Round Two Chemo Starts on Leap Day? Bring It.

Happy Leap Day!  Ryan’s second cycle of chemotherapy started today.  Each cycle lasts four weeks, and he will have at least six cycles in total before we can determine if he’s in remission.

The best thing about chemo cycles is the last 13 days of each cycle, which include zero IV drips.  While Ryan still home-medicates during those days, his energy levels and overall well being become increasingly more like normal with each passing hour.  In the past week, we enjoyed visiting the Cirque d’Hiver and the Paris Aquarium, and Ryan spent lots of time with his friends, Ethan, Dano, and Álvaro.

He also received two boxes of Girl Scout cookies in the mail last week, which was awesome, thanks to Ronnie and Francie (and their beautiful mother, who has - sometimes reluctantly - held the title of The Bestie since second grade).  And so many other friends in the USA have sent him cards and notes.  Thank you to everyone for your words of encouragement!

This week, Ryan returns to Institut Curie every day for IV drips, today’s drip being the longest (7 hours) and including the entire disease-fighting cocktail.

It’s weird how being here at I.C. has become one of the most normal and dependable aspects of our lives since Ryan was diagnosed with Hodgkins Lymphoma five weeks ago.  The pediatric oncology team at Institut Curie includes kind, intelligent, professional, empathetic, well-educated people who genuinely care about curing every child here.  And while it can be rather boring sitting around watching paint dry (or, watching The Red Devil drip - drip - drip - drip -drip), our days are made happier by smiling faces, art lessons and Parent Association volunteers, and a self-serve espresso machine that has instantly improved my mood on many occasions.

There are lots of great kids here at Institut Curie, too, and while the language barrier creates a certain shyness at first, we’ve warmed up and are making some friends.  Ryan spent this afternoon drawing with two very cool teenaged French girls.  When one of them introduced the other to Ryan, she said in her best fake American accent, “Ryan is American.  If you want to talk to him, you’ll have to practice your English.”  Everyone laughed (I’m still laughing), and I think that was the last English she spoke today :)

We’ll be back at I.C. again tomorrow for another IV drip and also for a follow-up Ultrasound of the blood clot near Ryan’s catheter.  If the clot has improved, he can hopefully stop stabbing himself with Heparin every day, so keep your fingers crossed for good results there!

The Toughest Opponent

True story.  When I was pregnant with Ryan, I considered naming him Rocco just so that I could call him Rocky.  Thanks to all the intelligent people who love me, that didn’t happen.

My husband Steve is a New Yorker, and he has this theory about people from Philly.  He says we believe Rocky is a real guy, because our sports teams can’t win titles.  So we have the heavyweight champion of the world.  Look, I didn’t say it.  But he is real, right?

Wednesday afternoon, Ryan and I snuggled on the couch together and watched Creed, the newest movie in the Rocky franchise.  Not to ruin it for you, but Rocky discovers he has Non-Hodgkins Lymphoma.  Young Donny convinces him to fight and helps him through his chemotherapy and the side effects.  Both emerge victorious, and Rocky celebrates his battle at the top of the Art Museum steps.

Ryan thought this was all very cool, especially the part about how I almost named him Rocky.  So we have a new theme song around these parts.

This has been a slow week for Ryan.  He had a big day of chemo on Monday.  We were at the hospital all day, but we know how to prepare now.  Plus, we ordered take-out from the empanadas place next to the Luxembourg Gardens.  He finished his homework, and then spent the afternoon with Marine the volunteer art teacher.  I guess some kids will do anything to take private art lessons in Paris from a beautiful French girl.

The good news is, Tuesday began his rest period.  He doesn’t go back to the hospital for IV drips until Monday, February 29.  The bad news is, Monday’s chemo brought about a slew of expected but unpleasant side effects, like excruciating bone and joint pain and painful stomach cramps.  We have meds to help manage these side effects, but he did miss school the entire week (aside from a short trip to Marymount to take his French test on Tuesday).

Ryan is still giving himself a once-daily shot of Heparin, a blood thinner prescribed for a clot near his catheter.  I guess he didn’t like the way I was administering the needle, despite my illustrious background as a “nurse.”  He took matters into his own hands, and he’s gotten quite good at it.

Also, we take the Metro (one stop) on Mondays and Thursdays (when we’re not at Institut Curie) to a nearby lab, where Ryan gets his blood tested.  His last test showed decreased white blood cells, which requires us to take his temperature a few times each day. That’s easy.  The docs are looking for decreased red blood cells or decreased platelets, which will require blood transfusions.  So far, so good.

I managed to return to French classes 3 mornings this week.  Don’t ask me how, although we’ve had so much help and support around here, it shouldn’t come as any surprise that I can escape.  The kind and generous Marymount Moms, the fabulous ladies of The American Women’s Group in Paris, Steve’s knowledgable coworkers, and our many other friends have offered us so much — hot meals, car rides, home baked sugar free goodies, cards in the mail for Ryan, visits, funny emails… It matters, and it makes a difference.  Thank you for being “in his corner.”

Ryan is as positive as ever!  He has now lost nearly all of his hair, and has taken to wearing a hat outside of the apartment.  He hasn’t gotten into any of his baseball caps yet, although he has lots of them (maybe in warmer weather?).  It seems the cool thing in the chemo world right now is the beanie cap.  Despite the pain, the hair loss and the missed school, he smiles and jokes constantly, is as lovable as ever, talks to his friends daily, and has completed most of his academic assignments.

