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