Out of the Hospital... Yay!

Ryan - one year ago - at Stonehenge!

The thing about chemotherapy is that it’s actually a form of poison.  While it works hard to fight Ryan’s Hodgkins Lymphoma, it also attacks the healthy parts of his body.  That includes his white blood cells.  His count usually goes way down for about 5 days during the third week of each chemo cycle.  When this happens, he can’t fight infections.

Ryan went to school for an hour last Monday morning, when I got a call from the nurse that he was in a lot of pain.  I immediately picked him up.  At home, he started showing signs of fever, became lethargic and pale, then hot to the touch, and the pain in his stomach, muscles, bones, and joints was at an all time high.  This happened in a matter of three hours.

Luckily, Ryan’s medical team is always available, and they are incredibly responsive.  They told us to get to the hospital.  By 3:30 Monday afternoon, Ryan was hooked up to a continuous drip of antibiotics and pain killers.  They tested for every type of infection, including the flu, and everything came back negative.  By midnight, Ryan was feeling so much better!  His temperature returned to normal, morphine kept the pain at bay, and his spirits had improved, as well.

As a precaution, Ryan stayed at Institut Curie for 3 nights.  He finally came home on Thursday afternoon, and felt much more like his old self.  He was healthy enough to receive his chemo treatment on Wednesday, which was very good, and he doesn’t have another IV drip scheduled for a week, on Monday, April 25.

Ryan received a few visitors while he was in the hospital, but mostly he relaxed and recovered in his room, where we watched a lot of movies, and he completed some homework too.  We managed to laugh a lot, mostly at the expense of the other patients and hospital staff, but hopefully they didn’t realize we “profiled” them for 4 days.  French people in a chemo ward = that’s a serious petri dish of human psychology observations!

For the past few days, Ryan and I have been chilling at home.  He was so glad to be back in his own apartment, sleeping in his own bed, doing and enjoying all the things that are familiar to him.  We went for a few short walks to enjoy the sunshine, and we read books on a park bench.  The fresh air and the long days have been glorious.  Today, the sun was out ALL DAY, and we met "Buddy" for a walk in the Bois de Boulogne.  That was truly a highlight!

Come on, who doesn't love baguettes??

We expect this week coming up to be a good one.  Based on the pattern over the past few months, we hope Ryan may even make it to school for a couple of days.  His next cycle of chemo consists of less IV drips and some gentler medications, and while we realize chemo is cumulative, we hope that some of these painful side effects will be relieved a bit.

The important thing is, Ryan is doing a lot better!  Thanks to all of you who kept him in your thoughts and prayers last week.

The leaves have popped on the square trees in the Jardin du Luxembourg! (near Institut Curie)

Jardin du Luxembourg, Paris

Hodgkins, Here’s Your Eviction Notice

Last Tuesday morning, Ryan’s doctor reported to us the results of his PET scan and CT scan, and it was great news!  He has seen a reduction of active lymphoma by 66%.  Signs of disease in his spleen and his pelvis have disappeared, and while there is still active lymphoma in his chest, they have a plan to treat that.

Equally as important, we had the most outstanding guests here in Paris with us last week - Ryan’s brother Blaise stayed for 8 days, and my brother Dan (Uncle Dan) and his wife Kait (Aunt Kait) overlapped their visit with Blaise’s during the Easter weekend.  We had the BEST TIME.  I’d love to describe all the fun things we did, but in the interest of space, let’s summarize by saying that Blaise and I ascended the Eiffel Tower TWICE, making it my 8th time and Blaise’s 6th.  That’s a little ridiculous, we realize.  But come on, it’s The Eiffel.  Anyway, pictures say it all, so here you go.

Blaise, Bunnies, and The Eiffel - Can you take a better Selfie than that??

Braille's Grave, in Braille

Brothers in Paris

Ryan, Dan, and Blaise in Montmartre, Paris 18eme

Kait and Dan at Miznon in the Marais

Belgium Colors on The Eiffel Tower

Marie Curie's Grave at The Pantheon, Paris

Ryan, Me, and Blaise at Notre Dame, Good Friday, Paris 2016

Miznon Paris, because it's darn delicious Jewish food. and it's Easter.

