Day 8, 9, 10 & 11... On our way to London & at Royal Holloway College

We spent yesterday exploring Santiago.  We began our day later than usual & headed to the Cathedral around 10:30 to catch the Pilgrim´s mass at noon.  Thankfully we arrived so early because it was standing room only by about 11:30.  The mass was well worth the wait and definitely delivered beyond my expectations.  They did the incense thing during the mass which is typically done just on Sundays.  Way back they started doing this because all the pilgrims smelled so terrible upon arriving at the Cathedral after finishing their pilgrimage.  Today it is just a part of their services.  It was truly one of the coolest things I've seen on the trip thus far.  I took a video of it, so if you see me in person, ask to see my phone. 

We arrived at Royal Holloway in Egham around 2p on Friday.  After a little settling in, I finally heard Ben's voice & saw Kevin & the boys.  I didn't realize how much I missed them.  It has been so great to finally be under one roof to complete this vacation. 



Everyday here is filled with one major attraction & some soccer related activity.  Saturday started with a training session (which both Josh & Zach attended) and finished with a trip to Fulham stadium where we saw Fulham lose 1-2 to Parma.  The boys had such a great time watching the big boys of London Futball take to the field.  Sunday we went to downtown London to take a tour of the Arsenal stadium.  It would be like taking a tour of Great American Ballpark or Paul Brown.  Their stadium is really incredible.  The roof structure is unlike anything I've seen (large circular structure that leans inward toward the field with nothing really holding it up).  Really amazing...

Today we went to Windsor Castle, one of the many homes of the Queen of England.  This castle is absolutely massive with artwork, chandeliers, weapons adorning every wall and ceiling.  If it weren't for the short attention span of our little 5 year old angel, we would have been able to learn a ton about the history behind it all.  I would have loved to have a whole day in Windsor.  It was a very quaint bustling town with many shops and restaurants.  We had to call it short though because our boys have their first soccer game tonight in about an hour.  The competition has come from South Africa, some town right by Saudi Arabia, NY in the US and cities surrounding London (just to name a few).  We'll see how these little American boys compete with diverse talent like this...!  I'll keep you posted...

Day 7...Officially a Pilgrim

What a day.  The mornings here start early & today was no different.  We were on foot & in route by about 7:40.  It didn´t take long before the rain came & our ponchos made their first appearance.  It actually made for an easy day of walking.  The fog, drizzle and cool temperatures were not a bad way to end this week.  It was very nice when the sun came out upon our arrival into Santiago though. 

While walking we ran into our friends from the Coswalds, 2 ladies from North Carolina and we shared a table with a couple from Italy at Café Calle.  Once in Santiago, we saw our friends from Victor & Sherry from Washington, Vicki & Peter from Australia, the Coswalds couple and the Pena family from London (they are the family who had been reading my cards).  In a town where there are thousands of tourists roaming, shopping, eating, praying & just hanging around...we managed to see many of the familiar faces we met over our walking days.  Something about that really was the icing on the cake for me.

Also, outside of the Cathedral (which is INCREDIBLE), there is a man-made shrine filled with flowers, candles, notes and other ¨stuff¨ that is meaningful to people.  I placed 2 of my prayer cards there.  It was inside of the Cathedral where I found the Pena family from London again.  They had written a note and placed it on that man-made shrine.  When they looked at a couple of the other notes around where they placed their note, they saw one of the two cards I placed there too.  I don´t know if I´m just feeling really sentimental right now or if the Camino really does have a unique way of bringing people together.  Whatever it is...I´m hooked.

On the first day of our walking, Sue from New Hampshire said something that I cannot get out of my head.  She said this was a ¨walk of gratitude¨ for her.  I didn´t realize it before I got here but now it´s very clear to me.  This was my walk of gratitude.  My thankfulness for Kevin, my amazing sons, my friends and my family.  I´ve always know how lucky I am but walking the Camino has really made me have a renewed sense of gratitude for all of them.

I will keep blogging as we end our travels in Spain and begin the second half in London.  Hopefully we will have a working computer where we can upload pictures.  Thanks to everyone who has been following my rambling...your ¨likes¨ on Facebook, little comments and notes have really meant a lot to me.  I can´t wait to share the next part of this adventure with you.  Who knows what will happen when the McClorey crew takes to the streets of London...! 

