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