Date of birthMarch 7, 2006
Occupation
Spouse
Contact personAdriana & Felix Modestin Jr. (646) 623-3844
Medical information
Type of Disease/ ConditionChildhood Cancer Leukemia - Diagnosed 9/22/08
DiagnosisHigh Risk Acute Lymphoblastic Leukemia (ALL)
PhysicianDr. Swayam Sadanandan MD - The Brooklyn Hospital Center (NY)
Treatment to DatePhysical and Occupational Therapy
Current StatusCancer Free
Personal Information & Needs
 (SAINT PEREGRINE PATRON OF CANCER PATIENTS - LOOK OVER NICHOLAS TO PROTECT AND SAVE HIM. YOU WERE FAVORED WITH A VISION OF JESUS COMING DOWN FROM HIS CROSS TO HEAL YOUR AFFLICTION. ASK GOD AND OUR LADY TO TAKE CARE OF NICHOLAS OF WHOM WE ENTRUST IN YOU)
Please give me a couple of minutes of your valuable time to tell you about a amazing fun loving 7-years old boy. His name is Nicholas Sebastian Modestin.
He is full of life and has a big heart that brings joy and happiness to all those around him. His cheeks and bright smile just melt you away. Nicholas was rushed to The Brooklyn Hospital Center (TBHC) in New York on Saturday morning September 20, 2008. He had a high fever and paleness in his face and body. His blood test showed a dangerously high white blood cell count and low hemoglobin, which required immediate attention. He was transferred from the emergency room to the pediatric intensive care unit where he received blood transfusions and continuous monitoring over the weekend. After several blood tests, a bone marrow aspiration and biopsy on Monday September 22nd, Nicholas was diagnosed with High Risk Acute Lymphoblastic Leukemia (ALL), very common childhood cancer at the age of 2-years old (30 months).
 (NICHOLAS IN HOSPITAL ROOM AFTER LEAVING PEDIATRIC INTENSIVE CARE UNIT)
Nicholas was given his chemotherapy on Tuesday September 23rd. The doctors and nurses started working on Nicholas ASAP. He got his second chemotherapy on September 30th, third chemotherapy on October 9th and fourth chemotherapy on October 15th. After three surgeries and a long month of unpleasant side effects and complications, Nicholas was discharge from TBHC on October 17th. During one his chemotherapy treatments in the early stages, doctors discovered a adrenal mass on Nicholas' left side of his stomach that was incidentally identified and surgically removed on October 6th.
 (NICHOLAS AFTER SURGERY TO REMOVE MASS ON LEFT SIDE OF STOMACH & REINSTALLING MEDIPORT ON RIGHT SIDE OF CHEST ON OCTOBER 6TH)
The one big complication Nicholas had during the first cycle of chemotherapy called "Induction Cycle" was that he suffered a rare side effect of his treatment shortly after his first spinal tap, where he developed lower extremity weakness and rigidity. This effect showed signs of muscle weakness in his legs that he couldn't stand up or walk on his own late Sunday night on September 28th. We also saw a little weakness in his hands as he could not get a good grip on his sippy cup while drinking water or juice, so we decided to let him drink all liquids out of a bottle in which was much easier for Nicholas to grip on after going through the first round of chemotherapy medications.
 (NICHOLAS EATING HOME COOKING ARROZ CON POLLO WITH MOMMY IN HOSPITAL ROOM)
Once Nicholas' oncologist, Dr. Swayam Sadanandan MD saw what was going on, she ordered Nicholas to get physical therapy and occupational therapy. On Tuesday 10/21 Nicholas took a bone marrow test and on Thursday 10/23 we received good news, that he was thankfully in remission and receives his treatments as a outpatient at TBHC Department of Pediatric Hematology/Oncology Unit. Nicholas completed the second part of the fourth phase of his treatment called "The Delayed Intensification I Treatment" that started on March 16th in the early part of May. After having a blood test on May 11th and on May 18th, in which his total numbers came up short to start his fifth cycle, Nicholas' blood results after a blood test on May 21st came back good on all three counts of his red blood cells, white blood cells and platelets to start his fifth cycle called "Maintenance I Treatment. This was a 84 day/12 week cycle, that included most his chemotherapy medications given at home orally, a bone marrow to see what stage of cancer Nicholas is at and spinal taps. A bone marrow and spinal tap was given on May 21st, along with a dosage of Vincristine (VCR) a strong chemotherapy medication. Nicholas finished the Maintenance I Treatment on July 16th after getting a dosage of Vincristine chemotherapy treatment. He started the "Maintenance II Treatment" on August 13th in which he got a spinal tap and a dosage opf vincristine chemotherapy medication. Since the start of the treatment, Nicholas is going for chemotherapy at least twice a month now. During the first couple visits, he has had back-to-back spinal taps and a dosage of vincristine chemotherapy medication. His body is doing good and just a couple days in between of low appetite.
