It’s time …

This blog has meant different things to me at various times of John’s journey; a communication tool, a way to connect John with his supporters, a fundraising & awareness platform and most importantly a place where I could express my feelings about the horror of childhood cancer. 

After 4 ½ years I’ve made the decision to take it down.  

While I am going to miss the opportunity to connect with you all, I feel that it’s time to give John the reigns and let him decide how/what is put out there about his life.

So, with mixed emotions, I say goodbye to the blog that has documented the darkest and brightest days of John’s cancer journey.

Lots of love XO,

Kathy

Brief update on John:

Over the summer John started back at school (North Carolina has a virtual public school where John is taking online classes).  His goal is to return to the classroom in the next year or so. 

 

Last month, John returned to St. Jude for his trach revision surgery.  He wanted to say goodbye to the physical reminder of that trauma so STJ’s ENT, Dr. Thompson, did a wonderful job making his scar virtually disappear. 

 

We also had a wonderful clinic visit with Dr. Pui & Martha who were especially thrilled to see John walking without his cane! John continues to make great progress with his Physical Therapy - requiring only his leg braces to assist his walking. 

 

Since this visit was a quick surgical visit, having nothing to do with “leukemia”, John really enjoyed visiting his care-providers and showing off his progress!

 

We return to STJ later this fall for his 2-year BMT follow-up visit.  That is a HUGE milestone, especially for John!  It’s going to be a jam-packed, intense 5-day visit.  He literally has 29 appointments; every specialist that has ever laid hands on John during our 4 ½ years at STJ will examine him – that’s a lot of care-providers! (and let’s not forget all of our social visits J)

 

John will be posting updates on his Twitter account and you can follow him @GKjohnjhagen

 

 

 

 

St. Peregrine Tumor

Have you read it? Have you read the New York Times Magazine article “When do you give up on treating a child with cancer?”  When I read last month, I wept.  There are so many parallels to John’s story:  having the courage to say this child has suffered enough and stop treatment, having an immune response that cures leukemia without treatment and bringing a child home for end-of-life care when in fact it’s not end-of-life at all. 

 

Must Read:  www.nytimes.com/2016/05/15/magazine/childhood-cancer-treatment.html?_r=0

 

As you may recall in January 2015, John relapsed just 59 days after his transplant (not the “psuedo MRD” relapse from June 2015).  He wasn’t able to engraft because his ginormous spleen was sequestering all the infused donor cells.  In preparation for another possible transplant John received a small dose of chemotherapy, which had virtually no impact on his disease burden.  Then in early-February, before preceding any further, we collectively decided to remove his spleen.  It caused an unexpected, rapid immune reconstitution, with immediate donor cell engraftment and soon-there-after, the heartbreaking complication of Guillian Barre.  John was put on life support and lay completely paralyzed – treatment of any kind was completely taken off the table.  It was nonnegotiable.

 

Then as the weeks passed, in the ICU, a miracle happened … John’s MRD (minimal residual disease) began to decrease, on it own, with no treatment.  On March 5th (Isabella’s 16th Birthday) we received the news that his MRD was NEGATIVE.  John miraculously achieved total Remission – off therapy. 

 

Was it really a true miracle?  Since 1952 The Vatican has sanctioned these spontaneous disappearances of cancer as St. Peregrine Tumors, cancer miracles.  Like John and the young child in the New York Times article, St. Peregrine (the patron saint of cancer patients) miraculously recovered from his cancer.  However, it was recently established that St. Peregrine likely had an infection before his own miraculous disappearance of his cancer, causing dum dum dummm … an immune response.

 

I whole-heartedly believe John experienced a miracle as well.  John’s miracle was the perfect storms of events that led to the release of his immune system’s assassins, TCells.  Was it the splenectomy, the Guillian Barre, a combination of both or an unknown virus or infection that unleashed his immune system, killing his leukemia?   We may never know.

 

Science may consider this non-miraculous but a series of unintended events that lead to the spontaneous disappearance of John’s leukemia sure feels like a miracle to me.

 

You may have seen in the news that The Parker Foundation is working on harnessing this response.  They are breaking the financial and organizational barriers needed for immunotherapy success.  They recently formed The Immunotherapy Dream Team (from the premier cancer centers in the US) - uniting laboratory and clinical efforts towards immunological treatment. 

 

It’s time to get Childhood Cancer Centers involved in this pursuit, putting pediatric oncologists on that team!  Immunotherapy is real and it’s powerful.  It’s a cancer miracle that everyone can believe in. 

 

Update on John

 

I was drawn to write about John’s miracle because it was referenced frequently during John’s most recent trip to St. Jude, last month.  So many of our loved care-providers couldn’t help use the word miracle to describe John.

 

We were in Memphis just a few days but those days were packed with appointments.  He visited Dr. Pui, BMT and a slew of other sub- specialties following John’s recovery.

 

Leukemia Visit:  I literally could barely wait for Dr. Pui to see John WALKING (with a walker).  Rich & I wanted him to be proud of John’s progress … and he was!  I even got a hug :).  Martha was on a much-deserved vacation so we’ll have to get her in-person hug during our next visit.  John’s labs looked appropriate for where he is in his recovery.  His MRD was sent to off for Deep Sequencing – results are NEGATIVE. 

 

BMT Visit:  Our BMT team (Kim and Dr. Mamcarz) were equally excited about John’s progress and greeted us with lots of hugs too.  John’s chimerism was 99.99% in his peripheral blood.  We were told that the 0.01%, noted as non-donor, may be artifact, not necessarily John (which we don’t want).  In addition, after much consideration and a consult from an immunologist at LeBonheur and his Nuerologist at STJ, it was decided that John would begin his immunizations (his transplant wiped out his immunizations) – They carefully weighed the risks/rewards regarding immunizations after GBS.  It’s all very terrifying.

 

Neurology Visit:  Dr. Khan was particularly inspired by John’s recovery.  He feels John has made a complete neurological recovery from the ankles up.  We are still waiting for his feet to show more signs of recovery.  Until then, he’ll continue to wear AFO leg braces to give him support while walking.

 

Endocrinology Appointments:  Good news – John is finally growing.  He passed his 3-hour growth hormone evaluation (it was a rough test).  His thyroid and adrenal glands have also recovered.  Given the trauma associated with his transplant we’ll keep monitoring his endocrine system for a while.   

 

Hematology Visit/Scans:  John will need to continue on Chelation therapy.  MRI showed improvement in the heart and liver but he still has a tremendous amount of iron overload. 

 

Pulmonary Visit:  John’s pulmonary function is better but not even close to normal.  They are hopeful that increased mobility will continue to improve his numbers.

 

ENT Visit:  John is interested in trach revision surgery.  We met with Dr. Thompson (who put in John’s trach) and he thinks John is a great candidate for revision surgery.  It’s not without risks, requiring an overnight stay in the ICU (can you say – PTSD) and a 7-10 day stay in Memphis.  ENT will also remove any granulomas and perform a bronchoscopy, a procedure used to view John's lungs, airway, trachea, and his many branches of bronchi.

 

Pain Team Visit:  We love the pain team too.  We’ve been working on weaning John off his scheduled pain meds.  We are so close to having John on an “as needed” pain med schedule.  This is huge accomplishment given the mega amount of narcotics John was on for Transplant & GBS pain.

 

Social Visits:  We had lots of other impromptu visits with beloved care providers & Hagen supporters.  Everyone is like family to us and it was exciting catching up and sharing John’s progress. (John especially loved seeing Jake & Larry from Doggy Daze).

 

The plan:  We are scheduled to head back to The Jude late November for John’s 2 year BMT evaluation and Trach revision surgery.  In the meantime we’ll visit our oncologist here in town at Levine Children’s Hospital.

 

PT:  John continues to make progress.  As I mentioned he’s walking with a walker or cane.  Yay, no more wheel chair!  He’s even able to ride his bike short distances.  He also enjoys time in the pool. 

 

Overall John is in a much better place.  However, he still has more icky days than good days (we’re working on reversing that).  He’s also very thin and frail (we’re also something working on that).  He’s anxious – and has every right to be.  So, I try to acknowledge his feelings and help him push beyond the fear.  John’s recovery is going to be a long journey so we take it day by day.

