31st at 10am. Nicholas was back the oncologist to get his three month check up. He gained a pound in which he is now at 92 pounds and is 52 inches tall, which is 4'4. The next appointment for Nicholas is January 17th, 2014. Mommy has ask the oncologist for a sonogram of his stomach to see if it's clean from the time the doctor's found a tumor while Nicholas was in the hospital for month during the early stages of his chemotherapy treatment. The hospital staff was happy to see Nicholas growing and getting better both mentally and physically. Good news for the Nicholas Modestin Toy Drive. Several organizations donated gift cards to the hospital to buy gifts for the Toy Drive. The Toy Drive kicked off its Toy Drive at Nicholas church. Queen of All Saints Roman Catholic Church is hosting the Toy Drive from October 6th-to-December 1st. Nicholas also paid a visit to the orthapedic and came away with good results. The orthapedic saw a good change in Nicholas and a recovery that if he continues with hard work and intense physical therapy, he get back the strength that he lost. School is going good and Nicholas is doing a solid job in Ms. Frazier's class. With the help of mother nature giving Brooklyn good weather, Nicholas is walking more to school and to mass on weekends that is helping to improve his stamina and endurance of walking a long distance. The one thing Nicholas must continue to learn is to walk and don't drag his left foot when he feeling tired. The best is to stop and catch his breath and start walking again. Everyday Nicholas continues to get stronger and putting in the determination on the road to a full recovery.
September 1st-September 30th: With a extra week before schools started, Nicholas had a few things to do before entering 2nd grade. Labor Day weekend Nicholas spent time with family and friends having a blast and giving mommy and daddy some rest time. No physical therapy so Nicholas ran around the track and playeed soccer with daddy. Daddy saw improvement of him kicking the ball and using both legs to move the ball around. The goal is continue having Nicholas be more mobile and losing weight. The month started off with Nicholas on WCBS Channel 2 New York to kickoff September Childhood Cancer Month that he was invited by the Francesco Loccisano Memorial Foundation. Always great to see the Loccisano Family that helped the Modestin's during tough times during Nicholas early battle to beat his luekemia. Nicholas met some new friends that beat cancer and are now going through the tough fight to beat out the deadly disease. The next day the Modestin family took a trip to the Bronx Zoo. Nicholas had a blast checking out all the animals and he even passed a zebra and giraffe test that was given to kids by the zoo officials. Mommy and daddy were happy watching Nicholas pace himself walking around the zoo and not getting tired. Once he got home mommy massaged his legs to relax his body from a long day of walking. The next couple days before school, Nicholas read some books, did math and wrote to be prepared for Ms. Frazier, his second grade teacher. During daddy's summer freelance job, he got a free VIP pass for karate classes. Daddy and mommy decided to take Nicholas to the four free classes to see if he liks it. Even though he can't lift up his legs to kick, you could see during the classes that Nicholas gave a 100% and everyday, his legs rose more and more. The one bad thing you could see the left side of the body did not give Nicholas a strong stance duing his fighting position that he was knocked down easy by the opponent. That is another goal for mommy, daddy and the therapist is to work hard around the clock to build back up the left side of his body. Once the last class is over during the first week in October, mommy and daddy will decide to send Nicholas to karate o swimming o a fitness place to lose weight and loosen up the body to make stronger and mobile. SCHOOL STARTS. Nicholas loves school and he was excited to walk to school and having nice days for the first three weeks of school, he walked to and from school. Ms. Fraxier is a very structure and discipline teacher that is going to continue getting the best out of Nicholas. The Board of Education did something that was not professional. PS 11 finally got a physical therapist in the school. The school did not tell or call the Modestin family that PS 11 was getting a physical therapist, the therapist did not call and to top it off, the physical therapist took Nicholas out of class for the first two sessions without the parents okay and not even asking Ms. Frazier. Nicholas came home and told mommy how he was taken out of class. After hearing what the PT did with Nicholas, daddy took a day off to find what is going on and why nobody decided to let the family know and why was Nicholas taking out of class. For all the years Nicholas has been going to therapy, mommy and daddy always told PS 11 and the therapist that Nicholas should not be taken out of class without the parents permission. After talking to the officials at the PS 11, mommy and daddy decided that Nicholas will have his PT session Monday and Wednesday from 8am-to-845am and go straight to class. Also Nicholas' IEP meeting will be held on Monday October 7th. Let us hope this year the BOE does not try to cut something back or try something now that they have a PT in the school we want to cut something or a session. So daddy who will going to the meeting will be prepared for the NYC Board of Education. The Sunday after school started, Sunday School at Queens of All Saints started and Nicholas is getting ready to take his first communion next year in May. The 6th Annual Nicholas Modestin Toy Drive for the Brooklyn Hospital Center Pediatric Oncology/Hematology Unit has started. Nicholas sent out the letters to organizations around the country and this year, Queen of All Saints Roman Catholic Church will be hosting the Toy Drive from mid October till December 1st right before the hospital christmas party for the kids. Thanks Father Ceriello for letting Nicholas host this great event that brings joy and happiness to kids at TBHC. The one thing that Nicholas enjoyed in September, was the Light at Night Walk sponsored by the Leukemia and Lymphoma Society of New York. Nicholas walked about 20-to-25 blocks walking south of 15th street on the west side highway walkaway. He got tired a little and sat down. The family took pictures, spent time with friends, Nicjholas got his balloon that lights up at night and sowed off mommy and daddy his survivor t-shirt that was giving to him by the great people of LLS of New York City. This event was special and seeing the big turnout, we must continue researching to find a cure to kill childhood cancer, cancer period and medications to continue saving lives.
August 1st-August 31st: August was a healthy and trong month for Nicholas. The only bad note for the month is that Nicholas will be wearing glasses just to read from a distance. For the last several weeks in July and August as he was watching television or reading from a distance, he started squitting and squitting, mommy picked it up and decided right away to get a total pediatric eye examination. As the letters got smaller he started to squint and the optomologist knew the problem on the spot. So with school starting on the 9th of September, Nicholas will have to sit in front of the class to read the board, until his glasses comes in. First physical therapy finished with Diony and for the classes, Nicholas had, Diony gave him a solid workout that saw him continue to progress and continue to the road to bbe back 100%. Summer Cap finished on a high note as Nicholas made a big splash in the swimming pool with his instructor. He came home talking big how he went uner water for about a minute and kicked by himself with the help of the board. Going to camp Nicholas lost a good chunk of weight and increase his speed in running. His left leg still drags, but he is running a longer distance. Once camp was daddy started working out with Nicholas at a local field that had a track and was empty in the morning. Once daddy finished off his summer freelance job and with two and half weeks left for school, the workouts were in the morning, because daddy had to work at night. The workout for Nicholas was to put strength in his legs and get him to start learning how to play soccer again. Nicholas did the basic soccer drills, by starting out kicking the bals right left, right left, walking first and picking up a running pace that made him feel comfortable of controlling the ball. Then he went into the kick and run which that he got a chance to shoot into the net. After the kicking, he will finish of with kick, pass and stop the ball with daddy twice up and down the fiedl. To finish off the workout he would run and walk three laps with daddy who is starting his training to run the New York City Marathon in 2014. The one thing that made Nicholas's daddy was the endurance and stamina of Nicholas around the track. He wasn't tired, but you could see his left legs that when he lost somne strength he will drag it. After picking up the lost strength in the leg, daddy called one of Nicholas' aunt to see if a family friend is still practicing chyropractor to get a second opinon and to see how Nicholas'ds bones around his waist down and functioning and holding up. Mommy came up with a good suggestion of trying out kick boxing for Nicholas and just focusing on gathering back and building up the power in his legs. During daddy's summer job, one of co workers was happy to help out Nicholas and got all the information on a local fitness center that helps and trains people with a disability to regain what they lost. Starting in early September, Nicholas is going to have a session so the trainer can see what is the problem and we can take it from there. The family took a trip to the movies to see Planes which was great. No camp, no physical therapy during the week, Nicholas started getting for 2nd grade by reading more books and working on math, reading and answering questions and writing. Going into 2nd grade, Nicholas will have Ms. Frazier. She is one of the top teacher's at PS 11 that is very structure and discipline that will get Nicholas to continue working hard in/out the classroom. The one big part that stood out for Nicholas was a day with his friends at Mets Kids Day sponsored by the Leukemia & Lymphoma Society of NYC at CitiField. This year Nicholas wanted to run the bases and play catch with the players without wearing his braces and he did a great job without the braces. He ran the bases with such speed that he ran it twice, because the first time he missed touching 2nd base. After the bases he took a break and helped the grounds keepers fix the field for the game at night. With mommy and daddy in the stands, Nicholas hit off the tee and there you could see if he had more power in his left, he could hit the ball farther. He still hit the ball far and was happy getting tips from one of the Mets hitting coaches. He finished off the day playing catch with Mets pitcher Dillion Gee. When the day was over, mommy gave his legs a massage and he went to bed. He also took a weekend trip to upstate New York to spend time with his grandmother and cousins, went over to Queens to play video games and run around with his cousin Christiaan and finally visiting his aunt Dahlia and cousin Jasmine.
July 1st-July 31st: School is over and Nicholas knows that three days of summer camp, two days of therapy and Tuesday night when daddy if off from work is movie night. One of Nicholas' aunt back home in Panama, made a late donation to Team Nicholas and Sunrise Day Camp. The family made a donation of a $1000 that brought the total of $1615 that Team Nicholas raised for Sunrise Day Camp. Nicholas was so happy to head to Summer Camp and this year he promised mommy and daddy that he going to learn more to swim and float by himself and stay under water for more than 20 seconds. For everyday he came off the bus, he gave mommy and daddy on his swimming lesson on how he is kicking more and floating better by using his legs more and stayiong under water. Nicholas asked daddy if he could get a mask and snorkle and daddy told him, before camp is over, you will learn to use a mask and snorkle froma camp counselor. With the swimming and running in camp, along with the physical therapy, Nicholas is losing weight and you can see his running speed is getting stronger and faster with much practice and hard work. Last year around this time, Nicholas was waiting to get his mediport out of his body and was careful how he was swimming, even though he was swimming and in good handss of his swimming teacher. Now today he loves the water, except on the days when the water is to cold to swim. Diony has Nicholas for the summer PT and for two days he has him working out for 90 minutes. The one good thing about the 90 minute workout different from the 45 minute therapy, he gets to stretch out a little more and work on his tight points of his body. Sometimes Diony gets the best of Nicholas during stretch out time, that he sometimes tries to get out of it when he feels the pain. This time pain is good, because the stretching is needed to make his body more flexible annd mobile moving around. Mommy and daddy have made one goal that Nicholas will keep his weight down and continue his hard workout away from therapy and when camp is over. He has done a solid job of picking up his speed and feet when he is running. Daddy will be taking out to the field to kick a soccer ball around and shoot baskets. Nicholas went to the hospital for a check up and he came away looking good. He did not gain no weight and is still at 91 pounds and grew a 1/2 inch to 51/5 inches. The next appointment will be in October. July was also a month were Nicholas had to choose between Mexico and Panama soccer team during the Gold Cup, as both teams played each other twice, which Panama came away with victories. When mommy asked Nicholas who are you going for, Nicholas said, let me think about it and I will come back to you. His answer left daddy laughing and later on in the day before the game was over, he told his grandparents, uncles and aunts the same thing and added, may the best team win and I will always love my mommy and daddy. His aunt Jonelle came over to spend a day with him and the family. She brought over some late birthday gifts that included another train set and lego toys in whcih he completed and builts right awat. The family went to see the movie Turbo, ate a nice dinner and finished off the night playing games and talking. Nicholas was happy to see his aungt Jonelle.
