Warrior
John J. Hagen
Warrior Dash: Rich & I recently completed the Warrior Dash in honor of our warrior, John! It was a mud-crawling, fire-leaping, extreme running event. It was also a great way to fundraise for St. Jude. With the help of family and friends, Team JHUD raised over $11,000, earning us the title of top fundraiser at the event! Thank you to all of you who helped us surpass our goal and most importantly help St. Jude achieve their mission, saving children & finding cures!
Warrior Definition: a person that shows great courage
Warrior: John! John continues to push himself through the grind of Leukemia treatment. Fighting like a warrior for his FOREVER CURE!
The Warrior’s Medical Status: John celebrated his one-year remission, May 17th! Amazing! Currently, he is on week 42 of the 3rd phase of treatment (week 64 of treatment), he has 78 weeks to go! He receives weekly treatments. They are low dose treatments in comparison to the high dose, intense treatments he received last year but they still pack a punch! We head to the Charlotte clinic on Mondays, he receives treatment then he rests and recovers for about 2 days. He’s not overly nauseous, mostly icky (flu-like body aching icky). After that passes he usually perks up. But, there is the exception! John returns to St. Jude monthly for his IT-MHA (lumbar puncture, treatment to his central nervous system), VinCristine treatment and begins a high dose 5-day pulse of steroids. It is an ugly week! Aside from the brain fog of the IT-MHA, the VinCristine treatment continues to cause him excruciating nerve pain and the steroids are brutal on his joints and his spirits. During “hell week” he takes about 120 pills to help manage the many side effects. His future treatments: In the fall, John’s lumbar punctures reduce to an “every other month” schedule, Yippie! In December steroids are reduced to half-dose (if not sooner due to AVN). Next summer, we finally stop VinCristine! The following December, December 2014 John will complete his treatment!
The Warrior’s Physical Update: Next month when John returns to STJ, he will be getting a MRI to recheck the status of his AVN (Avascular Necrosis – bone death) in his knees. Dr. Pui will review the results with John’s Orthopedic Surgeon at St. Jude and “they” (really, Dr. Pui :)) will determine if John is able to continue on the high dose pulses of steroids that are causing the damage to his joints. I HATE steroids but I HATE leukemia more – My opinion, “I can have John’s knees replaced but I can’t replace John”! Let’s get his forever cure then rebuild those knees! On a good note, the neuropathy, nerve damage, in his ankles continues to improve! He works hard at his physical therapy and we are hopeful that after he stops getting the very nasty VinCristine treatments his neuropathy will be fully resolved. He continues to play a bit of golf when he’s feeling good. He really enjoys it and it’s a sport he can play with Rich as well as friends! He has also gotten back on his bike. It’s great for his circulation and it gives him a great work out :). As far as his appearance, he has an amazing head of hair with beautiful soft curls! I love it! He’s still a bit pudgy from the steroids but he is a handsome12 year-old boy!
The Warrior’s Emotional Update: John is having more good days than bad! On the good days his spirits are high and he dreams about his bright, beautiful future! He talks about getting back to school, hanging out with friends and going on vacation! He smiles and he laughs. It’s the best! On the bad days he struggles to see past the moment but he always pushes himself too see through the darkness!
The Warrior’s School Status: He’s a rising 7th grader! Yay! John completed 6th grade. It was quite a push at the end for him to complete his schoolwork but he worked very hard and finished all his required homework. You may recall that last year John had the honor of receiving the CPS 2012 Perseverance Award. This year Charlotte Prep honored John by awarding 4 classmates The John Hagen Perseverance Award! The recipients of the award demonstrated drive, dedication and of course UNSTOPPABLE DETERMINATION during the school year! How awesome was that of CPS! It made John so proud, me too :). John is spending time this summer brushing up on some writing skills, with his much loved writing tutor, hitting some required reading, logging in some hours on BuzzMath and attempting Rosetta Stone’s Spanish lessons. Keeping very busy!
Behind the scenes with the Warrior: I follow a blog of a Charlotte mom (whose beautiful daughter lost her battle with Neuroblastoma), she’s an amazing women, whom I have never met but her words are powerful and they often give me some much needed strength and inspiration. A while back she wrote, “you see what I let you see”. It’s so true! Our life is still SO hard and heartbreaking, our life is not “back to normal”. The small snippets that we “let” people see: John riding his bike down the street, lunch & a movie with a friend, a peek in at school, those are just “moments”. There is so much more to childhood cancer and John’s journey. What you don’t see: are the tears that stream down his face on Sunday nights in anticipation of receiving treatment, the loneliness he feels missing out on all the end-of-school celebrations and summer fun, the heartache as he watches neighborhood kids run and play with no inhibitions and pure innocence and lastly the pain and side effects of treatment! There is so much more to our story, to our life, than what meets the eye. Childhood cancer is HELL.
Sharing the Warrior’s Story: “Letting” others in, is a process. It’s something I am working on. It’s not easy to share John’s story in person. As I mentioned above I still edit what I share. For me, I do that not just for our benefit but for the benefit of others. Some people just don’t want to hear it. I used to be offended and greatly saddened but I’ve come to realize that not everyone “gets it” and it’s not my job to share John’s story in order to make them “get it”. It’s my mission to share John’s story with people who are truly interested. I want to share his story with others so that it means something, so that it makes a difference!
St. Jude Warriors: Rich & I are committed to spreading awareness and sharing the St. Jude mission. We believe that STJ, through it research and its remarkable teams of specialists, will find cures and save children just like John. No child should have to endure the torture of cancer treatment. Recently, Rich had the honor of speaking at a St. Jude, Taste of New York, committee meeting. He was able to share our experience at St. Jude through the eyes of not just a committee member but as a parent of a child in treatment at St. Jude! So very proud of Rich! Mark your calendars, Taste of New York, November 13th, 2013!
Warrior Dad: Happy Father’s Day Rich! I need to acknowledge what an amazing Papa Rich is! He is an incredible man. No matter how tired he is from a day’s work he finds the strength to be an amazing “caretaker”, husband & dad! It’s not an easy life but he proudly wears all these hats!
Unwavering Support for our Warrior & our family: I am still amazed at the love and support of our family and friends. We are so grateful to be surrounded by such amazing people! Thank you for walking this journey with us.
Please continue to pray for John’s Forever Cure! God hears our prayers!
Love,
Kathy
Reader Comments (4)
Yay John
Boo Make-A-Wish (Barefoot Contessa Part II?)
We are looking forward to seeing you in NY !
John, you make me a better person...each time I pray for you. You are incredible and I love you so.
The wonder of you is amazing... You have made such a difference in so many lives☺
And what a mama and papa you have! They are the best! And Isabella is also magnificent .... She loves you so. It won't be long and you will be planning Bora Bora. Happiness and god's Blessings dearest child. Love noni
Kathy,
Thank you for writing these posts. You are drawn into the depths of God's heart through this terrible journey. I firmly believe that he will never leave nor forsake you. The pain written in your posts is hard to taken, even as a friend in the outside. You show emence strength and courage to hold your sweet boy tight when you are just as shaken and unsure as he is. I hate that you are going through this. I am holding you, John, Rich, and Bella all up in prayer. I am so glad that you have each other. May you be held.
Love,
Debbie
Hi John
I am sitting here with your Noni. I have been following and reading about the challenging events of your life and always ask and pray about you. I am looking forward to more communication with you, now that I can access your world. I love your entire family and have been part of it since your Noni and I have been little girls. Your parents are wonderful and so are you!!
Love,
Cathy Spyres