It’s been one year since John’s diagnosis, March 25^th and one year since John arrived at St. Jude and began treatment, March 27^th.  John has come a long way!

John is looking good!  He has a full head of hair.  It’s a bit different: same color but much softer and silkier than before.  He loves it because he thinks it makes him look “normal”.  He doesn’t have to wear a ski cap to cover a bald head or lack of eyebrows.  He likes that he can walk around without looks and whispers.  If people don’t know him they wouldn’t even know he’s in treatment and he likes that.  He just wants to fit in! 

John is moving around nicely all things considered!  His legs continue to be an issue.  As I mentioned he has nerve damage in his legs from the very nasty chemotherapy, VinCristine.  (VinCristine is super important for improving CURE rates in Leukemia … So, he grins and bears the pain in the quest for his forever cure) He wears leg braces (when I harass him) to help give him stability.  He also has Avascular Necrosis in his knees, caused by the high dose pulses of steroids, Dexamethazone.  No need to Google it, it means death of the bone which leads to destruction of the joint.  Those MRI results hit us pretty hard, devastatingly hard.  We met with an AVN specialist during our last visit to STJ.  He will be closely monitoring John’s knees and hip.  If there is further damage to the knees or progression to the hips Dr. Pui “may” consider lowering the steroid dose.  I say, “may”, because steroids are also very important in the quest for John’s cure.  I can have John’s joints replaced after treatment but I can’t replace John.  So, we proceed with the monthly pulses of high dose steroids!  What does this all mean for John’s mobility?  He can’t run, which sucks!  Not afraid to say it, it totally sucks!  It actually breaks my heart: I remember him running across the soccer field & running down the street to play with friends.  BUT, he can walk! And he walks around very well!  He isn’t using a wheelchair and he is able to climb the stairs.  In our world, that is a win!

John was able to go to school!  Yay!  He returned to CPS for a class.  Baby steps, he probably could have stayed longer but I was having some anxiety about … well, everything!  I stood outside the middle school with the Head of the Lower (thank you Mr. Lenz :)) and “tried” to enjoy the moment.  John LOVED it!  The kids LOVED it!  They were so happy to see him; smiling & clapping!  It was a relief to him, his friends were still waiting for him; he still had a place at school!  He felt a piece of his “old life” was finally in reach. 

John was able to go on vacation!  Oh how we needed a change of scenery!  We had asked Dr. Pui months ago if John could travel … His answer “sure, to and from Memphis”.  Funny, NOT! After some persuading, we got the thumbs up for travel.  We were invited to Orlando for the Tavistock Golf Tournament.  The hotel was in the Disneyworld Park so Bella and I got to go the parks (yay! finally time for just me and Bella!), while Rich & John attended golf.  We also got to relax by the pool, enjoy the sun on our faces and eat out!  It felt great! Thank you Knight for such a wonderful experience!  * The back-story:  The morning of our departure we stopped by the Charlotte Clinic for a quick check of John’s counts (car was packed and ready to roll).  To our disbelief John’s counts tanked!  His immune system was ZERO! Our hearts sank!  John was bawling, I was crying (and swearing).  Queue Chariots of Fire music: Martha May (John’s STJ nurse) to the recue … She called in IV antibiotic balls for us to give John in Florida (we hooked them up to his central line) and told us to go!  It gave us some protection since is immune system couldn’t fight off possible infections on its own.  We established John as a patient at a children’s hospital in Orlando and made an appointment for lab work.  We packed medication for every possible scenario. We were on high alert for fever and washed our hands every other minute even if we didn’t touch anything.  But all the added effort was worth it!  It was nice getting back to making “good memories”.  

John is struggling to maintain stable counts.  We are on week 30 of 120 of the Maintenance Phase, low dose treatments every Monday / Monthly trips to STJ for LPIT – chemotherapy to Central Nervous System.  This is the phase where I had hoped John’s counts would stabilize.  They will still be consistently low compared to normal but not rock bottom.  The last month has been a bit of a roller coaster (not the fun Disney kind of roller coaster) counts up, counts down, counts up again.  We don’t even want to guess anymore when we’re at the clinic.  We used to take bets on White Blood cell count, Hemoglobin, Platelets and ANC (# that represents immune system) but now we just peek at the lab sheet with our fingers covering our eyes.  Not sure he’ll ever get those stable counts we’d love but if rollercoaster = forever cure, we’ll deal with it! 

The past year has been so very hard and so very heartbreaking!  The calm after the storm is proving to be difficult too.  The quite moments during the day are often the hardest; images and feelings pour over me.  I often wake at night gasping for breath, heart pounding.  Seeing my child suffer isn’t something I’ll ever get over, ever!  The challenge for me is; how can I harness these feeling and more forward?  How do I, we heal? My hope is that through sharing John’s story, bringing awareness and giving back that slowly the healing process will begin. 

Rich & I are starting to get more involved with St. Jude & ALSAC (the fundraising branch of STJ).  We will be attending St. Jude’s Taste of New York this November, where I will have the honor of sharing John’s story!  John is also getting involved with ALSAC and is looking forward to doing what he can to share his story and spread awareness.  We are also working with the Charlotte based ALSAC, organizing fundraising efforts here in Charlotte! Bella and I enjoying some volunteer opportunities at The Ronald McDonald House of Charlotte too! 

We are participation in the St. Jude Warrior Dash in June!  It’s a fun, fundraising event where we’ll conquer obstacles, leap through fire and crawl through the mud all in the name of St. Jude warriors, like John!  If you’d like to help team JHUD fundraising efforts click here:      

www.stjudewarriors.org/kathyhagen

I can’t forget about Make-A-Wish!  John’s wish will hopefully be granted very soon!  His wish granter, Thom Filicia @ThomFilicia, is working on his room makeover!  Can’t wait! More details to follow.