June 1st-June 30th: Now that Ms. Gilliam is gone for the rest of the school year, Ms. Jackson continues the discipline and hard work of the students in class. For the final month, Nicholas danced away in a show that he was shaking to every beat and stepping the right way that made him feel great of his dance moves in front of trhe school. The class read two more books and had several test in math in which Nicholas came away with flying colors. The class spent a day at the playground and Nicholas was happy to spend a day with his friends running and splashing themselves with the sprinkler. Between school and physical therapy, there was a couple days that Nicholas' body was just tired that he skipped therapy and went straight to bed after eating dinner once he got home from school. Mommy and daddy just woke him up to finish up his reading and math homework and he went right back to bed. Diony was on vacation so Nicholas had two weeks off from PT, but he still had Lima who continues to work him hard and stretch out the tight points in his body that sometimes pains him. Nicholas is getting a better understanding of his body while stretching out with Diony and Lima. The last day of school before leaving, Nichola sgave out Thank You cards to Ms. Gilliam, Ms. Jackson, Ms. Brown, the school nurse Ms. Anna and the crossing guard lady. Nicholas had a solid hard working school that nrought smiles to mommy when she saw his report card when she picked him up. Mommy was especially proud with his math grades and the letter grade in reading in which Ms. Gilliam set a goal for Nicholas in which he accomplished. Daddy made a promise that with the good grades, Nicholas can now get two new nintendo 3DS games. The one thing that always brings a smile to mommy and daddy is that Nicholas gives 100% on whatever he does and it shows in his grades, his attitude towards physical therapy, school work and overall he is enjoying life after beating out the deadly disease we call cancer. The first week in July spend sometime with family and go to summer camp and start therapy the week after.
May 1st-May 31st: Rollercoaster month for Nicholas between a school project and fighting off a nasty rash that had him going to see the oncologist first and then the dermatologist. The rash first broke out on his back only and then after a night of sleep, it spread all over his body and mommy took him to his oncologist. After a check up and blood test to see if it was a infection in his body, his test came back clean. Nicholas was sent to a dermatologist who saw him and gave him a special cream and medication to rid of the rash on his skin. Once the rash got a little around his ears, mommy ran Nicholas back to the dermatologist in which he gave Nicholas a new medicated cream that in a span pf three days, his skin was clear and clean and ready to get back to school. The week after fighting off the rash Nicholas was back in the hospital for his regular monthly check up with his oncologist. Daddy took him to the hospital and gave mommy a rest from visiting the hospital. After spending sometime with nurse Lynda and getting a check by Dr. Sedrak. Nicholas gained 1 pound to be at 90 pounds and stayed the same height at 51 inches. The hospital also gave Nicholas good news when his battle with leukemia was going to be stdy at a conference of oncologist from around the world looking for a cure to get rid of cancer out of our beautiful children and kids around the world. Ms. Gilliam sure had her students working hard during the month of May. PS 11 had there showcase and Nicholas was paired with his classmate Rayna in which they had to focus on how people in Nigeria lived longtime ago and today. After working with their parents in which the art work of Rayna's parents and the research of Nicholas' parents, the project was oustanding. Both kids gave a solid presentation to parents and family during the showcase while parents and family walked around the classroom checking out the showcase of Ms. Gilliam's class on Nigeria. The next day after the showcase was the last day of Ms. Gilliam teaching Nicholas. Her doctor gave her orders that she needed the rest and to be off her feet for the final stages of her pregnancy. Ms. Gilliam did a outstanding job with Nicholas in her first grade class. She made Nicholas stronger in reading and understanding what he is reading about along with questions after reading a full chapter. Math he did solid work and she got the best out of him in and out the class in math. The homework Ms. Gilliam gave Nicholas every night week after week got him prepared and kept a balance of consistency that he knew do a little homeowrk before therapy and finish the rest after therapy. Ms. Jackson took over for Ms. Gilliam and Nicholas was warned by mommy and daddy treat Ms. Jackson and how you will treat Ms. Gilliam with the upmost respect. The next time Nicholas goes to his oncologist is in July 25th. Mother's day was a great day as Nicholas bought his mommy a fruit tart cake in which both of them enjoyed eating after spending a day with grandma upstate New York.
April 1st-April 30th: Nicholas started off the month with a visit to the pediatric orthapedic that was referred by his oncologust at SUNY Downstate to see a Dr. Miller. Nicholas got some solid new during his visit to the orthapedic. After mommy explained the cancer treatment to the doctor and how his legs and waist got affected during the early part of his treatment, the doctor saw right away what was going on with Nicholas. He explained how the brains works that Nicholas' swelling of the brain was the top part of his brain in which controls the motor skills and when the swelling went down it triggered a bad response down to his left side of his body. The one thing he saw was that Nicholas does not need to walk in the braces everyday and his foot is straight, but he can see the weakness on his left side and the tightness of bones around the waist. The doctor also said that Nicholas will be back to 100%, but with a a strong sense of continuing his physical therapy, lots of exercise and walking to loosen up the tightness. Right away mommy decided to have Nicholas only go to school in braces on gym days, so he run better and will stand up stronger with the kids running and would not get bump to the ground when his loses his balance. After month with the braces and walking to and from school, Nicholas health, stamina and endurance has gotten stonger and better. His teach, para and physical therapist are happy to see a improvement. Nicholas had his monthly doctor's appointment and he blood count and levels was good. He went up 1/2 a pound to 89 pounds and grew a 1/2 inch. The next appointment is next May 24th. Ms. Gilliam is getting the best out of Nicholas and with a couple weeks of writing poems, Nicholas opened up his mind and wrote couple poems. She also is working hard and math and getting a big boost from him. Nicholas likes math and enjoys doing the homework. The one thing mommy and daddy are happy about is with the difference of style of homework that is giving to Nicholas. The teacher is sure preparing the students for 2nd grade and you can see it in the homework and the quizzes. Physical Therapy is going good, Nicholas is now getting adjusted and use to the stretching out days with Diony and Lima. Before Nicholas will complain a little because his body was moving allover the place during 10-15 minutes of just stretching out. Now he knows just stretch and work hard, because everything you do it will get you back 100%. Thanks to mother nature, Nicholas is able to walk to school and get the exercise in. Once school is over, Nicholas will be going to Sunrise summer camp and next month is the walkathon.
March 1st-March 31st: Happpy Birthday Nicholas. Nicholas turned 7 years old this month. Nicholas wanted to have his birthday fiesta with his classmates in Ms. Gilliam's classroom. Mommy and daddy gave Nicholas and his classmates, pizza, ice cream cake, juice and a puzzle in the goody bag. The kids had a blast and were going back and forth on who is going to get the oreo cookies on the ice cream cake. Nicholas took one and the rest went to a student at each table. Before the party Ms. Gilliam had the kids reading a book and then giving themselves positive feedback on there answers and questions. Daddy and mommy stepped away from Nicholas to see him in action and he was very responsive with his classmates. Ms. Gilliam's first grade class is very competitive and she has a great bunch of students that she has each and everyone working hard to achieve the best. Nicholas has a solid report card and made mommy and daddy very happy. Holy week as also spring break for Nicholas. During the week he went birthday shopping at ToysRus with his gift card from one his aunts, to the circus with his cousin Christiaan, did two days of physical therapy which was good to get him out the house and walking around the city with daddy. You can now see that the therapy is now helping his mind and body more that he his walking more straight with more balance and a better confidence. Holy Thursday Nicholas got sick with stomach pains and daddy took him to the hospital. He got checked out by nurse Lynda and the a full check up by Dr. Sedrak. The oncologist took some test to see if any signs of gastretis and gave Nicholas some medicine to clean out his system. The following Monday, daddy had to colloect some stool for Nicholas to get tested. The test from his stomach came back negative. The family went to Holy Thursday night mass and on Good Friday the family went to a procession and mass. Nicholas walked the whole 10 blocks without getting tired. Saturday the family went to easter vigil and with daddy running home from work, the family made to mass and got a candle in which Nicholas enjoy lighting up. He stayed up the wholes mass at Queen of All Saints Church that started at 7:30pm and finished by 10pm. Mommy is happy seeing that everytime we go to mass as a family when he does not have Sunday school, Nicholas is signing and reading the book. For easter the family went up to upstate New York to spend the day with his grandmother and his cousins. Next month in April Dr. Sedrak is sending Nicholas to get a full check up on his legs with his pediatric orthapedic to get a better look at his legs and a evaluation.
February 1st-February 28th: Very quiet month for Nicholas. The physical therapist team of Lima and Diony continue to give hiom a solid workout that his body and flexibility is getting stronger. His balance is sometimes weak depending on the exercise he is doing. Liam and Diony stretch out massage before the weak is over has strengthen Nicholas' mind and body. The one thing that has changed more in his daily four day routine was that he is doing more of his class homework from Ms. Gilliam before heading out to physical therapy. Nicholas is starting more to walk without the braces on weekends to give his legs a rest and to see how much and how far he has come walking with and without the braces. Lima and Diony see improvement everyday, but Nicholas needs the therapy and exercise at home to get back 100%. Dr. Sedrak referred Nicholas to get a full check up on April 2nd with a Pediatric Orthapedic to get a full analysis on Nicholas' condition and how we can continue to get the strength back. The Brooklyn Hospital Center Pediatric Oncology Unit along with Pediatric Oncologist around the United States are going to analize and study the cancer of Nicholas. They are going to be looking to see how the tumore developed in his stomach, what caused his muscles to go weak below the waist and how his brain got swollen what triggered the after effects when the brain sweeling went down. Mommy and daddy pray and hope they find a cure, so this will not happen to a another child. Nicholas was the first patient at TBHC Pediatric Oncology Unit that his happen to. The oncologist, nurses, child specialist and staff did a solid job of keeping Nicholas alive and all the physical therapist of making him walk again. Ms. Gilliam is getting tough in class and you can see her work is getting the best out of Nicholas. He brought home a good report card that broughts smiles of joy and happiness to mommy and daddy. Ms. Gilliam has Nicholas reading chapter that he has read book "Tooter" series and the Chalk Box Kid. The good thing about Nicholas reading was the questions he gave at the end of each chapter that made Nicholas focus and realize what he was reading. Nicholas got a solid teacher and it shows in his grades and the determination and hard work in class. In the last couple months, for everytime daddy or mommy takes Nicholas to the library, he always checks out a book on animals in the jungles or Africa or the oceans. He enjoys watching the animals and is teaching mommy and dadday more about animals in the wild on land and in the water. Grandmother Floriberta is back in Newburgh after going away during the cold month to a warmer country, Nicholas and mommy took a trip to visit and spend time with her. Next month Nicholas will celebrate his 7th Birthday with his classmates with pizza and ice cream cake.
HAPPY NEW YEAR 2013!! January 1st-January 31st. Nicholas started off the year full of beautiful songs and smiles. After singing in the Christmas Pageant for Queens of All Saints Roman Catholic Church on Christmas Eve, he sang the last show in front of a full crowd of the 1030am mass on Three Kings Day. Nicholas sang with such joy and strength and when it was time to say his lines, the people in the back could hera his voice. Mommy, daddy and his aunt Jonelle who is up from Panama on vacation. After mass and the pageant, Jonelle spent some time with Nicholas and her Santa gift was a electrical train set. Nicholas eyes lit up when he saw his gift. Right away he built the train and with daddy having the battiries, the train was in function for the rest of day. Monday morning Nicholas was back in school. Ms. Gilliam did not leave no homework for the Christmas Break, which was a blessing for mommy and daddy. Nicholas spent of of his Christmas break going to the physical therapy and getting a hard work from Lima. Once back in class, Ms. Gilliam gave her students a family tree project with much research. This family tree Nicholas had to interview his grandfather in Panama to get information on daddy's side, grandmother in Mexico to get the information on mommy's side and finally his aunt Yvette from Boston to get information of questions from the Family Tree. Ms. Gilliam was happy with Nicholas' project and his presentation of his project to the class of his family. Class started and so was his four day physical therapy with Lima and Diony. Everyday Nicholas is getting straonger, but most imporatant he is getting more confidence of running with friends and classmates and is more flexible. The one thing he does not like sometimes, is when the therapist give him a deep stretch to rub out the tight points in his legs. Last year Nicholas started a Penny Drive at PS 11 when he was kindergarten and this year he was honored as one of the leukemia cancer surviving kids who beat the deadly disease at a Leukemia Lymphoma Society - New York City Chapter. Daddy spoke a brief speech on how Nicholas beat his leukemia and Nicholas spoke a couple words. This year Nicholas will continue and start a new Penny Drive. Later on in the month on Martin Luther King Holiday and the special day of US President Barack Obama getting inaugurated for his second term. Special day for King and Obama. Nicholas watch a little of the ceremony, but had to leave as he got invited to play basketball with the men's basketball team of St. Francis College. Frankie's Fight Cancer Foundation. The baskteball team along with the foundation, had a basketball clinic for kids battling cancer. This was a day in which got a good workout of running up and down the court, dribbling the ball and shooting baskets. He was determined to make a basket while playing with the players and other kids that he did not mind getting bumped and pushed to the ground. For everytime he fell het got up fast and played. Finally when he made a basket, he was happy and tired, but continued passing and running. The most precious time of the day for mommy and daddy was watching Nicholas run up and down the court in a relay race with a pace that you could see how far he has come from the day he could not walk or stand. When the event was over along with his friend Kevin, Nicholas ate some pizza and once he got home he went strainght to bed and slept until dinner time. The mission continues everyday to get Nicholas back 100% and walking to school every morning with mommy and sometimes walking home with daddy since it was not cold in January, has been a great help of increasing his endurance and stamina of walking. School is going good, therapy is going good. He went for his three month check up at the hospital. After giving out his gifts to the nurses and doctors, Nicholas was checked out by nurse Lynda and Doctor Sedrak. He gained two pounds and is up to 90 pounds and went a 1/2 inch to 52 inches in height. His bllod counts looked good at this stage of beating his leukemia cancer. Right before leaving Santa from the hospital gave him a Thomas and Friends Train set in which now he has four train sets to play with. Two Thomas and Friends train set, electrical train set, Chuggington train set. With the homework and therapy he does during the week, most of the play time comes on weekends. After getting his check up, couple days later he had to get his 4 years old shots in whci he got another full check up. The only thing his missed was the eye check in which he will go back in February. The next time he goes to his oncologist is in April. Sunday school is also going good and Ms. Lisa is giving homework that brings out the best of looking up family traditions. One homework how is a Sunday dinner at the house and what special plate does the family eat. Mommy gave out her recipe of a dish from Mexico. In return the students exchange recipes and dinner for other parents to try and cook. The next visit to the oncologist is on Friday April 26th.