Nicholas' next visit to the oncologist is in October 12 2015 to get a blood test.
Nicholas' toughness and fighting spirit is helping him to beat his battle against cancer.
On May 27th, 2009 Nicholas had a good day and a bad day. He had a good day with his speech therapist and then later on in the afternoon out of nowhere, he developed a fever of 101.7. We first called his oncologist and she told us to give him tylenol in which the fever went down. Later on at night around 1030pm, his fever went back up to 102 and we rushed him to TBHC in which he was admitted. Right away they treated Nicholas as a flu patient instead of a fever patient just to be on the safe side with all the viruses going around and with his defense mechanism so low. He got antibiotics to control the fever and to clean out his system of any bacteria and fight off infections. What a difference Nicholas in the hospital this time around. This time around he is more relaxed. He got a coloring book from the child specialist in which he colored with mommy. Nicholas was in the hospital for several days until he got discharged on Sunday May 31st. With Nicholas in the hospital, his oncologist gave us good news that his bone marrow results came back remission which is good news that all his numbers of his red blood, white blood and platelets numbers went up. With his defensive mechanism down thank god it was just a fever. The one bad thing about Nicholas in the hospital, his fifth cycle of his chemotherapy treatment was stopped until his body is ready and clean to start over again.
The next day after coming out the hospital, Nicholas had to visit his oncologist to take a blood test to see the numbers of his blood counts and platelets. If the numbers were low, the chemotherapy will be delayed for another week to start up again and if the numbers were good, they will restart the fifth cycle as soon as he got home. He was upbeat and playing around in the playroom with blocks and walking around doing some walking exercise since he missed two physical therapy classes while he was in the hospital. Nicholas' numbers came back good and after a checkup by his oncologist, he was ready to restart the fifth cycle of chemotherapy.
 (NICHOLAS FIRST DAY AT OPTIMUM CARE REHAB CENTER PLAYING IN GYM WITH MS. YASSAMAN (R) AND MS. BROWN (L).
Nicholas is now going to the hospital two-to-three times a month for a blood test or chemotherapy. On July 1st, Nicholas started going to Optimum Care Rehab Center. He will be there for six weeks during the summer in which he will be getting speech, occupational and physical therapy and then take a break and return in September till June during the 2009-2010 school year. Nicholas' first day at the rehab center was a good one. This was the first time in eight months for Nicholas since daycare he was around therapist, teachers and people outside the hospital and home as he greeted them with open arms and a smile when he walked into OCRC. At first he was shy and looking to see who was around to help him get back strong in both body and mind. We first met Ms. Yassaman his speech therapist. After going over the lesson plan for the summer, we left Nicholas alone to enjoy and learn during his hour speech session. She worked with Nicholas on clarity, conversation, words, played questions and answers and finally went over his positive and negative points of his speech to develop what Nicholas needs to improve on what he lost and gained since he got diagnosed with ALL. Once he finished with Ms. Yassaman, he went over to Ms. Brown for occupational therapy. At first they had a couple battles at the start of the session, but she won him over and had a good session. They communicated as Nicholas' followed instructions while having fun playing and working out in the gym. Ms. Brown worked on his strong and weak points of his body so she could determine which side has to be worked on to build back up his body and mind. Ms. Brown realized the left side of Nicholas is the weaker side, so whatever activity Nicholas works on during his occupational session, she will force him most of the time to pick up, bend and throw from his left and cross his body over to his right side. His first day of physical therapy class was cancelled and his official first day of physical therapy, he had a good session. The instructor Ms. Samantha went over a plan that she wanted to attack of working on his body to strengthen up his legs, ankles, waist and upper body.
