Tagged: Patient Partner Program

Day After

Hi Brendan,

How are you today?  I bet you are a little wiped out after this busy weekend.  Thank you so much for being there for me yesterday.   You were at a perfect spot, Mile 25.  I was pretty wiped by that point.  When I stopped to see you, it re-energized me for the last mile.  I was just what I needed.  I glad that you were able to head over the marriott after the marathon.  It was nice that we got to hang out for bit.

Today my legs were pretty sore.   The only thing I dreaded more than going up stairs was going down stairs.  I was going to hop a few trains heading home tonight so I wouldn’t have to walk far, but then I though the walk might do me good.   So I walked my usual mile walk to South Station.  I wasn’t alone.  I noticed two other day-after runners have some trouble walking too.  We gave each other a sympathy wave as we passed.

Good luck with all your appointments this week and I’ll see you later this week at Kiku Yama for our celebration dinner.

-Patrick

Advertisements

Brendan’s Journal

Hi Buddy,

I just checked out your Caring Bridge site again, www.caringbridge.org/visit/brendanbarrie.  I haven’t been their in a while.  Even though I’ve been there many times, I have never noticed all the frogs :).  I like them!   I am going to forward the link to everyone that has been asking about you.  (There is a lot of them!)

Your grandmother told me she is doing the Neponset Valley Walk for Animals in Easton on May 15th.  That’s great!  I’ll have to ask her all about it this afternoon when I see her.

Don’t forget your orange bracelets today.  I’m sure we can get a few donations for you.  I know a bunch a people who want one.

-Patrick

Count Down to Boston

It was 128 days go I found out I would be part of the Dana-Farber Marathon Challenge team, and now there are only 10 days before the marathon!  Can you believe it!?!  The time flew by too fast.

 Next week will be such a great time to be in Boston.  There is definitely a buzz of excitement in the air.   Runners from all over the world will start to come to the city.  Along with friends and family, they will fill the hotels and restaurants,   walk with tourist maps in their hands trying to find Faneuil Hall and ask which train is best to take to get to Fenway Park.  The marathon expo and marathon number pickup will begin on Friday and last all weekend long.   On Sunday there will be pasta dinners happening everywhere, including our own Dana-Farber dinner at the Copley Marriott.

After work yesterday, I was able to go out for my first long in almost 3 weeks .  I ran from Bowdoin to just before Boston College and then took the marathon route back to Bowdoin.   It was great that I was able run that distance again, but I’m not going to lie to you, it was a tough run.  My legs are incredible sore today.    I’m glad I ran it yesterday because it helped me realize I need to rethink my strategy for the next week and the marathon.  I’ll let you know when I figure that one out :). 

I hope this week wasn’t been too rough on you.  Being back on chemo, plus all your other medication and having to go to multiple doctor appointments while trying to get back to school must have made you a little crazy.  I don’t know how you do it.  You have an incredible amount of endurance and strength that Ryan Hall would envy.   Take care and I’ll talk to you soon. 

-Patrick

Lions, Tigers and ….Giraffes?

Hey Partner,

 a

Well I’m very glad that the tiger didn’t make you his afternoon snack!   That must have been a bit unnerving.  After that I think I would have told them it’s time to go see the new anteater exhibit, enough with the man-eating animal.   It’s great you got to feed the giraffes.  Your grandmother told all about how much you liked giraffes after I wrote the My Morning Run entry back in January.   How cool was it to be standing next to a creature that tall?   

Are you still eating?  I know how tough it is for you.  Any time you want to head back to Kiku-Yama just let me know.  We’ll get you a pile of the shrimp I saw you digging into on Tuesday night.    I liked that dish too.   I think I’ll be getting next time we go.

I got out for my first run today since March 22.  It went ok.  Slow and steady.  But don’t worry, we will be doing the marathon.  I wouldn’t miss it.  Not even a hungry tiger will stop me.  (Actually it might make me run faster!)  We got 2 weeks; plenty of time. 

I need something really important from you, partner.  I need one of your orange Brendan’s Buddies bracelets.  I’m going to wear it during the marathon. 

I just looked at the clock.  It’s late, so you won’t see this tonight because hopefully you are sleeping.  I hope you are feeling a little better.  I know you got yet another busy day seeing doctors, so I’ll give you a call late in the afternoon to see how you made out.   

-Patrick

Feeling Good

Hi Patrick,
Hope your feeling better. I feel pretty good despite being back on Chemo again. I had no appetite for the first few days but now the steroids seem to be kicking in again!!YAY!! My mom was starting to get worried I wasn’t going to eat anymore and need to be back on my feeding tube, but so far I’m ok and just using it for all my meds again. Unfortunately my jaw pain is back.
I went to school Friday for an hour to see the chinese acrobats that came to perform at my school. They were really awesome and it was nice to see my friends again. I will be back in school tomorrow, but not on Tuesday. I have 3 different appointments on
Tuesday, so I will stay home that day.
Monday afternoon, Make A Wish is coming by to meet me and talk about my Make A Wish. I had been wanting to do a Mediterranean cruise, but after looking through some cruise brochures, I think I might want to do a Caribbean cruise instead. ( I REALLY want to go on The Oasis of the Seas, ship!!! They even have a zipline ON the ship!!!! It looks amazing!!!

