Tuesday, June 21, 2011

Rob's Story... in a nutshell

Rob Grimshaw has a unique story to tell. For now, I will share it from my perspective but I hope in the future he will allow me to share his story at a more personal level. Rob married his highschool sweetheart, Amber Turner, and together they have two beautiful girls. Joslyn, 8 and Savannah, 2. Shortly after Savannah's birth, Rob began feeling pain in his left hand. He was diagnosed with carpal tunnel. Following 2 surgeries for carpel tunnel the pain continued and was getting worse daily. After researching many options and doctors, Rob traveled to St. Louis to see nerve specialist (we thought carpal tunnel surgery had severed his nerve).
The nerve specialist found a tumor in his arm just under his elbow. It was the size of an egg. Doctors removed the tumor and Rob was told it was benign. 1 week later St Louis called. It was high grade MPNST (Malignant Peripheral Nerve Sheath Tumor). He was told to get on a plane the following day so they could take a large part of the surrounding area in case it had spread. He did. Leaving behind his family and new baby, he left feeling worried and had many questions. They did a CAT scan to see if it had spread to his lungs and the scan showed only two nodules. The doctors advised him that it was nothing to worry about.
Rob then continued to follow the advice of his doctors and underwent brachyradiation therapy in St. Louis and came home to Las Vegas. In Vegas, he went through 1 month of external beam radiation. (We have since learned that this treatment caused the cancer to grow and spread more rapidly than ever)
By the end of the year, the family celebrated being cancer free. But soon after the new year, his arm was back into pain. Rob was told to have a CAT scan once a year but because of his pain, he insisted they scan him again. He went back to St. Louis in early March 2011 for an MRI cause the Las Vegas doctor kept telling him it was scar tissue from radiation.
The MRI found sarcoma cancer was back in his arm and was breaking through his muscle. He was advised to amputate his left arm. Rob and Amber wanted a second opinion. By this point, every doctor was advising different procedures and each had a different prognosis. Together they went to Utah and on March 28, 2011 (worst day of their lives) Rob had a cat scan on his chest that showed tumors in both lungs. Now considered stage 4. (incidentally Rob found his mother passed on this same day 2 years earlier) so this really is a bad day for their family. Rob started chemotherapy in Salt Lake City, a 6 hour drive. They would come home for two weeks, then drive back to Utah for 1 week of chemo. He did 3 rounds of chemo. During the 3rd round pain was so intense that he had to have a nerve block to numb his arm.
Doctors did another biopsy sticking a long needle in his arm 20 times to see if maybe he had an infection. No infection was found, but they did change the pathology report to a diagnosis of epitheliod sarcoma. Doctors said chemo has not been found to help with this type if cancer.
Through all of this, Rob has continued to coach his daughters soccer team, hold his calling in church, and inspired his 14 year old niece to get baptized into the Church of Jesus Christ of Latter-Day Saints. He was able to baptize and confirm her though the tumors in his arms were ripping through his muscles and bone. He cried all during church from the pain of his arm. Somedays he can't get out of bed because the pain. Somedays it's dificult to breath deeply. Somedays are filled with tears and worry but other days are filled with hope and faith. Amber stays home with him... cooking and keeping up with his meds. She searches the internet and calls people trying to connect in order to find a cure. There are experimental and alternative treatments available but insurance will not cover them. Because the US has only seen 8 cases of this type in the past 15 years, there isn't alot of "approved" therapy available. The need for research isn't high because very few people suffer from this. Together we can support Rob and his family. Financially, emotionally, and physically they will feel our help and love. Thank you.


  1. Hello to your entire family. You don't know me but I read Camille Roskelly's blog and I hopped over here from there. I just wanted to let you know that I will be keeping you Rob and your beautiful wife and darling girls in my thoughts and prayers. Sending you very gentle hugs and may God Bless.

  2. I too came here by way of Camille Roskelley's blog, and am keeping you and your family in my thoughts and prayers.

  3. I also came here thru Camille Roskelley's Blog. Your family is in my thoughts and prayers. God Bless you and your family through this difficult time.

  4. Our love, prayers and well wishes run deep for Rob and his family. I will continue to donate as much as I can.
    Our hope is for a bright and full recovery.
    I found this site from eighteen25 blog.

  5. not sure if this will help but at least you can talk to your doctors about it:


  6. I'm writing you from Italy... my prayers are for you... what I can suggest is to contact ISTITUTO EUROPEO ONCOLOGICO (www.ieo.it) which is under the guide os the great PROF. VERONESI one of the biggest expert in europe. From all europe are coming people to this center... maybe they can help you....
    A big kiss to you family... Benedetta

  7. You're family is in our thoughts and prayers! I heard of you from a friend. I can't imagine all you are going through. Know that if you are ever back in St. Louis, you have a friend! :)

  8. My now 19 year old daughter is a Ewings Sarcoma survivor. I know how very difficult sarcoma can be. My heart goes out to you & your family. I am praying for you right this second! much love & peace,
    Melinda Walker

  9. Robi, this is Theresa Bradley and I just read your story, my heart goes out to you and your family during this time. I will pray for you and your family every day and night. I shed tears listening to your story because you never want to hear the word cancer from someone you had grown up with as a child. God Bless