 (NICHOLAS IN HIS PEDIATRIC WALKER)
Nicholas had a blood test July 6th for his chemotherapy on July 16th during the blood test, his oncologist Dr. Sadanandan gave us the green light to start looking into swimming classes for Nicholas, so he can strengthen up his legs and waist. Before Nicholas got diagnosed with cancer, he was taking daddy and son swimming classes last summer. He loves the water A day after the sixth, he finally got his pediatric walker to help build up his strength and his confidence. On July 10th, Nicholas got his body fitted into the walker by his physical therapist Tasha at TBHC. As Nicholas got fitted into his walker, you could see the smile on his face, knowing he has a walker to put the muscles and strength back into his legs while walking around. Once in the walker, he walked around the physical therapy department. The only problem he had the first several days in the walker, was that he had to learn to turn his body with the walker instead of just turning his body first and then the walker. Once he learned to adjust his body side-to-side and front-to-back in the walker, he looked determined to improve his his legs and to get back to walking and running alone with no support. After walking out of physical therapy, Nicholas walked upstairs to visit his oncologist and nurse Nelly to show off his walker. We want to thank nurse Lynda and Tasha for finding the walker for Nicholas.
After spending six weeks of his early summer at OCRC, Nicholas finished off August spending five days at Sunrise Day Camp. Sunrise Day Camp is dedicated to children with cancer in Long Island, New York. Nicholas missed camp all of July and early August, because he was going to rehab. The first day of camp Nicholas was a little nervous, but happy to attend camp were he can have fun and enjoy himself with kids his age and kids battling to conquer cancer. He first met Dean, who was the bus counselor for Sunrise for kids traveling from TBHC to Sunrise Day Camp. Nicholas traveled with mommy to camp. Once he got to Sunrise, he was all smiles when he saw where he was at. Nicholas met Lindsay after walking out the bus. Once he got out of bus, he jumped into his walker to walk to his building. During his walk to his building, he met Sunrise Camp Director Michele Vernon, Assistant Camp Director Amy Pilott, Cindy who is in charge of the Acorns Kids and Natalie the volunteer who will be taking care of Nicholas. After giving Nicholas his backpack and talking to us about the activities for Nicholas at Sunrise, mommy said goodbye to Cindy and Nicholas. The camp directors, counselors and volunteers had good things to say about Nicholas during his stay at Sunrise. Once he got out of his shyness and realizing what the camp offered, Nicholas had a blast. They told us Nicholas is a determine and ambitious kid to beat his cancer and to walk again. During class he was focus during arts and crafts, finger painting and reading time. He loves music and had good times during music class. The bond he had for the love of trains of Thomas & Friends. He had Natalie running all over the place when they hit the playground and that was the one place he walked without the walker while playing around with his camp friends.
 (NICHOLAS HAVING SOME RELAXING TIME TO HIMSELF DURING HOSPITAL STAY)
Dr. Sadanandan, Chief of Pediatric Hematology and Oncology Unit and Dr. Aziza Sedrak MD, are the main two doctors taking care of Nicholas. (Dr. SADANANDAN - Dr. SEDRAK - NICHOLAS & MOMMY AT THBC 2008 CHRISTMAS PARTY FOR CANCER KIDS)
Dr. Sadanandan, sent us for a second opinion at Sloan Kettering Memorial Hospital, a top cancer care hospital for kids in New York City, to see Dr. Peter G. Steinherz on October 29th. Nicholas was full of smiles at Sloan Memorial, getting along with the doctors, nurses, medical students, social workers and other kids battling cancer in the playroom. Friends of Karen a organization that helps families with kids fighting cancer, is now helping my family with some financial assistance. FOK paid for the second opinion appointment at Sloan Memorial. There help was a blessing. We first met Dr. Lisa Giulino MD. We spoke about the treatment Nicholas was having and she answered all our questions. Dr. Guilino tested Nicholas' reflexes, as he followed her commands. His reflexes and coordination was good even though he did most of everything sitting down. After Dr. Guilino spoke to us, a Dr. Shukla went more into depth about his condition. The main concern for us was Nicholas' legs and what was the reason behind his inability to walk and the cause of the swelling in his brain in the early stages of his treatment. Dr. Shukla told us that during chemotherapy, complications of the mass in his stomach sometimes happens, swelling of the brain can be caused by several combinations of chemotherapy medicines at a kid his age and can be reduced. We thank god the swelling went down in his brain. The main topic of the conversation was getting Nicholas' strength back in his legs to walk again.
