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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 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.


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