 

Update on the rest of us

 

Bella is working on her college applications this summer … crazy.  I hope and pray she gets into a college that will help her realize her dreams of being a nurse at St. Jude.  She continues to be a huge help & still embraces her role as a caregiver.  She’s also the optimist of the family, hopeful as ever.  

 

Rich usually lives in the moment but this time of year is hard for even him to not look back - so many memories of heartache and disappointment.  It was this week last year that we were told John relapsed (later to be determined as “Pseudo MRD”) - Rich was packing up the house so we could head back to St. Jude, John left Rich a message of his phone wishing him a Happy Father’s Day, telling him how much he loved him – Rich kept the message because he thought John was at the end of his cancer journey and he wanted to be able to always hear his sweet voice.  That message is still on Rich’s phone.  This is the reality of life as a cancer dad.      

 

I would describe myself as functional, highly functional on some days and highly dysfunctional on other days.  I’m still angry – angry about John’s leukemia, relapse, transplant, Guillian Barre, chronic health issues and “Psuedo MRD”!  I’m terrified of the future because I’m so haunted by the past - that makes it difficult to move forward (whatever that means).  However, I do make a conscious effort to not be consumed by these feelings.  I can and do find happiness in every day.  I even allow myself on occasion to dream again of life beyond childhood cance

 

St. Jude Evening of Hope

 

Our annual St. Jude Evening of Hope event was a huge success, raising over $600,000.  Thank you for supporting our fundraising efforts.  Together we CAN make a difference!

 

Save the date – St. Jude Evening of Hope, March 11th, 2017, Ritz Carlton Urban Garden / Charlotte. 

 

Kathy

 

Reevaluating the Post-Transplant Relapse

While we were at St. Jude in February we sent off another sample of John’s peripheral blood for deep sequencing AND forwarded a specimen from June 2015 (post-transplant relapse).  They were both NEGATIVE for residual leukemia – meaning, John is in REMISSION and he officially did NOT relapse this past summer. 

STJ pathology has begun the process of amending all MRD results from June 2015 through the present to represent MRD NEGATIVE.

I don’t want to speak for John; this information is a lot for a young man to process.  He has a lot of healing to do – emotionally and physically.

I am overwhelmed with emotions.  I’m feeling:

HOPEFUL – that I can allow myself to dream of John’s future again. 

THANKFUL – that John is treated at a hospital that isn’t afraid to ask other institutions, doctors & labs for their opinions and assistance in diagnosing and treating John.  I appreciate STJ’s transparency during this process.

GRATEFUL – that I stuck to my guns and didn’t allow any further treatment. 

SAD – that I planned John’s funeral and that I broke my friend’s hearts by asking them to help me with those details.

ANGRY – that I told John, my family, our friends and our supporters that John’s cancer had returned when in fact it did not.

DEVESTATED – that I told my son he was dying.  No, telling him that he is living (for now) doesn’t help fade that memory.  I can’t take that conversation back.

AFRAID – that it’s only a matter of time before his leukemia returns or he suffers from further complications from his transplant.

OVERWHELMED – with the task of moving forward given all that has happened over last four years.

I pray over time I can reign in some of these feelings and just focus on the gifts that every day brings. 

Thank you for your continued prayers. 

Kathy

Please support childhood cancer by supporting our fundraiser -  www.stjude.org/eveningofhope

ClonoSequence Results

As I mentioned in my last couple of posts, St. Jude sent off a bone marrow sample to a lab in San Francisco who specializes in ultra-sensitive detection of minimal residual disease (MRD) in patients with lymphoid cancers. 

The results:  Deep sequencing shows NO evidence of residual leukemia.  So, an independent review of the results was requested and conducted by a well respected pathologist in Singapore.  While John’s MRD was difficult to interpret she would favor “MRD NEGATIVE”.

YES, this result is discrepant from the MRD results at St. Jude and what we believed to be low-level MRD these past seven months is no longer considered residual leukemia.

You are probably asking yourself the same question I did – did St. Jude make a mistake all these months?  No.  We were given several reasons for the discrepancies by the third party pathologist in Singapore – most are above my head.  I can’t “yet” comprehend them (but I WILL).  However the most logical explanation is easiest to explain to you all:  the T-Cells that are staining a dim violet (MRD) could most likely be a population of post-transplant T-Cells regenerating.  They express surface markers that would indicate that they are normal activated T-Cells and the staining in these cells is probably false – a pseudo MRD.

When we return to St. Jude in February all tests will be re-run and we’ll meet with Dr. Pui and team to go over these results until we all understand them.  We’ll also come up with a plan on how to monitor John going forward.

As you can imagine the updated results bring an array of emotions – most of which I’m not ready to share - sorry.  We are still processing the news and everyday seems to bring a new reaction.  We’ve been on this rollercoaster a long time and we know better than to declare victory over John’s leukemia.  To protect our hearts we are just moving forward with the possibility that John is cancer free but with the reality that John’s leukemia is extremely complex and high-risk.  Every day is a gift and everything can change tomorrow. 

 

Love, Kathy

 

*John started aquatic PT this week – he WALKED (under water) for the first time since last February!  It was awesome.

HOME …

After 15 months John has returned HOME.  It was an emotional and incredible homecoming.

 

Before I get into the details of our arrival back into Charlotte, I want to touch on our departure.  We received lots & lots of extra love from our ST Judefamily during our last few days at the hospital – everything from hugs, Starbucks drinks, homemade ribs and even a delicious sendoff basket full of snacks for the long drive.  Our hearts and bellies felt the love! Thank you. XO

 

The most emotional goodbye was with Dr. Pui.  He was in John’s room before the sun rose.  He not only helped us get John ready but he walked us to the car, gave us all hugs J and watched us as we drove away.  Yes, of course, I cried.

 

The drive was long but the excitement of getting HOME kept us alert.  We made two stops, Nashville and Knoxville, but managed to make great time getting into CLT - in about 10 hours. 

 

As we turned the corner onto our street John could see that our friends had decked the house with lights and decorated the front lawn with an amazing “Welcome Home John” sign!  Our counters were also covered with gift baskets, our pantry was bursting with homemade treats and our refrigerator packed with staples - all brought in by friends and supporters.  I couldn’t be more thankful!

 

Seeing his home covered and filled with love brought John to tears.  Happy Tears.  I don’t think he or any of us believed he’d get to come home again.

 

Tula was at the door waiting and smothered John with lots and lots of kisses as he came through the door.  It was like one of those commercials where the dog sees its owner for the first time in forever and practically passes out – that was Tula.  The two of them are inseparable, she follows him around during the day and snuggles him at night.  She’s a therapy dog and doesn’t even know it. 

 

What did John want to do first? SWIM!  We built John a pool as his “end of treatment” gift last September (2014)!  As we were digging the hole – he had his first relapse.  He watched the pool get built through pictures but this was the first time he saw it in person.  After a good night’s sleep and few hours needed to heat up the pool, Rich lifted him in - it was everything we had hoped it would be and more!  It’s perfect; it allows John total freedom to move his body while controlling the amount of weight bearing oh his joints.  He was even able to do few strokes of free style and used the wall to stand for the first time since last February!  Thank goodness for the warm December weather here in Charlotte.

 

Christmas, I can’t even believe we pulled it off.  Thanks to Amazon Prime for delivering our presents on time, my sweet neighbor for wrapping those gifts, Bella and Rich for putting up the tree and Whole Foods for last minute dinner pickup!  It was a great day but I was more than happy to throw the tree at the end of the driveway on the 26th!

 

With 2016 around the corner I wish you all a very Happy New Year!  I pray this year brings peace and comfort to my family and the many other families in the childhood cancer community.  I also hope it brings you all happiness and good health. 

 

Please consider making your New Year’s resolution a commitment to help fight childhood cancer.  We can make a difference – together.

