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
Jake’s story is so inspiring and the photography is beautiful…Warm and touching. We are thinking about and praying for Jake and your family often…Thank you for sharing your story and your strength…Thinking of Jake and your family often….
Thank you Teresa and I know the Offutts covet your prayers.
Beautiful…..words can’t convey the sentiment in the pictures.
We love you all……
Thank you Susan.
Beautiful…. Continued prayers for the Offutt’s journey.
Thank you Jan. You are acquainted with a cancer journey. I know they appreciate the prayers!
Thank you Chris.
You have captured the beauty and strength of this wonderful and loving family that I am so blessed to know!
Thank you Kim, I know they are grateful for the therapy you have been instrumental in providing to Jake!
Jen, thank you for the beautiful photos, and for documenting the Offutt’s journey so far so masterfully. The Offutts are a beautiful family, inside and out, and your photos and writing show that. I pray for Joe, Leah, and Jake every day, as I know so many others are doing as well.
Thank you Sherri, you are right, they a beautiful family in so many ways!
A story that makes you count your blessings and set the important things first. Thank you for sharing and bringing us all a little closer to this family. We have already witnessed this families love and strengths first hand at many functions but to see it in pictures ties it all together – amazing. What a beautiful job. Our continued prayers and love are sent everyday.
Thank you Michelle and I know the Offutts covet the prayers of you and your family! I pray these portraits are a reminder to pray and hold tightly all those you love.
Thank you for sharing these amazing photos of this amazing family. Even though I know their story, reading it again with the pictures brought tears to my eyes.
Thank you Misti. May you cherish each day.
Like you, my wife of 42 years was recently diagnosed with cancer. She is an incredible human being. Kind, positive, practical and spiritual and most importantly a nurse of 42 years. As long as I have know her she has devoted her life to caring for others. When diagnosed and given a dim prognosis she told me she was going to focus on living. My thoughts were how would my wife’s tiny body hold up to a tough regiment of chemo treatment. Well into 2 months of treatment she is holding on to her spiritual faith. I have shared your story with her. She sends her love and prayers for you and your family. Both of you are being treated at the best hospital in America. Both of you are the greatest inspiration of profound human spirit. God bless and God speed my friend and your family.
Thank you Nick for sharing this and I pray your journey with your bride is filled with hope and healing as well!
Anyone who knows the Offutts knows about their journey. Your amazing photos and words have made it possible to have a glimpse into their reality in a way that was not possible before!!! You have captured the very essence of who the Offutts are with dignity and grace and unsurpassed POWER!!! The Offutts are one of the strongest families I know (as I know several other families with cancer survivors). What a tribute you have shown to their strength, faith and perseverence! Thank you for showing us so poignantly the true meaning of life and love. The Offutts are never far from my mind, and I pray for them every day. I will continue to pray for them throughout their journey and beyond. God Bless You, Sensei Offutt, Mrs. Leah and Mr. Jake for letting us peek into your life and journey!!! You all are truly phenomenal!!!
Thank you Trudy. I hoped we would be able to capture the strength and beauty of the Offutts as a family whose strength is united as they battle and so deeply rooted in love.
Jenn, what beautiful photos and moving account of the Offutt’s story. My prayers have been with Jake and his family from the start. I have had the pleasure of working with Leah in the past, but I thank you for your gift, which makes this family just as "real" to those who don’t know them. <3
Thank you Suzanne…I pray that this helps raise awareness for the Offutts as they fight this horrible disease and the support surrounds them every step of their journey!
Leah was my daughters Kindergarten teacher. Not just any teacher. She.Was.Amazing. Her passion for teaching and life is incredible. She would put hours into taking photos and making a calendar for each child, and also a CD of photos of each of her students. That is a one of a kind teacher and lady! So she has been a mother to many and my heart aches for her. Our family is praying for Jake, Leah and Joe, and will continue to do so. "Be strong and courageous. Do not be terrified, for the LORD your God goes with you; He will never leave you or forsake you." Deuteronomy 31:6
Susan I know Jake, Leah and Joe all covet your prayers and are blessed by your kind words. Thank you.
[…] and that has only become more important to him with each passing year. One of his close friends, Jake Offutt, lost his battle with brain cancer 5 years ago. Watching a friend walk through the horror of […]
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