 (NICHOLAS AT HOME WEARING LEG BRACES TO GET STRENGTH BACK INTO LEGS IN DECEMBER 2008)
He told us Nicholas will run and walk again and will be done with hard work and exercise during his physical therapy sessions with or without the leg braces. We then covered the whole Induction Cycle and the complications it had on Nicholas, in which the chemotherapy had to altered and 2 doses of IT MTX had to be given during the Consolidation Cycle on Tuesday November 11th. After a spinal tap, IT MTX and other chemotherapy medications given to Nicholas. He came out good after this big challenge on a long day that his body was ready to continue the process of conquering his cancer.
 (NICHOLAS GETTING CHEMO WITH MOMMY AFTER SPINAL TAP IN NOVEMBER 2008)
Dr. Steinherz one of the top Pediatric Hematologist and Oncologists at Sloan Memorial, gave us the final rundown of Nicholas and assured us that the chemotherapy treatment was given in the proper protocol at TBHC. Dr. Steinherz, along with Dr. Giulino and Dr. Shukla explained more in depth about ALL and asked us if we wanted to change hospital and let Nicholas get his treatment at Sloan Memorial. We decided to stay at the TBHC, one because it's closer to home and my wife Adriana feels comfortable with the doctors and nurses at the pediatric cancer treatment center at TBHC. They told us to call them (especially Dr. Shukla) and give them updates and let the doctors at TBHC know they would like to hear about Nicholas' treatment.
 (NICHOLAS FIRST DAY HOME FROM HOSPITAL PLAYING WITH CARS IN OCTOBER 2008) Life is funny and life always has a way of testing your strength, faith, family and overall character. People sometimes say in life a sickness of a family member can break you down and see how strong you're, but with a kid and your own child, it's a whole different ballgame. A grown kid and a adult can understand and listen to doctor's orders and sometimes defend themselves, but a little kid its all about understanding, listening, strength, caring, friendship and bond with the doctor's and nurses taking care of your child. At first it was tough on Adriana, because a mother's care for her child is special and to see her son diagnosed with cancer was rough on her. The faith of god and praying has pulled us together to reach a goal of crushing and taking out the cancer from Nicholas. Since Nicholas caught mommy crying several times, we set a rule. One rule we have around the apartment is the "No Crying Rule" because for every family and friends who come over to visit Nicholas, if they cry, he will walk over, say their name and say no crying and wipe the tears off with a smile. Nicholas' battle to conquer his cancer treatment will last approximately 3.5 years. The treatment of boys is longer than girls, because of the boys testicles. About 85 percent of all childhood cancer are classified as ALL. WHAT IS ALL CANCER? ALL is a cancer of white blood cells. In this form of leukemia, a change or mutation -- in the DNA of an immature white blood cell, causes the cell to grow and multiply in an uncontrolled way. These uncontrolled cells infiltrate the body's organs and interfere with their function. The cells also interfere with the body's ability to produce other types of cells normally. Most ALL cases (89 percent) occur in caucasian children. Peak age at diagnosis is between two and three years of age. No one is sure exactly what causes leukemia. The cure rate today for ALL is 80 percent. Every phase of his chemotherapy treatment has a different course of visiting the hospital. Since Nicholas started the Delayed Intensification I Treatment, it involved weekly visits for intravenous chemotherapy for one month, followed by daily visits for two weeks and then again weekly visits for three weeks. Some visits required spinal taps, intravenous hydration, and transfusions, making this particular phase quite difficult for the family. We as a family spend many hours in the hospital between our visits and physical therapy. More children die of cancer than by asthma, diabetes, cystic fibrosis, congenital abnormalities and AIDS, combined. Approximately 12,400 new cases of cancer are diagnosed in children and teens in the Unites States each year - 46 children each school day, enough to fill a school bus - and the rate of new cases is increasing by 1 % each year. The average age of a diagnosis of childhood cancer is 6; the average age of diagnosis of adult cancer is 65. The loss of these bright minds and spirits, their potential future, and family trauma cannot be measured in dollars. During the 4th cycle of his treatment in which the dosages get stronger than in other cycles, Nicholas' body took a beaten during the chemotherapy sessions. Since the start of the fourth phase, he lost some weight and his body was weak to move around several times in the first four week span. He could not function and did not have the strength to do his exercise and workout during his physical therapy session, in which also he was tired to cooperate during his speech therapy class. The one thing he has battled and is controlled, is a fever that comes with daily dosage of taking chemotherapy medications at home. While Nicholas was feeling weak during his off days from the hospital, we were concerned that he might need a blood transfusion in which sometimes is needed during this cycle, but after taking a blood test on April 6th, his blood counts came back normal. The only counts that were down a little in the results was his white blood cells. After getting the good news with the blood test, Nicholas was ready to continue the second part of The Delayed Intensification I Treatment, in which started on April 13th.