Blaise and The Eiffel

Blaise and Ryan on the Rue Mouffetard in the Latin Quarter, Paris

Ryan, Dan and Me at the Louvre, Paris 2016

Today, Ryan started his second week of his 3rd cycle of chemo.  His CT and PET scans are already scheduled for May, after his 4th chemo cycle concludes, and those results will tell us where we are and what’s to come.  We expect we’ll officially hand cancer its eviction notice at that point:  "Au revoir, Hodgkins, you have 2 more months to find new accommodations and vacate the premises."

As always, thanks to our friends (and that includes people we barely know at all), who have been so generous with their time, for stepping up to do SO MANY HELPFUL THINGS.  Your support is truly appreciated, and it does make a difference!

Special Delivery Kudos for this week go to The Bestie (who has a name, by the way, and it’s Gina) and her family, who sent Rocky souvenirs from 9th Street, including the one and only magnet that I would EVER put on my refrigerator.  Also Special Delivery Kudos this week to The Bestie’s friend Cathy, a breast cancer survivor who lovingly knitted a black beanie cap for Ryan exactly like the one Rocky wore in his movies.  Thank you so much, both of you, and everyone, for your love and support!

And PS - Woooooooo Hoooooooooo Villanova!!!!!! :)

March 20: This Will Be a Very Good Week

Ryan’s big brother, Blaise arrived in Paris this morning!  Blaise is a Junior at Valley Forge Military Academy in our hometown of Wayne, Pennsylvania.  He boards at VFMA and visits us frequently.  In fact, he's quite the expert traveler these days.  I find it pretty incredible that he flies back and forth - solo - between France and the USA as often as he does, and of course, Ryan is super appreciative to have his brother here this week.

Blaise arrived in Paris at 6:30 this morning, looking dapper and excited to see Ryan!

Last week was tough for Ryan.  He had a full day of chemo on Monday and suffered joint, bone, and muscle pain every day until Friday night.  He wanted to go to school and be around his friends, but no amount of pills could take away the pain.  Fortunately, Ryan is a goal-oriented kid and is motivated to keep his grades up and stay current with his assignments and classwork.  This gives him something important to accomplish, and he’s doing really well.  It has also taught me that I could brush up on trigonometry, but I’m a darn good English teacher!  Having said that, Ryan did make it to school on Monday morning, and on Friday afternoon, and by our calculations, that’s one full day.  His friends were so happy to see him!  He was really glad he was able to attend, even for such a brief time.

This week will be a very good week!  Not only will Ryan enjoy the company of his brother, but also, it’s the 4th week of his second chemo cycle, which means zero IV drips.  He started feeling really good on Saturday morning and we’re looking forward to a pain-free week with no yucky side effects.

More importantly, this 4th week of the second cycle is a big milestone.  This is the week during which we determine just how many of the little Hodge buggers we’ve managed to beat down while systematically poisoning Ryan.  He’s scheduled for a cardiac ultrasound tomorrow to verify that his heart is still beating, and then CT and PET scans on Wednesday to prove that Ryan’s medical team is Cancer’s Worst Nightmare.  We’ll meet with his Top Doc on Wednesday night to map out Ryan’s next four months.

In the mean time, I expect Ryan will be back at school every chance that he can this week.  With the exception of Monday morning and all day Wednesday, I know he’ll want to be at Marymount enjoying his friends and getting caught up on his schoolwork.  And when he comes home from school, he gets to hang out with Blaise!

Ryan, Me and Blaise at Dan and Kait's Wedding, July 2015

Even better, my brother Dan and his wife Kait arrive in Paris on Saturday morning.  They’ll spend a long Easter weekend with us, so our fingers are crossed for warm, sunny weather and short lines for the Eiffel Tower.  OK, maybe not, but it will be great to see them anyway!

I want to send more shout-outs to our many friends here in Paris and at home in America who do so much to help every day.  The Marymount Moms have organized a Meal Train, and believe me on this one, when we arrive home after a long day at the hospital, or when Ryan has been down and out with chemo side effects, and we get a home-cooked meal delivered to our door by our humble and generous friends, it can be a lifesaver.  So thank you.

