Happy Memorial Day and Happy First Day of Cycle #5

Happy Memorial Day to all of our American friends!  Here in France, we celebrated the holiday on Saturday when we attended a beautiful service at the Lafayette Escadrille Memorial.  The Lafayette Escadrille was part of the French Air Force during World War I, comprised mostly of American volunteer fighter pilots.  The Memorial just outside of Paris honors these pilots and serves as the final resting place for those who died in combat.

The Lafayette Escadrille Memorial in France

"Fly Boys"

Last week, Ryan felt great!  It was the fourth week of his fourth chemotherapy cycle, which serves as a bit of a “rest” period.  By Friday, he was well enough to accompany me on a Fat Tire Bike Tour through the Gardens of Versailles (!!) where we pedaled many miles and ate a picnic lunch during a glorious sunshiny afternoon.  If you’ve visited Paris, you know glorious sunshiny days are a gift, so we felt quite lucky.  It was an amazing adventure!

Ryan at Versailles, and yes, that's a baguette - So French!

Fat Tire Bike Tour Versailles

Today, Ryan started his fifth cycle of chemo.  This includes 3 days of IV drips this week, and 1 day next week, as well as 15 days of steroids.  On the last day of this cycle, he will graduate 8th grade!  And then… just one more cycle to go!

Thank you for keeping Ryan in your thoughts and prayers during this time, which is starting to feel quite tedious and frustrating.  He maintains a positive attitude, helped by the company of his good friends here in Paris and by the cards and notes sent from home.  We are fortunate to have so many people pulling for Ryan and helping us in kind and caring ways every day!

The Eiffel - because it makes us smile :)

In the mean time, we ask that you pray for all children who are fighting cancer, with a special shout-out to those facing Hodgkins.  Like many diseases, Hodgkins can be tricky to diagnose, but it’s very treatable and very curable… We are looking forward to the day when Ryan can say he destroyed cancer, and we pray the same for all the awesome kids we’ve met along the way!

*** From Healthline.com ***

What Is Hodgkin’s Disease?

Hodgkin’s disease (HD) is a type of lymphoma, which is a blood cancer that starts in the lymphatic system. The lymphatic system helps the immune system get rid of waste and fight infections. HD is also called Hodgkin disease, Hodgkin lymphoma, and Hodgkin’s lymphoma.

HD originates in white blood cells that help protect you from germs and infections. These white blood cells are called lymphocytes. In people with HD, these cells grow abnormally and spread beyond the lymphatic system. As the disease progresses, it makes it more difficult for your body to fight infections.

HD can be either classic Hodgkin’s disease or nodular lymphocyte-predominant Hodgkin’s disease (NLPHD). The type of HD is based on the types of cells involved in your condition and their behavior.

The main cause of HD isn’t known. The disease has been linked to cell mutations, or changes, as well as to the Epstein-Barr virus (EBV), which causes mononucleosis. HD can occur at any age, but it most commonly affects people between ages 15 and 40 and people over age 55.

What Are the Symptoms of Hodgkin’s Disease?

The most common symptom of HD is swelling of the lymph nodes, which causes a lump to form under the skin. This lump usually isn’t painful. It may form in one or more of the following areas:

• on the side of the neck
• in the armpit
• around the groin

Other symptoms of HD include:

• night sweats
• itchy skin
• fever
• fatigue
• unintended weight loss
• persistent cough
• pain in the lymph nodes after consuming alcohol
• enlarged spleen

Call your doctor right away if you have any of these symptoms. They can be signs of other conditions, and it’s important to get an accurate diagnosis.

http://www.healthline.com/health/hodgkins-lymphoma#Overview1

We Didn't Come to Paris to Lay Up

It’s hard to believe Ryan is already winding down his 4th cycle of chemotherapy.  We have an appointment with his doctor this Wednesday to review the 5th cycle, which starts next Monday.  This week is looking pretty awesome, since Ryan has no IV drips and has finally recovered from the dreadful side effects experienced during this cycle.