 (NICHOLAS IN HOSPITAL ROOM PLAYING WTH DIEGO ADVENTURE ANIMAL GAME)
The second four week part of The Delayed Intensification I Treatment had its ups and downs with Nicholas. For starters, he added some weight, strength and height on him. The combinations of chemotherapy medications and legal steriods have made our son a little stronger and a little bit heavy to pick up. Nicholas was always a solid kid and the people who know and met him before getting diagnosed, always said he was tall and solid boy for a 2-year old. This cycle brought out a tough and aggressiveness side of Nicholas that caught us off guard as parents in which Dr. Sadanandan, warned us this will happen. She also warned us, that parents have to be careful of not spoiling their kids during the process of battling cancer and still be on top of them and set limits when kids get out of control. The down side like any other cycle, his appetite had more low days than good days during this phase. This phase of the intensive chemotherapy treatment was completed on May 4th. Since the completion, Nicholas developed late rashes couple days later around his body and head from chemotherapy medications in which is got controlled by benadryl medicine.
 (NICHOLAS TAKING A CHEMOTHERAPY MEDICATION AT HOME BEFORE GOING TO HOSPITAL)
With all the medications Nicholas has had to take since October at home, he likes the taste of some and others he just wants to vomit in which he knows he has to retake it, but the kid is clever and has a plan. Funny thing about kids, colors and daily medications. He started naming his medications by colors. He knows the pink, white, red, purple and yellow ones have to be taken every morning and late afternoon in which one of the medication have to be crushed and mixed with a juice/water to be given after a spinal tap at 48hrs and 60hrs. This is the one he does not like and always gives us a fight to swallow it. Now every night between 11pm and midnight he has to take a chemotherapy medication.
 (NICHOLAS ALL SMILES DRESSED UP AS BUZZ LIGHTYEAR FOR HALLOWEEN AFTER GETTING CHEMOTHERAPY AND HEADING TO A TBHC PEDIATRIC HALLOWEEN FUNCTION)
The second phase of his treatment called The Consolidation Cycle started on 10/28 and it was a long day for the Modestin Family. This cycle required him to visit the hospital 1-to-4 days a week. On this day, Nicholas was the first one to walk in for his treatment and the last to leave as he had to urinate a little more to get the chemotherapy medications out of his body. Between the three of us, I think we saw Thomas The Train movie about 3 times, along with Diego, Curious George and read several Mickey Mouse and Cat in the Hat books. Before Nicholas got diagnosed with cancer, he was at the Hanover Place Daycare for 1 year in Brooklyn. Hanover taught Nicholas the values of life of children his age -vocabulary, numbers, how to utilize sentences, independence and make believe of imagination of his surrounding and objects - drawing - taught him coordination and management of colors and shapes - playing - adapting to different cultures of life, aspect of socializing and enjoying life with other kids his age. The one thing the daycare had Nicholas doing good at the stage of his age, that is surely missed at home due to Nicholas losing his walking ability was his potty training. He was at the point of using pull-ups and underwears and going to the bathroom by himself. Now we're retraining Nicholas to use the potty and sometimes it's a fight to get him to give us warning to pick him up and let him use the bathroom. We also had to got back to pampers, because at the end of every chemotherapy session, Nicholas has to urinate most of the chemicals out of his body and the pull-ups can't hold the amount of urine.
