Updates
9:14PM

Warrior

Warrior Dash:  Rich & I recently completed the Warrior Dash in honor of our warrior, John! It was a mud-crawling, fire-leaping, extreme running event.  It was also a great way to fundraise for St. Jude.  With the help of family and friends, Team JHUD raised over $11,000, earning us the title of top fundraiser at the event!  Thank you to all of you who helped us surpass our goal and most importantly help St. Jude achieve their mission, saving children & finding cures!

Warrior Definition:  a person that shows great courage

Warrior: John!  John continues to push himself through the grind of Leukemia treatment.  Fighting like a warrior for his FOREVER CURE!      

The Warrior’s Medical Status:  John celebrated his one-year remission, May 17th!  Amazing!  Currently, he is on week 42 of the 3rd phase of treatment (week 64 of treatment), he has 78 weeks to go!  He receives weekly treatments.  They are low dose treatments in comparison to the high dose, intense treatments he received last year but they still pack a punch!  We head to the Charlotte clinic on Mondays, he receives treatment then he rests and recovers for about 2 days.  He’s not overly nauseous, mostly icky (flu-like body aching icky).  After that passes he usually perks up.  But, there is the exception!  John returns to St. Jude monthly for his IT-MHA (lumbar puncture, treatment to his central nervous system), VinCristine treatment and begins a high dose 5-day pulse of steroids.  It is an ugly week!  Aside from the brain fog of the IT-MHA, the VinCristine treatment continues to cause him excruciating nerve pain and the steroids are brutal on his joints and his spirits. During “hell week” he takes about 120 pills to help manage the many side effects.  His future treatments:  In the fall, John’s lumbar punctures reduce to an “every other month” schedule, Yippie! In December steroids are reduced to half-dose (if not sooner due to AVN).  Next summer, we finally stop VinCristine! The following December, December 2014 John will complete his treatment! 

The Warrior’s Physical Update:  Next month when John returns to STJ, he will be getting a MRI to recheck the status of his AVN (Avascular Necrosis – bone death) in his knees.  Dr. Pui will review the results with John’s Orthopedic Surgeon at St. Jude and “they” (really, Dr. Pui :)) will determine if John is able to continue on the high dose pulses of steroids that are causing the damage to his joints.  I HATE steroids but I HATE leukemia more – My opinion, “I can have John’s knees replaced but I can’t replace John”! Let’s get his forever cure then rebuild those knees!  On a good note, the neuropathy, nerve damage, in his ankles continues to improve!  He works hard at his physical therapy and we are hopeful that after he stops getting the very nasty VinCristine treatments his neuropathy will be fully resolved.  He continues to play a bit of golf when he’s feeling good.  He really enjoys it and it’s a sport he can play with Rich as well as friends!  He has also gotten back on his bike.  It’s great for his circulation and it gives him a great work out :).  As far as his appearance, he has an amazing head of hair with beautiful soft curls!  I love it!  He’s still a bit pudgy from the steroids but he is a handsome12 year-old boy! 

The Warrior’s Emotional Update:  John is having more good days than bad!  On the good days his spirits are high and he dreams about his bright, beautiful future!  He talks about getting back to school, hanging out with friends and going on vacation! He smiles and he laughs.  It’s the best!  On the bad days he struggles to see past the moment but he always pushes himself too see through the darkness!        

The Warrior’s School Status:  He’s a rising 7th grader!  Yay! John completed 6th grade.  It was quite a push at the end for him to complete his schoolwork but he worked very hard and finished all his required homework.  You may recall that last year John had the honor of receiving the CPS 2012 Perseverance Award.  This year Charlotte Prep honored John by awarding 4 classmates The John Hagen Perseverance Award!  The recipients of the award demonstrated drive, dedication and of course UNSTOPPABLE  DETERMINATION during the school year!  How awesome was that of CPS!  It made John so proud, me too :).  John is spending time this summer brushing up on some writing skills, with his much loved writing tutor, hitting some required reading, logging in some hours on BuzzMath and attempting Rosetta Stone’s Spanish lessons.  Keeping very busy!

