3 years and going strong...

hi there,  Jake's been on an adventure for almost 3 years now and we thought it was about time we started to document his journey... I am not too sure how this blog-thing is supposed to work, but here goes...

(08/2006) With a blanky, a small thumb, a sippy of water, "where the wild things are", and a smile that shines right through you- Jake started this adventure at 14 months old... A few blank stares into space, a little lip smacking and well, a trip to Florida, and Jake accelerated right onto the path less traveled by... An MRI showed a brain tumor on the left side of his brain- a ganglioglioma on the left temporal lobe causing him to have petit mal seizures.  9 days later we were in Pittsburgh preparing for the "big party"!  (We told Jake we were going to a big party where he would be the special guest and that everyone would be wearing blue in honor of his favorite color!  i.e. scrubs.  We said it was going to be an incredible adventure and we left the house the morning of his surgery, our bags packed and smiles on our faces ready to face the journey that our Lord was leading on).  As we got into the elevator a man must have sensed our enthusiasm and he asked what the occasion was- we told him that we were going to be big party and whispered what would be happening.  He said his daughter had had her party yesterday and whispered to us that she had undergone a double lung transplant!  We all made eye contact, prayers were said silently to one another and we got off on the next floor.  Jake's party had begun...Thru God's grace the little trooper made it through a 6 hour surgery despite huge complications (platelets below 8000, blood trasnfusions, platelet trasnfusions...)and came out fighting and hasn't stopped... A mere three weeks later he was running around again and despite a "battle" scar on the left side of his head, a stranger would never know he'd been through anything at all... 

(11/2007) Jake continued to have an MRI every 12 weeks to keep a close eye on things and 15 months later his MRI would reveal a 2nd brain tumor; this one much deeper in the brain in the basal ganglia.  Jake continued the adventure without a symptom so the docs decided it was best to keep a close eye on it but no treatment was needed at that point... (The tumor was too deep in the brain for surgery and without symptoms any other treatment had  much larger consequences).  A 2nd opinion at CHOP in Philly concurred so we continued the journey and continued on our walk of faith trusting our "great physician" and knowing He had things under control! ... 

(02/2008) 3 months later his MRI would reveal that the tumor was enhancing under contrast; meaning that many of the tumor cells were active... As Jake remained asymptomatic, the docs again agreed to keep a close watch and prayers warriors around the world prayed for our little man who continued to live life to the fullest and enjoy every day!  

(5/2008) Jake went in for his MRI and he always does sang Jesus Loves Me through his tears as they put in his IV and got him ready for his tests.  Jake too is a witness through all of this as the nurses & doctors sing along side him.  As his doctor said, only God knows what his next MRI will show and to all of our amazement, Jake’s tumor did not show up in contrast on the MRI scans, meaning a loss of enhancement and a decrease in tumor activity.  The tumor is clearly still there and it has grown 1-2mm, but it no longer has the alarming characteristics that it had in Feb.  His doctors admitted that they had never seen a case like this where a tumor loses enhancement.  In our hearts, we know that the Lord’s will had been done, but medically we decided to get a second opinion to cover all our basis. The top neurosurgeon at CHOP agreed that he had not seen this before.  All are in agreement that as Jake is having no signs or symptoms –that we can tell- that it is safe to wait another 3 months to do another MRI and devise a plan then.  We looked at these 3 months not as a time of more waiting, but as more time to pray for complete healing. 

(08/2008) 3 months later, his MRI would reveal that the tumor had doubled in size and it was now time to take action and kick this adventure into 4 wheel drive!  Jake jumped into the passenger seat allowing our Lord to take the wheel and placed all his Trust in Him... The faith of a child... The following few weeks were some of the toughest for "mom & dad"- we spent them researching and finding some of the best docs in the country.  We went back to CHOP and went down to Johns Hopkins and got 2nd, 3rd & 4th opinions from the top neuro-oncologists in the world.  Through God's grace & guidance we had access to some of the best minds in the industry.  We sent them pathology of his first tumor, they did neurological exams on Jake and reviewed all his MRI's to date.  In just a few short weeks, Jake's adventure quickly took a huge right turn.  The team of pathologists at Johns Hopkins called us down to tell us that Jake had been misdiagnosed two years ago; the tumor wasn't a benign gangliogiloma, it was a grade 2 fibrillary astrocytoma.  The pathology team at Children's in Pittsburgh stood by their original diagnosis, but Jake's oncologist couldn't disagree with the team at Hopkins; their pathology department is the best in the US.  Jake underwent surgery for the placement of a Power Port and began chemotherapy treatment.  His regiment would be monthly Carboplatin for a minimum of 12 months, with an MRI every 12 weeks.  A few small tears aside, Jake embarked on this new part of his journey as he had in the past; with confidence that our Lord knew the path he was heading down and would take care of him.  Jake's worldwide prayer warriors have continued to pray alongside of us and Jake is now into his 7 month of treatment. He is blessed to be within the 30% of children who doesn't lose their hair on this type of chemo treatment, so once again he silently goes about his journey without strangers knowing the race he is on... 

(03/2009) For most of the journey we have been reactive to the bumps in the road... As an MRI in January of 2009 revealed the tumor was stable and a friend of a friend put us in contact with the team down at Duke- we decided to proceed with another opinion.  We once again sent pathology slides from Jake's first tumor, all of his past MRI scans and we went down with Jake for a neurological assessment.  To our great relief, the team agreed with Johns Hopkins- Jake's tumor was in fact a grade 2 fibrillary astrocytoma, there was no more doubt.  The pathology team here at Children's continue to stick to their original diagnosis but our minds are now at ease and we are confident we are treating the right type of tumor.

(05/2009) His MRI last week revealed that the tumor is completely stable.  A 2nd opinion from the team at Johns Hopkins said (and I quote) "our entire team concur that the tumor is definitely stable" and we hope to hear from the team down at Duke this week.   Despite 4-5 days of fatigue, nausea and vomiting following his treatment, he gets up and goes to preschool without a complaint and always a smile... He often needs a hug during the morning while he is there but his wonderful teachers are happy to be there to share in his undividing love... One of his classmates asked him one day about his port and jake simply replied, "that is my port where I get my chemo "crusader".  When the little boy asked if he could get one, Jake confidently replies "nope, Jesus gave it just to me".  He has taught us all so much along this adventure as he deals with each new bump or turn...God's challenges become his tools to mold himself into the little trooper he is... He is a gift from God and we are so blessed to share in his journey...

Till next time...