 

Update on John:

 

PT:  His custom wheelchair arrived just in time for our departure and I it’s working out great (although it still breaks my heart seeing him unable to walk).  We’ve mastered transferring in and out of the wheelchair/bed/car.  John can even transfer himself from the wheelchair to the sofa!  He still can’t put ANY pressure on his feet so it’s tricky but we have a good system that gets the job done.  He has a fracture in his left talus (ankle) most likely due to acute demineralization in his bones.  He also has severe contractures in his Achilles as well his plantar fascia.  He has braces that he’s “supposed” to wear, to help, but he doesn’t love them and finds every reason not to put them on … ugh.  Hopefully, now that we are getting settled at home, we’ll get into a physical therapy routine- we are researching aquatic therapy given his inability to put weight on his feet.  We are still hopeful John will walk again!

 

Chimerism/Cellularity.  John’s bone marrow chimerism finally came back.  I didn’t like the results so I asked them to re-run it (only at The Jude).  Sadly, the results are the same, 98.48 % donor.  The mixed chimerism wasn’t a surprise given his MRD status but, I was still hoping the results in his marrow would be in the 99(ish)% range like his peripheral blood chimerism.  Since it’s the first time we’ve checked his marrow chimerism post-transplant we don’t have any data to compare it to.  Regardless it’s not a great number.  I need my graft to keep fighting!  The bone marrow cellularity had mixed results - 5% to 50%.  It’s patchy!  Some areas of his marrow are functioning better than others.  It could get better but it could get worse.  Time will tell.  No MRD was taken this past week – the next scheduled MRD is in February.    

 

ClonoSEQ – As I mentioned a few ago, STJ has sent off a blood sample to a specialty lab in San Francisco, CA to perform an ultra-sensitive MRD test – the clonoSEQ MRD Test can detect disease at levels as low as 1 cancer cell per 1 million total white blood cells.  They will look for John’s unique DNA markers to help determine & collaborate what level of MRD (minimal residual disease) is present.  They will also analyze how/if his markers have changed over time – compared to a prior sample.  It’s unfortunately taking a long time to get those results – they should be back by next week. 

 

Chelation Therapy:  John is continuing chelation at home but it’s through a subcutaneous pump vs his port.  The plan is 5 days a week, giving him a bit of a break the 2 other days.    

 

Clinic Visits:  John will continue to get labs on a regular basis while we’re at home.  We’ll be under the care of Levine Children’s Hospital.  Yes, there is a STJ affiliate in Charlotte but our oncologist at Levine has cared for John (and our family) for years. 

 

STJ:  The plan is to go back to The Jude on February 10th (unless an issue arises that we need to return earlier).

 

Hospice.  John did NOT return to Charlotte on Hospice.  While he probably qualifies for their care, we are NOT there – physically or emotionally.  For now we are managing John’s at-home care on our own. 

 

XO XO,

Kathy

 

Wish list Wednesday:

 

A VERY big thank-you to those of you who have mailed me Starbucks gift-cards for the silent auction!  I’m very grateful!  The next time you’re at Starbucks please consider picking up a $25 gift card for the St. Jude Evening of Hope silent auction.  Coffee & charity is a match made in Heaven. 

 

Also a huge thank-you to those of you who have helped coordinates other exciting items for the auction!  I’m not going to share those with you – you’ll need to wait and see!

 

This week’s ask:  The Target House was our home away from home during our time at St. Jude – providing us with a lovely, furnished two-bedroom apartment at no cost.  In thanks to Target I’d like to also collect $25 Target gift-cards for the silent auction.

 

If you’re feeling super generous, feel free to also make those YEAR-END donations to STJEOH at www.stjude.org/eveningofhope 

 

As I mentioned last week if you aren’t able to contribute monetarily please consider donating life-saving blood/platelets or become a potential bone marrow donor at www.bethematch.org.  I just mailed my DNA kit to Be The Match yesterday!      

 

Auction form: www.stjude.org/content/dam/en_US/shared/www/fundraising-programs/dinners-and-galas/files/evening-of-hope-auction-reservation-form.pdf

 

Or Contact: Megan Hannon

ALSAC/St. Jude Children’s Research Hospital

6000 Fairview Road, Suite 305, Charlotte, NC 28210

T: 704.554.7710E: megan.hannon@stjude.org

 

 

 

Comfortable within these walls …

The plan is to bring John home.  He hasn’t been in his house in nearly 15 months.  Can you even imagine?  You’d think I’d be nothing but thrilled, and I mostly am, but I’m also terrified.  I’m comfortable within these walls.

 

We have a round the clock team vigilantly watching John.  Dr. Pui, of course, visits every day that he is not traveling and a slew of other specialists oversee just about every system: skeletal, nervous, cardiovascular, endocrine, respiratory, urinary, digestive, and the coveted new post-transplant immune system. 

 

Hell, I usually get some kind of curbside consult every morning in the Starbucks line (in my pajamas) from at least one of John’s care-providers.  That’s accessible care at it’s best!

 

Aside from the comforts of care, we are part of a team here - parents, siblings and patients all fighting childhood cancer together. 

John doesn’t stand out amongst this sea of children with bald heads, feeding tubes, traches, oxygen masks, chemotherapy poles, puke bags, scars etc.  He’s just one of the hundreds of cancer fighting kids who roam the halls within this hospital’s safe walls.

 

I’m at ease conversing fellow parents – they speak my language, childhood cancer.  They are my friends and our fight for our children’s lives permanently ties us together. 

 

I also don’t know what to talk about if I’m not talking about cancer – it’s all I know.  I have to remind myself when I’m outside of these walls that not everyone wants to hear me vomit up John’s experience, spit out childhood cancer facts or ask for donations.  I’m also not the person I was before we left Charlotte last year – I’m broken, bitter, lonely and exhausted.  When I feel those qualities in myself being exposed all I want to do is retreat.  So, when I leave the safety of room #9 on the Transplant floor, I’ll need to find a new source of comfort, which will allow me to exist outside these walls.

 

Rich is probably the most experienced existing outside the hospital.  He can talk/do something unrelated to cancer – work.  I know it’s not easy for him but he tackles his responsibilities outside these walls then shifts his efforts right back on being a caregiver.  He’s careful not to wear his heart on his sleeve, keeping his experiences closed off to most around him.  We are different that way – but that is what he needs to do to survive.   

 

It’s also going to be an adjustment for Isabella.  Her friends have moved on and I imagine reconnecting with them would be difficult for her - she has seen, heard & experienced things that are drastically different than her peers.  Per her request, her days will continue to revolve around school and being a part of John’s team of caregivers.  She’s sacrificed so much yet continues to walk this journey with John, never looking back.    

 

It’s time to leave our safe haven, the walls of St. Jude, and find comfort within the walls of our home and local hospital.

 

Kathy

 

John Update:

 

MRD results from last week are in: peripheral blood 0.029% & bone marrow 0.035% (virtually the same).  Since the persistent MRD continues to smolder, Dr. Pui also sent a request for deep sequencing of John’s samples.  Deep sequencing will observe John’s specific leukemic clones (identified at diagnoses and relapse) and monitor the clonal disease progression – detecting 1 leukemic cell among a million lymphocytes.  It’s a highly sensitive method.  Hopefully the results will be back by the end of the week for review.  Results are also still pending for his peripheral blood and bone marrow Chimerism as well as the bone biopsy cellularity.  

 

Chelation therapy continues round the clock.  It’s still causing tremendous joint pain but pain meds and anti-inflammatories are on board!  We are working on a plan to do chelation therapy at home – with the tremendous iron overload in his heart/liver we need to keep moving forward with the process but still allow John to have some freedom from an IV.  Hematology is working on a plan that will make them and John happy. 

 

Thursday he will have his 3rd and final Pamidronate treatment.  The treatment works by slowing the release of calcium from his bones, reducing the risk of breaking/fracturing his fragile bones (from years of steroids and immobility from GBS).  It also helps to reduce his bone pain from the fractures in his back.  It’s makes him feel like he has the flu (body aches etc) for about 2-4 days so, he’s not looking forward the treatment. 

 

PT this week is focusing on transferring from bed to wheelchair and vice versa.  With plans to go home underway we are continuing efforts to emphasize practical PT applications for life away from The Jude. 

 

Wish list Wednesday:

 

A VERY special thanks to those who have generously donated to this year’s St. Jude Evening of HOPE.  Your generosity brings not only a smile to my face, but also to John’s! 