Yesterday we went to the Franklin Park Zoo to have a private tour of the Zoo and to go and feed the Giraffes!! Giraffes are my favorite animals and have been since I was a baby. It was really awesome to be up close with them. I got to feed Beau, the male giraffe since Jana is more nervous around people. Beau is 18 feet tall. He was so nice and friendly.  After we saw the giraffes our guide took us to see the lion and the tigers. As soon as we got there, the lion stood up and started to roar. We didn’t think much about it until we got to the tigers, and one of them was completely fascinated by me. Every time my mom moved my wheelchair, the tiger followed us. The man from the zoo said he had never seen them so interested in someone. When we finally went to walk away, The tiger followed us as far as he could go. It made the man nervous and he said he was going to tell their caretakers. I think they saw me as easy prey and were sizing me up as a snack!!
I just went to see the movie HOP, with my mom and dad this morning. It was a lot of fun!

Hope your muscle pull is feeling better and you are able to start running again soon!! I’ll update again after I meet with Make A Wish! Have a good weekend.
Bye,
-Brendan

One Hot Day – April 19, 1976

 

 

 

 

 

 

 

 

 

Hi Brendan,

I’m sure you must know by now but I’m meeting you and your family at Kiku Yama tonight.   I can’t wait.  I heard it’s the second time you have been there in a week.  Lucky you!

I hope today at the Jimmy Fund Clinic goes better for you.  I know the past few trips have been disappointing, but hopefully today is the day it all turns around.   What’s today’s Lego creation?    Do you think you will have enough time at the JFC to finish it?  If you do, bring it tonight so I can see it.

Jack Fultz got back to me yesterday with some advice and encouraging words to get me through my injury.   He recommended that I treat my adductor strain aggressively with all the modalities available; including a visit to a good sports physical therapist (my first appointment is Thursday).   My training for the next week or so will be aerobic activities and hopefully I can be symptom free soon so I can get a couple of runs in before the marathon.

I knew Jack won the 1976 Boston Marathon, but I didn’t know how historic that win turned out to be.  He was going to end up winning one of the hottest Boston marathons on record.   An hour before the race, the thermometer read 100 degrees in the sun.   Being concerned about the runners, the BAA placed a sign on the front of buses reading, “Hose the Runners”.    All along the route, spectators pulled out their garden hoses and sprayed the runners as the passed by.   They also handed out wedges of ice and buckets of water.  Anything they could do to cool the runners.

Jack ran smart letting the pack lead the beginning of the race.  He ran from one side of the street to the other, getting under every garden hose shower he encountered.   He watched runners falter one by one, a victim of their earlier quick pace.  At the half way point he saw the leader for the first time and he felt like he hadn’t started working yet.  He was in his zone.  When he took a right at the firehouse and started into hills, he pushed into second place.  By the time he was at the top of Heartbreak Hill, he held first place.

Jack joked with the photographers on the lead truck, as they struggled to figure out who was this runner.  They all expected Richard Mabuza of Swaziland to win the race and didn’t know who he was because his running number had washed away due to of all the water.  When he entered Kenmore Square, he was overjoyed knowing he was going to win.   Jack Fultz ran the race of his life and surprised everyone to win the Boston Marathon in the heat.

Boston Globe Article, April 20, 1976:
http://www.boston.com/sports/specials/marathon/articles/1976/04/20/04_08_06_marathon_page/

See you tonight!

-Patrick

RM: 0.0
WM: 2.0
TM: 352.0

Marathon Poster

Hey Brendan,

I had a great time on Saturday with you.  The poster came out great!  I can’t wait to see the final product
Marathon Weekend.  It was even better
seeing you get around without your wheelchair.
You were walking along the rock wall instead of taking the walk path like
I would expect any 10 year old boy to do.

I had a lot of fun playing Foosball with you too.  It’s too bad about our loss.   I thought we had that one.   You
were a pro with your fast shots on goal.
We were letting our opponent get a few goals to keep the game close but
then we found ourselves in a hole that we just couldn’t get out of.  We’ll get them next time!

Good luck with your science project this week.  I think your idea is pretty cool, “What is
the Best Way to Mask the Flavor of Bad Tasting Medicine?”  Don’t worry.
I won’t reveal your results
before Thursday in case someone reads our blog.
I don’t want to spoil the
surprise ending.

Have a good week at school and I’ll give you a call on
Thursday to see how it went at the JFC.

-Patrick

RM: 17.0
WM: 17.0
TM: 342.5