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

Trevor Weigand

First post: Feb 27, 2008 Latest post: Aug 20, 2020
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.

Trevor has recently been diagnosed with a low grade glioma that is classified as a juvenile pilocytic astrocytoma which will require chemotherapy. He has had two cystic tumors removed, one from the cerebellum and one from the spine, and is currently recovering from these surgeries. As we visibly see his recovery before us, we continue to pray for the internal recovery and healing that needs to occur inside. Over the past year, Trevor has had 3 hospitalizations, 5 surgeries, 6 MRI’s and multiple CT scans. We’ve now started his chemotherapy which is anticipated to last 1 ½ - 2 years. He will receive treatment weekly. His case has been complex due to the overall presentation and symptoms. Those professionals who see his scans are amazed that he isn’t “sicker” or that he can even walk at all. This type of cell (astrocytoma)/tumor is typically a benign form of cancer, however at some point in the process the cells seeded or spread throughout Trevor’s CNS (central nervous system) acting as a malignant cell would. This is not a typical way for this cell to respond, which is why there seems to be more questions than answers. Some of the physicians believe that when Trevor experienced chronic high fevers from the age of 1 – 2 years, the cells were seeding. At the age of 4, we became concerned with his coordination and some speech patterns. This led to an initial diagnosis of mild CP, however, the follow up MRI revealed something very different. At this point we were sent to Akron Children’s Hospital where his first week of surgeries included a biopsy of the cerebellum with placement of an external ventricular drain. This was followed by a procedure to internalize the drain with a VP shunt. All signs were pointing to an old infection that was burnt out but had left residual substance in the CNS. A second hospitalization occurred in April for a possible shunt malfunction but surgery was averted and all was well again. By May, he was experiencing episodes that would later be diagnosed as seizures. We spent the remainder of 2007 and the beginning of 2008 working to regulate the seizures with medication. By the end of January things started to go bad fast. Progressively worsening seizures with significant increases in medicine were followed by increased deficits in balance. Worried about the medication, we began to decrease doses and the balance continued to worsen. A trip to the ER verified that the medicine wasn’t the problem. However, a cystic lesion was found in the cerebellum and yet another in the spine days later. A two week hospitalization was to follow. Both tumors were removed successfully in two separate procedures and the diagnosis was finally determined.

At this point the plan is to do chemotherapy to try to kill remaining cells in his system (some no longer react to contrast MRI and some do). It is uncertain whether the cells that no longer light up are burnt out or if they are dormant. We continue to ask for prayer that his system is fighting hard and successfully destroying these bad cells. It appears that this process has gone untreated for about 4 years and for us, that means God has been protecting him long before we knew there was a need.

We will continue to update you through this site on Trevor’s progress. We graciously accept your love and prayers as we forge ahead in this unfamiliar territory. God will be our eyes to lead the way, our strength while we are weak, and He will carry us when we can not walk. We ask that you lift Trevor up in Jesus’ name as we pray for a complete healing