 

This week’s ask - In thanks to all the curbside consults at STJ’s Starbucks I’d love to collect as many $25 Starbucks gift-cards as possible for the silent auction.  I’ll package them together and make a lucky coffee addict very happy!  Donations to STJEOH are also still very much appreciated! 

 

If you aren’t able to contribute monetarily please consider donating life-saving blood/platelets or putting a Be The Match DNA Kit in your or your loved one’s stocking this year (www.bethematch.org).  

 

St. Jude Evening of Hope Auction Form

Or Contact: Megan Hannon

ALSAC/St. Jude Children’s Research Hospital

6000 Fairview Road, Suite 305, Charlotte, NC 28210

T: 704.554.7710E: megan.hannon@stjude.org

 

 

 

 

 

 

 

John....

Finding it difficult to articulate my feelings this week so I just want to share an update on John.

 

He finished his fourth IV chelation therapy.  So far the only complaint is severe joint pain (thank goodness for pain team).  We were planning on three treatments a week but we may need to bump it up to five.  There is an oral option that we had planned to start during his IV chelation off days but it can cause gastric bleeding – with John’s varices, a bleed could cause fatal hemorrhaging.  So, we are taking a step back and trying to weigh the risk vs. reward on supplementing with this particular medication.     

 

This week’s PT is off to a good start.  He rocked the tilt table on Monday and sat bedside Tuesday and kicked a ball.  His goal is to stand, assisted, by Friday!    

 

John and I also sat with the physical therapist today and looked through wheelchair options.  While I do believe he will walk again, we need to address the reality of his current abilities.  So, I sat with John, embraced him for who he is today and helped him pick out a wheelchair with a cool orange frame.  

 

This Friday is going to be a busy day.  He is having a bone biopsy and a bone marrow aspirate.  The procedures are part of his one-year post-transplant follow-up.  They will be testing: MRD, chimerism, cellularity and iron level.  I pray his marrow shows a decrease in his leukemia burden and the possibility of a miracle.

 

Our goal is still to try to be home by Christmas.  It’s a lofty goal but I think with John’s determination it’s a good possibility.

 

Wish List Wednesday:

 

My only wish this Wednesday is for your continued support for St. Jude Evening of Hope & prayers that John will be standing on stage to greet you when you arrive.

 

www.stjude.org/eveningofhope

 

Thank you,

 

Kathy

 

I am thankful for him …

I had a hard time putting these feelings into words.  Being thankful for him really doesn’t say enough. 

 

He has dedicated almost 4 years to saving John.  He has lost sleep over John.  He has probably even cried over John.  How can I possibly, appropriately thank him for devoting his entire career to curing childhood Leukemia in children like my son? 

 

He has not only treated and tended to John but he has cared for our family.  There have been moments along this journey where he has carried us, giving us hope and a reason to press forward.  There have also been moments where he has sat with us speechless and devastated, acknowledging our feelings of defeat but never letting go of the chance for a miracle.

 

He is the reason we came to St. Jude and he is the reason we stay at St. Jude.

 

Dr. Pui is more than John’s physician, he is family and I am eternally thankful for him.

 

Update on John:

 

John’s MRD continues to be stable – this past Monday it was 0.030%, down from 0.065% two weeks ago.  I wish I could tell you what it all means but I can’t and neither can the mighty St. Jude.  I occasionally allow myself to dream of the day it goes away but the reality is – it’s unlikely.  However, I will continue to pray and hope for his much-deserved miracle.

 

John had an MRI of his liver/heart this week to gauge the extent of the damage to these organs from iron accumulation/overload (from his numerous blood transfusions).  Unfortunately, there are signs of damage to both organs so, he will begin Chelation therapy ASAP – meaning tomorrow.  Given the extent of iron overload we may need to do as many as 1-3 treatments a week for up to 3 months.  (Chelation Therapy is a chemical process in which a solution is injected into the bloodstream,  where it binds to the iron and is removed through the kidneys).  We pray the damage to his organs is not extensive but we won’t know until the chelation process is complete.  

 

PT continues to be a slow process.  However, he’s enjoying the ability to sleep on his side and get up on his hands and knees and stretch his back.  These new positions have taken tremendous effort and I’m incredibly proud of his determination. 

 

Wish List Wednesday:

 

So, since my last post (last Wednesday), 489 unique users read my update.  Some of you even came back for seconds yet, less than 1% of you made a donation.  Hmmm. I obviously didn’t convince you that childhood cancer is worth your hard earned money.

 

So, this makes me feel a few different ways.  Sadly, I feel like the accident on the side of the road that you can’t help but look at but your not won’t stop, pull over and help.  I also feel a bit self-conscious about sharing the details of John’s suffering and our family’s heartache.

 

I promised myself a long time ago that I would only share the details of John’s story if it served a greater purpose – awareness and fundraising.  I want to believe in some way I am changing the way you look and feel about childhood cancer – that you are much more aware that childhood cancer is not rare – that childhood cancer doesn’t happen to “other people’s children”.  But I NEED you to take action on those feelings.  I NEED you to help me fund better, less toxic treatment options for children.  I NEED you to help me fund Cures!

 

Ten+ children have died on the transplant floor since we’ve been back here.  Those are real lives lost, children’s lives!  Those families will be eating Thanksgiving dinner without their children this Thursday.   So, while you are enjoying your Turkey dinner surrounded by your family, imagine the seat of one of your children being empty!    

 

Please donate to www.stjude.org/eveningofhope .  If all 489 of you that visited last week donated $25 it would equal $12,225.  How AWESOME would that be!

 

Next week I’ll start my Auction Item Wish-list.  I have some fun and exciting asks! 

 

Very thankful for your support.    

 

Gobble ‘til you wobble,

 

Kathy

 

 

 

 

What can we do to help?

We are humbled that you all continue to ask.  The only thing we need help with right now is – finding a cure for cancer!  That’s a big ask, I know, but you can be a part of finding cures and saving children – for kids like sweet John.  This can only be done through research and research takes funding, a lot of funding.  As I’ve mentioned in the past, less than 5% of the federal government’s total funding for cancer research is dedicated to childhood cancers each year.  Pathetic!  So, a great deal of the financial support required for new trials and protocols comes from fundraising through events like our annual St. Jude Evening of Hope.

This is how you can help!  Every Wednesday I’m going to write a blog post/update (reflecting on my hopes, dreams and regrets) – it will include an “ask”, something specific to help make this year’s St. Jude event the most successful yet.  My WISHLIST WEDNESDAY posts will hopefully inspire you to be an active participant in helping to fund better/less toxic treatment options and cures for childhood cancer.

I don’t want this series of posts to be the something you read every Wednesday then go on to yoga and carpool (harsh I know), I want these posts to provoke action, action needed to literally help save a child’s life!  Step into my shoes, feel my heartache, cry for my child then help me end childhood cancer. 

This week my WEDNESDAY WISH is for you to please go to the St. Jude Evening of Hope website www.stjude.org/eveningofhope, peruse the evening’s details (Food Networks Chefs!!!!, Live and Silent Auctions, Music and lots of fun, fun and fun) and purchase tickets to our awesome event and/or make a donation of any amount (located under – be a sponsor)!   

Let’s start the season of gratitude and giving off right by providing hope to families like mine!  Sometimes the HOPE of better treatment options and a cure is all we have but when we have it, we have everything!  This belief is a powerful one and I witness it everyday here at St. Jude.

 

Update on John:

 

John’s MRD is remarkably stable considering he relapsed 22 weeks ago (and is not on therapy).  Last Monday’s result was 0.065%.  This is almost unheard of in the Acute Leukemia world, especially with such an aggressive subset as T-Cell ALL.  There are two theories with regards to John’s persistent, low level MRD 1) His MRD is comprised of cells that are only driver cells (pre-leukemia), requiring a second insult to the cell needed to proliferate – the graft (his new immune system) is holding off the second insult.  2) His cells are in fact proliferating and my donor cells are continuing to see them as “other” and are fighting them with some serious mama bear fury.  Unfortunately, there is no way to know.  So, we are holding firm and not treating his Leukemia with further toxic chemotherapy, which would result in considerable suffering.  As for cellular therapy, we are still looking for options that have little to no risk of reigniting his Guillian Barre Syndrome but have yet to find a treatment where the benefit outweighs the risk.  Dr. Pui is literally searching around the world for options.  We have consultant doctors in Singapore, Germany, England, France, and across the United States. We, especially John, continue to make quality of life the number one priority!

