Drinking the Cup

June 10, 2012 (Day 24 of Continuation Phase)

I receive a daily meditation email from the Henri Nouwen Society to help inspire and guide my heart.  Back in May the reflection was about Drinking the Cup.  I saved the email and I find myself looking back on it often, I find myself repeating the phrase “Drinking the Cup”, often. 

Nouwen’s writing:  After firmly holding the cups of our lives and lifting them up as signs of hope for others, we have to drink them.  Drinking our cups means fully appropriating and interiorizing what each of us has acknowledged as our life, with all its unique sorrows and joys.

How do we drink our cups?  We drink them as we listen in silence to the truth of our lives, as we speak in trust with friends about ways we want to grow, and as we act in deeds of service.  Drinking our cups is following freely and courageously God’s call and staying faithfully on the path that is ours.  Thus our life cups become the cups of salvation.  When we have emptied them to the bottom, God will fill them with “water” for eternal life.

The other night on what should have been John’s last day of school we were at home creating a “fun” night.  John wasn’t able to join in on the usual last day of school festivities but Rich & I wanted to make an attempt at a special night for the kids.  So, Bella came up with a great idea, Thai food & board games!  It looked and felt like old times.  We laughed and the kids had a good time.  Later, we took John upstairs for our nightly ritual of administering his chemotherapy pill but he started to feel “icky”.  Unfortunately, chemo doesn’t stop for “icky” so; we delivered his nightly dose only to have it abruptly come back up.  The party only continued to go down hill.  Rich & I had the pleasure of sifting through his vomit trying to find the chemo pill (to see if we needed to re-administer).  As I was wiping John face and holding his little head up I clenched my teeth and said over and over and over “Drinking the Cup”!  By saying it I acknowledge the path that God ask me walk.  I have come to understand what is my unique sorrow, John’s cancer and what is my unique joy, John is ALIVE.  My cup holds my truth; my son has Leukemia and my family is forever changed.  Acknowledging what is in my cup has caused me great sadness but it has allowed me to grow spiritually.  It has allowed me to grow life long friendships.  It has allowed me to see that my cup is not the cup full of unique sorrows and joys but so too are your cups. 

How does an 11 year-old drink from his cup? John drinks it with Unstoppable Determination!  This past Tuesday was an incredibly special day for John.  Charlotte Prep gave him the 5^th grade Perseverance Award.    It exemplified his acknowledgment of his life’s cup and his resolve to faithfully and courageously follow His path.  As the room rose to its feet, as John stood on the stage with tears rolling down his cheeks I said to myself, he’s “Drinking the Cup”!  John has a unique sorrow, Leukemia, but he also has the belief that by “Drinking the Cup” he will enjoy a beautiful life! 

John’s Unstoppable Determination Award: Kleenex Alert!

http://www.youtube.com/watch?v=Qv1kdQ1t_e0&feature=youtube_gdata_player

John and I are headed back to Memphis on Wednesday for Round 3 of Phase 2.  We are not checking our cups at the gate we are carrying them on!

I hold my cup up in FAITH and HOPE acknowledging not only God’s call for me but for my family and their cups.  I hold my cup up to yours recognizing your unique sorrows and joys.  Cheers! 

Please continue to pray for John’s cure!

Love Kathy

Home

 May 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 14^th.  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 5^th 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

MRD Negative

May 18th, 2012 - Consolidation Day 2

The most beautiful news was delivered this morning, MRD NEGATIVE!  That means there are no signs of Leukemia in John’s body.

Thank you St. Jude.  Thank you Dr. Pui, Miss Martha May, Miss Justine, Miss Amy, A Clinic, Medicine Room and inpatient nurse!  You all are miracle workers. 

Thanks be to GOD.  Thank you all so much for faithfully praying for John.  The love, support and prayers have held Rich, John, Isabella & I up for the last 53 days.  We love and appreciate all of you!   

What’s next?  A 2 3/4 year treatment protocol to make sure that the Leukemia does not come back.  We began phase 2 (Continuation) of the protocol yesterday.  This phase is 8 weeks long.  He will receive 4 “high” dose Methotrexate chemotherapy treatments, 1 HDMTX treatment every 14 days.  He will need to be inpatient (at St. Jude) for all treatments.  In addition he will take 6MP a daily chemotherapy pill.   John will be able to spend some time at home in between these treatments.  If counts permit he may be able to sneak in some visits with friends :)  Then, on to Phase 3 (continuation), 2 1/2 years of weekly chemotherapy treatments, daily chemotherapy (6MP) plus the dreaded steroids.  The first 30 weeks of Continuation phase are going to be rough (we do the Induction phase over 2 times plus other aggressive treatments).  We’ll need to be in Memphis for a large part of the initial part of phase 3.  Whatever it takes!   We’ll provide more details as things unfold. 