What we found the most surprising about his new protocol was the lasting effects of the medications, even though he received far fewer IV drips this past month.  We were quite taken aback last week when Ryan missed all but one day of school on account of bone, joint, and muscle pain, as well as excruciating stomach cramps.  We noticed immediately when his white blood cell count dropped.  During those 4 or 5 days, we decided it’d be just fine for Ryan to sit around the apartment relaxing, because yanno what?  We can all learn to just. slow. down.

Having said that, we did get away for our lovely long weekend in the Dordogne region of France, and by the grace of God, Ryan felt especially good during those few days.  We brought 2 of his classmates along with us.  It was a 6.5 hour car ride each direction, and all 3 boys were troopers, playing lots of old fashioned road trip games and supplying plenty of laughter.  We stayed in an amazing cottage donated by one of Steve’s work colleagues.  The best part about the cottage?  A heated pool and really good WiFi, ha!

Last week, Steve traveled home to the USA to celebrate Ryan’s step-sister, Hannah’s graduation from Fordham.  All of the kids met Steve in New York - Matthew, Steven, Patrick, Tom, and Blaise - where they enjoyed the festivities with relatives and friends.  They also celebrated Steven’s graduation from Clemson with a special family luncheon and a late-night Manhattan-style party. Congratulations to Hannah and Steven!

While he was in New York, Steve also took Blaise to visit both the U.S. Merchant Marine Academy and SUNY Maritime.  While I’m sad I missed those college visits, I know Blaise appreciated having Steve, Pat, Tom and Matthew along for their advice and expertise.

Here in Paris, Ryan and I were thrilled to host Gina and Mia for the weekend.  Gina is my cousin who moved to Germany 25 years ago, and Mia is her youngest daughter.  We’ve always been close and are lucky to see each other a few times every year.  Having them here in France was such a treat!  Unfortunately, Ryan’s side effects, including a low white blood cell count, left him in charge of guarding the apartment (in other words, playing video games and sneaking out to MacDoe’s with his friends), while Gina, Mia, and I toured Paris.  And even though we managed to see lots of awesome stuff - Disneyland (!!), the Mona Lisa, the Eiffel Tower, Notre Dame, Shakespeare and Co., the Arc de Triomphe, Sacre Coeur, the Tuileries Gardens, the giant Paris Ferris Wheel (!!) - we still managed to spend tons of time at home with Ryan, eating delicious meals Philly Cheesesteaks, telling funny stories, and playing Left-Right-Center well into the night!

Next Monday, Ryan starts his 5th cycle of chemotherapy.  For anybody who’s counting, that means he’s now two-thirds of the way finished with the &$%*#$^ IV drips.  We do have an appointment with a specialist this Thursday to discuss the radiation protocol that may - or may not - happen after Ryan finishes his chemo cycles.  Having the appointment and the discussion is a necessary evil, but there’s a decent chance that after Ryan finishes 6 cycles of chemotherapy, he will have kicked cancer to the curb, and that’ll be the end of that.  Please keep him in your thoughts and prayers, that this will be the outcome.  Au revoir, Hodgkins Lymphoma!

I know it doesn’t need to be said, but again, THANK YOU SO MUCH to our many, many friends and relatives, and loved ones, AND strangers (!!) who constantly show your love and support through cards, meals, rides, notes, phone calls, texts, gifts, and non-stop prayers and positive vibes.  We love you all for keeping Ryan in your thoughts so often, and for providing help to us when we need it.  ESPECIALLY to my girlfriends here in Paris who KEEP ME SANE, you know who you are.

This week’s Special Delivery Shout-Out goes to my long-time friend, Chris, who I met 18 years ago on an old-school AOL message board when I was preggers with Blaise.  Turned out she lived down the street and would become a loyal and trusted confidant.  Last week, Chris sent a package to Ryan full of goodies and cards from her community, and it totally lifted his spirits!  Although I won’t lie - his favorite thing in that package was the flavored, sugar-free chewing gum from America - ha!

Keep those cards coming, friends.  Just a simple note or letter from America always makes Ryan smile.  Have a great week!

New Beginnings: Cycle 4, COPDAC Chemo, and Springtime in Paris!

