the pessimist borrows trouble and the optimist lends encouragement.
I was diagnosed with stage IV neuroblastoma on April 8, 2005 and immediately admitted to UVA hospital in Charlottesville, VA for removal of 4cm tumor on my right adrenal gland. After 5 rounds of chemo under Sloan Kettering's protocol at UVA I finally transferred my care to NYC at Sloan in September of 05. I was NED after 3 rounds of chemo on my first MIBG scan July 8, 2005. We harvested stem cells in September of 2005. I underwent radiation for 7days twice a day in October 2005. Then came the antibodies in October 10/05-10/07 and never became hama positive, so I endured all 13 rounds. I've remained in remission for 3 years and 9 months but just found out we relapsed in my hips and knees (bone marrow only) on April 7, 2009. A medi port access is scheduled at UVA hospital with Dr .Eugene McGahren on thursday, April 16th and then heading to Sloan Kettering to receive our chemo on April 20, 2009. I have endure 3 rounds of high dose chemo both at UVA and Sloan Kettering since my relapse. It's been a struggle to overcome the secondary infections that I got during post chemo while my body was immunosupressed and I was trying to get better. In addition to multiple gram positive and gram negative blood stream infections, I also got a candida tropicalis infection (which is yeast) in my blood stream that landed me in the hospital over 2 months and almost took my life 3 times. I seem to always prevail even the worst situations. I have also endured 12 days of radiation since relapse and multiple procedures (medi port placement, removal, bone marrow biopsies, catherizations, a picc line placement, poking and proding constantly for veins that seemed to have crumbled from chemo, fem line placement and removal, art line placement and removal). I'm here though and I'm feeling good, just finished my first low dose chemo (number 10 for my life) and have 1 more low dose chemo to go then off to scans the beginning of April. I have one tiny spot left of cancer on my sacrum (lower spine) that we continue to fight and hope to receive the vaccination for neuroblastoma once I'm clean and stay that way for 6 months. Hopefully that is the answer for this monster of a disease. Mom will try to keep everyone posted as much as possible, but we're quite busy these days trying to live life.. :)
The holiday's, round 2.
Nov 26, 2012 11:58amWell, we got through Thanksgiving. It was so silently heartbreaking for me though. I forgave a night out with my friends Wednesday night for a good night's sleep to prepare myself for what I assumed would be heightened emotions for me. I thought after all the first's without my baby boy, it would get somewhat easier, but I was dead wrong. After a good night's sleep, Jim and I woke early to go run a 5K turkey trot race. I had no clue that I had signed up for the wrong race earlier in the week, so the YMCA got a donation from me. :) Doesn't hurt to help out, but Jim signed me up for the race he wanted to run. I probably should have ran the YMCA because the one Jim took me to was nothing but hills. UGHHH. I survived it though and of course he did too but he did admit it was a rough one. After that we returned homed, I was just cranky and angry all morning after that even though I did everything in my power to prevent it (thank heaven my boyfriend is tolerable and understanding because he got the brunt of it) Thank you honey for being an angel on earth. Tears streaming down my face uncontrollably every 5 minutes missing my boy and knowing it was Cathy and her family's first T day without Ryan and also my friend Crystal's family. Unfortunately, I am not close enough to visit Cathy and her family in Michigan on T day, but I did stop by to Crystal's family and give them a hug. They seemed to be holding up okay, but I know their hurt and pain and it's not easy. They did have Crystal's son Logan with them, so I decided I don't have a son, he doesn't have his mommy and just took him to my mom's with me that evening for dinner. He had already had dinner with his family, so I thought that would give his grandparents some time to grieve and maybe nap that evening. He did very well with my family, other than asking me to buy him everything advertised on the television for Christmas. :) Of course I ran out on black Friday and did get him something on his wish list, but the ipad and ipod are not going to happen this year. He is just the sweetest child and I know he's hurting. I think it's good for him to be around Monica too because she is a good support for him. Our family has known Logan all his life and he used to visit my mom's house with his mommy all the time. I think being there after a while set in the reality and memories of his mommy for him. We were all very supportive and loving to help him get through it. He's a tough little boy and I know this horrific experience of losing his mother at such a young age will help him succeed to higher levels in life. I look forward to watching him grow and succeed. Our angels were definitely with us this weekend though. So, there ya have it, we survived that day. Friday, I cooked a 21lb turkey my mother had gotten me and I named Herbert. It was really my first turkey ever that I cooked. Yes, I've been spoiled by parents and in laws and of course my Aunt Nancy and sister Jessica over the years. Monica helped prepare Herbert and he was delicious. She had her boyfriend Kenton over a few times to visit and to eat some Herbert with us. He is so pleasant. They are adorable together and make one another happy. Mason probably sent him to her. I just adore the kid, so well mannered and treats her like the princess that she is. The rest of the weekend we just kind of hung around the house, got a Christmas tree, wrapped the presents I got on black Friday and decorated, so we are all ready. Even shopping for Christmas is difficult though when I see things I know Mason would have wanted. I went into his room this weekend to access the attic and retrieve Christmas decorations. That was therapeutic, but hard as well. I did find his favorite timberland boots though and they just so happened to fit me. So, I will sport them around remembering him every step I take. I know if he were here with us still he'd be yelling at me for even trying them on, but now that he's not able to wear them he would definitely want me to. I'd like everyone to please pray for a few people who are near and dear to me. First, my sister Penny. She was admitted to the hospital last night for a PE in her lung. I have full faith she is in the right place and she will completely recover because she is one of the strongest women I know. Please continue to pray for those results though. Also, Jim's grandfather was rushed to the hospital today after having a stroke. Please pray for his comfort, strength and complete recovery. Last but not least, Mason's friend Connor Gerber is having a very difficult time with neuroblastoma trying to take over his body and possibly his life. He is a strong, beautiful, sweet, vivacious boy normally, but lately his mom states he's experiencing so much pain and decreased appetite. He and Mason shared a love for video games so they'd spend a lot of time together when we were both at the RMDH together. There were days they would even dress alike without realizing it. They were buds, the cutest thing ever watching these two together. Connor with his south african accent just tickled me each time he spoke and Mason trying to mimic him was even funnier. He wasn't so good at it, but he tried. Connor doesn't know Mason is an angel. I did send some of Mason's clothes up to him for the cold weather a few months back and his mom said he was so excited and stated "I remember when Mason would wear this, I wish I could see him though". To that his mom replied " I think you will see him sooner than you think". How heart wrenching to be put in a position to think on those terms about your child, but it's a reality to us parents. I went through those emotions and thoughts as well as so many other parents who had kids fighting the good fight so hard. You can read more about Connor at http://www.caringbridge.org/visit/connorgerber
With love, prayers and hope to all our fellow family, friends, warriors and angels
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Thank you so much everyone for the well wishes, prayers and encouragement. They mean so much to us and although I may not have the opportunity to reply individually, I wanted to at least reply. We are so appreciative for all of you
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