Offutts

From the moment they held their baby for the first time, Leah and Joe knew they would go to great lengths to protect their boy.  Today that baby is a 14 year old young man, whose life shows evidence of a lot of life, love and training poured into him from parents who would go to the moon and back for their son.

Joe and Leah expected the run of the mill childhood bumps and bruises when they became parents.  All par for the course, but Jake started to have migraines when he was 6, which was not so typical for a young child.  Thankfully, the migraines were infrequent when he was little, but as years passed their frequency increased.  Leah and Joe sought help from a neurologist when Jake was 10, hoping to find some answers.

Jake has been in treatment for the last 4 years to help manage his migraines.  Lately though, frustrations grew when the physician canceled multiple appointments.  The Offutt’s decided it was time for a new neurologist and began seeing Dr. Oakley, at Hopkins, in December.

Dr. Oakely began Jake’s appointment with a physical exam that immediately revealed some troubling signs.  He asked Jake to follow his finger with his right eye and his eye jumped side to side, rather than an expected smooth gliding movement.  He repeated the same procedure on the left and his left eye jumped side to side as well.  When he was asked to smile, Jake could turn up the left side of his mouth.  When asked to raise his eyebrows, only the left brow went up. 

Leah wondered how she and Joe hadn’t noticed these changes.  Likely, there was a slow transformation in Jake’s mannerisms, so it was easily missed.  In the whirlwind of our everyday, things like this tend not to stand out until we begin to think that something could be wrong.

Dr. Oakely ordered tests for Jake.  When he realized the Offutts would not be able to get an appointment for 11 days, he chased them down in the hospital and directed them to the ER to have the tests done immediately.   At the conclusion of the tests, Leah was told Jake would need to be admitted.  Many tests were performed, but the MRI would be the one that dealt the crushing blow.  Fortunately, Jake was surrounded by the love of the two people who care for him most in this life.

The MRI revealed Jake had a mass on his brain stem that would need to be surgically removed as soon as possible.  No one can prepare you to hear news like this.  Nor can they prepare you for the flood of emotions that come washing in.  Life becomes a dizzying blur of questions, tears, anger, frustration and shock.  Jake’s immediate question was one that the doctors could not answer, “Do I have cancer?”

Doctors informed the Offutts that this question could not be answered until after the mass was removed and a pathology report was returned.  Meanwhile, they had to prepare for the surgery, which would happen just two days after the mass was found.  Dr. Jallo prepared the Offutts for what to expect after Jake’s brain surgery.  The start of the paralysis in his face would be markedly worse; he would also likely require a breathing tube, a tracheotomy and a feeding tube. 

 The day of the surgery, Dr. Jallo was able to remove 90-95% of the tumor.  Part of the tumor remains embedded in Jake’s brain stem which controls important functions like breathing, sight and swallowing.  By all appearances, the tumor was believed to be a low-grade benign tumor.  This was hopeful news while they awaited the pathology report. 

Leah burst into tears when she first saw Jake in recovery after his surgery.  There was no breathing tube, tracheotomy or feeding tube!  Instead, her boy reached out his arms and asked for a hug from his mom.  Sweeter sounds a mother has never heard.

Jake suffered paralysis of his facial muscles from the surgery.  This affects his ability to talk, smile, blink, yawn…everything that we take for granted about our face as we move through our day.   He is unable to blink or close his eyes so he wears eye weights 24 hours a day to weight down his eyelids.  He must also have drops in his eyes all thru the day as well.  Eye surgery is likely to happen in the near future for Jake.

Jake recuperated for 7 days in the hospital. Then, upon discharge immediately began his physical therapy and speech therapy to begin the hard work of rebuilding what the surgery destroyed.  He hopes to regain control of his facial muscles.

A week and a half after the surgery the Offutts were called in for a meeting to speak with the oncology team and a social worker.  They learned that the suspected low-grade tumor was actually a grade 3-4 glioma tumor.  It is fast growing, aggressive and hard to cure. 

There is no way to prepare yourself to hear those words, not as a young man who has the disease, or the parents who would give anything to take the disease away from their child.  The Offutts knew they were on course to face every parent’s worst fear…a life threatening disease coming in like a tsunami, attempting to destroy everything in its path.

Leah scribbled as many notes as she could between tears, knowing she would be able to recall little after leaving the meeting.  Yet, as a mother preparing for battle, she needed to be armed with every bit of knowledge that would help her prepare her son to beat this disease. 

Jake has Anaplastic Astrocytoma and has just completed 6 weeks of radiation and chemotherapy treatment.  To face this battle before him, he is calling on his martial arts training that’s been a part of his life since he was a little boy.  Jake is a 2nd degree black belt in Taijutsu.   Jake, Leah and Joe are all set to battle and bringing everything they have to this fight.  Leah and Joe marvel at Jake’s tenacity.  Jake has displayed far more maturity than they imagined themselves being able to muster at the age of 14.

This fight is an exhausting roller coaster that leaves little time for rest.  The treatment involves a grueling combination of drugs to help destroy the cancer, control the migraines, and help Jake’s body to heal.  The chemo and radiation treatments required daily travel to Hopkins, so Leah has taken a leave from her job as a teacher.  The radiation causes swelling in Jake’s brain which then results in migraines.  Several times these migraines were so severe Jake’s needed to go to the ER.

Now that radiation and chemo are completed, the Offutts are hopeful they can reduce the other medications affecting Jake’s migraines.  They are eager to see a positive effect from the scan that will come in the next few weeks.

The Offutts are incredibly grateful for the outpouring of support they have experienced from their family and friends.  Beyond those closest to them, the community is coming together to help Jake kick this cancer diagnosis.  People who the Offutts have never met are praying for them and offering help.  Fundraisers are being organized all over town.   Ravens Sam Koch and Bernard Pierce surprised Jake at a recent basketball game.  Sam Koch’s family invited the Offutts to their home upon hearing what a huge Ravens fan Jake is.  They spent the evening together celebrating football and family.  A sweet neighbor who works for Fed Ex drove several hours to get a medication stuck on a truck to avoid Jake missing his essential medicine. 

Others are sharing stories of how Jake’s courage has inspired them to realize what is truly important in life.  His courageous example is a testament to believing the best in every situation, no matter how difficult it may seem.  Leah says, “Jake is a hero to both Joe and I.  He inspires us to persevere, just as a true ninja would do.”  Jake’s response to all this, “I think this is making me a stronger, more spirited person and hopefully afterward I will be stronger too.  I’ve talked to some other cancer patients who have gone through this and they are doing fine now.”  For updates on Jake’s progress or to help support his fight, please visit www.jakeskickinit.com