Tuesday, January 10, 2012
Nicholas Modestin with Academy Award Winning Actor Matt Damon at Family Reach Foundation Event & Cooking Live with Chef Ming Tsai & Friends.
Happy Holidays and Happy New Year: Before the year 2012 was over Nicholas sent a email out to all his friends, family and classmates for the great year in which he won the fight of beating his Leukemia and just wanted to say Thank You.
" I AM HAPPY TO BE ALIVE AND ENJOYING LIFE FOR THE GREAT YEAR IN 2012. I WANT TO THANK EACH AND EVERYONE OF YOU FROM FRIENDS, FAMILY, CLASSMATES FOR YOUR SUPPORT, CARING, LOVE AND KINDNESS DURING MY 3.5YRS OF BATTLING MY LEUKEMIA CANCER. I WON THE BATTLE OF BEATING MY CANCER AND I CLIMBED OVER MANY BIG OBSTACLES. I AM A CANCER FREE AND HAPPY. MY MISSION NOW IS TO GET BACK 100% IN MY LEGS AND GET RID OF THE LEG BRACES TO RUN FAST AS ALL MY FAMILY AND FRIENDS. THANK YOU FROM THE BOTTOM OF MY HEART. I COULD NOT HAVE DONW IT WITHOUT YOU GUYS." Love Nicholas Modestin
Dear Nicholas: "Nicholas, your strength while climbing your obstacles is heroic. You are an inspiration for many who have seen how you have handled this with grace. I can't wait to see pictures of you running like a wind. Trust me I have 100% confidence that you will do it with the Nicholas Modestin flare." From Angelo Isaac & Family.
Dear Nicholas: "A very Merry Christmas to you. I am so proud of you for conquering your cancer. You will ableto run fast as your family and friends some day because you are a very determined young man." Love Angel Betty Morin & Family.
December 1st-December 31st: Nicholas finished off 2012 on a strong note. He had a outstanding performance in his two Christmas Pageant Shows of First Nativity. The first show was for a senior citizens home which brought life, joy and happiness to the crowd and the second show was at the Christmas Eve mass at Queen of All Saints Roman Catholic Church. Nicholas shined with his bright smile as he sang classic Christmas songs and stood tall during his sole in which he read four lines. Mommy and daddy were full os tears of joy watching Nicholas perform. The third and final show will be on Three Kings Day of January 6, 2013 at Queen of All Saints 10:30am mass which will be a full house. With all the practice before getting ready for the Christmas Pageant Show, the last practice ran long before the show for the senior citizens and Nicholas missed the Pediatric Oncology Christmas Party at the Brooklyn Hospital Center. He did not get a chance to see his friends from the hospital who also beat cancer during this year. The one friend that Nicholas has not seen is Andres who he wanted to see at the party. Andres was diagnosed with Leukemia a week later after Nicholas was diagnosed with Leukemia and they became best friends. The Nicholas Modestin Toy Drive of 2012 does not know how much money was donated to the hospital since this year, Nicholas and daddy sent everything to the hospital. The article that was written about Nicholas and his toy drive, is waiting to see how much donations and gifts was given to the Brooklyn Hospital Center Pediatric Department. Next year 2013, the toy drive will go back of setting up place to deliver toys as Nicholas has couple contacts for next in which he will start his toy drive around next September 2013. Nicholas recovered good after beating out the high fever he got days after Thanksgiving. He got a good check out from his oncologist. Nicholas continues to do solid work in all the subjects in Ms. Gilliam-Freeman class. She gave him a shoe box project in which he did on whales and with the help of mommy the project was done and written by Nicholas. Next up she gave Nicholas a project in hwich he had to interview two adults. One on growing back then and now and a family tradition. He interviewed his Aunt Michleee for the tradition in which he got a awsome grade/check mark from Ms. Gilliam-Freeman and the growing part he interviewd his grandfather which he got a smily face/check mark. Both family members were happy to see Nicholas come off with a good grade. With all the work given by the teacher, she gave the students a break with no homework or projects during the Christmas break. The Sunday School class, Nicholas is starting to read and memorize the Our Father and Hail Mary. Ms. Lisa gave the students a project on there baptism in which they had to find pictures of the special day and write the meaning of a baptism. Diony and Lima continue to stress the hard work Nicholas is putting in during physical therapy. He is going four days a week and they are days he is tired from a long day of school and therapy and they are days he is strong from a long day of school and therapy. Everyday he is more flexible and now his body is getting a better stretch out by Diony and Lima who are rubbing out those tight points in his legs that is much needed. The walking more to school and back has helped a lot along with walking to and from church/Sunday school on weekends. Thanks to the nice weather that is not to cold for December. The two therapist are happy with the consistency of Nicholas and his will to get better. Nicholas does not got back to the hospital till January 18th, but he needs to set up a appointment to get his 4yrs old shots he missed during his battle to beat his leukemia. Santa brought smiles to Nicholas this year. Last he got the Nintendo 3DS and this year he got to add to it. He sat down and learned to play the games he got, but his favorite is the Cars game. He also got a gift in which he will get a chance to go to ToysRus to choose his toy. The Christmas break was spent going to make up classes for physicl therapy and doing some reading, writing and math just to stay fresh and get ready for the 2013 school year. The OT therapist at PS 11 gave Nicholas a new evaluation to see how far he has come since kindergarten class. She was happy with his progress, but could see he still needs OT therapy in which the NYC Board of Education took away and gave him just 30 minute session at school once a month. During the evaluation, she also gave Nicholas' para professional tips and a course on guiding him on holding his balance and catching his fall instead of holding on to a classmate. Nicholas set his goals for 2013. One is to run faster in school, learn more in science class with Ms. Villegas(his favorite). He wants to know more about animals and creatures, get in better shape, get back into the swimming pool for aquatic therapy around the spring time, have his two front teeth to grow back, stay health and strong, continue doing good work in school, listen more to mommy and daddy and overall enjoy life, family and friends. Now that Nicholas has his schedule down with school and therapy, he would like his daddy to land a full-time job instead of working crazy hours with different freelance and part-time jobs during the week. Right now daddy is working as a substitute teacher and would like to go back to school and get his masters in teaching, his sports production job on weekends and other jobs. Some days during the week if daddy gets a early school, he takes Nicholas to physical therapy, while mommy catches up on rest.
November 21st-November 30th: Happy Thanksgiving. Thanksgiving weekend was good and for Nicholas. Mommy and Nicholas went upstate to spend Thanksgiving with his cousins, uncles and aunts and daddy stayed home because he had to work the Friday morning. Friday afternoon with all ther playing outside and going in and out, Nicholas got a fever. First the fever was at 100 then it dropped back to 98 and then Saturday morning around 4am it went up to 102. Once it went up, mommy brought Nicholas back home to Brooklyn. The fever kept going up and down and finally when it did not go down Nicholas was rushed to the ER Brooklyn Hospital Center with mommy and daddy. When he got to the hospital he was 102 and right away he oncologist on call Dr. Sedrak told the doctor in ER to give him a bllod test and two bags of antibiotics. Once the fever went down and the results from the blood test came back, the hospital sent Nicholas home five hours later. He felt good and mommy was happy with the blood test results. Nicholas was a little weak which was expected, but overall in good spirits. During all this time battling his fever there was a shoebox project due with a article of Whales for his 1st grade class. Ms. Gilliam gave the project a week in advance to be due the Monday after Thanksgiving. Daddy took Nicholas to get book on Whales before Thanksgiving to help get information on his project and he sat down with mommy to see how he wanted to design his shoebox. With no Sunday School of Religion, Nicholas started most of his project and since he did not go to school Monday since he had to visit his oncologist for a total checkup, the project was done. The onoclogist was happy with Nicholas' results and the way he looked. He had a little cough, but that comes with battling a fever sometimes. Father Cerielllo at Queen of All Saints Catholic Church was approached by a repoter for the NYTimes.com website who covers Fort Green/Clinton Hills about a story. He told the reporter about Nicholas and how he organized his Nicholas Modestin Toy Drive for The Brooklyn Hospital Center Pediatric Oncology Department. The reporter Gabrielle came over and sat down and interview Nicholas about the Toy Drive and how it helps the kids at the hospital. Daddy was happy with Nicholas' answers and how he carried himself during the interview. The Nicholas Modestin Toy Drive is in full swing and word is spreading. The Toy Drive is for the Hospital Party on Saturday December 8th and for the people who can't donate or drop a gift off for the party, can deliver a donation or gift for cancer kids who be in the hospital around the Christmas Holidays. The fever and the medication took a toll on Nicholas' body that he was home for several days after school in which he did not go to Physical Therapy with Diony and Lima. The NYC Board of Education finally gave Nicholas the IQ test and mommy went for a meeting with the school psychologist Ms. Pine. The results came back and Nicholas is doing a solid job academics, but needs to continue working hard physical to get his strength back in his lower body. During the test Ms. Pine saw the strength and weakness of Nicholas and his academics was strong and she could see sometimes why he takes his time doing some class work, because his body movement, but his concentration is good and takes in information good. The test was to see how far Nicholas has come since his brain was swollen during the early parts of his chemotherapy and when the sweeling went down that is when the brain got hit and triggered a effect of him losing his ability to walk and stand in his lower muscles from waist down. Thank God he got all his functions back. His PT has asked mommy and daddy to check into getting Nicholas another Cat Scan on his brain to see if they see anything. Everyday is a challenge for Nicholas and everyday we see how far he has come and the bright future he has in front of him.
