Friday, May 9, 2014
Audrey, Justin ,myself and the rest of our family want to thank everybody who supported our team Justin's Quest for the DC Race for Hope for the Cure. It was a beautiful day, sunny and a bit cool. Again, I have to pinch myself that I am at this race to find a cure for brain tumors because my son Justin has one. It is so surreal to see him in the yellow survivor shirt. Thankfully he is a survivor as we pass by the memorial tent of those that passed away from a brain tumor...your heart just breaks. I want to give a big shout out and personal thanks to my dear friend Robbie who I have known for over 36 years. He has been at the race for the past 3 years, but this year he was so instrumental in helping Justin get through the walk. This is a very hard and emotional day for Justin. He is sad yet glad to be helping out to find a cure. It has to be hard for a kid to deal with this.Justin, myself and Robbie walked together. Robbie was great keeping Justin engaged with his wonderful stories. Before you know it the race was over. Justin is so glad to raise money and awareness for a cure. For a moment put yourself in his shoes wearing his yellow shirt thankfully branded a survivor but still not knowing your outcome and destiny with this terrible disease. Her went home after the race emotionally drained and slept for 4 hours. This Monday is another big day for us in Boston at Mass General Hospital for Justin having his MRI and Doctor's appointments. We are praying for the best. I will keep you all posted and thanks again for the love and support!
Tuesday, April 8, 2014
26 DAYS TO THE DC RACE FOR HOPE
We are getting very close to our 5th DC Race for Hope. It is so hard to believe that time has gone by so fast yet in some ways so slow. The Race is such a great event as it has raised so much money to find a cure for brain tumors and raise much needed awareness. There are way to many people dying each year from this terrible disease especially kids. As I have said before it so unnatural and unconscionable for a parent to bury a child. It has to be the worst thing in the world. I can tell you that we know to many people that have buried their children because of their brain tumor. We need to do more to find a cure and more research for pediatric brain tumors. I wake up every day a blessed person that I can see my Justin and give him a kiss before he goes to school and do the same before he goes to bed. The simple things that we all take for granted are no longer simple in fact for our family, they are milestones for Justin. He is about to finish 11th grade and go to college next year. If you told me that 5 years ago I would not have believed it. See, each day we walk on eggshells with Justin, it is very hard to describe unless you are going through it. We still have a hard time especially during his testing which is about every 2 1/2 months between his extensive eye exams and eye mapping and his MRI's. We were scheduled to have his MRI in Boston May 5th the day after the Race but we felt it would be to hard and emotional for him. Therefore, we are going up to Mass General May 12th for his MRI. Justin is excited for the Race but as you can imagine he has a hard time believing that he has a brain tumor and wears the yellow survivor shirt. We hope to see you all out there supporting the Race and Justin's Quest team. Thank you again for your love and support.
Friday, March 14, 2014
5 Year Anniversary of Justin's Diagnosis of His Brain Tumor
It is incredibly hard to believe that Justin was diagnosed with his brain tumor 5 years ago. Upon reflection of this remarkable anniversary we have so many emotions that our whole family has felt and experienced. The time went by so fast. However, I can still remember like it was yesterday receiving the horrific news that Justin has a brain tumor. Justin had an MRI of his pituitary gland because he was about to go on growth hormones on a Thursday. That Saturday, we received a fax of the MRI report to our house that said Justin had a brain tumor. What a horrible and extremely cold way way to find out the devastating news that your 12 year old son has a brain tumor. Of course we were hysterical and in a complete panic. I reached out to many people including speaking with our endocrine doctor on that Sunday. He said as I remember vividly that you need to see someone immediately. Luckily we were able to get into Children's Hospital in D.C. for an MRI that