This week’s Special Delivery Kudos go to the Drozd Family in America, who sent sketching supplies and several boxes of TastyKakes.  Ryan really digs the art kit, thanks… but you nailed it with the Krimpets, Drozdes!

Krimpets? Yes, Please.

Goodbye Heparin, Goodbye Fashion Week (Don’t Let the Door Hit You in the Booty)

Ryan finished a Big Week of chemotherapy last Friday, followed by a dose of The Vinc this past Monday afternoon, and is gobbling down his home meds in the comfort of his Malakoff Man Cave until this Monday, when he goes back to Institut Curie for another Big Day chemo cocktail.  Sound confusing?  I can’t put together a logical sentence these days, thanks to the beautiful (le cough) French language.  Réfléchi pronoms avec negative passé composé?  My head hurts.

For those who want to understand Ryan’s chemo regimen better, here’s the drip schedule:

Week 1 Big Week

Monday through Friday - 5 days of IV drip at Institut Curie, lasting anywhere from 4 - 7 hours per drip

(Monday is a Big Day, 7 hours)

Week 2

Monday only - Injection of Vincristine aka The Vinc, total hospital time under 3 hours

Week 3

Monday only - Big Day, 7 hours

Week 4

Rest

Ryan will have 6 consecutive cycles of chemotherapy.  Each cycle also includes daily steroids and antibiotics, which are self administered pills.  His blood is tested every Monday and Thursday.

He will have another PET scan and CT scan at the end of this cycle (He’s now in Cycle 2) to evaluate the efficacy of the regimen.  We expect these results to be on fleek, and he’ll continue the regimen for another 4 months.  Then the tests will be given again.  We expect Ryan will be in remission at the end of these 6 months.  If he isn’t in remission yet, radiation therapy follows.  That’s a long time from now, and since we’re expecting only the best outcome, this is the last time I’ll spell that out, so bookmark it or whatever.  We’re moving on.

Here’s the really awesome news.  Ryan had an ultrasound last Tuesday that confirmed the blood clot near his catheter is now gone!  That means he no longer stabs himself with Heparin every day, and the black-n-blue marks on his thighs are fast disappearing.

Thank you, friends, for your emails and text messages.  Everyone is wondering how Ryan feels.  Well, during our medical consultation on Monday morning, I actually heard myself ask Ryan’s oncology team if they were giving him placebos.  Aside from intermittent joint pain, occasional acid reflux, and bothersome stomach cramps, he’s laughing in the face of side effects.  We’re fortunate to have doctors who know exactly how to manage Ryan’s pain, and while that means he takes a whole buncha pills, it also means he feels generally awesome.

Having said that, I don’t want to minimize it.  When Ryan does experience pain, it’s excruciating.  The worst time for Ryan is immediately after he wakes up in the morning, when he feels like he was hit by a train while sleeping.  As a result, he missed school two days this week.  On the flip side, he hung out with his buddy Ethan on Sunday afternoon, went to school on Monday before chemo (He was so happy to see his friends!), and is responsibly keeping up with his homework and projects.

One thing Ryan loves is interactive gaming.  Not only is it a distraction, but it also allows him to stay in contact with his classmates, even when he can’t see them every day.  He is able to talk live (while gaming) with his buds in Paris, the USA, and all around the world - current, old, and new friends included and simultaneously.  Currently, his favorite games are Agario (online) and FIFA 16 for the Xbox One.

Friday is my last morning of French classes for at least a few months, and we’re happily awaiting the arrival of Blaise, Uncle Dan, and Aunt Kait for Easter Break.  Hopefully, all of this will correspond with nicer weather in Paris (Let’s admit it, rain is depressing).  Ryan is really looking forward to seeing his two favorite fishing partners.  Maybe, with Uncle Dan’s help, we will finally catch something in La Seine!

Again, I want to give major shout-outs to our many friends - here in Paris and afar in the USA - who are supporting Ryan in extraordinary ways.  Ryan’s favorite surprise last week was a package from America containing an official Little League World Series baseball autographed by every kid on the Central Pennsylvania Championship Team.  That was super cool and unexpected!  Thank you to my Sorority Little Sister.  I'm awfully glad you became a teacher ;)  Our Paris friends continue to help us with meals and transportation, and we feel the love coming from every corner of the earth… Merci Beaucoup!

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!