October 20th-November 20th: Nicholas finally started his PT sessions with Diony at Support By Design after a long delay and battle of going back and forth with the NYC Board of Education on getting the RSA packet. Funny how the BOE works with special needs kids and the fight the parents have to go through for there kids to get the right help and therapy. For the first couple weeks Nicholas was getting adjusted with school and four days days (Tuesday-thru-Friday) of Physical Therapy in which his body was feeling tired the first couple days. Now that he is in a groove and knowing the pattern during the week. Nicholas is balancing his time of doing homework when he comes home from school and then finishing the rest after dinner when he comes home from therapy. Also with the nice weather Nicholas is walking to and from school to get the much exercise that he needs to continue to the get the strength back in his lower body. Diony has being impressed with the progress of Nicholas and his work ethic. He still needs more work on improving his endurance and stamina. He also met his new PT therapist on Friday's. Her name is Lima. She started right away building up his left side in which is the big goal of getting Nicholas back 100% and out of walking without the leg braces. During the PT session, both therapist are giving Nicholas a intense stretch out of his lower body that is making him more flexible that mommy and daddy are doing it more at home. Sometimes Nicholas feels the pains, but he needs it to get back full strength. Hurricane Sandy came and left a path of destruction in the NYC area and New Jersey. Lives were lost and homes got destroyed and burned to the ground. The NYC subway system was shut down for a week after major flooding. With no train system and the aftermath of Hurricane Sandy, school and physical therapy was cancelled for a week. During the time at home mommy and daddy were creative to make sure Nicholas did some reading, math and played educational games. He caught up on all the movies he wanted to see on TV. To help the people affected by Hurricance Sandy, the family collected clothes and food and gave it out to the Queens of All Saints Catholic Church for Catholic Charities to pass it out. Hurts to see what mother nature can do with wind and water and leave a path of destruction. Now we just have to come together and help build back up peoples lives and homes. President Obama gets reelected for another four years in office as the United States. This time around congress and Obama have to nail down several issues and stop the bickering and put hate and race aside and work together. Nicholas' first grade teacher Ms. Gilliam gave the kids a lesson on politics and US Presidents. Last year Ms. Kasimow made her class learn the 50 states in order with a song, that daddy and mommy make sure Nicholas does not forget. With a couple holidays during the month, Nicholas took advantage of getting PT sessions at the Brooklyn Hospital Rehab Center with his new therapist Angela who took over for Jeanne who is on maternity leave. The one thing that therapist and the oncologist are happy about is Nicholas' transition for one person to another person with the therapy and school. Nicholas continues to thrive in the classroom. The only problem is that he has fell several times coming down the steps at school. The para professional has to improve on taking care of Nicholas and guiding him more of holding him and watching walk around school. With Nicholas sitting down a good chunk of time during class, sometimes when he gets up his left leg can sleeps on him or just does not have the strength on his first step of walking after sitting down. Ms. Gilliam is happy with his work and how he performs in the classroom. She has a couple things that Nicholas can improve on, but overall after having the parent teacher conference and getting Nicholas' report card, mommy and daddy were all smiles. To see how far Nicholas has come, battling and beating out his Leukemia, fighting off the tumor the doctors found in his body, having his brain swell up and losing his memory, losing all strength in his lower body that he could not walk or stand on his own, using the pediatric walker to learn how to walk again and turning around to learn how to do everything all over again at 3 years old, daddy and moomy were in tears of joy and happiness and impress with Nicholas. There is still improvement, but day-by-day he takes one giant step to a 100%. The weekends are also a full plate of activities for Nicholas. On Saturday he goes to practice for his upcoming Christmas Pagent Play at Queens of All Saints. Right before the Thanksgiving break on Saturday November 17th, the pagent teacher told the kids to drop all paperwork to see how far they how come on memorizing the songs and lines. The kids did a good job for 1st-thru-5th graders on knowing there stuff. Nicholas has four lines to remember and classic Christmas songs to sign. He is enjoying the signing. The big rehersal is on the December 8th with shows on the 15th and Christmas Eve. Later on during the day he goes to Saturday Evening mass with mommy since the kids that are taking Sunday School to get ready for first communion, have to go to mass. On Sunday daddy takes him to Sunday School. His teacher Ms. Lisa gives him homework and one week he had to draw different parts of the church in which he enjoyed doing and getting to know the different saints and the meaning of each one. With school, therapy, Christmas Pagent and Sunday School, Nicholas is in a full swing and is not complaining. He does get tired, but overall life is good and getting for him. The Nicholas Modestin Christmas Toy Drive started. This year daddy has everything going straight to the Brooklyn Hospital Pediatric Oncology/Hematology Unit. Nicholas will be flying high in the air next year, when a foundation that gives kids with cancer a chance to fly in a Blimp next to the pilot. He is so excited when he got the news. He is also entering a writing competition on his fight and battle with Leukemia. Nicholas is also starting to ask more questions of his cancer in which he has a better understanding now that he sees the marks from his mediport, tumor and everyday hard work in therapy. Mommy and daddy are doing the best to explain and show support to him and other kids battling childhood cancer. Basketball season started and with the New York Knicks starting off hot, mommy is all happy with her team and daddy's teams the 76ers which lost twice to the Knicks even though Nicholas was cheering for both teams, daddy is staying away and will let Nicholas pick his own team. He could pick the Brooklyn Nets as he sat down with daddy to watch some games. He picks the New York Mets because of the colors and he enjoy going to CiTiField.
October 1st-October 19th: A month has past and Nicholas did not have not one PT class with Diony since class started on September 6th. Daddy and mommy fought the Board of Education. Called, emailed and told all the Supervisors of District 13 Brooklyn how the delay in the RSA is affecting the recovery of Nicholas getting back 100%. Finally on October 18th, daddy went to pick up the RSA at the BOE and the person that helped me last year, helped me this year of getting the RSA packet. After a month and couple weeks Nicholas can start his PT sessions on October 23rd. Good that also Support By Design held Nicholas' spot of 4 days a week of 45 minute session. Nicholas was back in the hospital since he took out his mediport back in August. He ran into his friend Kevin who was waiting to get a spinal tap. During the time waiting to get his blood test, Nicholas painted a frog in chemelon colors and relaxed. Once the Dr. Sedrak and nurse Lynda finished with Kevin, Nicholas was up and was a little nervous as he getting adjusted of taking out blood on his wrist instead of through the mediport. Now that he is off all cancer medications, his body has changed, he is back eating the things his missed eating during treatment and his weight is going up and down. Before seeing Dr. Sedrak, Lynda weighed and took all his vital signs, Nicholas weight now 87 pounds and 54 inches in height. He weight is stable and height he went up one inch. Now we just wait for his blood results in which mommy ask to see his vitamins, lead and sugar level. The next appointment for Nicholas is on January 18th, 2013. Since Nicholas loves to sign and dance, He joined the Christmas Show along with the kids from his Sunday School. Every Saturday till Christmas Eve, Nicholas has to learn some classic Christmas songs and memorized the lines of a play. He is enjoying his time preparing for the show and play. Queen of of All Saints will have the kids perform three shows. One for a Senior Citizens House, Christmas Eve and the first Sunday after Three Kings Day in January. School is going for Nicholas. Ms. Gilliam has him working hard. After a month into school, Nicholas loves his teacher and work he is doing. The 5th Annual Nicholas Modestin Toy Drive starts on Monday October 22nd and extends till December 21st. Letters to donor will be in the mail. The Christmas Party for The Brooklyn Hospital Center Pediatric/Hematology Department is on Saturday December 8th. So the Toy Drive gifts with go for the Party and the kids in the hospital around Christmas Time. On Sunday October 21st is the Holy Day of Black Christ - Cristo Negro in Portobelo on the Province of Colon, Panama. A lot people come from all over the world to visit Cristo Negro and make a promise. On the same day daddy will make a promise of getting ready and in shape to run the 2014 New York City Marathon in honor of Nicholas and other kids battling leukemia and cancer. Daddy will run the 1/2 marathon first and then the 26.2 miles later. He will join Team Leukemia of New York City Chapter.
September 19th-September 30th: Nicholas started to attend Sunday School at Queen of All Saints Church in Brooklyn to get him ready for his first communion in Spring 2014. The Catholic Church wants the kids not attending catholic school to start in 1st grade instead of second grade like the catholic school children. Mommy and daddy did most of the religious schooling of first communion and confirmation in Spanish and now have to translate everything in English for Nicholas to get him adjusted of reading the bible in english. He enjoyed the first couple Sunday's of class. Nicholas goes to church with mommy on Saturday evening and daddy takes him to Sunday school before the 830am mass. Before Nicholas got dignosed with leukemia he was speaking Spanish at home and with family members and then when his brain swelled up during the early part of his chemotherapy treatment, he lost and forgot things he did at 2.5yrs old. Once the swelling went down, he started therapy and got things back slowly that he lost. The one thing he didn't get back was the Spanish speaking. He understand everything mommy, daddy, family and friend said in Spanish, but he answered back in English. Now on every Monday from the 24th till Christmas break, Nicholas is in Spanish classes after-school to get back his speaking. His teacher Sr. Felipe, picked up how Nicholas understood the language but wasn't speaking it and he knows what he has to work on with him. Daddy continues to fight the NYC Board of Education on getting Nicholas' RSA packet so he can start his physical therapy classes. A month has gone since classes started on September 6th and the DOE is making Nicholas lose a good chunk of recovery time of getting back 100%. Last year Nicholas lost two weeks of OT/PT classes and this year is worse of getting the RSA packet. The DOE bureaucracy is getting to point in which parents around the city of New York are upset of having problems getting the RSA packet for kids with special needs that need therapy ASAP. With no physical therapy that he suppose to have Tuesday-thru-Friday after school, Nicholas is working out with daddy on weekends in the park with running, climbing and agility skills and running around with classmates after-school in the playground to continue improving his mobility and to continue to strengthen up his legs and mind of getting stronger. Depending on who picks up Nicholas from school and how the weather is, he walks home instead of taking the bus. When he gets home, he is a little tired, but feels good to get exercise in until the physical therapy classes start. Now that Ms. Gilliam started giving homework, Nicholas is adjusting himself good of reading a book a night along with writing about what he read, math and spelling. He loves going to school, enjoys what he is learning from his teacher and talk a lot about his classmates. Now that port is out, one day he looked at his body and saw the three lines on his chest/stomach. Mommy explained that one was from a little ball the doctors found in your tummy in which is called a tumor, the second was were Lynda and Nelly gave you the chemotherapy medications and antibiotics and the third line was were the doctors operated on to take out the mediport. He asked mommy will the lines stay on my body or go away. All mommy could say is that a magic cream will erase the marks slowly. Later on next month Nicholas will be getting a psychological test by the school psychologist to see how his body and mind have come and function after 3.5yrs of beating out his leukemia and with all the chemotherapy his body had to intake. Once that is done along with getting a reevalution in occupational therapy, another psychologist from the hospital will see all the results and take it from there to see how Nicholas recovery is going. Daddy started working on writing up the lettter to give out to friends, family, business and foundations for the upcoming Fifth Annual Nicholas Modestin Toy Drive for kids at the Brooklyn Hospital Center Pediatric Oncology/Hematology Unit. How time flies, as the Toy Drive started in 2008 and every year it continues to grow.