We are bringing John home next week for a short visit.  We can’t wait to reunite our family! 

John Hagen you inspire me!  UNSTOPPABLE DETERMINATION!

Love,

Kathy

From Mama

May 13, 2012 - Induction Day 48

Dear John,

Being a mother is a gift.  Being your mother is a blessing!

There are many words I could use to describe you; beautiful, kind, loving, brave, courageous … the list could go on and on.  I stand and look at you in amazement.  I look at you and I see God’s Grace and I am reminded that every minute of every day with you is a blessing.

As your mother my job is to make everything okay, to fix everything that is broken and protect you from life’s evils.  As your mother I wish I could take away your sadness, your pain and your suffering but I can’t.  It breaks my heart that I can’t.  But, as your mother I CAN hold you when you need to be held, listen when you need to be heard, wipe your tears from your face and stand with you in this journey.  I will fight with you and we will beat this together! 

You have made me a better person.  You have made me a better mother.  You have taught me to celebrate all of the joys that you bring to my life; the kindness of your smile, the sound of your voice, the feel of your arms wrapped around me, and the warmth of your fingers draped over mine.  Those are the moments that make being your mother amazing.  Those are the moments that fill my heart with your love.

Thank you for blessing me with your love.

I love you so very much.

Mama

XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO

Dear Bella,

Loving you is gift from heaven.  Having you as my daughter is a true blessing.  

I am so proud to be your mother.  You are everything I hoped you would be and so much more.  You have a beautiful heart and a loving spirit.  Even at 13 you have showed amazing courage and strength.  You have seen a side of life that is heartbreaking and instead of pulling away you’ve reach out with even more love and compassion than ever before.   Your unconditional love is inspirational.

So much in our lives has changed over the past 2 months but one thing that will never change is the love that I have for you.  Now more than I ever I will appreciate all the loving moments you share with me; a hug, a kiss, a story about your day (I’m even grateful for emails and texts :)).   

I wish I were with you today, on Mother’s Day.  I wish I could feel your amazing hugs and tell you how much I love you (in persone).  But, soon we’ll be together and I’ll cover with you love! 

I love you so much.

Thank you for your heavenly love.

Mama 

Update:  John’s body is showing signs of recovery.  His counts are creeping up steadily.  Dr. Pui is anticipating MRD testing early next week (we’ll Tweet the date when we have a definitive day).  We continue to pray that God will hear our prayers and Rich and I will hear the words we have been desperately waiting to hear, negative MRD.   While we wait for his bone marrow results, John will immediately begin Phase 2 (2 months:  high dose Methotrexate (MTX) chemotherapy administered every 14 days).  These treatments will be inpatient treatments, due to potential toxicity.  He will need to be monitored closely and stay at St. Jude until they can verify that his body is able to clear the treatment.  Then, we will be discharged and be allowed to come HOME!  Yes, we are bringing John HOME.  It will only be for around a week or so but he needs to be in his home!  We are excited about being reunited with Bella and being together as a family.  Hopefully we’ll be able to travel back and forth to and from Memphis during the summer.  If his blood counts allow he may be able to visit with friends! Yay! 

Please continue to pray for John’s healing and cure.  Pray that he doesn’t endure pain and suffering from his treatments.  Pray that I will be blessed with a lifetime of Mother’s Days with John.

Love,

Kathy   

Healing Prayer

Please pray with Rich & me for John's healing and cure.

Healing Prayer

Jesus I call on You right now in a special way.  It is through Your power that John was created.  Every breath John takes, every morning John wakes and every moment of every hour, John lives under Your power.

Father, I ask you now to touch John with that same power:  For if You created John from nothing, You can certainly recreate him.  Fill John with the healing power of Your Spirit,

Cast out anything that should not be in him.  Mend what is broken.  Root out any unproductive cells.  Open any blocked arteries or veins and rebuild any damaged areas.  Remove all inflammation and cleanse any infection.

Let the warmth of Your healing love pass through John's body to make new any unhealthy areas so that John's body will function the way You created it to function.  And Father, restore John to full health in mind, body and spirit, so he may serve You the rest of his life.

Amen.

(sent to me by Megan Young)

God bless,

Kathy