We are in the process of conducting John’s 1-year post-transplant workup.  I can hardly believe on November 21st it will be one year.  This has been the worst year of our lives.   Going through the series of tests & scans, looking/hearing about all the damage to John’s organs and systems brings me to my knees.  There aren’t enough tears to shed for my heartache.  His body has been beaten and unfairly broken by years of treatment, his transplant & GBS.   It’s not okay that these are our only options to save our children – it’s brutal and barbaric.   

His GBS recovery is slow.  It’s a long process and with immobility comes many complications: bone loss including 5 spinal fractures, contractures - shortening and hardening of his muscles & tendons and PAIN.  GBS is a horrible disease and it is so cruel that John has to endure this on top everything else. 

Physical Therapy is one of John’s least favorite things to do.  It’s painful, even with a 24/7 pain-pump.  He’s made so many advances since we’ve been back at The Jude but we still have a ways to go.  He can sit up independently but is still unable to stand/walk.  We continue to believe that John WILL walk again – he WILL.

Please continue to pray for our little family as we hold on to the HOPE that one day there will be a day where no child will suffer from cancer.

Love, Kathy

 

Here I am …

I told myself that I would never write on John’s blog again.  During this phase of John’s journey my emotions are too raw and I feel too exposed.  Yet, here I am.  I don’t have anything profound to say because there truly are no words to express what is happening to us and how we are feeling – we are broken in a way that is indescribable. 

You all are so supportive so, I’d like to share with you a general update on John.  His MRD (minimal residual disease) has risen from 0.022% 10 weeks ago to 0.134% as of last Monday.  It’s moving but it is still considered low level.  In fact, any hospital other than St. Jude would not even consider this a relapse (all other hospitals consider 3% a relapse).  We aren’t naïve, we know what rising, persistent MRD means.  Why isn’t it blasting off?  The Leukemia is being held at bay by my donor cells – he remains over 99% donor cells.  The graft and the Leukemia continue to battle it out and slowly the Leukemia is chipping its way back into John’s life. 

Since we believe that John experienced Guillian Barre (GBS) as a complication of his new immune system rapidly engrafting, we (especially John) are choosing not to give a DLI (Donor Lymphocyte Infusion), Natural Killer Cell Infusion or chemotherapy of any type – to prolong his life.  We fear any stimulation of his immune system will reignite his GBS and that is not how we/he wants to spend his remaining time.  John is guiding us on this last leg of his journey and we continue to follow his lead. 

How long could this go on?  When will the lymphocytes blast off? (The term “blast off” is used because it’s lymphoblastic Leukemia).  No one knows exactly - it could days, weeks or months.  Patients are typically NOT monitored as closely as John was/is post transplant, so other patients could go months and months without monitoring of possible detectable leukemia therefore, we have no data to compare John’s trajectory to. 

John is still recovering from GBS.  He’s making progress with his physical therapy but it’s slow and very painful.  This is just another example of John’s UNSTOPPABLE DETERMINATION.  He is painfully aware of his prognosis but continues to push himself to achieve his goals - sitting up independently, standing with assistance and hopefully walking with an assisted device.     

We are NOT giving up.  We are very much still fighting – we just aren’t fighting for his unattainable cure.  We are fighting for quality of life.  We are fighting for DIGNITY before Leukemia consumes him! 

We are grateful for the care of our St. Jude family.  They continue to support our choices, wishes and goals unconditionally (although Dr. Pui has had the hardest time letting go – he loves John so much and still finds it difficult at times to “comfort” John instead of “treat” John).     

Thank you so much for the thoughtful cards, letters, texts, emails, care packages and generous gift-cards.  We appreciate every single one of them.  We feel the love from our family, friends, neighborhood, school (CPS), community and the financial services industry.  You all have made a difference in our lives and we are thankful that you continue to walk this journey with us.  

Please continue to pray for John’s comfort and peace.

Love, Kathy

 

Save the Date: St. Jude Evening of Hope, March 12, 2016 Ritz Carlton Urban Garden, Charlotte.

 

Our Memphis address:

Target House I

Patient John Hagen

1811 Poplar Avenue, Apt. #103

Memphis, TN 38104

 

John’s Unstoppable Determination has inspired and united many.  Thank you for continuing to share how his resolve and strength has impacted your life.

 

Below is a letter from Kevin Murphy, written to John after hearing

the news that he relapsing yet again.  (shared with his permission)

 

Hi John –

I am a friend of your Dad’s through work.  I, like countless others, have been inspired by your determination and spirit.  I hear a lot of people talk about an indomitable spirit, which clearly is something you possess.  The term indomitable refers to something that can’ t be beat.  Spirit is that divine consciousness that we all share.  So, someone with an indomitable spirit has really just discovered the strength that is within us all, and that is what lasts forever.  Therefore, it can never be beat by anything in this world, because everything in the physical world we see is finite, and that internal strength we all share is infinite.  I am sure it is hard to comprehend why your journey has taken the path it has.  Bringing your family closer together in an indestructible bond may be one reason, but we never quite realize why things happen the way they do.  There are always life- learning lessons that we accumulate along our journey, and those are valuable to us, but it doesn’t encapsulate all the lessons that others have learned from our journey.  Selfish people live their lives focused on themselves, and how their actions and behavior impacts their self.  Selfless people live their lives focused on others, and how their actions impacts them.  I have only met you once, John, but you are one of the most selfless people I have ever known.  There are countless people who have

been inspired through your actions and behavior, and they will continue to carry a part of that indomitable spirit that you have passed to them.  You know, they say the word inspiration comes from the term “in-spirit”. Well, by being in-spirit, or in connection with your inner strength, you have been an inspiration to more than you will ever know.  Whether we realize it or not, we are all just participants in the movie of life.  Unfortunately, too many people get caught up in what is going on around them and never take the time to actually watch the movie while it’s going on.  Either we can identify with the person who is in the movie, or we can identify with the person watching the movie.  The person in the movie is our physical being.  The person watching the movie is our eternal being.  When we are aware that we are watching the movie of our life, we have joined forces with the eternal self that we all share.  Watch the movie, John, and you will connect with all the love and compassion in the people all around you.  That is what is real.  That is what never dies.  That is the true meaning of life.

With great love and respect,

Kevin Murphy

 

 

 

 

 

 

   

 

 

 

 

 

 

 

Our Eyes are Fixed on the Lord, Pleading for His Mercy-Psalm 123 - Guest Post from Kelly Crum

I spoke to Kathy today and she asked me to write an update to share what has transpired since John and his family returned to St. Jude.

 

As you know, John’s MRD test in June revealed that the leukemia he has been battling for 3 and a half years had returned. The MRD measures “minimal residual disease” and can detect one ALL cell among 10,000 to 100,000 normal cells in clinical samples. That is all to say that at this time, John’s leukemia is at a microscopic level.  When patients with John’s type of leukemia (T-cell) relapse, the leukemia often “blasts off” within a matter of weeks. That is what the Hagen family was expecting and planning for when they returned to St. Jude.

 

When the team at St. Jude assessed John upon his return, they found that although his MRD is positive, he is otherwise stable and the numbers do not seem to indicate that his leukemia will be blasting off anytime soon. It could, in fact, be many months before this happens.

 

In the meantime, the family is trying to re-group and make the most of whatever time John has left. This is complicated by the fact that he remains bedridden and in need of full-time nursing care. Since returning to St. Jude, they have focused on continuing with physical therapy, having quality family time and finding smiles and whatever joy they can each day.

 

Once again, they find themselves at a heartbreaking crossroad, facing decisions no one should ever have to make. Right now, they are investigating various possibilities for how and where to spend the next few months—either at St. Jude or possibly back home in Charlotte.

 

Their prayer request remains the same—peace and comfort for John and healing in whatever form it may come. They can feel your love and prayers and even in these darkest of days, they are thankful for the never-ending support.

