Standing on the Rock....need I say more?

Trevor Weigand

First post: Feb 27, 2008 Latest post: Aug 29, 2021

2021 - I was about this time of the year in 2007 that we received a call from Trevor's pediatrician and we discovered that something was terribly wrong with his MRI.  The neurologist believed that Trevor's signs/symptoms that brought us to his office were a result of a mild case of Cerebral Palsy, despite that being a little baffling as there were no events during pregnancy or delivery that would have pointed to that.  It was all that made sense at the time. The MRI was merely a formality to "rule out the brain" in order to allow us to get the services he would need moving forward.  As you know (because you lived it with us) it got pretty hairy from there. We went to see a neurosurgeon who admitted us on a Friday for surgery on Monday  (which we were not expecting). He was very unsure what this could be (we saw oncologist and infectious disease doctors before surgery for consultation).  Trevor went for another MRI (this one to include the spine) and the doctor came to see us while he was still in the scan. I will never forget him saying that whatever it was, it extended down into the spine and if it turned out to be cancer........it was going to be a bad situation because it had already  spread.  That next two weeks is a blur, yet moments are seared into my memories like it was yesterday.  We had no diagnosis at the end of that stay - we came home with a shunt and a mystery.  Samples of the biopsy were sent all over and no one had an answer.  FF one year later and our main concern during that year were the seizures he had been having for 7 months.........and it happened all over again.  ER visit on Friday- scheduled for surgery on Monday.  This time there was a diagnosis of cancer and the mystery was solved.  His case continued to perplex many of doctors over the years and only recently has his category of cancer been identified and labeled into its own "box" in the world of pediatric oncology.  At that time, we even made a visit for a consultation with an oncologist at Duke University Hospital for collaboration as he was the only other doctor to be found with a "kind of" similar patient.  This doctor told us that 5-10 year survival would be a really good outcome.  This just seemed unfathomable and I guess in a way, you could say we went into denial.  As I remember, my dear friend Nairmeen reminded me that 5-10 years was just the time we needed to have new and improved technologies and medications arrive on the scene. We tried to keep things as "normal" as possible but with multiple surgeries, chemotherapy,  and all that goes with it, the  hospital became our second home for many years to follow.  Again this all seems like a blur but there are still so many moments that are seared into my memories.  We had no choice but to trudge forward, and with more support and love than I ever dreamed, we made it through a lot of tough times.  Our family and friends, community and strangers carried us through our toughest days.  We are grateful and thankful and hope that the updates you receive on this site, even though they are fewer and farther between (which is a good thing), continue to show you how much we truly love you all.  



2014 - This Cover story is in need of another update!!  It's Sept 2014 and Trevor is a week and a half away from turning 12.  I've spent some time going back and reading these journal entries and it really helps me see just how far we have come.  You guys have been amazing prayer warriors and supporters through it all.  I remember saying early on that this would be a marathon and not a sprint - how true that has been.  But you have stayed by us - experiencing the joy at times and weathering the storms as they have come through.  January will mark 8 years since his first surgery and March will be 7 years since his diagnosis.  Those are days that I will never forget.  There was so much uncertainty and fear of what the future would be.  There really are no words to explain what we were feeling in those moments where there was little clarity, but what I can say is that God has been very clear through all of this - "Be still and know that I am God" (Psalm 46:10) - so simple yet so hard, and we are challenged every day in this.  Easier to preach it then to live it, but that is exactly what we try to do and when we fail, we get back up and try again.  

We are now 7 years into treatment and participating in an experimental medication trial.  So far we have had good results and the overall study is showing to be favorable.  Though there are still many unanswered questions, we are a long way from where we started and seem to have a better grasp on what is going on.  

Now, we chose to continue moving forward with hope and joy.  Not because we know what will happen but rather because we know that God is in control and He already has a great plan set.  We know there will be joyful days and storms to weather but we are certain that we are not alone.  You continue to be a source of strength for us and we are so grateful that you are a part of our journey.  Thank you for your continued prayers and support.  

God Bless!!  




2011 -Trevor is now 9 and is on his 4th cycle of chemo since restarting this year.  The physicians felt like his MRI's were changing enough to warrant chemo as they were seeing new spots each time and enlargement of what was already there.  It was an awesome year and a half without the meds, but we are thankful there is something that can be used to treat his cancer.  It doesn't get rid of it but keeps it at bay.  Monitoring is at 2-3 months right now and we continue to pray expectantly for positive results. Thank you for your continued support and love through prayer


2008 - The past year has been a difficult year in our home. We have been faced with trials that at times have felt insurmountable. It has felt like a roller-coaster in many senses. We’ve felt the uphill calm and exhilaration when the storm is quiet or we receive what seems like great news and we have felt the downhill plunges that make your stomach turn and your face go pale. We’ve described moments of joy that were followed by what felt like a “sucker-punch” from behind. Many of you have experienced this year right along with us, and many of you have also shown your support through your love, prayers and many generous acts of kindness. All of this has helped sustain us and we have truly drawn strength from all of you. Our words alone could not express the heartfelt gratitude that we feel.



Trevor is truly a special child. He has wonderful gifts that have blessed many over the past 5 years. Those who know Trevor, know exactly what I mean. Trevor has a remarkable love for Jesus that he is not hesitant to express. He also loves people. He enjoys meeting new people and touches the hearts of those he encounters. He has taught us so much about loving others and having faith in how great God is.




2011 -Trevor is now 9 and is on his 4th cycle of chemo since restarting this year.  The physicians felt like his MRI's were changing enough to warrant chemo as they were seeing new spots each time and enlargement of what was already there.  It was an awesome year and a half without the meds, but we are thankful there is something that can be used to treat his cancer.  It doesn't get rid of it but keeps it at bay.  Monitoring is at 2-3 months right now and we continue to pray expectantly for positive results. Thank you for your continued support and love through prayer


2008 - The past year has been a difficult year in our home. We have been faced with trials that at times have felt insurmountable. It has felt like a roller-coaster in many senses. We’ve felt the uphill calm and exhilaration when the storm is quiet or we receive what seems like great news and we have felt the downhill plunges that make your stomach turn and your face go pale. We’ve described moments of joy that were followed by what felt like a “sucker-punch” from behind. Many of you have experienced this year right along with us, and many of you have also shown your support through your love, prayers and many generous acts of kindness. All of this has helped sustain us and we have truly drawn strength from all of you. Our words alone could not express the heartfelt gratitude that we feel.  



Trevor is truly a special child. He has wonderful gifts that have blessed many over the past 5 years. Those who know Trevor, know exactly what I mean. Trevor has a remarkable love for Jesus that he is not hesitant to express. He also loves people. He enjoys meeting new people and touches the hearts of those he encounters. He has taught us so much about loving others and having faith in how great God is.  








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