September 1st-September 18th: What a great start of the month for Nicholas and the Modestin Family. The first day of school finally arrived on September 6th and Nicholas was so happy to walking to school after coming off the B38 bus. After two weeks of relaxing and getting ready for school, he was just wanted to see his new 1st grade teacher and see his old and new friends in his class. First off he met Ms. Gilliam a tough and very discipline hard working teacher that is going to work Nicholas and continue to get the best out of him. Daddy was all smiles to also see Ms. Castaldi that will be taking care of Nicholas for the school year on the first day. Day two of the school year took a wrong turn when management of PS 11 took Ms. Castaldi away from Nicholas for various reasons and gave him a new para professional. Daddy/Mommy, Ms. Gilliam and Ms. Castaldi was not happy with the move and especially when management made the move with consulting mommy/daddy and his 1st grader teacher on what they wanted. Daddy spoke to the PS 11 Principal and got a explination along with IEP instructor of the school. Before the day was over Nicholas got a para professional that he knew, but daddy was not happy with the way things went down with the change. Ms. Gilliam was ready to work with Ms. Castaldi and they knew each other and how each will feed off during the class and the school year and now the teacher must adjust to the new para. Daddy will continue to try to get back Ms. Castaldi with Nicholas and for Ms. Gilliam to make her class flow smooth. Nicholas didn't have homework for the first week as the teacher was finding out the strength and weakness of the students and to give teh students a chance to know each other. The science teacher gave Nicholas a little project during class on animals and he enjoyed everything about it and this year he also has a computer class which is teaching how to work a computer for projects and homework. For kindergarten he had two days of physical education and this year he had one day which will be on Tuesday's. Recess is helping him to enhance his stamina and improve the mobility in his legs. The Brooklyn Hospital Pediatric Oncology assigned Nicholas to see a psychologist which was to see how his body and mind is after 3.5 years of treatment to beat his cancer. The psychologist ordered to have Nicholas get reevaluated for the OT exam, because they want to see if the new OT exam is the same way that the NYC Board of Education saw Nicholas back in April. With the Jewish holidays, Nicholas had four days off. On Saturday the 15th, the Modestin Family participated in a walkathon for a foundation that help the family financially during the tough times during Nicholas battle to defeat his leukemia. The family raised $75 for the Francesco Loccisano Memorial Foundation. The walk was in Brooklyn, that started and finished at Pier 67 which the families had to walk to the tip of the Verrazano Bridge and back. Nicholas walked the whole walk. At the end he was tired and slept good at night. Three days later on the 18th, Nicholas was honored along with three other childhood cancer survivors at a special event sponsored by Family Reach Foundation and Cooking Live with Chef Ming Tsai and Friends. The special guest of the night was academy award winning actor Matt Damon. Family Reach was a foundation that help the family during the tough time when the old landlord raise the rent and want us out. They helped out with legal advice, getting us in touch with housing/tenants lawyers and when we found a new place thay paid off the first month of rent. A special thanks goes to the social worker Rosemary for Family Reach for her outstanding work of keeping the family strong and head up during down times. Her calls, emails and always making sure things were good and to see how Nicholas was doing. Nicholas was happy to meet other kids who beat cancer. The night was great when he met Mikalo the Honoree of the night. Mikalo was diadnosed with leukemia at 18 months old and within two year he needed a bone marrow transplant in which he got. Nicholas and Mikalo played and had fun with ice castles while the parents went around thanking the founders of Family Reach. The night started out beautiful when Nicholas met Matt Damon and took lots of pictures from the media and Family Reach photographers and spoke how he is doind. Mommy was beside herself of meeting Mr. Damon. The beautiful smiles of mommy and Nicholas was glowing all night. Nicholas was all dressed up looking smooth. Once the event started, he met all the chefs of the night in which chef Ming Tsai, who cooked a steak meat on the stick for him and he ate it. Along the night daddy took pictures of Nicholas and mommy as they met Chef Mario Batali who mommy was big fan and enjoyed his Orecchiette with Rapini Pesto & Sausage, Chef Floyd Cardoz, Chef Marc Forgione who Nicholas turned down his salmon, but ate his special bread and pork, Chef Masaharu Morimoto who cooked a salmon inside the ice castle and a waffle seafood pizza that was good and finish off the night was the dessert of Chef Jim Dangler and Pastry Chef Laurent Richard which the made a delicious 23 karat gold chocolate pyramid with hazelnut streusel, poached raspberry and caramelized filberts. The whole table ate every inch of the dessert. During the night the family was interviewed by Family Reach. The founders of Family Reach were happy to meet the Modestin Family and to thank us for the beautiful thank you letter that was written by daddy. Daddy was in tears of happiness to meet everybody and to thank them from the bottom of his heart for saving the family. Before the night was over Nicholas took a pictured with every chef and got there autograph and then ran over through the crowd to say good night get a hug and from Matt Damon and his wife and to thank him for coming. Mr. Damon told Nicholas that he was awesome and great fighter that won his battle with leukemia. The morning before the event daddy's cousin Maritza sent a big check for Nicholas to donate to cancer organizations and to children fighting to beat leukemia and other childhood cancer. The money will be distributed to all the foundations who along the way Nicholas bonded with. Thank You Family Reach Foundation for honoring Nicholas on this special night and the inspiration he brings to the family and other kids fighting childhood cancer, Thank You Cooking Live with Chef Ming Tsai & Friends for the great meals and for also raising money to find a cure for childhood cancer and to help families in needs during tough times, Thank You Matt Damon for coming and making the night super special and making all the kids happy to meet you and to all the donors Thank You. The mission is to continue to find a cure for childhood cancer and continue helping families.
Nicholas Modestin with mommy Adriana & Academy Award Winning Actor Matt Damon at Family Reach Foundation Event & Cooking Live with Chef Ming Tsai & Friends.
"I have been teaching for 10 years in the NYC public schools and in my memory of the approximately 300 students I have taught, one student stands out more than any other. His name is Nicholas Modestin and his bravery and courage was inspiring. From the first day of school Nicholas let it be known he was just one of the kids. Academically he was able to read and write in amazing ways for a Kindergarten student. I often asked Nicholas to read his writing in the sharing chair as it was good model for other students and consistently exemplary. He loves to sign and fortunately I love to play guitar so we were a great teacher-student match. When it was time to sign he smiled and sand louder than anyone. He also knew all the words so this was helpful to the class. Nicholas is well kied by his peers and became a leader in reading and math. He also had great moves I witnessed during "freeze dance". Above all else when Nicholas was not feeling well he would fight to hide it to stay in school. His dedication to learning is something that will take him far in life. I look forward to staying in touch with the family for a long time to come. My only fear is that he will get a scholarship to USC(daddy roots for USC Trojans Football) and as a UCLA graduate I will have to make a exception and be happy for him. Perhaps he will go to Harvard instead, the sky's the limit." Ms. Lisa Kasimow (Nicholas' Kindergarten Teacher)
Nicholas Modestin at start of walkathon for The Francesco Loccisano Memorial Foundation and for the Fight Against Pediatric Cancer. The walk was from Pier 67 in Brooklyn to Verrazano Bridge(background). Team Nicholas raised $75.
Nicholas Modestin shaking hands with Congressman Michael G. Grimm at the start of The Francesco Loccisano Memorial Foundation walkathon for the Fight Against Pediatric Cancer.
August 16th-August 31st: Mission I completed as Nicholas is now cancer free and mediport free as Dr. Aladdin took out his mediport on Thursday morning August 23rd at The Brooklyn Hospital Center. After the sugery, the doctor's assistant showed mommy and daddy the mediport and when Nicholas saw it he was excited to see what was in his body for 3.5 years. Before going into surgery Nicholas was nervous that he was not cooperating with the nurses a little to stick the needle in his hand to get ready for surgery, but step in Kristen the Child Specialist of The Brooklyn Hospital Center. She brought joys of smiles to Nicholas not only with her game and Ipad, but her presence of relaxing Nicholas. Kristen got him to relax all the way until the anesthesiologist put him to sleep. Once Nicholas woke up, he went upstairs to visit his oncologist to get his next appointment. The next appointment is on Friday September 7th. Nicholas was curious to see how many stitches were put in his chest after the surgery. The first 48hrs he couldn't jump around as the Dr. Aladdin told him to take it easy. So for two days, Nicholas read books, did some math and writing to get ready for 1st grade. Summer Camp was over on the 16th and this year you see a major improvement in the body mobility of Nicholas. The hard work Nicholas put into his swimming time showed in his legs. Kayla did a outstanding job and now daddy has to continue of getting Nicholas into the pool and improving his lower part of his body. Abuelito was up from Panama for couple weeks and was happy to spend a day with Nicholas. They played and had fun with each other. Spent a day at the movies and went shopping. Mommy and daddy had shuffle days of work as they split hours taking care of Nicholas without losing at time and days from work for weeks left for school. There were days Nicholas was bored, but he always found something to do and play. His cousins from upstate and queens came to visit and he built the train and race tracks. The kids have fun racing all the character cars from the Movie "Cars 1 & 2". The two weeks was also the last time Nicholas was working out in OT with Jen. Since NYC Board of Education took away OT and added a extra PT, Nicholas will not have Jen and will have OT once a month in school. Diony finished off the summer in good stride in PT with Nicholas. He built up his stamina and endurance and wil start school stronger and running at a better pace than he had in kindergarten. When PT classes start in September, he might have Diony do to the time. After seeing how Nicholas was rushed from school to therapy in a span of a hour, mommy moved the classes till 5pm so he can come home eat, relax and do some homework before heading to PT workouts. The next appointment for Nicholas is on October 19th.
Nicholas posing with his T-Shirt before heading to hospital for a blood test from a a group of special people who honored him. Ann Sutphin and her teammates of Team ATF made and complete The BIG CLIMB of Seattle for Leukemia & Lymphoma of the Seattle region. They climbed 1,311 steps and 69 flights of steps.
A Letter of Thanks to Friends and Family:
Hope all is well & Greetings:
Let’s all Cheer, Holla & Stand up - Today is a very Beautiful Special Day for Nicholas Modestin. MISSION COMPLETED. After 3.5yrs of battling High Risk Acute Lymphoblastic Leukemia, Nicholas is cancer free and Today August 23rd the surgeons at The Brooklyn Hospital Center took out his Mediport out of his chest. The Mediport (is an internally installed needle accessed device that is typically used for patients that need long term IV access- http://en.wikipedia.org/wiki/Port_(medical) was used for blood test, chemotherapy, antibiotics and all medications. THANK YOU & THANK YOU GOD for taking care of our son and giving him strength of beating this deadly disease we call cancer.
On September 22, 2008 Nicholas was diagnosed with Leukemia at 2.5yrs old and today at 6yrs old he is full of smiles of joy and happiness. Our son is alive today for his courage, determination and the solid treatment and hard work care and love from his oncologist Dr. Sadanandan and Dr. Sedrak, nurses Lynda and Nelly, child specialist Kristen for relaxing him before entering the MRI and Cat Scan machines and the Pediatric Oncology staff at The Brooklyn Hospital Center. We Say Thank You.
Yesterday we listen to Dr. Sadanandan calling Nicholas her Miracle Baby with her big smile, today we hear Nicholas “Built Strong To Crush Out Cancer” energized after going through chemotherapy and having up and down days of his treatment.
Everyday is a challenge for Nicholas. He has climbed over many big obstacles and the next BIG MISSION is beating out a rare side side effect of his treatment called Acute Leucoencephalapathy that left him not walking or standing during the beginning of his treatment. He developed lower extremity weakness, rigity and muscle weakness in his legs. Today he is back walking and with his dedication, motivation, pure will and ambition is the fight to build back up his strength in his lower part of his body and to get back 100% and running at full speed. Now that mediport is gone, he is talking all along about getting into activities/sports in which he can finally play without thinking about his mediport in his chest. He will now visit his oncologist for blood test every two months.
Nicholas will be going into 1st grade next month. He spent a great year in kindergarten at PS 11 in Ms. Kasimow’s class. Ms. Kasimow got the best out of him and it showed in his grades and work. His classmates so young and smart they always lifted up his spirits after a day of chemotherapy. Thank you Ms. Castaldi a true hard working para professional for taking care of Nicholas during the school year and guiding him to be more independent in and out of the classroom.
On behalf of the Modestin Family we want to thank each and every one of you for your support, care, love, letters, emails, calls, visit and most important your presence. This comes to let you guys know how much your kindness is appreciated.
LOSING IS NOT AN OPTION – Nicholas and other kids around the world are battling cancer is our greatest inspiration to continue advocating for childhood cancer awareness and hoping to find a cure.
“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made the feel.” Maya Angelou
Thank You & God Bless
Adriana & Felix Modestin Jr.
Nicholas with his Para Professional Ms. Castaldi(L) and his Kindergarten Teacher Ms. Kasimow.
August 1st -August 15th: Nicholas has a freaky accident after going shopping with mommy at Target in Atlantic Mall. While walking down the escalators, while crossing his legs, he slipped and fell down a couple stairs. Thank good he only came away with a couple bumps on the heads and little scrapes on his legs. Target called the ambulance and they took Nicholas to teh The Brooklyn Hospiatal Center. The doctors gave him a cat scan for bruises in his head and he was on his way home. The next day he got strong and weent to summer camp. Nothing could hold him back from going to camp. Leukemia & Lymphoma and the New York Mets invited Nicholas to spend a day with family and friends at CiTi Field. Nicholas had a blast running around the basses, hanging out with Mr. Met, throwing and cathcing baseball with Mets pitcher Bobby Parnell. The one thing that has improved for Nicholas for the summer, is that he lost weight, regain some strength in his left leg and is running a little faster. The water exercise with Kayla in the pool at summer is helping and the intense workout of PT with Diony. For first grade in September, Nicholas will have Ms. Gilliam as his teacher. She sent the list of things he needs to bring on September 6th. Thanks to Sunrise Day Camp for giving Nicholas a good amount of school supplies.
Nicholas Modestin with Mr. Met at CitiField during a beautiful day sponsrored by the great people of Leukemia & Lymphoma Society - New York City Chapter.