 

Much love,

Kelly Crum

 

Pray for Peace

There is no easy way to share this news, but Kathy and Rich wanted me to let you all know that earlier today they learned that John is MRD positive and has relapsed. His leukemia is brutally resistant and despite the heroic efforts of John, his family and the doctors and caregivers at St. Jude and the prayers and love of so many, John’s cure will not come on Earth.

John, Isabella, Kathy and Rich will be going back to St. Jude in a few days where they know they will be lovingly guided through the next part of this journey. Their unstoppable determination has not wavered--even in the face of these long, hard months--and they are determined to make whatever time John has left as loving and peaceful as they can.

Kathy specifically asked that we pray for John to find peace in the days ahead. I shared with Kathy today that at the recent graduation ceremonies for John’s eighth grade class at Charlotte Prep, one of the speakers referenced “the Unstoppable Determination that united us all. “   And truly it has.

Please pray for their beautiful, brave boy and for their peace and comfort in the days to come.  If you would like to send cards of encouragement, the address to use is:

John Hagen
 

Much love,

Kelly Crum

There’s No Place Like Home - Guest Post by Kelly Crum

Hello from Memphis. Now this is an update I’ve been praying to write.  John, Kathy, Rich and Isabella are coming home to Charlotte. During these past few weeks, John has slowly been recovering from the Guillain Barre Syndrome while also remaining MRD negative with no detectable evidence of leukemia. Although he still has a tracheotomy and is very weak, he is fully weaned from the ventilator and able to move his upper body. The consensus of the medical team at St. Jude, along with Rich and Kathy, is that John’s best chance at a full recovery from the GBS is to transfer to Levine where he can ultimately be admitted to their inpatient rehabilitation facility for aggressive rehab/physical therapy.

John and Rich will be flying on a medical transport plane (accompanied by a nurse) from Memphis to Levine Children’s Hospital in Charlotte on Tuesday morning.  He will briefly be admitted to the ICU before being transferred to the leukemia service at Levine. Once he builds some additional strength with visits from the rehabilitation therapists, he will be transferred to the rehabilitation floor for intense therapy.

Needless to say, leaving the amazing caregivers at St. Jude is bittersweet for all of the Hagen’s. They know this is the next best step for John, but it is not easy to leave the people who have fought so hard to give John his forever cure and to lift up the entire family during these last few agonizing months. There is a constant stream of nurses, doctors and staff coming to say goodbye and wishing them all Godspeed for the next phase of John’s journey. Rest assured that the people of St. Jude love John as much as we all do.

Kathy and Bella will be driving back to Charlotte on Monday to get organized for John’s arrival. We spent the weekend packing up the Target House apartment and cramming Kathy’s car full of eight months of belongings.  Shout out to our friend Janet who skillfully utilized every inch of the car with an efficiency that is hard to put into words.

Kathy asked me to be sure and thank everyone for their prayers, cards, letters and many, many gift cards. You will never know how much all of the love and support means to them. Please pray for all of them during this transition. Pray that John will recover fully from the GBS, remain MRD negative and that he will feel God’s peace as he comes home and begins rehab.

I know that those of you in Charlotte in particular will be anxious to help the Hagen family in any way you can. Once they get settled into Levine and a new routine, we will be back in touch to let you know how you can help. Also, many people will be eager to see John and we will also let you know when he is ready to see visitors.  In the meantime, join us in prayers of thanksgiving that John is coming home.

Much love from Memphis,
Kelly Crum

Day By Day - Guest Post by Kelly Crum

Dear Friends of John,

I spoke to Kathy earlier today and she asked me to update you all on John’s condition. When he was first stricken with Guillain-Barre Syndrome, John was intubated, put in a medically induced coma and fully dependent on the ventilator in the ICU. On Friday, March 13, the team at St. Jude determined that the best course of action was to perform a tracheotomy on John, so that they could remove the breathing tube, which carries with it a risk of pneumonia and infection. They were subsequently able to wake John up and begin the process of weaning him off the sedation. Although he is still dependent on the ventilator, he has started breathing over it at times. He cannot yet breathe fully on his own, but he can initiate breaths and the machine finishes them and fills his lungs. While still paralyzed, he is now able to move his head back and forth, lift his shoulders and rock his forearms back and forth slightly. The way back from Guillain-Barre Syndrome can be painstakingly slow and differs from patient to patient. John is much more stable now but only awake about two hours a day and still in excruciating pain. They are able to keep him comfortable with narcotics, but he is understandably anxious and afraid.  Rich, Kathy, and sweet Bella, wise beyond her 16 years, stay by John’s side, continually reassuring him and trying to keep him comfortable. Meanwhile, John’s last three MRD tests have been at 0 percent with no detectable leukemia. He will continue to be tested each week.

How Can We Help?

Wednesday, March 25, will mark three years since John was first diagnosed with leukemia. The road has been long and hard and the Guillain-Barre feels like the cruelest twist of fate. The greatest need right now is for prayers. Kathy asks that we continue to pray for peace and healing in whatever way it might come. Pray that God will help John feel His peace and for Kathy, Rich and Bella to find the strength they need each day.

Because the family is spending nearly every minute at the hospital, gift cards to Starbucks, Panera, Whole Foods and the Fresh Market are also greatly appreciated.

Finally, I want to add that you can support St. Jude on behalf of John and his family. As Kathy said, “It seems like the deeper the hole we get in, the more the people of St. Jude rise up for us.” The ICU staff has been incredibly kind and supportive and most importantly, continues to treat John with dignity and love.  The love for John and his unstoppable determination can be felt in every corner of St. Jude and it means everything to the entire family at this difficult, difficult time.

With love and hope for John’s forever cure,

Kelly Crum

 

Critical Condition

This is among the most painful updates I’ve had to write.  The emotional and physical suffering our family has endured over the last week and a half is unbearable.  At times I can barely keep my composure – It takes every last bit of strength I have to stand next to John’s bed and see him suffering this way.

A timeline is probably the best way to describe the events that have taken place:

Feb 11th

John was doing so well.  He was healing from his splenectomy, his engraftment was rocking & his MRD was on the way down.  For a moment we actually felt like “we CAN do this!”.  With transplant day +100 right around the corner I even let myself start to think of going home.

Feb 15th – 18th  

We were settled back in at the Target House.  John was weak but we all attributed it to his lack of nutrition – we increased his feeding and waited for improvement.  His weakness progressed.  His speech was slowed, he was no longer able to stand or walk without assistance and he lost the ability to lift his arms.  This was when sheer panic set in (for all of us – including John) and we bolted to St. Jude. 

Feb 19th

Thursday morning/afternoon was organized chaos.  John experienced RAPID ascending paralysis and was immediately admitted to ICU (Martha May was literally running while pushing John’s hospital bed to the ICU).  Most of the day was spent assessing his condition and giving him medical support to stabilize his deteriorating status. 

Thursday night was one of the hardest days of this journey – John’s breathing was increasingly labored (paralysis was effecting his diaphragm) and he was suffering terribly.  I held his hand tightly and we had a brief heart to heart (I poured my heart out and said everything I’ve every wanted to say to him incase it was the last time I spoke to him) then the ICU Intensivist and his team rushed in to intubate.  We stood outside the room and sobbed.  Bella, who has been very strong during this journey, finally became overwhelmed with emotion and wept inconsolably – both of my children were suffering and I felt helpless, heartbroken and terrified.  After John was stable and comfortable we were allowed back in the room (he is on a Dilauidid pump for pain and Versed pump for sedation).  I couldn’t get to him fast enough – all I wanted to do was hug him but I couldn’t, he was covered in tubes, so I kissed and held his sweet hand.  Loving Bella, once again, didn’t shy away in fear, she put her hand on John’s head and told him he was ok and she was going to spend the night next to him (as she always does).  Rich was quiet – he stood at the foot of the bed, looking at John on life support, in total disbelief.       

Feb 20th

The day started early – we attended “rounds” with doctors from all disciplines:  ICU, Leukemia, Transplant, Neurology, Infectious Disease, Respiratory, Pharmacy, Nutrition etc- all hands were on deck!  Pui wanted swift action and he made it very clear he wanted answers.  John had an MRI of the spine & brain (checking for lesions, and/or inflammation), Lumbar Punction (checking for pressure, protein in the spinal fluid, bacteria, viruses, fungus and Leukemia) Bone Marrow Aspirate (checking for Leukemia) and labs (checking for everything imaginable – truly everything!). 