Day 6...The Road to A´Rua

Just a little more on Day 5...we ended up eating dinner with 3 younger people from London.  Hermano (32 year old cardiac doctor), Nadia (33 year old hedge fund manager) and Faye (38 year old owner of The Chelsea Day Spas) kept us laughing & entertained with stories of their lives living in London & their tales of the Camino.  So fun...!

Sorry to be so late with day 6.  We have had trouble connecting to the internet in our hotels.  I thought having Mary on this trip would have meant a constant source to staying connected.  Little did I know :)  We still don´t have Wifi on her computer at this point.  I´ve resorted to using the hotel´s computer, which will not allow me to upload pictures & has a different keyboard with spell check operating in Spanish.  Please give me a little slack if there are some typos.

Day 6 was probably the easiest day we had.  The weather was absolutely beautiful and the elevation was pretty flat.  We finished in A´Rua in the afternoon & had dinner with the couple from Washington DC and another couple from the Coswalds outside of London.  We ate at a restaurant that served typical Spanish fare...which has been a huge challenge for me & Mary.  If you do not like octopus, french fries, flan and bread, you will starve in northern Spain.  We did have what they call a Tortilla on the trail which is great.  It´s an egg, potato & cheese pie (kind of like a potato omlette with no crust). 

We also met lots of other people that day too.  We met up with Hermano & Faye while walking.  We ran into Diane from New Zealand again.  Every time she sees us she says ¨Hello Aunt Mary¨, which I find to be pretty amusing.  I also met this amazing family from London.  I was taking a picture one of my prayer cards on a mile marker when they came up behind me & were trying to read it over my shoulder.  I told them they could read it & tried to hand it to them.  They proceeded to tell me that they had been reading my cards since Sarria, Spain.  I told them about the letter I wrote and what I had been doing & we just really connected.  I told them that I was headed to London for Josh´s soccer tournament at Royal Holloway College too.  Stephanie (one of two daughters) then tells me that´s where she attended University.  I couldn´t believe it.  Truly...what are the chances that a mom, dad & 2 daughters from London follow my prayer cards & we find each other during a 111km walk.  Just incredible to me...

 Day 5  We've made it to Azura, Spain

 

Today was a great walking day.  The sun hid behind clouds which made it cool and comfortable for most of the day.  We traveled through many little hamlets and met this nice cow along the way.  The animals here are present in sight and smell at almost every turn.  As I type this, we can hear one loud cow mooing outside our window.  Since our room doesn't have AC, I'm hoping she sleeps when we sleep tonight. 

I bought a walking stick before we began in Sarria.  I decided to leave it with one of my friend's prayer cards along the path today.  When I began this my backpack was filled with all the "stuff" I thought would be useful or needed.  What I've come to learn is that you need very little out here.  You need a guidebook (if you like knowing what you're looking at & the mileage you're covering), money, sunblock, music, chapstick, candy, water, a camera, your passport, a pen, sunglass & a hat, a poncho (which thankfully hasn't been needed yet)...and that's about it.  I highly recommend having your luggage transported from city to city.  Not carrying the weight of "everything" else has really been wonderful.

When we arrived in Azura, we checked in to our hotel & I quickly headed back out to explore a little.  I didn't make it a block before I heard..."hey...Cincinnati!".  I turned to find Peter & Vicki from Austrailia.  I sat with them for about an hour and talked about our travels, our kids, where we've come from and why we are here.  It's funny how similar we all are even when we live on opposite sides of the globe.  You think you really know this & understand it, but it took me taking this trip to actually live & breathe it. 

 

Off to A'Rua tomorrow...

 

Ps.  Cannot tell you how much I miss ALL of my boys right now!

 

 Day 5...Our journey to Palas de Rei

I thought long and hard about what I wanted to write about from our LONG, HOT walk today.  I could write about the hot beating down sun & how it felt like heaven in the shade.  I could write about the long stretches of paths that intertwined with the road and small hamlets and the array of aromas that fill the air.  I could also write about how this was another day that I hadn't prepared for mentally & felt tested physically at points.  But, what I want to write most about are a couple "things" that happened along the way.

First, both Mary & I turned to our music about half way into the day.  I don't know if we ran out of things to say or if we just needed a new distraction to make the miles a little shorter.  She tuned into Neil Young & the soundtrack from O' Brother Where Art Thou...and I cranked up Emblem Three (thanks Mackenzie!), Taylor Swift and some other songs I found on iTunes before I left.  At one point, I think Mary & I were both singing out loud to our songs...we had definitely found our happy place.