We also expanded our family!  John picked out our new puppy, Tula!  She is beautiful Wheaton Terrier.  She brings lots of love into our home!

Most importantly after one year John is Cancer Free! (Remission date 5/18)  We pray that every day he is one day closer to his FOREVER CURE! 

Thank you for walking this journey with us.  Thank you for praying for John, for us!

Love, Kathy

15    Chemotherapy Treatments
3      Respiratory Treatments   
39    Clinic Visits
48    Lab Draws
16    Blood &/or Platelet Transfusions
10    Ultrasounds
12    Pain Team Appointments
97    Mg of Dilaudid
8      Physical Therapy Workouts   
11    Inpatient Days

“Never give up, for that is just the place and time that the tide will turn”
~ Harriet Beecher Stowe

And turn it did! John did not give up and right when we thought that he couldn’t take another minute of suffering he started to turn the corner.  His bone marrow started to recover and his body started to heal.    

John remains cancer free!  He is home and has officially started MAINTENANCE!  So, what is “maintenance”? It is the last 99 weeks of John’s treatment.  It is “less intense” weekly treatments.  His maintenance treatments are currently a work in progress.  It has to be enough chemotherapy to keep Leukemia cells from ever coming back but not too much that John’s counts don’t remain stable.  It’s going to take some fine-tuning and some serious patience but Dr. Pui is on the job!  The majority of treatments will be in Charlotte at Levine but once a month John will return to St. Jude for an LPIT, lumbar puncture with chemotherapy to the central nervous system.  Our hopes are that these less aggressive treatments will allow John’s quality of life to greatly improve. 

Physically, John is making great progress!  As I mentioned in a Tweet, John has nerve damage in both legs and will need to wear AFO braces on both legs.  We pray that the damage will not be permanent and that with the stability of the braces and daily physical therapy he’ll build back his strength and mobility.  His immune system is slowing building its way back up (but he’ll still be immune compromised for 2 more years).  After flu season passes John should be able to return to @CharlottePrep for a class or two :)!  He should be able to eat out, visit with a friend, ride his bike etc.  He doesn’t quite have the stamina for all those activities just yet but every day he is looking and feeling better and better!  

Emotionally, John is moving forward!  His emotional wounds are healing and he is seeing the possibilities that today and tomorrow have to offer!

A special thank you to Dr. Pui, Martha May, Justine Rodriguez and the many other amazing people at St. Jude who carried us through the last few months.  There are many reasons why we chose St. Jude, but the outstanding level of care, the dedication to curing John and compassion shown to our family while at St. Jude makes it an incredibly special place!

A huge thank you to all of you for your continued love & support!  It has taken an army of people to get us through the last few months!  We appreciate each of every one of you and your amazing acts of kindness!

Please continue to pray for John’s FOREVER CURE!

Love, Kathy

~ Martin Luther King, Jr.

We knew ReInduction II would be hard and we tried to prepare ourselves but nothing we could have done could have prepared us for this round of treatment.

ReInduction II is 3 weeks of intense treatments.  John has only been able to push through weeks #1 & #2.  So far he has had 14 treatments, 1 Intrathecal procedure (chemotherapy to the brain & central nervous system, 1 respiratory treatment, 7 transfusions and 5 ultrasounds.  Week #3, the HIGH DOSE treatment week, is on hold until his body recovers and gains some strength.     

He is struggling with the side effects of back-to-back treatments.  The nerve pain from VinCristine was crippling.  He was on HydroMorphine for 12 straight days!  We tapered him off the narcotics but he suffered from withdrawal, anxiety attacks, shaking and nausea.  Watching my 12 year old detox is certainly never something I thought I would ever experience and I hope he never has to endure the process again.  His liver and kidneys are under pressure to process the toxins and they are showing signs that are stressed.  The strain is causing his body to hold onto fluids, producing an anti-diuretic hormone (ISADH).  His steroids and PEG-L-asparaginase treatments only add insult to injury.  His body is painfully bloated.  John cries that his body and face are disfigured.  His body is beaten down and unrecognizable to John.  His bone marrow is very suppressed.  He has low white blood cell counts, low platelets and low hemoglobin!  Almost daily blood and/or platelet transfusions are supporting him until his bone marrow recovers. He is bald, only a few eyelashes hang-on to his swollen eyelids and light fuzz covers the area where his eyebrows used to be.  He spends most of the day sleeping and barely has the strength to walk.  His immune system is non-existent.  To top it off, he is currently inpatient at St. Jude with Typhlitis, again!  We can’t wait to push through week #3 and treatment recovery!  

The quest for John’s Forever Cure has its cost, suffering.  John is truly trying to find strength within him self but at times I can see the darkness consume him.  When I see John close his eyes in pain or fatigue I tell him,

“Only in the darkness can you see the stars” 

I tell him that the darkness that surrounds him has given us the ability to see the stars, life’s blessings.  I haven’t asked him to share with me his stars but I share my stars with him.

My son is alive, MRD NEGATIVE & CANCER FREE.  That is life’s greatest blessing and the brightest star in the darkest sky! 

We are blessed to be surrounded by family and friends who love and support us!  We are incredibly blessed to have the BEST of the BEST taking care of us at St. Jude, Dr. Pui and Martha May!      

Enjoy your family and friends this Thanksgiving Holiday!  I hope you will try to share your “life’s blessings” with each other.  

Happy Thanksgiving!  Thank you for loving John Hagen!

Please continue to pray for his FOREVER CURE!

Love,

Kathy           

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 … 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!

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

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 :))

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