 (NICHOLAS HEADING OUT THE DOOR TO DAYCARE IN AUGUST 2008 A MONTH BEFORE HE WAS DIAGNOSED WITH LEUKEMIA)When Nicholas came home from the hospital, we received help from Early Intervention Program. This program gave us a Speech Therapist, so Nicholas would not lose what he was learning at the daycare and to keep his spirits up. We also got a Physical Therapist to come to our home on weekends to continue his therapy.
The one thing we see in Nicholas, that he sometimes wonders why during his battle with cancer he can't be around people. We had to explain to him in which is tough to a kid his age, that because of his cancer his defense mechanism is low and he can pick up any sickness if around a person who is sick. We explained to him that with his cancer, we had to be careful and just had to go from "home-hospital-home" We have family and friends come over, but they have to come on a clean bill of health in which sometimes they stayed away when a cold or cough hit one in the family and couldn't come to see Nicholas. Now that we're in the fifth cycle, we're still careful of staying, but going out a little bit more.
 (NICHOLAS LISTENING AND READING "CAT IN THE HAT" BOOK DURING SPEECH THERAPY SESSION WITH MR. PORTE)
The last several months our family has been struggling since our son was diagnosed in September. We have been working diligently to keep the pace since this painful change in our lives. Nicholas has a daily battle as he looks to overcome Leukemia Cancer (ALL). While Nicholas pushes hard during chemotherapy and physical therapy, Adriana and I face difficult financial times. Times are tough, because of the daily sometimes hourly attention that he needs. We are having difficulties paying our full payment of rent and keeping other household needs. There is only one income coming into our home right now. This income comes from my freelance and part-time jobs, in which does not cover the monthly expenses of rent, food shopping, and gas, transportation to and from the hospital on a daily basis.
 (NICHOLAS MAKING "I LOVE YOU MOMMY" ARTS AND CRAFTS CHRISTMAS CARD AT TBHC 2008 CHRISTMAS PARTY FOR CANCER KIDS"
When Nicholas got diagnosed with cancer, it was the hardest news for any parents to hear. I thought I was dreaming, what was happening to me (Father) all over again. Reality sunk in again and memories came back suddenly about the past. While listening to the doctors about Nicholas' diagnosis and the intensive chemotherapy he will be going through, I just sat down in disbelief and sadness that cancer struck my family again. I lost my mother to breast cancer when I was 12 and during the times we spent together in which I cherish every moment, she told me to be strong and everything will be alright. I can still remember her voice saying "Sometimes things happen that we don't like and you can't blame anybody, just have faith and pray for the best." During her fight, I learned a lot about cancer in general at a early age with visits to Coco Solo and Gorgas Hospitals back home in Canal Zone Panama, Sloan Memorial and other cancer care hospitals across the US. When cancer hit me twice with Nicholas, I knew the courageous fight he was going to face and challenge upfront. Nicholas and other kids with cancer are my heroes, because no matter what struggles or sickness they're fighting to beat, they always have the sweet gentle smile on them that brightens up your day. The one thing me and Adriana have learned during this battle with leukemia, is how to be patient, calm, have faith, be positive and always have a smile and laugh, because Nicholas can feel, see and knows when one of us is down and sometimes crying. Even though he is a child, he has a big strong heart that can sense things around him. It's tough and hard to see what our son is going through along with other kids and families during chemotherapy treatments. We pray everyday for Nicholas, the other children and families we have met and have bonded with at TBHC. We face the challenge together by supporting each other and by being strong and loving to our children facing cancer.
 (CHECK OUT TIME AND LAST DAY FOR NICHOLAS AT TBHC WITH MOMMY AND CHILD LIFE SPECIALIST KRISTEN ON OCTOBER 17TH, 2008)
Since mid December, Nicholas goes to physical therapy at TBHC 2-to-3 days a week for a hour to fight and to pull hard with all his might and body to walk again. He receives aggressive physical therapy to help strengthen up his legs. He is making big strides of taking big steps. We are hopeful and know that he will make a full recovery. His prognosis is good.