Second...today was a great day for meeting people.  We met a lady name Diane from New Zealand who has been on the Camino since May, a couple from Holland who have been walking since March, a 20 year old boy from northwestern France & a group of ladies my age (with kids) from Leon Spain.  These people, while we only talked to them for a brief amount of time, are really adding dimension and entertainment to each day. 

Lastly...today was a day where I continued to be surprised by the endurance, sense of humor and passion for life that my Aunt Mary has.  She ate that walk up today.  It was hot.  It was long.  It was out of her comfort zone...and she handled it like a champ.  I'm so lucky to be having this kind of time with her to connect, learn & grow with her.  She's truly a gift to me...& this day made me appreciate her even more.

ps.  we have 18 miles tomorrow...who knows what I'll have to say about her after that!

 

 (Day 3 was spent in transit from Santiago to Sarria.  It was a 2 hour taxi ride, which felt like FOREVER.  It was really daunting driving all that distance, knowing we had to walk the entire way back!)

Day 4

We began our day early in Sarria and ended around 4p in Portomarin.  It was a great day but proved to be much more challenging than I originally thought.  The terrain was hilly and filled with all sorts of walking surfaces.  From gravel to stones, to paved roads & dirt...we covered it all (trying to avoid fresh cow patties wherever possible).  We met a teacher from New Hampshire, a banker from Maine & a couple from Washington DC.  Most people speak Spanish which is making me regret now learning a little before we came here.

As you can see from my photos, we passed many shrines today.  I began leaving my treasured prayer cards along the way too.  These have been a spiritual gift to me & have started to add so much to my experience here.  Thanks to all who contributed...I'm so glad I did this.

We ended our journey in this little town called Portomarin.  It's filled with "pilgrims" of the Camino.  We are at this great hotel and met people from Australia & New Zealand at dinner.  Tomorrow is a 15 mile day that has similar terrain as today, only steeper!  Off to bed for a much earn rest...

  

Day Two...

Quick post for today b/c I'm not sure if we will have Internet at our hotel tonight in Santiago.  We jumped on a double decker bus this morning & got to see EVERYTHING in Cambridge.  The pictures here are when we climbed the stairs at St. Mary's Chapel.  The view was incredible.  The top picture is of Kings College.  That little doorway leads to the narrow circular (tiny) staircase we climbed to see everything.  Just beautiful! 

We are off to the airport now to board another plane to take us to Santiago.  Our adventure in Spain is just about to begin...!  Wish us luck!

Day One: 

And so our journey began.  We arrived at CVG to find our delayed flight even more delayed.  They rerouted us through Houston which meant we were to arrive in Cambridge a couple hours later than expected.  After 12 hours of flying, 2 trains, a ride on the Tube & a short distance with a friendly taxi cab driver, we finally were off & walking in the UK. 

 

In a nutshell, Cambridge is the most historic, beautiful college town I've ever seen.  Buildings from the 1400, 1500 & 1600s line the cobblestone streets and stunning gardens.  We went punting on the Cam river with a nice young chap named Justin.  He showed us churches, colleges, cows owned by scholars, the library where Shakespeare wrote and told of us the history behind it all.  We then decided to just wander around.  We went into churches we probably weren't supposed to be in, almost got run over by all of the bikers and put in a prayer request at the Chapel at Queen's College.  All of that in just an afternoon.  Can't wait to see what tomorrow brings...

 



what's next

We saw Dr. Palermo today.  He's ordering an MRI and some other tests to determine the status of Josh's inflammation.  At this point no one is really sure if his meds are working or not.  We will have labs back in about a week on 2 tests they started today.  I'm scheduling his MRI appointment for sometime in the next 2 weeks.  We will know more then & keep everyone posted.  Keep your fingers crossed...

hug your babies

It's been awhile since I last posted on this blog.  The good news is that there hasn't been much to report.  Josh has had 3 treatments of Remicaid without any side effects, without any problems.  Thinking back to October & rereading my posts from then, I forgot how stressful it was to just make the decision to even administer this medication.  Now, we are at a place where we're not only comfortable with it, but also hoping it's going to be a long term solution for his disease.  Funny how time can really change and reposition your thoughts, feelings and stresses. 