Monday to get a more accurate scan of the area in his brain and as we hoped for a contradiction that he has a brain tumor. We got the scan and it was very hard to explain to Justin why he was getting another MRI, but we just told him we needed more information to get the growth hormones he needed and wanted to grow as he was very short. Audrey and I were a wreck as you can imagine. Justin was sedated for the MRI and I can remember being in the recovery room with him and Audrey. We were stroking his face as he was still asleep and we were very emotional. The nurse on duty was there praying for Justin to be OK. It was an unbelievable scene as 3 days before we were a normal family with no health issues. We were told to come back Tuesday morning to see the doctor and get the results. What a long night for Audrey and I. Justin was clueless as to what was going on. In fact in his mind he was just excited to get growth hormones so he would not get teased anymore about being short. The next morning we arrived at the waiting room at Children's Hospital only to be greeted by social worker who asked to take Justin to go play with toys and, the worst was telling Justin the next day he had a brain tumor. It was the hardest thing I had ever had to do. As one could imagine Justin's response was incredibly heart breaking. 5 weeks later we started our first team for the Race for Hope. Now fast forward 5 years and I can report that Justin is doing as well as can be expected and living like a typical teenager. We have had our moments and some very trying times during this unexpected and unknown journey.Yes he has to wonder about his brain tumor, but he is strong and we have the best medical team for his type of brain tumor at Mass General Hospital. In fact we are monitoring Justin with various tests and MRI's every 2-3 months to stay on top of his tumor and changes. It is very hard to have a child with a brain tumor always walking on eggshells but he is in the best possible situation given his circumstance. Every milestone that he achieves has a much greater meaning and enjoyment than one would have from a healthy child. We feel so blessed to have him around for these milestones. We are very fortunate as so many parents have lost a child to a brain tumor. In fact, the world just lost a very courageous young man this past Tuesday Zach Lederer to his 9 year battle with a brain tumor. A very tragic loss and our thoughts and prayers go out to his family. We can only hope and pray that God will keep Justin as safe as possible. Please go www.curebraintumors.org and sign up for our team Justin's Quest and help us raise awareness and find a cure for brain tumors. I thought it was appropriate to take a moment to reflect where we were 5 years ago till now. We are very thankful for all the blessings for Justin. Thank you for your continued love, support and prayers for Justin. Hope to see you at the Race May 4, 2014.
Sunday, January 26, 2014
DC RACE FOR HOPE MAY 4, 2014
It is hard to believe that Justin has signed up his team Justin's Quest for now 5 years. It has gone by so fast yet life has been a blur and so hazy since he was diagnosed. I was trying to copy and paste Justin's hand written letter that he sent out to so many people for his first race. I will however provide you the text and if you can imagine it in the hand writing of a very scared little 12 year old boy who has a brain tumor. Mind you he wrote this letter about 2 weeks after he was diagnosed. The letter reads as follows: DEAR FRIENDS AND FAMILY, MY NAME IS JUSTIN FRIEDLANDER AND I WAS JUST DIAGNOSED WITH A BRAIN TUMOR ON MARCH 16TH 2009. I WAS VERY SAD AND SCARED AND COULD NOT UNDERSTAND WHY GOD GAVE ME THIS. MY MOMMY AND DADDY SAID THAT GOD CHOSE ME BECAUSE I AM VERY STRONG AND I CAN MAKE DIFFERENCE IN HELPING PEOPLE WITH BRAIN TUMORS. PLEASE HELP ME HELP OTHERS WITH A BRAIN TUMOR AND DONATE TO MY TEAM JUSTIN UNITED IN THE RACE FOR HOPE MAY 3, 2009. THANK YOU SO MUCH FOR SUPPORTING ME. LOVE, JUSTIN We are gearing up to raise money for this race and of course appreciate everyone's love and support. Again, we cannot express how proud we are of Justin. His brain tumor has had a positive influence on so many people and has defined in him in some fashion that one would see such love, courage and compassion that exudes from Justin. Justin we love you very much. Keep fighting the good fight not only for you but those others that have a brain tumor.