The next 2 weeks are Les Vacances in France.  In other words, everyone is off from school.  Ryan was scheduled for a big ski trip in the French Alps with his friends, and needless to say, we had to cancel that.  He was disappointed, but again, nothing seems to devastate this kid.  He just shrugs his shoulders, says “next year,” and gets back in the ring.

Ryan's last ski trip just before his diagnosis - France, December 2015

Chamonix, France - December 2015 - Ryan, Blaise, Tom, Steven, Pat, and Hannah

Updates on Ryan

Hello Friends and Family!  This seems to be the best way to keep everyone up to date on Ryan’s progress, although I apologize that it may feel impersonal.  Thank you so much for your support, prayers, assistance, and most of all, for your positive energy, as Ryan begins his journey toward remission and recovery.

Ryan drew this at Institut Curie with his adorable volunteer art teacher, Marine

On Monday, January 11th, 5 weeks ago, Ryan pointed to a lump on his neck, and an hour later, we saw my family practitioner here in Paris.  She immediately ordered blood tests, an ultrasound, and a chest x-ray, and based on those results, referred us to a highly regarded pediatrician.  He saw us quickly, and he ordered a CAT scan to confirm what was looking like Hodgkins Lymphoma.

With those results in hand, we were referred to the Insitut Curie, a renowned oncology hospital located in the historic Latin Quarter of Paris.  Their pediatric oncology team acted quickly and ordered the last of the required tests, including a PET scan, to confirm Hodgkins.  They admitted Ryan for a surgical biopsy of his neck, his spleen, and his pelvic bones.  While in surgery, they also inserted a catheter under the skin in Ryan’s chest through which they could eventually administer intravenous medications and take blood tests.

The following Monday, February 1st, Ryan began his first course of chemotherapy to treat what is now officially diagnosed as Hodgkins Lymphoma.  His disease-fighting medications include Vincristine, Etoposide, Prednisone, and Adriamycine, and he takes a series of pills each day to fight side effects such as bone and joint pain, nausea, and stomach cramps.

Ryan has had a few simple setbacks, but we’re learning, that happens.  A blood clot developed near his catheter, which requires Ryan to administer (all by himself!) a daily shot of blood thinner in his leg.  The results of his PET scan showed some questionable energy in Ryan’s pelvic bones, so a follow-up MRI was ordered, which confirmed enough activity in his bones to definitely say Ryan will require 6 months of chemotherapy.  And thanks to the dreaded Vincristine, Ryan suffered an excruciating case of lock jaw, which has been overcome by cutting his dosage of “The Vinc” in half.

Needless to say, our French has greatly improved over the past few weeks, but we’ve also learned a whole new international language: Chemo Speak.

Ryan has maintained his positive attitude, his hilarious sense of humor, and his killer good looks.  Two days ago, he started losing his hair, so Steve broke out the clippers and buzzed him.  Needless to say, the French babes are still crazy for him.

Ryan has an extraordinary group of friends, who have been incredibly supportive since the beginning of this challenge.  While he does manage to get to school from time to time (really!), they stay in contact with him through Skype and X-Box, join him for trips to the hospital, tutor him, and make sure he stays current with his schoolwork.  Likewise, the staff and teachers at Marymount are compassionate, dedicated, thorough, and prayerful, and they are doing everything possible to ensure Ryan graduates with his 8th Grade class in June.  Coach Barbeau has even held a spot for Ryan to “co-coach” his basketball team in Lisbon, Portugal later this Spring!

Steve and I are also fortunate to have a core, loyal group of friends here in Paris - American and French - who constantly come to our rescue.  During the first 3 weeks of this experience, the French taxi drivers decided to strike, followed by the Uber drivers, then the private chauffeurs and black car drivers.  Streets were a mess, especially around our apartment at Porte Maillot (the manifestation capital of Paris).  Our friends with cars quickly rearranged their schedules and brought us everywhere we needed to go!  That is, when we weren’t taking the Metro, because Ryan insisted on being a super hero.  His docs have since put the kibosh on his Metro days, which is fine by me, because we were switching at Chatelet, and have you switched at Chatelet?

I’m also thankful to our friends who have committed to bringing us meals.  I never realized how little time I’d have left in my days after chemo and medical tests.  When we come home after a long day at the hospital and there is a meal waiting for us, whether just cooked or frozen, it is like a slice of heaven.

Ryan's brother, Blaise has been very concerned and very supportive, as well.  He is now a junior at Valley Forge Military Academy in Pennsylvania, and we are so proud of him for staying positive with Ryan and getting his work done there in the USA.  He loves to Skype with his brother and see/hear that he is doing OK.  Blaise will be back to Paris during his Spring Break in just a few weeks, from March 19 - 28.  These two guys really can't wait to see each other!

Same goes for Ryan's stepbrothers, Matt, Steven, Pat and Tom, and his stepsister, Hannah, who all inquire about him constantly.  We know they have him in their thoughts and prayers, and we miss them here in Paris.

Christmas Day, 2015 - Pat, Steven, Ryan, Hannah, Blaise, Tom, and Matt

Christmas Day 2015

Ryan’s prognosis is excellent.  Hodgkins Lymphoma is a very curable disease, and the chemotherapy protocol has proven well over 90% (99%?) effective in young, healthy guys like Ryan.  The next few months will have difficult moments, but when all is said and done, Ryan will be as good as new, taking no prisoners, and kicking butt on the soccer field by autumn.

We are grateful for everyone’s prayers and positive energy, support and help, and we will share Ryan’s progress with you on this page whenever time allows.

À bientôt!