Survivor
John J. HagenJuly 18th, 2012 Day #114
Phase 3 Week #1 Day #3
Survivor. @LIVESTRONG had recently brought up the topic about being a survivor so it been on my mind. Some people think of themselves as survivors at diagnosis, some when they get the coveted message that they are in remission and others when they complete treatment. I hadn’t brought up the term to John. I wasn’t sure if he thought of himself as a survivor and I wanted that feeling, that very deserving title to come to John in his own time. It did!
Last week John was reading a book for school. Afterwards we discussed what he thought of the book and the main character. To sum it up, at first he thought the book was just about a boy surviving in the wilderness. Then John said IT! Then he said, “it wasn’t all about surviving in the woods it was about being a survivor, the boy in the book is like me, a SURVIVOR”! I hugged John tightly and affirmed that I too think of him as a SURVIVOR! I don’t think he realized the magnitude of his words because he just smirked at me as I kept hugging and kissing him. I’m not even sure when he identified with himself as a survivor, I’m just glad at that moment he shared it with me.
I have often found myself thinking about how cancer will shape John into the man that he will become. Now I dream about how being a SURVIVOR will mold John into a man that will do wonderful and great things with his life.
John has officially put Phase 2, Continuation, behind him. It was 2 months of trips back and forth to St. Jude. Every two weeks he was inpatient at St. Jude for high dose treatments. The road was bumpy at times, filled was some highs and some lows. John still yearns for his old life, a life that doesn’t revolve around cancer. I sadly wish that for him as well. We’ve tried as a family to push through those dark days and celebrate and enjoy the good days. The good days consisted of lots of fun! He got to have a few friends over, visit school, go see some movies, go out to dinner, play ping pong at Rich’s office and swim! There were a lot of good memories made over the last two months.
We all needed to enjoy the good days these past couple months! Just knowing what the good days look and feel like will hopefully inspire us to get through the bad days. One special moment inspires me. John can only swim in a private pool (which we do not have) so I asked our neighbor if John could swim. They graciously allowed us to bring John over for a dip in the pool. John was so excited. Rich and John played in the pool; there was lots of laughing and splashing. It was great! Then the sky opened up and the rain came pouring down. John popped his arms out of the water and reached them up to the sky. He was smiling from ear to ear as the rain poured over his beautiful face. He later said he felt free! It felt wonderful just knowing that he felt free, even if it was just for a moment.
Moving forward, St. Jude gave the official go ahead for Phase 3, Continuation, to begin. Continuation is 120 weeks of weekly treatments! We kicked off this phase here in Charlotte at Levine but will still need to travel to St. Jude for certain treatments and procedures. We have grown to feel safe at St. Jude so we were very anxious about John receiving treatment elsewhere but Levine Children’s Hospital, under the direction of Dr. Pui, did a great job at Monday’s treatment! It felt good to bring him home after treatment and have him snuggle in his own bed. The first quarter of this phase is intense but we believe that St. Jude’s protocol will cure John of his Leukemia and give him the ability to live a long beautiful life.
Please keep praying for John to be cured of his Leukemia and pray for him to have strength to endure the long road ahead.
Thank you to all of you who continue to walk beside us in this journey. We know it isn’t easy to travel this road with us and we appreciate your love and support.
Love,
Kathy
Follow us on Twitter @GKjohnjhagen @RichHagen @Isabella_Hagen and @2grapeleaves (I’m Greek, John & Isabella are my two grape leaves :))
Reader Comments (9)
This post brought tears to my eyes. You have an amazing family and I'm thrilled to be a part of your lives!
Hi Kathy
The old saying "no news is good news" does not apply to your great update!! Bravo!
Reading your post and having the great pleasure to see John last week really reinforces the great work of St Jude.
Thanks for sharing with all John's fans....
How is Bella doing on her trip...she must miss the home cooking!!!!
God Bless you, Rich and the grape leaves!!
Once again, I am amazed at the way you share what it is in your heart while painting the picture of what John's journey is all about. Lots of love and prayers to all of you and your precioius Survivor.
Hi John, it was wonderful to read your mom's lastest update. Papou and I wait for them. We always like to know what is happening. We never hear enough about you. Even though we call mama every day ..several times a day.LOL..... It's so great that you had some really fun times. Prayfully you will enjoy the rest of the summer. Every day that you have set aside time for a movie or a swim is great...just great! We love you and Bella so very much. Papou and can hardly wait to see you. We have a run to see my sister this week...Then we are going to see Johnny in KY. And before you know it we will be there. I will call you in the morninng. Something funny. I was in a pool this weekend.......my cell phone fell in! Papou was not thrilled! He was so funny!
P.S. lots of grape leaves love you! Kathy, you bring so many peace with your updates. And we will walk the walk with you.....every inch, love, mom
He is a survivor in every sense of the word and i'm glad he sees that in himself! I am glad his life was able to return to some sense or normalcy during phase 2. I'm still praying for him all the time and am so happy to hear your update!
You are all survivors! I miss you all and think of you often. May you always relish the warmth of a hug.
You truly are a survivor John! My thoughts and prayers go out to you.
John is an inspiration to everyone. We are all cheering him on and thinking of all of you. Kathy, you have such a gift for writing. JHUD!!!!!!