Thursday, January 16, 2014
Last Friday, I received a call from my dearest friend Jay, who has been so instrumental in Justin's Quest,that his good friend was just diagnosed with a pituitary brain tumor. Jay was frantic as he called me and explained the situation and asked for help. I was at work and I immediately stopped everything that I was doing so I could help Jay's friend. I have spoken with his friend several times before. I called Jay's friend and offered total support as his life was just turned upside down. I Know exactly what it is like to go through this horrific time and I just wanted to help his friend in any way I can. I helped him get a game plan of doctors and what to expect and give him direction because you feel so helpless. We believe that Justin was diagnosed with his brain tumor to help those in need with this terrible diagnosis. It is Justin and our family's calling. I told Justin that night about Jay's friend and he expressed tremendous concern about his prognosis. Justin wants so bad to help others and when he hears the sad news about someone being diagnosed with a brain tumor, he feels so bad and wants to help. The good news is that Jay's friend has things lined up and is on his way to getting more clarity about his situation. I am telling you this story because there are to many people that are alone in dealing with a horrific medical diagnosis. We as a community need to help everyone going through this because it is so lonely and incredibly scary. Yesterday, Justin came home from school with headaches and blurry vision. A parent may not think twice about this situation with their child but when your son has a inoperable brain tumor involving his optic nerves your heart sinks and we were sick to our stomachs. Justin was terrified and incredibly freaked out. We immediately called his neuro-opthmologist and he thankfully fit him in and saw Justin today. It seems that Justin may have migraines which is a good thing if totally confirmed. I felt so bad for Justin as I was driving him to the doctor this morning. He said dad " I am done with my brain tumor" " I want to say to the world that I HAD a brain tumor not HAVE a brain tumor" "it is so hard to live with this" I told him our mantra again " I have always been there for you and I will always take care of you and we will beat this and get through this as we have the best doctors in the world at Mass General". It has to be hard on anyone going through this but especially a child. He knows that this is his and our purpose to make a difference and we preach it and live it. Once again, I preach, love your family and appreciate everyhting you have because you never know when a family diaster may strike.
Sunday, January 5, 2014
Happy New Year 2014!
Justin and our family want to wish everyone a happy and healthy New Year. May 2014 be a great year for all. Justin had some exciting news on the soccer front. As mentioned in my last blog Justin and his team was going to play in the IMG Soccer Tournament which is one of the best and most competitive soccer tournaments in the world. They played 4 games and Justin got to play the whole second half of the last game. That was the only game they won which was 1-0 and Justin had the assist to the goal. I was on the phone with Audrey as she could not wait to call me with the great news and she was crying tears of joy. It had me choked up as Justin continues to defy all odds and persevere. I spoke with Justin about the game and he was so excited. He really felt great about himself. His team has such unbelievable players and coaches. He said to me "Dad I am not mad at the coaches for not playing me, I am mad at myself for not giving them a reason to play me". I was blown away by his comment. He has such a different perspective on life than most because of his diagnosis. He has a quote on his cell phone from Michael Jordan that stays on his home screen that basically says never give up in life. He is truly inspirational. The other day I was upset about something and he came to me and said "dad live life to the fullest". Again he blew me away with his wisdom and insight. As discussed in my previous blog his radiologist and now I found out his neuro-oncologist will be taking his case to their conference this month to discuss with some other brilliant colleagues. We are so lucky to have the people at Mass General on our team. We will have our Justins Quest team set up for the DC Race for Hope in May and Justin will be going to San Diego in the Fall to do an event called "Over the Edge" he will propel off a very tall building to raise money and awareness for brain tumors. Lastly and I must say we are beaming with joy, Justin made Honor Roll for the first time at his high school, Bullis. Thanks again for all your love and support!
Sunday, December 15, 2013
Justin and our family would like to wish everyone a happy and healthy holiday season. Justin just finished his first trimester at the Bullis School and he did fantastic. We are so proud of him. Justin is about to go to Tampa Florida with his soccer team the Baltimore Celtic to play in the IMG nations top soccer tournament against the U.S. National team and the English Premier youth club team Tottenham. This is so exciting for him and our family. Who would think after Justin's diagnosis of his brain tumor, he would be playing for one of the premier soccer clubs in the nation. We just came back from Boston visiting Mass General for testing and his MRI and received some news that Justin's brain tumor is having an effect on his optic nerve. This was very scary for him to hear and of course us but we are again blessed that that we will not treat as of yet. We still have to pinch ourselves as parents that we have a child with an inoperable brain tumor. It seems so unbelievable. We will monitor him very close and in fact one of Mass General's doctors is taking Justin's case for review at a leading conference among radiologists in the United States. We feel so fortunate to have such a great team at Mass General Hospital. The people are just so fantastic and treat us like family. Audrey had a meeting with Accelerate Brain Cancer Cure and Beth Anne Telford, who is a brain tumor survivor that has worked so tirelessly to find a cure, to come up with our next event to raise awareness and find a cure for this terrible disease. Justin and Beth Anne are scheduled to speak at a symposium of very influential people in February. Justin will get on this stage and tell his story about living with a brain tumor. I still cannot believe how strong he is and his tremendous will and desire to help others and find a cure for brain tumors. Thanks again for everyone's support.