July 16th-July31st: How summer camp has change Nicholas and the change is all positive. The constant running and moving around has Nicholas losing weight around his waist to give more flexibility of moving side-to-side and up and down in his mid section of his body. His counselor Kayla has Nicholas doing a lot of water exercise that is improving his legs and especially getting back the strength in his left legs that you can see the difference when he is walking. During the two week stretch Nicholas won another award for "Best Back Float" Camper in the pool. Congrats Nicholas for your outstanding job. When school starts on September 6th, Nicholas will be burned up from camp with his new sun tan. Jen continues to get Nicholas to work on his shoelaces and making sure that when Nicholas starts school, he is ready to be more independent and not depending a lot on his para professional. He will still need Ms. Castaldi for extra stuff and to have a extra eye on him since he still wearing braces and walking slow going into 1st grade. Jen OT workout with Nicholas has improved his condition that you can see that having OT out of school instead of during school time, shows that is better to get services outside instead of in school, so the kid would not be taking out of class. Diony with the morning schedule sees a different Nicholas from having him in the evening. The attitude is different with more determination and focus. Before starting school, Mr. Stephens said what Diony was thinking of seeing a different Nicholas from his morning class to his evening class. Diony has seen a improvement in leg lifts and running in short distance in Nicholas. Diony is changing around the therapy of working with Nicholas with sneakers and orthapedic boots to work with strength in his ankles. Nicholas went to his monthly blood test after leaving OT/PT session. Nelly took care of him and Dr. Sedrak was the oncologist for the day. He went up 2 pounds from 82 to 84 and went up one inch from 52 to 53 inches. Nelly explained to Nicholas that once his mediport is taking out his chest, he will be getting IV on his wrist/hand. He is not to happy about the port taking since it is easy to take out blood that way instead on the wrist/hand. The family took a visit upstate to visit grandma and the cousins for a day. Nicholas had a blast as mommy and daddy got some rest. The family wanted to go to the lake upstate, but the rain washed out the plans.
Nicholas getting interviewed by Art Works after teaming up with kids from The Brooklyn Hospital Center Pediatric Onoclogy Unit to paint and color a day under the sea which futured two paintings. Art Works sponsored the great event and showed the kids battling cancer painting at NYU
July 1st - July 15th: Once school was over Nicholas was ready for camp. Jen and Diony had no PT/OT sessions for the first week in July and with the RSA packet from the NYC Board of Education not ready, Nicholas went to camp for two weeks instead of the Monday, Wednesday and Friday's. He had a blast in which he started in his new class of Rangers. He met new and old camp friends from the Troopers class. Nicholas first year at camp bus counselor Dean was back this year taking care of the kids from Brooklyn. Dean is a future doctor/oncologist who just graduated from Duke University this year. Congrats to Dean. Daddy and mommy made sure to let the camp know to make Nicholas swim everyday and put the muscles and strength back into his left leg with lots of underwater exercise. When Nicholas came home the first day from camp he was full of joy after getting a taste of swimming with the help of Kayla. From the time he got off the bus, Nicholas hugged every camper goodbye and spoke highly of the Ranger class. Once the first week was over, Nicholas came home with "The Most Spirted Camper" Award in which mommy and daddy were happy to see Nicholas smiling and enjoying life and always thinking with a good heart. The first two weeks you could see a difference in the mobility of Nicholas and his body movement and control. Even though he continues to fall sometimes when he wants to make a quick left, he catches his fall better, instead of just falling to his knees. Mommy decided to have Nicholas go to camp between his braces and his orthapedic shoes, just to see which ones helps more with all the running and activities he does. The orthapedic shoes has helped build strength in his legs and helps him more of lifting up his legs while walking instead of dragging his legs. Nicholas went to get his braces adjusted after he felt some tightness while playing volleyball at camp. The family spent Sunday with his cousin Christiaan celebrating his birthday. They played every games, painted, played rough that daddy and Aunt Michele had to stop them several times to remind them that Nicholas has a mediport in his chest. Now that Nicholas is losing some weight, he still has the baby fat to get rid off that he got when he was not mobile and could not walk around during the early treatment of his Leukemia. Once he starts OT/PT he will have a chance to improve his body in time when school starts on September 6th. His ambition and committment is strong that he is becoming a model of hard work and determination. Nicholas told daddy that once he takes out his mediport, he wants to play baseball, soccer and tennis. Mommy wants to put him karate to also work on his legs. The one thing that has not changed in Nicholas is that he continues to get up around 630am like his going to school to catch the 8am camp bus. He gets up smiling and always picks and chooses to wake mommy or daddy up for breakfast, cleaning and washing and heading out the door for camp.
Nicholas(L) at finish line of Sunrise Day Camp Walkathon (L-R) Emily, Little Jennifer and Victor Manuel. They kids inspired Nicholas to finish the walk strong and they had a blast with activities after finishing the walk.
June 15th-June 30th: The last two weeks of the month was fun and enjoying for Nicholas. With New York City Board of Education giving time off between half days and off days, whenever Nicholas went to class there was a field trip or reviewing what he learn for the 2011-12 school year. First came the PS 11 Dance Festival. Ms. Kasimow had the class dancing to "I got a Feeling" from Black Eyed Peas. Nicholas danced his butt off and was in stride with his classmates. He got up, stepped up and shined for his solo dance in the circle. Ms. Kasimow got the best out of Nicholas and it showed in his work. Mr. Stephens prepared Nicholas for kindergarten with hard work, discipline and most important focus enjoy what you're doing. Nicholas finished kindergarten on a solid note. He finished the school year top of his class and will be in a class for the 2012-13 school year with other kindergarten kids who finished tops in there class. The 1st grade teacher that Nicholas is assigned to is strict, hard working and will continue to get the best out of Nicholas. Daddy took a couple days off of work to travel with Nicholas and his classmates to field trip. The one field that stands out was a concert in Fort Greene Park in which the kids walked from PS 11 on Waverly and Greene Avenue to Fort Greene Park. Daddy walked with Nicholas and his classmate and he walked a total of 15 blocks on the roundtrip. Even though he got tired, he walked the whole way. Couple days after fun in the park, Nicholas graduated from Kindergarten. Ms. Kasimow spoke highly about Nicholas and was in tears to see him work so hard and no complaints during the school year while battling Leukemia. He got a big applause from his classmates and the parents. Right after graduation, the class spent the afternoon in the playground and playing around in the water sprinkler. Nicholas and his classmates had a blast going between getting wet and eating popscicles. When it was all done, they went back to class for ice cream and cake. Talk about keeping these kids wide awake. Daddy was helping out and was happy to see Nicholas move around the playground with his classmates and getting all wet. Nothing was more beautiful than watching Nicholas finish off the school year on a upbeat. Now that school is over, Nicholas wil make up all his OT/PT therapy classes and start summer camp at Sunrise Day Camp on July 2nd. Nicholas bonded strong with the whole class and some students, Ms. Castaldi(former Ms. Ross) and Ms. Kasimow wrote a quote on the year with Nicholas.
To K-110 Class & Parents of K-110:
"When Nicholas walked into Ms. Kasimow's class back in September we did not know what to expect. He was ready for all the challenges facing him for the school year and a fight to beat out his battle with Leukemia. We want to thank each and every classmate of Nicholas for the support, caring and especially for making his days in class special on forgetting what he was goinmg through. For everyday he came home, he spoke highly of all his classmates and how much they made him stronger. During gym class his classmates made sure Nicholas was alwaysmoving around aznd having a mind of never quitting. We Say Thank You. For every time hi missed class for chemo or a blood test, the Monkey was in his chair and when he came back the energy and high spirit of the class always brought out the beautiful smile in our son. We Say Thank You.
Nicholas had his last chemo back in February and over the summer before he starts 1st grade, he will have his mediport taking out of his chest after he jumped over many obstacles in three and a half years of beating out his cancer. We want to thank each and every one of you for helping Nicholas get through his tough fight during the school year and helping him finish off a great year full of joy and happiness of kindergarten.
This comes to let you know how much your kindness, admiration and love is appreciated. Nicholas is blessed and honored to have great people around him to make sure every day is a beautiful day. You will be forever be in our hearts and prayers for all you have done for our son Nicholas. Thank you for time and consideration.
Love - Adriana & Felix Modestin Jr.
"When I meet Nicholas for the very first time, he was a shy budding little flower. At first Nicholas was not comfortable with me being his own personal paparazzi. As time went by, he slowly began to feel comfortable enough to come out of his shell and begin to blossom. During the nine months I spent with Nicholas, I grew to admire him because he had so many challenges to deal with, but I noticed Nicholas NEVER gave up. I am inspired by Nicholas' strength and will power. There were times when Nicholas was too tired to participate in school activities, but he didn't let that stop him. Nicholas was loved by the entire class of K-110 and when Nicholas was too tired to run around and play during recess, some of his classmates would sit next to him and play with him. Not only did I grow to love Nicholas, but his classmates and his teacher Ms. Kasimow loved him too. I made sure Nicholas was never treated differently and I always included Nicholas in everything. I watched this budding little flower bloom into a confident, strong charasmatic adorable boy we know as Nicholas Modestin" Ms. Castaldi (Nicholas' Paraprofessional)
"Nicholas is a great friend. We sat together at the table and he wlawys helped me. Nicholas is always nice to all the kids and everyone likes him. I hope we're in the same class next year" Nile (Nicholas' classmate of K-110)
"I will miss you Nicholas. You are my bf. We love you" Mia (Nicholas' classmate of K-110)
June 1st-June 15th: Nicholas goes back for a blood and his oncologist explained to him that before he starts 1st grade and if everything goes right when summer camp is over that his mediport will be taken out. Nicholas had his blood test and his results from his May visit came back good. He gained two pounds and now is at 82 pounds and grew a inch in height. He is now at 52 inches. The kid will not stop growing. One day after school on a beautiful day when daddy had no work or freelance at night and Nicholas had no PT/OT, daddy and Nicholas walked home six city blocks. Nicholas was comfortable and relaxed walking eating his icy and telling daddy how his day was. Once he got home the family ate dinner, Nicholas did his homework and went to sleep. The braces are working more of stabalizing his foot and giving him more balance when walking the distance. TEAM NICHOLAS showed up in stride for the 6th annual Sunrise day Camp Walkathon. The team was smaller this smaller, but we raised a good amount of money. The greatest thing was watching Nicholas walk the whole walkathon middle mile walk. he had a fun walking with his friends Victor Manuel, Jennifer and Elizabeth. The kids ran, walked, kid rocks, sat down, drank water and crossed that finish line with such a strength that they still had energy for fun time. They jumped into the bouncy house, shot baskets, played a little golf and finised off eating cotton candy. The Modestin family was interviewed about the walkathon and how Nicholas has benifited coming to Sunrise Day Camp during the summer. Nicholas walked into Sunrise with his pediatric walker 3 years ago and walked out without the walker 3 years ago. The hard working staff of Sunrise put such a confidence and ambition into Nicholas of walking free of his walker. Jen the OT therapist is teaching Nicholas on tying his shoelaces and independent work that sometimes he gets frustrated, but at the end of the sessions he walks out happy and smiling with Jen. With a month left of school, Ms. Kasimow is giving Nicholas homework on getting him ready for 1st grade. His reading level is up, math is adding two numbres and getting more comfortable with subtraction, science he loves since he is getting a better understanding and view of animals, music he loves to sing and is asking to play a instrument and gym he enjoys running and learning the function of his body and expressing himself. The next appointment for his blood test is on July 10th.
The 2012 TEAM NICHOLAS getting ready to walk 2.5 miles in the Sunrise Day Camp Walkathon.
