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