The PORT is out....

Jake had surgery today at Stanford to remove his port. He was a little anxious this morning, asking to keep it in when we spoke with the surgeon prior to anesthesia, but after a quick chat he reluctantly said okay to having it removed. Then he asked to keep it once it was out- the surgeon said she would take a photo of it so he would have it forever- he agreed. His surgery lasted about an hour and then he recovered for a few hours and we are now back at home. He is on pain meds and sleeping peacefully. Doc said he should feel fine in a few days.

Glad this chapter is over... His next MRI is scheduled for Feb but we are taking it one day at a time...

“Thank you Heavenly Father for the guardian angels watching over Jake” (psalm 34:4)

12 months and STABLE...

Jake just had his most recent MRI on November 16th, 2009 and his tumor has remained stable since last November- God is so good! So good in fact that the doctors feel that we can remove his port December 11th. He will undergo surgery to remove the port at Lucille Packard at Stanford. Jake seems excited to have it removed but also has an attachment to it, almost like it identifies him- so we are praying that he adjusts well after the surgery. He will continue to have MRI's every 12 weeks for the next year. "All things are possible with God" (Luke 1:37)

We've also started down a new path on this adventure we call life and have moved to Palo Alto, CA to start a business development office for our company. Jake was at a good place in his treatment to transfer his care to the top pediatric neuro-oncologist at Stanford, Dr Paul Fisher. It has been a transition for all of us be we are settling in nicely and have already made some great friends and found a wonderful church. Jake started preschool last week and loves it. His new twin baby brothers will be born in about 6 weeks and we are all anticipating their arrival... "We thank you Lord, that you hold our lives in Your hands and You hold our feet to the path." (Psalm 66:9)

Closing another chapter- 12 months of chemo treatments are OVER!

We are celebrating today as Jake reaches another milestone- he has completed 12 months of treatments and the end of chemo!!! He will continue to have MRI's every 12 weeks to monitor the tumor activity but is free to live like all other 4 years olds!!! He starts preschool tomorrow and cant wait! God is good...

Thursday, August 13th....2009

Jake had an MRI this morning- his tumor has continued to remain stable and in a few slices of the scan it even looks as though it may have shrunk a mm or two. It continues to not show up in contrast. We are encouraged. He underwent his 11th course of chemo today and will have his 12th and final treatment on this course in Sept. He will have his next MRI in November and continue to have MRI's every 12 weeks until we see any change in the tumor. At that point we will start a new course of treatment. The docs hope it will remain stable for 2 years but it's all in the Lord's hands...

God is good!

Thanks for the continued prayers!

9th treatment and counting...

Jake underwent his 9th chemo treatment today and there wasn't a tear in sight...the little guy has such strength.  If the tumor remains stable for the next 4 months, they will stop after a full year in October.  He will continue to have MRI scans every 12 weeks to monitor the tumor.  He asked me today if "everyone had a port sometimes"?  I say no, not everyone sweetie, and then he confidently looked up at me and said "I know why- Jesus chose just me!"... A pain stabbed my heart and I fought the tears behind my eyes, but he couldn't be more right.  Jesus did choose him.  Jesus has a perfect plan in his life and he confidently trusts in Him.  Jake focuses on the truths he knows, and not on the unknowns...what a gift he is!

Wisdom from the Docs...

(6/10/09) We heard from Duke today regarding Jake's latest MRI report.  The team there is in complete agreement with both Johns Hopkins and Pittsburgh that the tumor has remained stable since last November (11/08) and to continue treatment as usual until his next MRI on 8/13/09.  Thank you Lord for providing the Docs with the wisdom they need to read these reports and that Jake is doing so well.  We are encouraged!  Till next time...

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...