 (NICHOLAS WALKING THE EVEN BARS DURING PHYSICAL THERAPY MARCH 2009)
Nicholas finished the Consolidation Cycle on December 29, and on February 27th he completed the third phase of his treatment called Interim Maintenance I Cycle, that started on January 5th, 2009. During this cycle Nicholas went for chemotherapy treatment every 10 days. This cycle was tough on Nicholas, as the dosage get stronger in every cycle. The side effects of this cycle took a toll on his body, that kept his appetite low and eating came with a struggle. The first round on dosages, Nicholas' body had a late reaction in which he broke out in rashes and his eyes got swollen. Thank god for benadryl medicine which helped tremendously and before every dosage during the cycle, doctors gave benadryl to Nicholas to secure no late reactions. The one thing Adriana doesn't like about spinal taps during chemotherapy is the after effects it has on Nicholas, because if we don't pay attention to him at home after leaving the hospital, a fever can creep up on him at anytime and if not controlled fast, he can end up back in the emergency room. When spinal taps are given doctors tell us to look out for slight fevers.
Everyday is a challenge, everyday is a step forward, everyday might not be a good day for Nicholas with chemotherapy that sometimes dictates the body doesn't want to do physical therapy and everyday is a smile when he knows he gets closer to walking and running again with hopes of one day we can see him returning to kick a soccer ball. His physical therapist Natasha is doing a good job to get the strength back into his bones and legs with and without the braces. She is working hard and fighting with Nicholas to walk again, but getting full attention is a challenge with a 3-year old child to follow instructions. Natasha has beaten all odds to get Nicholas' focus during his therapy. Meanwhile as we see Nicholas positive attitude and smile, the family stays strong and together during these tough times as we struggle to remain present for Nicholas.
 (NICHOLAS WALKING THE STEPS WITH NATASHA DURING PHYSICAL THERAPY MARCH 2009)
One of our main areas of need of financial assistance is helping us to pay our rent in full amount. With the economy in such a state of crisis during these tough economic times, I lost my full-time job back in April 2008, and since that time, I'm continuing to work part-time and freelance, while looking for a full-time job. With Nicholas' sickness, going to different therapies during the week and class everyday in the afternoon, Adriana stopped working to stay home to take care and give our son Nicholas full attention. We have written to the majority of children's cancer centers, associations, foundations and establishments to help us with financial assistance and any other way possible as we go through these tough times with Nicholas. Your help and information will be greatly appreciated. Thank you for your time and consideration.
Nicholas started to realize his fight to conquer his cancer in the later stages of the Consolidation Cycle on what was going on with him. For one, he knows the difference of going to see Natasha or Dr.Sadanandan. With Natasha, "He says toys and games with Tasha" in which he is full of smiles and joy knowing it's walking physical therapy treatment and with Dr.Sadanandan, it's the opposite. He knows once mommy puts the cream on his chest for his mediport to be installed, he knows its chemotherapy and he starts to say "No Doctor". Our family is thankful for the nurses Nelly and Lynda at TBHC Pediatric Hematology and Oncology Unit for the care and hard work they give to Nicholas, Child Life Specialist Kristen Riccardelli for her great support, kindness and upbeat attitude that brought smiles to Nicholas and other kids in the Pediatric Ward during his stay in the hospital, nurses, friends, family members, chemo angels, as well as strangers, who have helped us through this ordeal. I also want to thank my friend Victor and his wife Jenifer for that special day back in October, for bringing his uncle/priest to a visit our home. Padre Vico, gracias por tus bendiciones y palabras para Nicholas y que dios te bendiga. We could not have gotten through this without all of them. We have received support, calls, emails, meals, cards, gifts and care packages, which has made it so much easier to get through the days. We are especially thankful to have our little boy still with us today.
Nicholas is a strong fighter and everyday is a challenge and with his hard work and determination, he will defeat his cancer and get his strength and power back in his legs to walk and run again. We're happy to see his smile and confidence back knowing the challenge and fight he is going through. Nicholas and other kids battling cancer is our greatest inspiration to keep fighting for childhood cancer awareness and hoping for a cure. We are so thankful for the opportunity and hope The Lighthouse Community has given us.
(NICHOLAS 2008 CHRISTMAS)
Thank You & Hugs & Kisses
Adriana & Felix Modestin Jr.
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