Today, we are headed to Josh's doc for a 4 week follow-up.  They are monitoring his symptoms, lifestyle and growth patterns.  Because he's getting to the age of puberty (help us!), it's extremely important for us to make sure his inflammation and/or medications aren't stunting his growth.  So far, he's maintaining a fighting weight of a whole 87 pounds and no real improvements in height.  We're hoping this visit today will show some gains in both of these areas. 

Many people are asking "how do YOU think he's doing".  The short answer to this question is...we really don't know.  The good news is that he's not in any pain, he's not bleeding/cramping/missing school/having hospital visits/etc. and he's still off steroids.  The bad news is that since being off steroids, he's showing signs of being back where he was in September.  Not as bad, but could be heading in that direction.  Based on this, it's likely he will have to have an MRI to evaluate his inflammation before the end of the year.  This will probably be confirmed today.

So, that's where we are at right now.  It's been an emotional 6 months for our family.  We continue to be hopeful and optimistic that we are on the right path with all of Josh's medical and emotional needs.  Our friends and family have been, and continue to be, the major reason for this.  Also, when you turn on the TV right now & see all the horror and agony of what just happened in Connecticut, it really keeps things in perspective for us.  We are SO, SO blessed with the gift of our 3 boys.  Josh's journey with ulcerative colitis is never going to make or break him or us.  It's just one piece of his beautiful little life. 

xo

home

We got to the hospital today at 1 and started his treatment at 3:40.  They had given him some Benadryl prior to the infusion to try to control any kind of allergic reaction.  It made him really, really tired.  He was actually out cold for most of the procedure.  The great news is he didn't have any bad reactions.  No fever, blood pressure, rash, lung or pain problems.  He was able to have the entire infusion in just under 3 hours.  He had to be monitored for an hour afterwards too.  After they took his IV out (which he posted a picture of this on Instagram), he got his shoes on, went to the bathroom & asked if we could go to Five Guys for dinner.  Needless to say, we got the car & headed to Hyde Park so he could dive into a bacon cheeseburger. 

So, here's where we are at right now.  He has to have another treatment at 4p on the 25th and a third one the day after Thanksgiving.  At some point they are going to start to taper him off of his steroids and do an MRI to evaluate his inflammation.  All of this, while stressful & scary, isn't on my radar at this very moment.  Having him home in his own bed, knowing he's headed to school tomorrow & to a soccer field on Saturday is giving me a huge sense of peace & relief. 

Even though things at this very moment are good,  please try to continue to keep our "biggest-little man" in your prayers.  We'll keep you posted over the next couple weeks with his progress. 

xo

In progress

We are at Children's right now.  They didn't start giving him the Remicaid until 3:40.  Looks like we are going to be here for awhile.  So far he's responding fine.  He's actually sleeping right now.  I think this stinking Reds game has kept him energized.  Keep the good energy & prayers coming....and send some to our Redlegs too!

tomorrow

Talk about a busy week over here.  Monday we got confirmation that our insurance is going to cover Josh's Remicaid treatments.  Yeah for us!  Thankfully, there won't be any for sale signs at 405 Yale in the near future.  Monday was also Zach's 11th birthday.  I think he had a good day having lunch with his friends, Holtman donuts for a school treat, soccer practice & some neighbors/friends over for a firepit & cake.  Sounds like a good day to me at least...

Tuesday was a good day too.  Nana got here which made everyone happy.  Zach & Kevin went to the Reds game.  We also got scheduled for Josh's first treatment (tomorrow at 1p).  It's seems so strange to think of getting this treatment started as a good thing.  It just feels like a little forward movement with getting Josh better.  And that...feels like we are moving in the right direction.

So everything is lined up & ready for tomorrow.  We've talked to Josh's doctors, teachers, coach, friends & family.  With all of this positive energy & prayers behind him, I know he is going to be OK.  Sure, this medicine may or may not kick his little behind tomorrow.  The not knowing is really the hard part right now.  By 5p, we should have some piece of mind as to how this is immediately going affect him.  The doctor said in a couple days we should see some improvement too.  The best case scenario at this point is for him to take this medicine, not have bad side effects, have the medicine work and continue living his normal 12 year old life. 

