Tuesday, July 26, 2016

Good News from Paris!

Well, I guess it’s time to make it official.  Ryan is in remission!

His doctor told us the results of his PET scan last Thursday.  Essentially, the Hodgkins cells are continuing to shrink, there is no new activity, AND he will not need radiation.  Of course, he will require many tests over the next few months (and years), and he does need to have his catheter surgically removed, BUT… we are thrilled.

THANK YOU SO MUCH to everyone who supported Ryan and our family over the past 6 months.  We are so grateful to have incredible friends, who cheered us up and helped us out and prayed so faithfully.  You all made this time easier for us!

Thanks especially to THIS awesome person! xo

Please continue to pray and offer your positive energy to children around the globe who are fighting cancer.  It’s such a yucky experience, but there are good doctors and nurses out there who know how to save lives and do it every day.  Thank GOD for them!

I’ll check in here occasionally and let you know how Ryan is doing, but for now, I’m happy to say… Au revoir!

Ryan in the Luxembourg Gardens minutes after getting such great news from his doctor at Institut Curie nearby!

We're lucky we can just go to Angelina whenever we want, especially after such good news!

Monday, July 11, 2016

What Happens After Chemotherapy Ends?

It’s been such a huge part of our lives for the past six months.  Now that chemo is over, we’re kinda like… hm.

Last Tuesday was Ryan’s final IV drip, and tomorrow is his last day of taking steroids.  So officially, as of midnight tomorrow, he is no longer medicated.  That means, either those nasty little Hodge cells have vacated the premises, or maybe some are still hanging around because they haven’t received the eviction notice.  Either way, our rain forest chemical weapons supply has been depleted.

The weekend before his last drip, Steve and I took Ryan and Blaise to Granville in Normandy to watch the opening leg of the Tour de France.  Getting out of Paris and being next to the ocean was so incredible… good for the soul, and the food ain’t bad either!

When Ryan and I returned to the hospital last Tuesday for his final IV drip, it was a strangely bittersweet time.  Look, we’ll be back and forth to Institut Curie PLENTY more times over the next few weeks, BUT.. to know this was his last day of chemotherapy… well, it’s an introspective experience.  I’m not sure it can be clearly expressed to anyone who hasn't lived cancer first hand, so let’s just say it was a victorious day!

Before we left the hospital, Ryan personally thanked his extraordinary team of pediatric oncology nurses, and from me - À tous les incroyables personnes sur le cinquième étage, vous êtes des héros… Benjamin and Sidonie… life savers.

What do you do after you walk out of the hospital on your last day of chemotherapy?  Act like a normal person, sit in a café on rue Mouffetard, devour a plate of Confit de Canard with french fries, and then ride the Metro home.  Because, you can.

After Ryan’s last IV drip, he did suffer the usual side effects for about 5 days - back, bone, joint and muscle pain, as well as excruciating stomach cramps.  This past weekend, he started to feel somewhat normal again, although the steroids can cause discomfort too, which will stick around for the next few days.  On Friday, Blaise and I dragged Ryan out for some fishing, at which time Ryan randomly discovered the joy of Pokémon GO, which is apparently not available in France.  Mysteriously, Blaise and Ryan have been making many new friends since then, who have also been lured out of their apartments to throw pokéballs at imaginary objects throughout Paris.  Somehow this seems illegal, and they missed the first 90 minutes of last night’s EUFA Euro 2016 championship soccer game (featuring FRANCE!) to spelunk through the woods in the Bois de Boulogne.  Should I be worried?


So, tomorrow Blaise flies home to the USA, which is a total bummer.  He is excited to go to the beach, and to spend time with his friends.  But he’s also sad to leave his brother’s side, as he has been a ROCK for Ryan during the past month.  We’ll be sad to say goodbye, but we know we’ll see Blaise again very soon.  And the NEXT time we see him, Ryan’s going to be, like, golden.

Ryan’s PET scan is scheduled for July 20 (nine days from now), and we have a consultation with his lead doc on July 21.  Please continue to keep him in your prayers over the next couple of weeks, and send lots of positive vibes in his direction.  Also, THANK YOU for supporting him over these past 6 months.  It’s hard to believe we are almost - finally! - on the other side of cancer.

Ryan's art teacher at Institut Curie handed me this before we left the hospital on his last day of chemotherapy...

Tuesday, June 28, 2016

8th Grade Graduation, Summer in Paris, and LAST Round of Chemo!

In a few minutes, Ryan and I are headed to Institut Curie to start his first day of his sixth and final round of chemotherapy.  Wow.  I don’t even know what to say about that.

So I’ll start with a great big CONGRATULATIONS!!!  To Ryan, and his entire 8th Grade class at Marymount, you have been the most amazing group of young adults - mature, caring and supportive in every way.  If it weren’t for the dedication of his friends, Ryan couldn’t have accomplished all that he did in these past 6 months.  I am so proud of Ryan and honored to be his mom.  Only he and I will ever truly know the amount of work that went into his academics between January and now - studying independently and often feeling isolated from the social interactions of 8th grade, Ryan never gave up, never became discouraged, and did his very best!  During the graduation ceremony, Ryan was honored with a medal for “Courage.”  I can’t think of a more appropriate word to describe his accomplishments in 2016.

Because every 8th Grade Graduate should dance the night away and take selfies at The Eiffel on the Paris Party Bus... 

Ryan’s big brother, Blaise is here in Paris for the next few weeks, and we’ve been enjoying lots of time together.  This weekend, as long as Ryan feels up to it, we’ll try to catch some of the Tour de France in Normandy!

Here’s a very special Shout Out to our favorite pug, Dylan, who sent an awesome package to Ryan this month, all the way from Pennsylvania (…and an even bigger Shout-Out to my college friend Sue and her lovely daughters for taking Dylan to the post office so that he could mail that package to France).  Thank you so much to the incredible Bullick family!

Thanks Dylan!

To all of our friends who continue to support us, who haven’t forgotten that this battle isn’t over, who have tirelessly called, texted, emailed, and sent cards - we love you and we appreciate you more than we can say.  To my best friend Gina, who knows I don’t always have the time (or the keyboard) to write but sends me encouraging and funny emails despite my non-replies - We were BLESSED the day we met in circa 1978!  Thank you for always being there, Lady.

Please keep Ryan in your prayers this month.  The next two weeks of chemo will bring back the pain and cramps and all the other yucky side effects that no child wants to experience.  In a few weeks, he will have his PET and CT scans to show the effects of his treatments.  This will be a nerve-racking time for us, and it will be nice to know that everyone has Ryan in their thoughts as we await the results.  In the mean time, we hope all of our friends and family are enjoying the start to this glorious summer!  School’s out - YAY!

Monday, May 30, 2016

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?

Symptoms Icon
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.

Monday, May 23, 2016

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!