May 16th-May 31st: The family is still getting settled into the new place. The one thing mommy and daddy are happy with Nicholas is that he got adjusted to the new place fine and he got adjusted of taking a longer walk to school and leaving the apartment more earlier in the morning to head to school. Nicholas body adjusted also of coming home from school and getting ready to head out for PT and OT therapy. Nicholas and his classmate Nathaniel did a outstanding job on the Zebra project for the Safari Jungle projects for the school and parents. Nicholas and Nathaniel had to explain and talk about Zebras when parents came through the jungles of Kenya in Africa. The next day Ms. Kasimow was very proud of Nicholas and his articulation of telling people about the Zebras. The left side of Nicholas is still weak and everyday he is working on turning left without falling. Sometimes Nicholas falls down down when he wants to make a quick left in which his left foot can't turn quick instead the therapist tell to tall a full turn when going left. When he gets up after his falls he hits his left leg in anger, but mommy and daddy tell him the more you walk and strengthen the left leg, you will not fall. Now that Nicholas is off chemotherapy, he is starting to eat more food and getting his taste buds back. The OT and PT sessions continue to get the best out of his. Jen is working on plate carrying since he is starting to eat more lunch from school and has to take his own tray, independent skills, coloring in which during all the chemotherapy he did not want to paint because he did not want to get dirty and get sick with all the dirt. Now Jen has him finger painting and even painted his face one day. Thanks Jen. Diony is seeing more of Nicholas giving more of himself of walking stronger and balancing better during PT sessions. Nicholas still walks with alittle limp, but as he looses more weight and exercises more with OT/PT and during PE at school by the time school rolls around for 2012-12 school year, he should be walking more stronger. The one thing daddy told the summer camp after filing out the application, is to get Nicholas swimming everyday and getting back the strength in his lower waist and into his left foot. Nicholas is all excited to head to summer camp and happy to know he will do more swimming and by the end of the summer if things go right, his mediport will be taking out. After doing the Safari project, Nicholas is driving mommy and daddy crazy with animals and watching animal kingdom and interesting how he explaining the animals to mommy and daddy. He is giving mommy and daddy a course on animals in the African jungle. Now Ms. Kasimow has the learning the 50 states and flags. Memorial day weekend he spent time with the family upstate. Mommy is happy that Nicholas is talking more spanish with her, he still understands everything she says, but the speaking is coming slowing and surely.
May 1st -May 15th: Nicholas went to get his monthly blood test and no change in weight and height from his test in April. He is still at 80 pounds and 51 inches in height. His oncologist likes the improvement of Nicholas and his mobility and body movement is improving. The oncologist told mommy that either August before school starts or December during thr Christmas break, Nicholas will be having his mediport taking out hos chest so he can join the kids in more activities of contact and running around. having a port in his chest sure does cut down on playing around with a kid having a mediport in his chest. She had him do some writing skills on his visit and came away smiling with the neat work Nicholas did. During the move, Nicholas donated his orthapedic tricycle to the Pediatric Oncology Department at The Brooklyn Hospital Center since he out grew the bike and wanted to give it to a kid who will need it to get better. The tricycle was a big help on getting Nicholas back walking and gave him a confidence of trying his best and working hard to get better each and every day. Now we have to get him a bicycle that fits his body to get the exercise. Ms. Kasimow sure knows how to get the best out her kindergarten class. She has the kids doing a Africa Safari Jungle Project that every kid had to pick out a animal. They had to research, draw and color, find ineteresting facts, read in front of class, she gave Nicholas challenging questions on the zebra that he picked out for him to know and understand come Friday May 25th when the class has the presentation for parents and friends. With the help of mommy and daddy Nicholas' research and interesting facts in a class project was a standout for Ms. Kasimow. She kep the project at school for show and tell. The hand writing of Nicholas is what she liked a lot and the facts of the zebra. The family finally moved into the new apt and now mommy has to plan how she will design the place and were furnitures will go. Since we're starting new, she has to go look at new furniture for the liviing room, a new bed and desk for Nicholas and that is about it. Daddy is just listening yo mommy about were mommy wants the furnitute to be put. The landlord put the child guards in and next is getting some blinds. The BOE gave the family Nicholas IEP for the summer and for the 2012-12 school year that was finalized. Daddy and mommy will fight it after the evaluation of Nicholas on day 1 of the 2012-13 school year to see how far he has come with the PT/OT over the summer. The family wants to thank all the special people who helped us during the move and gave us the much support and caring. Family and Friends WE SAY THANK YOU.
Apri 16th-Apr 30th: The final two weeks for the family took a toll on everybody from Nicholas, mommy and daddy. First the family found a nice 2BR apt, but had the first month and security, but could not come up with a fee, so daddy just started looking for a 2BR apt without a fee. The family finally found a apt getting out before the court date of the 30th. The old landlord was happy to see us leave. He argued with daddy for not moving the big couch, but daddy spoke his mind and walk away. Daddy told him, you're the one putting a child with cancer in the street for a extra dollar and for been greedy. On the 28th the family found a 2BR apt to hold us for a year close to Nicholas' school and therapy. Depending on who takes Nicholas to school, he can jump on the B38 or the G line to to head to school. Mommy tried the bus, but it was full and then she did the train which was more comfortable for Nicholas. Nicholas is happy to have his own room, but for now until we get his new bed he will be relaxing and sleeping in mommy and daddy's bedroom. After getting the apt, mommy and daddy had to fight the Board of Education of NYC. The BOE wants to take away OT from Nicholas saying he doesn't need school based OT. Mommy and daddy fought and argued with the BOE during the conference. The lowest point of the meeting was when one of supervisors of the BOE said if Nicholas has a setback he would get back his 2x30 OT services. from that moment of him thinking that about a kid who just beat 3 1/2 years of battling leukemia was not right. I know he did not mean to say it, but it just came out wrong. He apologize and the meeting went on. Mommy spoke her mind and made sure she did not like the statement that was said. Jen spoke via telephone about how Nicholas still needs his OT services. Now mommy and daddy must make a decision on fighting the BOE for the OT services or just wait to see how Nicholas goes into the 2012-2013 school year after have a summer filled with OT/PT and summer camp at Sunrise Day Camp. He will lose weight and with the swimming at camp his left leg will get stronger. he will go to camp MWF and therapt TTH. So at the end the BOE will give Nicholas 4x45 for PT and once a month look at OT. We hope with the new start it will be fresh and smooth and things will look up for Nicholas, mommy and daddy. With all the meetings, moving out and headaches, Ms. Kasimow was very happy to see continue his solid work in class and concentration of doing his work in class, projects, homwork and he weekly reading and writing at least one report of a book he read.
Apr 1st-Apr 15th: Nicholas was back in the hospital for his monthly blood test. First he went to for PT in the hospital. He got evaluated and was just working on exercise sitting down so the therapist can see how much power he can move from his waist. Once the PT was done it was trip upstairs for a blood test. During his wait to get his blood test, Nicholas made a wooden airplane with a hospital volunteer. He went up 1 pounds to 80 and is still the same height at 51 inches. His blood results was good from his test in March and the oncologist gave him multivitamins to take. He is losing weight and his bones are getting stronger. The left leg is still weak and everyday with hard work it is getting back it's strength. Nicholas had a great Easter weekend as he spent it with his grandmother, cousins, uncles and aunts in upstate New York. The weather was great so the kids had a chance to run around. Good Friday Nicholas walked with mommy, daddy and his cousin Karina during the procession. He walked half and got a ride in the stroller when he was tired of walking. The spring break week was full of homework and catching up with makeup classes with Diony for PT and Jen for OT. Diony continues to see progress in Nicholas and his body is starting to change that his learning more to control his fall. The more independent skills he is doing with Jen, the more he is improving of doing stuff by himself. The family continues to apt hunt before the April 30th deadline to get out. The family saw a couple nice apt, but to far from Nicholas school. Since Nicholas walks slow we can't go to far and have to be close to a train or bus to go to school and back home in time to get ready for his ride to take him to OT/PT during the week. Even though the moving process is frustrated, Nicholas positive and upbeat attitude of finding a new place is keeping mommy and daddy smiling. The landlord continues to eye the family down everytime we step outside his building. You can see the look in his eyes of when are you leaving. Daddy paid the rent for April and now the mission is to find a new place to live and not let the marshalls throw us out and not make the landlord win. The next blood test is on May 15th.
Mar 15th-Mar 31st: Nicholas had two fun hard working weeks to finish off the month of March. In school Ms. Kasimow continues to get the best out of him in reading, math and writing. He got a writing and reading award for reading books and writing about the books that he could understand and read in front of the class explaining the book he read. Math is getting tougher for him as his teacher started putting some double numbers to add and subtract in his homework to see how far and how much he understand. Some problems he understand and the ones that he does not he breaks it down using pictures or sticks. The kindergarten class went to Museum of Natural History to see a up close animals from the African Continent. Nicholas had a blast talking about the giraffes and zebras. The end of the month daddy had a meeting with PS 11 in which they want to take away school based OT from Nicholas after he was evaluated. The evaluater said that Nicholas did all the basic things at school that is done for a kid his age. Nicholas can't tie his shoes, can't put on his foot braces, still has problems balancing and carrying his lunch tray, bending down and pulling his pants all the way up, and other things. Nicholas was lucky this year with no snow that he did not have to wear his orthapedic shoes and got a chance to wear his sneakers with his braces. Daddy did not like the decision and is fighting the Board of Education of not taking away the much needed OT. If OT is taken away they will give Nicholas now 4x45 for PT. Nicholas is getting better in some independents things, but with the OT he will get better and more focused on what he is doing. So for now daddy will wait for another meeting to make sure Nicholas still has OT. Nicholas got his new foot braces in which he put cars as his decarations. Nicholas' OT therapist Jen is finally getting him to do hand/finger painting and enjoying art to improve hand and finger movement. While Nicholas was having chemo he stayed away from paint and things that will get him dirty just not to get germs. Now that chemo is over, he is back of painting and having fun with colors. Jen is also working on balance and tying his shoe laces, but first he has to get adjusted of bending over and tying his shoe laces. Diony is seeing more strength and endurance in Nicholas during PT workouts. The left leg continues to build up. The family continues to look for a new apartment before the April 30th deadline. Life is funny that when mommy takes Nicholas to school, the landlord is looking at them likes he waiting to see out decision. Every morning since the court case he stands outside or has one of his co worker stand outside and looking. The landlord also has to watch what he is saying that he kicking us out. What he really needs to say is I'm greedy and I'm putting a child with cancer in the street and when his white cells numbers dropped in November, I raised the rent for a extra dollar. Financial racism is what Fort Green/Clinton Hills Brooklyn is becoming. Forget the loyal folks who were her for 13yrs, I want more money and I will put you in the streets. Congrats to Ann Sutphin and her team members for completing the BIG CLIMB-COLUMBIA CENTER in Seattle on Sunday 3/25 in honor of Nicholas Modestin for the Leukemia & Lymphoma Society. Ann finished the climb in 14 minutes and Nicholas' picture was on the 59th floor. Thank Ann and your team for the special honor and special t-shirts for Nicholas. THANK YOU.
Mar 1st-Mar 11th: A week later after his eyes got red from the chlorine, Nicholas goes to the hospital to get a check and some antibiotics to clean out his eyes. Rough couple days at school to start off March. First he falls down hard on his buttocks during recess and goes to the nurse. The nurse gives him ice and sends him back to class and then he gets a tummy ache for eating a fast lunch to enjoy recess and gets sent to the nurse, but this time a little fever that later went down when he got home. Nicholas is one tough kid who does no like to visit the nurse or go home during school time. HAPPY BIRTHDAY NICHOLAS SEBASTIAN MODESTIN 6 YEARS OLD ON MARCH 7TH. This year Nicholas wanted to celebrate his birthday with his classmates with pizza, cupcakes and ice cream. His classmates were happy for the pizza and theere eyes lit up with joy for the cupcakes and ice cream. After his little fiesta, Nicholas had PT/OT in which he got a solid workout in to end his day. Once he got home he opened up his gifts and cards. Two days later he went for his blood test at the hospital for his monthly check up. He gained back two pounds that he lost and is up to 79pds and is still at 51 inches in height. Now the weather is nice and no snow in sight, Nicholas can start doing more outdoor activities to lose off the weight he gained around his waist that put on while he could not walk early fight to beat off leukemia. His vital signs and numbers from the 2/9 visit was good and now just has to lose the weight. Once summer camp starts in which he will be going three days during the weeks and the other two for therapy, his body will change. He got a Thomas and Friends puzzle as a bday gift from the hospital. Nicholas and other kids from The Brooklyn Hospital were big stars at The ArtWorks art show at NYU on 3/11. The kids got a chance to show out the Aquarium painting they did. First Nicholas got interviewed about what part he drew of the Aquarium and then the whole group got a chance for pictures and talk about the picture they drew. Thank you ArtWorks. Ms. Kasimow got Nicholas working hard again, this time a family tree. So mommy got a design of how to build the tree while daddy started doing the research. Nicholas wanted to put pictures of mommy, daddy, uncles, aunts, cousins, grandparents and his great grandmother. Once the project was done, Nicholas did his presentation that his teacher was happy. The next appointment for Nicholas is on Friday April 13th to get his monthly check up. The family continues to look for apartment.
