I Can Dig Deeper IF I Have To

Phase #3, Week #10

Treatment Day #178

ReInduction I is over, done!  See ya! Good riddance!  Ba Bye!  Ugh, it was so hard on John.  The side effects of John’s treatments pummeled his body.  He is swollen from the steroids and beaten down from the pain. Unfortunately, John spent the last few days of ReInduction I inpatient at St. Jude.  We just couldn’t get control of his “nerve” pain (a chemotherapy side effect).  It radiated down his back and legs and caused him debilitating pain.  His screams were piercing, the pressure breaking capillaries in his cheeks & eyelids!  Thanks to our new friend, HydroMorphine, John was able to get “some” comfort!  He was discharged after a few days and allowed to rest and recover back at The Grizzlies House with our old friend, Morphine.

Last night as I tucked John into bed, I told him how proud I was that he found the strength to push through the anguish of the last few days.  His response took my breath away.  He said, “I CAN DIG DEEPER IF I HAVE TO”!

Cancer has taught John the real definition of determination.  It has taught him how to reach down inside himself, when he truly believed he is empty and find strength! 

John is my HERO!  

We will be in Memphis for another couple weeks.  John is awaiting a BIG treatment next week followed by a Lumbar Puncture, Chemotherapy to the Central Nervous System, and a MRI scan of his joints (to look for joint damage from high dose steroids) the following week.

ReInduction II is also right around the corner.  This will be 3 VERY intense weeks of treatments and will most likely be followed by several weeks of recovery!  We anticipate John will be at St. Jude the majority of November and December.  We pray we will have him home in time for Christmas!

In a couple weeks John will be SIX months into treatment!  His strength and determination has carried him through intense rounds of treatments and agonizing side effects! Most importantly, SIX months into treatment John is CANCER FREE!  John is in REMISSION! John no longer has cancer! 

#UnstoppableDetermination

Thank you for loving him, for praying for him and standing with him in this journey.

Love Kathy

Don’t forget, September is National Childhood Cancer Awareness Month.  Make a difference in a child’s life.  PLEASE consider giving blood this month in honor of John Hagen!  Blood products breathe life into children enduring chemotherapy treatment!

T is for ...

The walls at St. Jude are covered with murals and children’s artwork.  One of the walls is called the ABC wall.  It is covered with letter boards ranging from A-Z.  Kids have written a word for each letter and what that word means.  So hear is my letter board.

T is for … Tears

Tears of JOY!  

Wednesday (August 29^th) we received great news.  John is MRD NEGATIVE!  He remains CANCER FREE!  We waited 56 long hours for Dr. Pui to deliver the results and it was worth the wait.  In addition, his brain MRI is “normal” and his spinal fluid is “clear”!  GREAT, GREAT & GREAT news!

Tears from pain. 

Typhlitis:  John is suffering physically.  He was admitted to St. Jude this past Wednesday with a very inflamed “belly”.  Also known as Typhlitis, inflammation of the intestines.  Oh my, it caused serious discomfort!  He was wreathing in pain.  So many tears ran down his beautiful round face!  After two days of a stick diet of NOTHING, around the clock antibiotics & morphine, his belly is on the mend. 

Nerve Pain:  One of his chemotherapy treatments he receives gives him nerve pain.  While he takes medication in advance of the treatment and throughout the following week … it still packs a punch every time!  So, this morning’s breakfast consisted of Morphine and an Eggo waffle.  Breakfast of a champion!

Tears from isolation. 

John is also fighting a bacterial infection.  So, he is officially in “isolation” until cleared by Dr. Pui.  What does that mean … we enter the hospital through a separate area & we wear the white marshmallow suits when we have appointments at St. Jude.  (it protects John and the other immune compromised kids at St. Jude).  John already feels “different” and self-conscious; this added label has caused lots of tears!  We moved out of the RMDH and into an isolation room over at the Grizzlies House.  John in confined to the room other than clinic and treatment appointments.  (Once his counts are high enough he will be able to leave the St. Jude campus, he just can’t be around immune comprised people).

Tears from exhaustion.

John is physically exhausted.  It’s been a very long, hard week! It began this past Monday  (Day #1 of ReInduction) and consisted of 15 hours of scheduled appointments: blood work, A Clinic Visits, MRI scan, Lumbar Puncture with central nervous system chemotherapy & IV chemotherapy treatments that took us late into the night.  Exhausting! Totally exhausting! (Thank goodness for the St. Jude Starbucks :)). 

John is emotionally exhausted.  Between the treatments, the inpatient stay and the isolation, John is totally wiped out!  It has been heartbreaking to hear him cry out “why me”, “I can’t do this anymore”!   Sadly, I ask the same thing over and over again,  “Why him”!  It’s so unfair! So cruel!