I'm going to post again tomorrow to let everyone know how it goes with his treatment.  I also want to mention that Kevin & I are SO humbled and thankful for every hug, note, call, email, visit, kind word, prayer and sign of support for our family. We feel totally and completely loved.  While this is an awful, awful thing to go through, all of this support has brought us a renewed faith in what our family really means to us & the people around us. 

One last thing.  Everyone keeps asking "What can I do".  The only answer I have right now is to take a minute tomorrow morning to just pause & say a little prayer for Josh.  I believe that modern medicine isn't going to be the only thing that gets him through all of this.  Our faith & the faith of all of our family & friends will aid in his healing too. 

Until tomorrow...

the first post

Just got the house to myself.  Typically, having Kevin take all three boys out to a practice would give me a huge smile on my face.  The house to myself....so quiet.  Instead of laundry, dinner & all the other things that are staring at me, I thought I'd start this blog dedicated to filling everyone in on Josh (& other miscellaneous things).   Who would have thought that taking to my keyboard would be the easiest way for me to fill people in & help me cope a little...


I first need to bring everyone up to speed on how we got to October 2, 2012 with our first baby having a diagnosis of ulcerative colitis (or UC as many call it).  Last fall Josh was having some issues where we spent some time at our pediatrician's office & ultimately one trip to the GI (gastrointestinal) department at Cincinnati Children's Hospital.  All of the doctors thought he has a small fissure, or tear, in the wall of his rectum.  They sent us away with the thought that this wasn't a big deal & it would heal itself.  That was November of 2011.  In late January he began to have more issues which took us back to our pediatrician who, through lab work, found a common bacterial virus which we treated with your ordinary antibiotic.  After Spring Break, the symptoms got worse.  We ended up back at Children's with Dr. Palermo.  They did more lab work that discovered he was positive for C-diff.  They put him on this crazy antibiotic (side effects could include black hair growing on your tongue) which seemed to help initially.  It was then, in June, when Josh had to have his 1st colonoscopy & upper endoscopy.  The upper endoscopy came back normal, which indicates he most likely doesn't have Crohn's Disease.  The colonoscopy indicated a lot of swelling in his colon (large intestine) which gave him the diagnosis of Ulcerative Colitis.

Then came the medications.  He began taking steroids which were followed by 2 UC medicines that didn't work.  The third medicine seemed to work some & we were able to taper off of steroids back in late August.  In early September we went back in for a check with Dr. Palermo.  He ran more lab work which indicated that there was a lot of inflammation still in Josh's colon.  He recommended we do another colonscopy and another colleague of his concurred.  After having 2 sets of opinions and being well aware of how Josh is doing on a daily basis, we decided to proceed with the 2nd colonoscopy.  This was done this past Monday, October 1st. 

The official results of the biopsies aren't in yet.  What we did find out is that Josh's disease is a lot more extensive than we were hoping for.  It spans the entire length of his colon.  The inflammation is in the moderately severe to severe range.  To put it simply, all of the medicines he had been taking didn't work.  Total & complete bummer.

So, here we are now with a new plan.  Both doctors have stated our next step is to put him on another medicine called Remicaid.  It is a serious, serious drug.  It is administered through an IV over a 4 hour period of time.  He has to have one treatment this week (or as soon as Anthem gives us the thumbs up), another treatment in 2 weeks and a 3rd in 6 weeks.  If it works he will continue these treatments every 8 weeks indefinitely, or until it no longer works for him.  If it doesn't work, they will double the dose & follow the same timeline.  If that doesn't work, they will decrease the amount of time between doses.  And, heaven forbid, that doesn't work...we will hope there is another medicine to try before we have to turn to surgery to remove his colon.

That's where we are in a nutshell.  You can google Remicade & surgery for removing a colon...but I wouldn't recommend it.  It will make you sad & it will break your heart.  Trust me on this one.  What I would recommend is praying for Josh.  If you saw him right now, you'd never even know he's sick.  Seriously...he's at soccer practice as I type.  He's got such an amazing spirit & he's unbelievably strong, in ways I could never have predicted.  He's got the best group of friends & a support system bar none. He truly is an amazing young man & a gift to me & Kevin. 

Once I know more & he undergoes these rounds of medicine, I'll post again.  I'll try to keep all of you updated as much as I can.  I can't tell you how much your love, friendship & support for me & my family has touched our hearts.  Keep it coming...our little man is going to need it over the next couple months. 
xo