Feb 21st  

Although John was very sedated, he had moments of alertness and was able to cry and move his head slightly in response to questions.  We tried to only ask questions that would aid in a diagnosis – he was VERY anxious & aware of what was happening to his body.   

 Feb 22nd – 26th

Results from his Cerebral Spinal Fluid and Blood cultures started to stream in.  His spinal fluid had high levels of protein (consistent with Guillain-Barre Syndrome), high levels of white blood cells (consistent with infection although all cultures showed no bacterial or fungal infections) and negative for Leukemia.  Blood cultures were all also negative for bacterial infections and Leukemia (MRD 0.000%).  Also, Neurology performed a Nerve Conduction Study, the finding were consistent with Guillain-Barre Syndrome.  Given that information, his clinical status & his CNS results, a diagnosis of Guillain-Barre Syndrome (GBS) was established. GBS is a rare disorder in which your body's immune system attacks its own nerves.  The exact cause of GBS is unknown. But it is often preceded by an infection or illness.  John’s doctors feel, in John’s case, it may be due to post transplant immune-reconstitution, especially since he had VERY robust engraftment after his Splenectomy).  There is no known cure for Guillain-Barre syndrome, but several treatments can ease symptoms and reduce the duration of the illness (high dose IVIG treatments and Plasmapheresis). Most people recover from GBS, though some may experience lingering effects.  John is, once again, a unique patient in that his body is already compromised from years of therapy and his stem cell transplant so, no one is speculating on his recovery or prognosis.

A five-day course of high dose IVIG treatment began. IVIG is an immunoglobulin containing healthy antibodies pooled from over one thousand donors. The theory is that the high dose of immunoglobulin would block the damaging antibodies that may contribute to GBS. 

Feb 27th 

At this point we were hoping to see, at the very least, his symptoms plateau but instead we saw a steady decline in his autonomic nervous system functions (most notably in his cardiac regulation).  We also noticed more significant paralysis in his face.  After another neurological exam in the afternoon, performed daily by our new friend, Dr. Khan, it was decided we would proceed with Plasmapheresis (five plasma exchanges – one every other day).  During this process the liquid portion of John’s blood (plasma) is removed and separated from his blood cells. The blood cells are then put back into his body. Plasmapheresis is thought to help BGS by ridding the plasma of certain antibodies that contribute to the immune system's attack on the peripheral nerves.

John was quickly brought down to Interventional Radiology where our old friend, Dr. Gold, placed a Central Venous Line in his neck (for apheresis) as well as an arterial line in his wrist (used to monitor more closely and accurately his BP).  By the time we rolled back (late evening) the apheresis team was in place and ready to begin. (only at The Jude could this be arranged so quickly)  

Since John is now a high risk for a “cardiac event” they began with only a half plasma volume treatment.  During the exchange John’s blood pressure and pulse continued to skyrocket then plummet nevertheless, his vitals were managed very well.  

At this point our only form of communication with John was with his eyes (opening his eyes if the answer to our question is yes etc.) he was no longer able to move his head or neck.  He does, however, continue to shed tears.  We continued to spend most of our time with him just talking, reassuring him that he is safe and informing him that a large team of doctors and nursing are working tirelessly to help him. 

Feb 28th

We started the morning with Plasma Exchange #2 – this time it was total plasma volume.  It was an effort keeping John’s vitals stable during and after the procedure but the apheresis was accomplished as planned.  

John no longer responded to us.  His eyes opened and closed as a reflex only.  When they were open, they were glazed and looked right through us.  Tears, however, would roll down his face without explanation.     

March 1st  

Given John’s gaze, Neurology ordered a lumbar puncture to re-access his cerebral spinal pressure and protein levels.  Sweet Martha came in on a Sunday to perform the procedure (again, only at St. Jude).  The results showed an exponential increase in protein (consistent with GBS) and an increase in cranial pressure.    

He is somewhat more responsive, nodding slightly when asked a question, crying when in pain or anxious but overall still completely paralyzed.

Thank You(s)

I can’t end this post without giving a very special thank you to the STJ staff attending to John’s every medical and emotional need.  Dr. Pui (unwavering – he is and always has been about treating the child not the disease) Martha May (faithful and loyal – taking it one step further by treating our family not John’s disease), the ICU staff (rockstars – continuity of care has been seamless), the nurses & doctors from Leukemia (as always very compassionate), the Neurologist, Dr. Khan (while new to the Hagen journey, devoted to John’s care), the BMT staff (just the 4 who like us J - invested and genuinely concerned), Psychology (consistently making sure our mental health is in check!), Interventional Radiology and Imaging (completely accommodating to John’s urgent needs), line nurse (gently caring for John’s central lines even though the nurses up here in ICU are capable), food services (bringing Bella a milkshake every day even though she’s not the patient), the many others at STJ who stop to hug us and tell us our family is in their thoughts and prayers and last but not least our family and friends who carry our family in their hearts. 

Overall Status

John is in critical condition.  His life remains entirely dependent of life support.  

How does that look? 

Scary – he has a tube coming from his mouth connected to a stand alone ventilator bedside, a double lumen central line coming from his chest, a double lumen central line coming from his neck, an arterial line in his wrist, a catheter and a pole with 8 chambers and 3 CADD infusion pumps attached.  His face is swollen but his body is thin and his muscles are atrophied. 

What does it mean?

We are uncertain.  He is receiving all known treatments and supportive care.  We are letting John’s body and his doctors guide us (read between the lines).   

How are we?

We are terrified and heartbroken.  We aren’t ready to let go but our hearts are heavy seeing John suffer.

What do we need?

Please join us in praying for healing and peace – in heaven or on Earth.

Love,

Kathy

 

Be Not Afraid… Guest Post by Kelly Crum

This is not the news we have all been praying for so fervently, but I know so many of you who love John and the Hagen's are anxious for an update.  Earlier this week, John began experiencing weakness in his arms and legs, which was initially attributed to malnutrition from these many months of treatment.  Yesterday, John was admitted to the ICU and the paralysis progressed to the point that he had to be intubated. He is now sedated and on a ventilator to help him breathe. This morning he is having an MRI and a spinal tap so the team at St. Jude can try and figure out the cause of these developments.  Possible causes include a relapse of the leukemia in his central nervous system, Guillain –Barre’  Syndrome, transverse myelitis, meningitis or encephalitis.  

Kathy has asked us to pray for peace and to give them privacy as they navigate this part of John's journey. I will update when there is more news to share.  Your prayers and love continue to mean to the world to all of the Hagen's. Their unstoppable determination and absolute devotion to John remains strong in this storm. Keep praying.

Much love,
Kelly Crum

NEGATIVE but DETECTABLE

Monday’s MRD results brought renewed hope.  John’s MRD = 0.002% NEGATIVE but DETECTABLE.  The plan, check again next Monday and pray he is 0.000% negative with no detectable leukemia.  The transplant team is hopeful that he is engrafting and his news cells are fighting off his residual leukemia.  

We (including John) are cautiously optimistic; our hearts are guarded.  We continue to pray that every day brings us one closer to his CURE.

Love,

Kathy

Sayonara Spleen

After a 3 ½ hour surgery, John’s spleen was successfully removed yesterday.  The plan was to remove it laparoscopically but early on in surgery they realized it would be safer to perform an open splenectomy.  It’s a much more complicated procedure with a longer recovery but it was necessary given the size of John’s spleen (it was larger than a 2 liter bottle of soda).  

The pre-op preparations helped tremendously with surgical related bleeding (he was very high-risk for bleeding given his low platelet count – you may recall his spleen sequestered his cells).  The day and night before surgery hematology tanked him up with a continuous platelet infusion, multiple bags of plasma and whole blood.  During the surgery he did experience blood loss but the St. Jude blood bank was ready and waiting with blood products.  All in all, he remained stable during the extensive surgery and the surgeon & anesthesiologist were pleased.  

The spleen will be sent off to pathology and within a couple days we should hear if they find anything unusual – outside of the millions of cells it’s been sequestering!  Damn spleen!  