Behind the scenes with the Warrior:  I follow a blog of a Charlotte mom (whose beautiful daughter lost her battle with Neuroblastoma), she’s an amazing women, whom I have never met but her words are powerful and they often give me some much needed strength and inspiration.  A while back she wrote, “you see what I let you see”.  It’s so true!  Our life is still SO hard and heartbreaking, our life is not “back to normal”.  The small snippets that we “let” people see: John riding his bike down the street, lunch & a movie with a friend, a peek in at school, those are just “moments”.  There is so much more to childhood cancer and John’s journey.  What you don’t see:  are the tears that stream down his face on Sunday nights in anticipation of receiving treatment, the loneliness he feels missing out on all the end-of-school celebrations and summer fun, the heartache as he watches neighborhood kids run and play with no inhibitions and pure innocence and lastly the pain and side effects of treatment!  There is so much more to our story, to our life, than what meets the eye.  Childhood cancer is HELL.  

Sharing the Warrior’s Story:  “Letting” others in, is a process.  It’s something I am working on.  It’s not easy to share John’s story in person.  As I mentioned above I still edit what I share.  For me, I do that not just for our benefit but for the benefit of others.  Some people just don’t want to hear it.  I used to be offended and greatly saddened but I’ve come to realize that not everyone “gets it” and it’s not my job to share John’s story in order to make them “get it”.  It’s my mission to share John’s story with people who are truly interested.  I want to share his story with others so that it means something, so that it makes a difference!

St. Jude Warriors:  Rich & I are committed to spreading awareness and sharing the St. Jude mission.  We believe that STJ, through it research and its remarkable teams of specialists, will find cures and save children just like John.  No child should have to endure the torture of cancer treatment.  Recently, Rich had the honor of speaking at a St. Jude, Taste of New York, committee meeting.  He was able to share our experience at St. Jude through the eyes of not just a committee member but as a parent of a child in treatment at St. Jude!  So very proud of Rich!  Mark your calendars, Taste of New York, November 13th, 2013! 

Warrior Dad:  Happy Father’s Day Rich!  I need to acknowledge what an amazing Papa Rich is! He is an incredible man.  No matter how tired he is from a day’s work he finds the strength to be an amazing “caretaker”, husband & dad!  It’s not an easy life but he proudly wears all these hats! 

Unwavering Support for our Warrior & our family: I am still amazed at the love and support of our family and friends.  We are so grateful to be surrounded by such amazing people!  Thank you for walking this journey with us.    

Please continue to pray for John’s Forever Cure!  God hears our prayers!

 

Love,

Kathy

 

8:39PM

One Year...

 

It’s been one year since John’s diagnosis, March 25th and one year since John arrived at St. Jude and began treatment, March 27th.  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

9:52AM

An Email to Dr. Pui

Dear Dr. Pui,

One year ago, March 27th 2012, we arrived at St. Jude.  A day we will never forget.  You were waiting for us in the lobby; Rich carrying John through the front doors wrapped in a blanket.  John was so very sick and we were so very scared. You whisked us off to the A Clinic, room 4, and there began our journey.

While it's been a long, hard year, we have much to be grateful for.  Most importantly, John is cancer free!  But, we are also especially grateful for your dedication to John's FOREVER CURE, your outstanding level of care, your accessibility
and the compassion you've shown our family!  

You are an incredibly special doctor & person!

Thank you for dedicating your life to saving children, like John!

We love you Dr. Pui!

Kathy & Rich Hagen

8:26PM

… the tide will turn

 ReInduction II Summary 

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

As you can see ReInduction II was a long, hard 77 days for John.  His treatments were traumatic and his days were filled with anguish.  The images and sounds of the last three months are haunting and I truly can’t bear to write the details.  There were days where we just couldn’t imagine how John could get through another day. 

“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

 

 

 

 

5:37PM

“Only in the darkness can you see the stars”

“Only in the darkness can you see the stars”

~ 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