Nicholas working out on treadmill during PT at hospital.
Feb 13th-Feb 29th: Nicholas finished off the month with his hard work both in class and his therapy. During his winter break he had to get fitted for new braces. Since he is off the chemotherapy medication and no steriods, his foot is growing. The braces was small and his foot was hurting. The foot specialist measured Nicholas for new braces and he would getting the new ones until March 13th. During time with no braces, he will learn more of controlling his body without the braces. For two day he went away to his summer camp and spent a day doing arts and crafts and swimming. Life is funny. When Nicholas goes indoor swimming, his eyes come back itching, but when he swims outdoor during the summer, his eyes never itch. Must be the indoor chlorine that does not get a chance to breath out into the air. Diony continues to see the improvement in Nicholas during PT and he is happy to see that everyday that his left side of his body is getting back the strength that it needs. He has Nicholas doing a lot of running in space to increase his speed and climbing for leg strength and to see balance and coordination. He also worked out with Shani at the hospital and she worked him hard. From treadmill to red light green light, power walking and medicine ball exercise. Jen is also happy in the independent progress of Nicholas doing things by himself. He putting on his jacket more by himself, getting his pants up more by using more of his knees for a lift and overall getting more how to use his whole body. The family continues to look for new apartment and wanting to get out and find a new place by April 1st. Ms. Kasimow continues to get the best out of Nicholas and it is working. His writing, reading is getting better with reading a book a night along with writing what the books is about. His math work is getting stronger. Thank you Mr. Stephens for showing Nicholas how important math will be to him early in k-thru-6.
The 4th annual Nicholas Modestin Toy Drive for The Brooklyn Hospital Center Pediatric Oncology/Hematology Unit was a great success. Thank you PS 11 Student Body, Faculty and Parents for the toys, New York Yankees and the cancer foundations for your checks to make Nicholas buy toys for his friends battling to beat there cancer. THANK YOU ALL.
Feb 1st-Feb 12th: Nicholas is now starting to participate more in playing activities in his physical education class. He is feeling more comfortable of moving his body around and catching his fall after bumping into a fellow student. One day he played soccer and even though he fell a couple times, he enjoyed himself that his fellow students were happy to see him running around with them and the teacher was happy to see running around and playing. Everyday the body is getting stronger and the left side is building up the strength that it lost. Diony and Jen continue pushing Nicholas to a limit of getting a better hold of his body and build up stamina. The coordination has continue to improve with hard work. Nicholas went for a blood test on Thursday 2/9 and came out looking good. His oncologist was happy to see him glowing with joy and happiness. He gained 2 pounds in which we knew was going to happen, but he went up 2 inches to 51 in height. We did not get the results of the test, but will get it later. The next blood test is a day after his Bday on March 8th. Nicholas had a great fan as Andrew Sutphin donated $100 to the Brooklyn Hospital Center Pediatric Oncology Unit in honor of Nicholas. Thank you Mr. Sutphin. The best is yet to come on March 25th in Seattle Washington. Ms. Ann Sutphin sister of Andrew is part of a team that is climbing The Big Climb in honor of Nicholas Modestin. She is part of a team that will be climbing the stairs of the Columbia Center - the tallest skyscraper in downtown Seattle. They will climb 69 flight of stairs, 1311 steps and 788ft of vertical elevation. All proceeds benefit the Leukemia & Lymphoma Society. The Modestin Family will be rooting for Ann's team. Thank Ms. Sutphin and your team for the great honor and doing this special event for Nicholas. Ms. Kasimow continues to challenge Nicholas and the K-110 class at PS 11. She has given Nicholas some good Black History Month projects that he has to read first and then questions and answers in which he has to write about. She has gone from MLK, Rosa Parks, Jesse Owens and Harriett Tubman for now. Nicholas went bowling at his friend Jennifer's bday and he came home so happy after having two strikes during the party. The family continues to look for a apartment and hoping to get one soon so we don't have to give the landlord no more money.
Nicholas with cousin Laura and Anthony.
Jan 23rd-Jan 31st: Everyday Nicholas is growing and now his feet is growing as he will need a foot brace in the upcoming weeks. When his winter break comes, he will be going to his foot doctor and going to physical therapy. Nicholas' PT at Support By Design Diony is happy with the progress of Nicholas' workout. For every workout, his left side of his body and left leg is getting stronger and his mobiolity to move side to side is stronger with more balance and coordination. Couple days he went to school without the foot braces and his teacher and para were happy to see him walking strong and playing with his classmates during recess. Ms. Kasimow continues to praise Nicholas on his hard work in school with much focus and ambition to learn and get better in everything he does. The homework she gives to Nicholas has him thinking and working alone and getting adjusted better with grammar and spelling. His independent skills have made a major improvement with his work with Jen his OT therapist at SBD. Jen is now working on tying his shoelaces, mix of PT/OT to put mor coordination and strength in his body, independent work that he has a chance to figure out how to get out of a situation and like Diony working to build back up his left side. The family got good news and bad news the last week in January. Back in mid October when Nicholas white blood cells, the landlord wanted to get us out to raise rent and gave us notice. November he gave us 30days to leave and with Nicholas white cells still low, the family could not move. Once his numbers came back up to 5.1 from 1.4, we had to go to court to ask for more time to look for a place. After going to court, the judge gave us a break back not paying back the full amount of rent we owed, because the landlord left us with cold water in the kitchen sink, never painted the walls in teh bathroom that are pealing and with Nicholas battling leukemia, he gave 90 days to find a new place. The family has till April 30th to find a new place. We just have to leave since the landlord is more about money and doesn't care about Nicholas' health and we have to make sure that we don't go to far away from his school and to make sure there is transportation to get him to and from school. We just have to hope for the best and stay strong and everything will fall in its place. Nicholas is beaten his cancer and everyday he is taking big steps to get back walking strong and to run fast and the family is staying together to get through all these tough situations that we're facing. I want to thank our lawyer Nina for helping us in court and all the lawyers who gave daddy advice on fighting the landlord and to all the organizations and foundations that are helping us out during these tough times.
Nicholas flushing out his mediport after his last spinal tap 12/15/11.
HAPPY NEW YEAR 2012!!! Jan 1st-Jan 22nd: Nicholas brought in the new year full of joy and smiles as he got closer to having his last chemotherapy medication treatment on Jan 12th. Nicholas walked into the oncology unit with mommy happy knowing no more 2 or 3 injections into his body. His lost 1 pound and gained a inch in height in which he is at 50 1/2 inches. Also during the early part of the month, Nicholas went to see the nuerologist to check his body movements. School is going good as Ms. Kasimow has him writing more about the characters he is reading and is starting on Black History project. First it was MLK and next up Rosa Parks. Math he is improving with word problems and figuring if the question is addition or subtraction. Sasha from the Leukemia Society and Kristen went to Nicholas class K-110 to talk the class about Nicholas 3.5 years battle to conquer his cancer. The presentation was great and the questions from the kids were stright to the point that showed Sasha and Kristen they know a lot about Nicholas. Great News on Nicholas Modestin. After three and half years of battling to conquer his Leukemia in which he has climbed over many and big obstacles, Nicholas had his last chemotherapy treatment medication last week Thursday 1/12. Thank you god for giving him strength. I want to thank each and everyone of you and your families for your support, caring, love, letters, emails, cards and phone calls. Now he will be on medication for the next six-to-eight months and having monthly visits to the oncologist for blood test. Then sometimes during the summer his mediport wil be taken out. The bravery of Nicholas continues as he is working hard with all his determination and ambition in physical and occupational therapy to get back 100%. He wants run fast as his classmates and as he says"I want to run faster than my daddy". I told him I will get back in shape and one day run the NYC Marathon in honor of him and other kids battling cancer. Thank you and god bless. PT and OT is getting intense everyday that his coordination has a major improvemnet. His next appointment is on February 9th to get his blood tested.
Nicholas resting after last spinal tap on 12/15/11.
Nicholas getting ready for last spinal tap.
Tuesday, February 15, 2011
Dec 12th-14: Nicholas continued to work hard to get back the strength in his left leg.
12/15th: Nicholas had hisast spinal tap of his three year battle of leukemia cancer treatment. . The day was full of smiles and joy as
Nicholas talked with the oncologist, nurses and child specialist. He got his spinal tap late in the afternoon at 230pm because of a full hose in PICU. He lost one pound and is at 76.5 pounds and is still at 49.5 height. After getting his spinal mommy had to give him his 40hrs pill at 230pm on Saturday and 60hrs pill on Sunday morning. His next appoinment is on Thursday January 12th in which he is scheduled just to get a dosage of vincristine. 12/16th-12/31st: After missing two days school due to his spinal tap, Nicholas was back in full force before Christmas Break. During the week he had his Christmas concert show in which one day the class sang for the parents and the other day for the students. The only bad thing during the week is that he fell during recess and bumped his head. Diony and Jen continue to make Nicholas stronger and having him understand on how to control his body. Christmas weekend was spent with his aunts, uncles and cousins in Newburgh. Santa treated Nicholas good. The Christmas Break started with two sessions with Shani with PT at the hospital, did his homework package for the holidays, went to a holiday basketball foundraiser " Swish For Kids" for kids fighting cancer and played with members of the St. Francis College Men's and Women's Basketball team. He got tips of playing the game and was pictured in the Home Reporter Newspaper throwing down a spectacular dunk. Thank
you PS11, New York Yankees and all the foundations and great people for making the 4th annual Nicholas
Modestin Toy Drive for the Brooklyn Hospital Center Pediatric Oncology Unit. Nicholas did not attend the party
on the 17th since he was feeling bad with a tummy ache.
Dec 1st-11th: Great News. Nicholas' white blood cell count numbers are back in the 5/6 range. Everybody is happy with the results. He went to the hospital four straight Tuesday's for blood test. The oncologist put him back on medications after taking hioom off one week when the wbc numbers went down to 1.4. Nicholas is now back in the groove with PT and OT. Shani saw once during the week and was happy with his productivity and will see him twice during the Christmas vacation. Diony and Jen put him to work hard since he missed a week of sessions. Diony continues to see more power and strength in his left and coordination and Jen has seen a big jump in motor skills. Ms. Kasimow is all smiles with Nicholas concentration and consitent work in the classroom. She has him reading a book a night for 30 minutes and write a small resport of how he saw the book after reading. The one big thing all the therapist are very happy about is that Nicholas is running a little more. He is controlling his body better. The toy drive and PS 11 keep delivering gifts. THANK YOU PS 11.
Nov 23rd-Nov 30th: Nicholas went back to school the day before Thanksgiving and he was back in the groove
of academics. Thanksgiving was a blessing for the family. The family ate dinner at Aunt Michele's house and the
weekend Nicholas had his big surprise from Candlelighters. He went to see his favorite TV band "The Fresh Beat Band" down at the New York Stock Exchange. He went with mommy and his cousins from upstate.Mommy had fun watching Nicholas full of joy and happiness when The Fresh Beat came out to sign two songs. He was
dancing and singing. Later on Dora showed up and brighten up his day. Fianlly Santa showed up and gave
Nicholas a great gift that went straight to buying the whole collection of race cars from the movie
Cars 2. The rest of the weekend he caught up on all the homework. Good news came after Nicholas took his
blood test on the 29th. His white blood cells count went up to 4.0 from 1.6. Now mommy and daddy can go to sleep in peace till his next blood test on December 6th. The Nicholas Modestin Toy drive for the Brooklyn Hospital Pediatric Oncology Unit got a big boost today 11/30. First PS 11 sent a first batch of toys and the New York Yankess sent more toys and goodies. THANK YOU PS 11 and NEW YORK YANKEES. All the weight he lost he gained back, but looked strong during his return to Ot/PT with Jen and Diony. The four Tuesdays Nicholas has visited the hospital. He is scheduled for a spinal tap on Thursday 12/15.
Nov 16th-22nd: With the low white blood cell count, Nicholas was home for five days. No school, no
therapy and no playing. Daddy picked up the homework for the week from Ms. Kasimow. Nicholas
missed out on the publishing story day in which he had to read in front of the class and parents.
For the five days Nicholas got bored after doing his homework as he wanted to go to school and therapy.