John can live without a spleen but, because the spleen plays a crucial role in the body's ability to fight off bacteria, living without the organ makes him more likely to develop dangerous infections.  He will be on indefinite daily antibiotics and will, depending on his immune status, receive vaccinations protecting him from pneumonia, meningitis, and other serious infections. 

John spent last night in the ICU - happy to report we are back on the Transplant floor.  The new ICU at STJ is amazing but we were ready to get back to the comforts of Room 9.   John is on a Dilaudid pain pump, giving him some relief from the 23cm long incision.  He sat up this morning in a chair and chatted briefly with us about the surgery.  He’s back in bed, resting, somewhat comfortably. 

Monday’s MRD came back at 0.012% - down from last’s weeks 0.035% and the previous week’s 0.089%.  He did receive a small dose of chemotherapy two weeks ago but the “team” is  considering the possibility that his new cells may also be fighting his leukemia.  Rich and I know that it is VERY unlikely that a late engraftment can fight off any or all of his residual leukemia but we are going to pray that John’s body will have a robust recovery and his new donor cells will finally, sans the spleen, have chance to show what they can do!  

ReIntensification is on hold for one week.  We’ll check his MRD next Monday: if it’s 0.012% or less he will receive another NK cell infusion using my cells, if it’s 0.012% or greater we’ll most likely proceed with chemotherapy as planned.  

Rich and I know we need a miracle for this “best case scenario” but we are still praying for it!  Please pray John’s body continues to engraft and his immune system strengthens – fighting off all remaining leukemia!  

Love, Kathy

 

Still Holding on to Hope - Guest Post by Kelly Crum

Hello from a guest updater. Our friend Stacey and I made a quick trip to Memphis this weekend to lift up the Hagens and to try and to tell them in person about the incredible amount of love and support that is with them on this journey. I know that all of you who read Kathy’s beautiful posts are anxious to hear the latest news as you pray for John and his family.

First and foremost, right now John is resting comfortably and having what one of his nurses described as “boring” days. Right now boring = good. Although tired and extremely weak from the grueling transplant process, John is stable and even played a few hands of UNO with the family yesterday. Bella, Rich and Kathy are savoring these moments, all the while still hoping and praying for John’s forever cure, and most of all for his comfort and peace.

On the medical front, here is the latest:

Last week, John did go to Le Bonheur, the children’s hospital in Memphis, to undergo the TIPS procedure to put a shunt in his liver. Unfortunately, the pressure in his portal vein was too low (still high but not high enough to keep a shunt open) to proceed with the procedure. Needless to say, this was another devastating blow, as it prevented the surgeon from fixing the problem that most likely caused John not to engraft from the transplant. Fortunately, John continues to be cared for by the amazing doctors at St. Jude, who along with his parents, have consulted with other worldwide experts, to devise a Plan B.

 Plan B

On Monday morning, John will undergo surgery at St. Jude to have his spleen removed. The surgeon was very blunt about the risks involved in a surgery for someone whose organs are as compromised as John’s are.  Once John recovers from the surgery (hopefully a week or so), he will begin a five-day regimen of re-intensification chemo, with the goal of getting his cancer back in remission (MRD= 0). John’s beloved Dr. Pui has consulted with other experts all over the world to try and create a protocol to cure John. After re-intensification, they will do another MRD and make decisions about the next steps.

More than anything, the Hagens need our prayers that God will guide them through the next part of this journey and bring them all peace. John’s situation changes rapidly and they are in unchartered waters--most certainly having to make decisions that no parent should ever have to face. Yet as you know from reading Kathy’s posts, they meet each challenge with grace, always meeting each challenge head on, still holding on to hope.

Next weekend is the Hagen’s fundraiser in Charlotte, the Evening of Hope (www.stjude.org/eveningofhope). It is not too late to join them in supporting all the children and families who find find hope at St. Jude. 

Much love from Memphis,

Kelly Crum

Not Ready to Let Go

Jan 22nd, 2015

John has once again relapsed.  His most recent MRD test result showed a Leukemia burden of 0.089%.  Rich and I are devastated.  With each relapse we experience a new level of heartache, a heartache that takes our breath away.

We received the news Tuesday and I delivered it to John Tuesday night.  I tried to be strong but I could barely get through the word relapse without decompensating.  We hugged each other for a long time & cried until no tears were left.  As he drifted off to sleep I pulled up a chair next to his bed and draped my arms around his legs.  I love him so much and I wanted him to feel that love.  

After sleeping on the news John & I had the hardest conversation we’ve ever have to have.  When is enough – enough?  Did he want to keep fighting?  He told me he didn’t want to “give up”.  I have decided that at this stage of his journey, I hate that phrase.  I tried to explain to him that he wouldn’t be giving up, he would be letting go – letting go of the suffering if he’s too tired of fighting.  I shared with him my view of Heaven, a place where he wouldn’t be poked and prodded, nauseated or in pain – a place of peace – a place where someday we would meet again and “hangout forever”.  I wanted him to know that he shouldn’t fight for me or Rich, we can’t selfishly ask him to fight for “time” with us anymore.  He didn’t ponder long before telling me that he wasn’t ready to “let go”, he wanted to keep fighting and that he would let us know when enough was enough.  He amazes me with his continued determination and courage.  So, we will follow his lead and let him guide us.     

Why didn’t the Transplant work?

John is still 100% donor but he was too slow to engraft and his new immune system wasn’t strong enough to fight off his very resilient Leukemia.  They feel his compromised liver caused his spleen to sequester the stem cells, not allowing them to engraft properly.   

The plan

He started chemotherapy last night, a very low dose, just enough to keep his Leukemia from blasting off.  Why so little?  We need decent counts.  Next Monday John will be transported to the local children’s hospital, Le Bonheur, for  a TIPS procedure.  He will be admitted to their ICU Monday night, have surgery Tuesday morning and spend at least one more night in the ICU before being transported back (in an ambulance) to the ICU at St. Jude – there is so much more to the transfer … given John’s compromised status it has taken days to orchestrate the actual transfer and organize his care.  Its not a procedure usually done on children so it’s in John’s best interest it be performed where they have access to all the right instruments, appropriate staff, etc.  A Transjugular Intrahepatic Portosystemic Shunt (TIPS) is placed between the portal vein and the hepatic vein.  The hope is that the shunt will reduce the pressure in the portal vein, stop the sequestration of cells in the spleen and diminish the varices to decrease the probability he will hemorrhage from ruptured varices.  There are many life-threating complications to this procedure (I’ll let you Google it) – but after much consideration and input from other hospitals (CHOP and Dana Farber) this is our best chance at a alleviating the pressure in John’s portal vein (caused by his liver cirrhosis).

Upon his return/recovery we will test his MRD again and restart ReIntensification.  A week of knock down, blow out chemotherapy – aimed at achieving remission so he can head back to BMT for another transplant.  We have almost no details at this point regarding the actual protocol or conditioning regimen they will use – all we know is that Rich will more than likely be the donor.  A second transplant is risky, and they certainly aren’t making us any promises.  This is our Hail Mary Pass, made in desperation with only a small chance of success.

As you can imagine Rich and I are heartbroken and trying to process the new reality we are faced with.  Every minute seems like forever, we just tell ourselves, “get through the next few minutes”, and we do.  That is how we plan to make it through this part of his journey, minute by minute.  

Sweet, sweet Bella is a pillar of strength, also determined.  She’s fought along side John for almost 3 years and she’s not about to leave his side now, literally or figuratively.  She hasn’t left his bedside in weeks.  She also sleeps in his hospital suite on the sleeper coach.  She works diligently on her studies during the day and steps is as my helper at night – never complaining, never looking away.  She is truly a survivor too and I couldn’t be more proud of the young lady she is becoming.  

I’ll do my best to keep you all updated but writing is hard, it’s just another reality check that my heart can’t always tolerate.  

Please pray for our family and all of the families at St. Jude whose children are fighting for their lives.   

Our children deserve a lifetime – and only through research will they get that chance!  Please join our family in making a difference by donating to St. Jude through our annual St. Jude Evening of Hope www.stjude.org/eveningofhope 

 

Love, Kathy