Tears of gratitude. 

I am eternally grateful for the level of care John receives here at St. Jude!  Dr. Pui & Ms. Martha May ALWAYS do the very best to alleviate John’s pain (physical & mental).  Dr. Pui even came up to the inpatient floor several times a day to visit John & perform some fun magic tricks.  He is amazing with John and I am grateful that he takes time out of his busy day to put a smile on John’s face.  I could go on and on and on about how grateful I am to have Dr. Pui as John’s doctor.  We are grateful that Dr. Pui has Unstoppable Determination to cure Leukemia.  John calls it PUI POWER!

A big thank you to everyone back at home!  Thank you Noni & Papou for taking care of Bella! Thank you for feeding my parents and Bella … the meals are wonderful!  Thank you for driving Bella to and from school and watching over her while I’m away.   Rich & I appreciate the posts, emails, tweets and texts from friends and family who carry us through these difficult days.  We are so grateful and amazed that you all continue to walk with us on this journey.  Thank you!

We are wiping away the tears of this past week and pushing forward!  Together with your love, support & prayers and John’s renewed UNSTOPPABLE DETERMINATION we will continue to fight!

Please continue to pray for John’s forever cure and for better tomorrows!

Love,

Kathy

September is National Childhood Cancer Awareness Month.  Make a difference in a child’s life.  Give blood this month in honor of John Hagen!  Blood products breathe life into children enduring chemotherapy treatment!

ReInduction #1

Treatment Plan:

We are packed and headed back to St. Jude to see the amazing Dr. Pui & Ms. Martha May (his nurse :)).  The last few weeks have been incredibly rough for John but he is forging ahead with treatment as planned.   John is scheduled to begin ReInduction on August 27th (similar treatment to what he did the very first time he arrived at St. Jude 5 months ago).  It's called ReInduction # I (ReInduction #2 happens in November).   It's 3 weeks of very intense treatments!  In addition he'll have scans and MRD testing.  I know St. Jude will take great care of him but the bottom line; John is going to get pretty sick again.  He's not happy about the big treatments, loosing his fuzzies that finally cover his head, being away from home & leaving Bella again!  But, we believe it's part of his journey to his forever cure!  We are praying that he'll tolerate the therapy well and we'll be allowed to bring him back to Charlotte to recover in the comforts of home. While at St. Jude we'll be staying at the Ronald McDonald House again. I'm more prepared this time around, I packed him soft & snuggly pillows, sheets and blankets to keep him as cozy! Considering the first time we went for Induction we just had the clothes on our backs and a few other necessities, it's a vast improvement :).

Please pray that John's MRD test result is still NEGATIVE, meaning NO trace of cancer!

Thank you for your love, support & prayers!

Love,
Kathy

PLEASE keep in touch, he gets lonely!

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Better Tomorrows

August 14^th, 2012

Phase #3 Week #5 Day #2

Treatment Day #140

Every night as I close my eyes and pray, I ask God for better tomorrows.  What does better tomorrows mean? 

For John, better tomorrows mean a life without suffering (physically and emotionally).  I pray that his tomorrows; bring him one day closer to his cure, bring him one day closer to renewed strength and one day closer to the great possibilities that lay ahead.  I pray that his tomorrows are filled with love, laughter, independence and inspiration.

For Bella, better tomorrows mean a life without worries.  I pray that her tomorrows are filled with genuine friendships, unconditional love, unbridled laughter, and endless opportunities.

For Rich, better tomorrows mean a life without carrying the weight of the world on his shoulders.  I pray that there is a day that he doesn’t need to carry so much pain inside so that we don’t have to.

For me, better tomorrows mean a day where I am not so broken.  I pray that the small miracles that happen everyday will help me gather strength to walk this journey with John without succumbing to fear and heartache.

For our family, better tomorrows mean a day where our prayers are answered and this phase of our lives is put behind us.  Not to be forgotten but, to grow and learn from.

Please continue to pray for John and his better tomorrows as we head back to St. Jude for few weeks for ReInduction 1.  He’ll have a rough couple of weeks filled with very intense treatments.  What gets John through it?  Knowing that better tomorrows lie ahead; seeing friends, dropping in at school and kicking the soccer ball around!

John’s been able to get out and about a little bit this summer.  I’ve posted a few pictures of fun summer moments for you all to see and enjoy!  (under the photos tab above).

As always, we can’t thank you all enough for your continued love, support and prayers!

Love,

Kathy

Follow us on Twitter @GKjohnjhagen @RichHagen @Isabella_Hagen and @2grapeleaves for updates!  #UnstoppableDetermination

Survivor

July 18^th, 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 :))