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John J. HagenMay 30, 2012 - Continuation Day 14
Home. It was just another one of those things I took for granted. I drove to and from school, to and from soccer, to and from errands, never really appreciating home. As you know, we left very abruptly for St. Jude. Rich & John never returned home after he was diagnosed at the hospital and I only briefly went home to throw a few things in a suitcase. I kissed and hugged Bella goodbye and didn’t look back. After 2 months at St. Jude we couldn’t wait to bring John HOME!
May 14th. We were all holding our breath. What was he going to say? Were we going to hear him actually utter the words "you can take John home"? Yes! Finally, Dr. Pui gave us the go ahead, take John HOME. He gave us the news at 9:30 a.m. and by 11:00 a.m. we were checked out of the RMDH and on I-40! (ok, so we packed the car in advance just hoping he was going to say yes!). The car was stuffed with the exception of a very plush bed we made John in between the back seats. It took us 10 hours to drive our precious cargo HOME! A rush of emotion came over me as we turned into our neighborhood. Cancer awareness ribbons on every mailbox in the neighborhood greeted us! It was beautiful. John couldn't contain his excitement as the car rolled into the garage! He was all smiles. Huge, big, beautiful smiles stretched across his face! It was pure joy! The inside of the house was decorated with banners, balloons, streamers and gift baskets. He felt incredibly special. He went from room to room just soaking in all the love spread throughout the house. Finally, at 2a.m. we tucked John into his own bed. The next morning we saw Isabella for the first time in almost 7 weeks! It was the best! We missed her so much! There were lots of hugs and kisses! The next night he sunk his teeth into some of his favorite foods, prepared with lots of love by Grammie! While John was home, he spent a lot of time just playing in his room, enjoying some independence and freedom. He even took a spin around the cul-da-sac on his bike (yes, I was freaking out!). He also took advantage of the nice weather and raced his awesome new remote control car from his TK friends up and down the street, threw a Nerf ball with Rich and exercised his legs with short walks. It was a beautiful sight! It often brought tears to my eyes, happy tears. I will never take home for granted again. Home felt amazing!
Leaving St. Jude was a bit scary. I feel safe at St. Jude. I have grown to trust and believe in the miracle that is St. Jude. We needed to feel also feel safe at home so one of our first stops in Charlotte was Levine Children’s Hospital to meet John’s “home” doctor. As we parked the car my heart was racing, the anxiety of a new hospital and a new doctor overwhelmed me, I got a pit in my stomach and found myself clenching my teeth trying to hold myself together. But, after a few deep breathes I put my arm around John and held Rich’s hand and we all walked through the sliding glass doors together. We had to remind ourselves to stop comparing everything to St. Jude (because nothing can compare). The Charlotte practice was great! Dr. McMahon is looking forward to working with St. Jude & Dr. Pui to provide John fantastic treatment while we’re at home. Home felt safe!
After a few days John was begging to play with a friend. It had been 8 weeks since he'd seen a friend. He's been lonely and needed companionship! Dr. Pui said it was okay as long as his buddy was healthy and clean! Check & check! So after two months, John finally just got to just be a kid! He enjoyed a couple hours of fun & friendship with a good friend. Hearing them giggle was beautiful. Home felt happy!
As you all know soccer was a major part of John’s life. A big part of his identity was being a goalkeeper! He WILL play again. He misses the game, his teammates and especially his coach, Erik. Cancer has taken away his ability to play the game but not his ability to stay connected with relationships that soccer fostered. John couldn’t wait to see Coach Erik. So, they met for lunch. Just the sight of Erick had John in tears, which brought Rich to tears. John said he was overcome with emotion. He missed his coach so much. They have a special relationship and it’s a relationship that I hope will continue even off the field! Home felt connected.
One of Dr. Pui’s many parting words was “wrap up 5th grade”. I actually said to Dr. Pui “maybe John will be as smart as you someday”, his reply “I’m not smart, I just work harder then most people”. It was pretty funny! I’m actually not sure if anyone in the world can be as smart as Dr. Pui, he is a brilliant man! So off to Charlotte Prep I went. The drive to school brought back memories and I cried most of the drive. I wanted John to be in the car, I wanted to be driving John to school. By the time I drove into the parking lot I felt a calmness come over me. I know John will someday be back at CPS and after meeting with his teachers, Mrs. Torres and visiting with everyone on campus I know they will welcome John back with open arms. Being a part of the CPS community is truly been a blessing. Home felt welcoming!
I’ve learned so many life lessons in just this short period of time. I’ve learned that Home isn’t a house. It’s a community, a community of loving, kind friends and family who support and love John and our family. Thank you!
Back to Memphis. We arrived back at St. Jude yesterday. We zipped around the hospital today making our normal rounds and added a few pre-op appointments to the schedule. Tomorrow John will get his new and improved subcutaneous port (his PICC line will be removed), and will begin round 2 of Phase 2 with an LPIT treatment and high dose Methotrexate (inpatient).
I am reminded of the gift of life every time I turn the corner at St. Jude. I see hope in the miracles of ACT patients (After Completion of Therapy), I see hope in the families who courageously walk this journey with their child. But I also see sorrow and pain. Today my heart ached for a boy that I don’t even know. He was suffering so badly and struggling to hold on. I couldn’t help but be overcome by sadness. I cried for him and for his family. I prayed that he would turn the corner and a miracle would be waiting for him. I am part of the St. Jude family and I want miracles for all children. I prayed to St. Jude, find a cure and save that child, like John!
Please continue to pray for John’s treatment to be successful, that he is cured of his Leukemia and able to live a long beautiful life. Please pray for healing for all of God’s children suffering. It is a long, hard battle and I continue to have faith that God will hear our prayers.
JHUD! John Hagen, Unstoppable Determination!
Love,
Kathy
Reader Comments (5)
We can't wait for you to be home again! It was great seeing you last week. I'm so glad Isabella is there with you. Give John a hug for us!
Courtney
Bravo!! You write better then Hemingway!!! Inspirational. Thanks! You made today better then I expected. Xoxoxo
Kathy, You always lift my spirits and fill my heart. I want to do that for you. I enjoyed our chat and hugs. Isabel misses Bella. We miss seeing you all every day buzzing up and down the street. We look forward to you all coming home. All our prayers are with you. Love to you all, The DuBose Family
Kathy, my heart smiles as you speak as a mother to your incredible son. You and Rick are magnificent parents. Isabella, our precious angel is a child that we are all proud of. She stood straight and helped by giving you and Rich the space to be with John. In all my 'out reach' care, I always reminded the families just how important they where. Bella gave you the peace of mind to be with John.
I pray for all of you everyday. John, smile everyday..........ypu are brave and I can help you with your homework LOL, noni
John...looking forward to seeing you this next week. We can talk about the Civil War when you are up to hearing some interesting stories. I thought it was so funny today when mama told me you and Bella were playing with your bat and the bubbles. What imaginations you and Bella have. Will you teach me how to Twitter at dinner on Wednesday evening?
Lots of love and huge hugs.