Finally, the weather broke in Paris, and the sun has emerged from its long winter slumber.  One of the best things about Institut Curie (other than the fact that they save people’s lives every single day) is the hospital’s location just a 2-minute walk from the Luxembourg Gardens.  Now that the trees are green and the flowers have bloomed, Ryan and I enjoy spending time in the Luxembourg Gardens whenever we catch a break.  Likewise, we also enjoy flâneur-ing along the Rue Mouffetard, where Ryan has ranked every crêperie from “Too Much Pancake” to “Too Much Nutella” to “Oh Hey That’s Not Bad.”  If you know Ryan, you know the latter rating is like saying, “This is amazing!”

When the sun finally comes out in Paris!

It’s been fun exploring Paris together under blue skies, but let’s not forget the reason we end up in the Latin Quarter so often.  On Monday, Ryan started his 4th cycle of chemotherapy.  Wow - it’s hard to believe he’s been at this for so long now.  To me, it feels like yesterday that we received his diagnosis.  To Ryan, of course, it feels like an eternity.

This 4th cycle also begins a new chemotherapy protocol.  He has moved onto COPDAC medications.  This was part of the original plan, although we had hoped to start COPDAC during Cycle 3.  The doctors were extra cautious about the activity still showing in Ryan’s chest and kept him on the more aggressive OEPA therapy during his 3rd cycle.  However, that’s behind him now, and these next 3 cycles should be a bit easier - fingers crossed!

Ryan’s COPDAC protocol looks like this:

Week One - BIG WEEK, 3 days - IV drips are Vincristine, Cyclophosphamide, Dacarbazine

Week Two - 1 day - IV drips are Vincristine and Cyclophosphamide

Weeks Three and Four - Rest

On the home medication front, Ryan continues to take Prednisone for the first 15 days of each cycle.  And he’s armed with lots of other pills and potions to combat nausea, muscle pain, bone and joint pain, infections, gastrointestinal discomfort and stomach cramps.  You know, standard chemo crap.

To Love It is To Hate It: The Vinc

He’s doing quite well, these days.  After his hospitalization a couple of weeks ago, Ryan got a break from IV drips that lasted almost 3 weeks, giving his body the opportunity to replenish its white blood cells and neutralize some of that poison we keep injecting into him.  The sunshine and longer days have helped to keep his spirits up, and some of our friends here in Paris have recently been “lending” us their dogs, which is a bigger help than you can imagine.

If all goes well during this round of chemo, we’re planning a short getaway to the Dordogne region of France (with the go-ahead from Ryan’s doctors).  One of Steve’s work colleagues has a lovely vacation cottage in the countryside, and we will spend a few days there with Ryan and two of his friends.  Please, keep Ryan in your prayers over the next few days and keep your fingers crossed that he stays healthy, so we can manage his side effects in such a way that he can still enjoy lots of time outdoors - laughing, smiling, and playing with his friends!

Ryan, Shannon, and Steve eating Sunday Lunch in the Marais, American-Style, Schwartz Paris

As for Next Steps, Ryan will have these 3 rounds of COPDAC, then another round of tests, and there is a CHANCE, friends, that he will be in complete remission when that is over.  Realistically, there’s also a small chance he’ll need a little more work under the hood, and we’ll cross that bridge when we come to it.  As always, we simply ask that you keep him in your thoughts and prayers.  Ryan really loves (LOVES!) to get snail mail from his friends and family in America, so if you can, that’s one small way in which you can offer him your support.  For those who’ve lost our Paris address, email me and I’ll happily remind you :)

Thanks again to EVERYONE who has helped, in petite ways and in énorme ways - for those who call and write and send gifts from home, for those providing meals, and for the fabulous ladies who occasionally drag me out for a tour or a cocktail, and to GOD for providing this lovely Parisian weather this week.  We can’t get through this without all of your support, and our incredible family, and our dedicated friends.  Thank you!

PS - May is Oncology Nursing Month.  If you know an Oncology Nurse, you know that person is extraordinary.  Thank you, to all of my friends who are Oncology Nurses.  Et merci à toutes les infirmières à l'Institut Curie qui aident Ryan, vous êtes incroyable!

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!!!!!! :)