Tagged: Jimmy Fund Clinic

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

Advertisements

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

Hopefully Today Will Be A Better Day

Hi Brendan,

How are you today?  Thank you taking me to the Jimmy Fund Clinic with you for your treatments today.  I appreciated it more than you know.

I am very sorry to hear about your friend that passed away this week.  I know that is very sad.  I loved how much you smiled and laughed when you mom told everyone the story how the first time you met his mom you were at the hospital.  While playing with a small remote helicopter it got caught in her hair and everyone was afraid they would have to cut her hair to get it out.

I am sorry that your Parvo test came back positive again.  I saw how disappointed you were.  I know you were hoping for the third negative you needed so you wouldn’t have to be in isolation while at the clinic.  I will come to more of your treatments to help past the time while we building Legos.  You will have to show me the one you didn’t have time to work on today.

Once again, you showed me how you are such amazing person.   The courageous way you approached each procedure, the mature manner you spoke to the doctors and nurses and the knowledge you expressed as you help explain to me about your treatments has humbled me.  I cannot truly understand what you have to go through but over the past months you have allowed me to understand a little bit more.

I am amazed at how much you accomplish with such a positive attitude each week.  I’m sure this is “normal” for you but for me it’s just crazy. Hopefully I’m not missing too much but your week is full of school, tutoring, physical therapy, chemo, trips to multiple doctors, medications, procedures, medications for the medications, and hopefully some play time too.  And you do all this usually on just one meal a day because you have no appetite.  Many people can learn a lesson from you.

Your mom and dad are pretty special people too.  I see how much they love you.  I also see how much they have given themselves to the one thing in the world that want, and that’s a healthy you.

I’m crossing my fingers that your numbers came back good enough to continue chemo today. I’ll check in later for an update. 

Hopefully today will be a better day. 

-Patrick

-Patrick

RM: 0.0
WM: 26.15
TM:  289.75

A Lesson in Positive Thinking

I heard the buzzer going off.  It was 4:55 a.m.  I couldn’t do this, this morning and I hit the snooze button.  

Again, I heard that awful sounding noise ringing in my ears.  This time I shut my alarm off.  I decided I don’t have to run this morning, telling myself I can run at the gym later. Hmmm, hopefully if my day doesn’t get too busy?   I convinced myself I’ve been training hard enough and it will be ok.  It will be good for me to sleep some more.  It’s repairing muscles, I’ll have more energy, it can also…ZZZZZ. 

I awakened just five minutes later with thoughts of my busy day before me.  Sitting in traffic, project deadlines, and reports was just a partial list.   Then while I lie in my half slumbering state full of misery, one person entered my head, “Brendan”.   

This morning you are starting another chemo cycle, getting an IVIG infusion while meeting multiple doctors.    And that is one of your easier days at the JFC (see Another snow day,YAY!!).   Today you should be getting up and going to school, complaining about too much homework and heading over your friend’s house to play in the snow.  Yet, in the 5 weeks I’ve gotten to know you, I have never heard a complaint.  Each time you talk about your ordeal, you do so in a positive way. 

I don’t’ know if you realize at such a young age how inspiring you are to people.  You are strong, thoughtful and refreshingly optimistic.   

Somewhere over time, we as adults tend be become more cynical in life.  I’m not sure when and why that happens.  We weren’t always this way.   I think we need to be shown by people like you to be mindful of the moment and to enjoy life. 

Today I pledged to myself to stop complaining, at least about things I love to do.  I enjoy running.   I’m not supposed to look at it as a job or a chore to do each day.  It should be like more like watching my favorite television show or eating a big bowl of cookie dough ice cream.     I’ll even try to be more positive on the weather.   Yeah, remind me of that one after Saturday’s snow storm!

I hope today went well at the JFC and I’ll see you tonight.

 – Patrick

RM: 9.75 (Raynham’s Random Run)
WM: 31.3
TM:  123.25

Hope you get to run outside again soon!

Well it IS another snow day. There is sooo much snow outside, I can’t believe it. 

Yesterday I had to to the JFC for another IVIG and my chemo. Everything went fine and it was only a 3 hour visit. Unfortunatly today I woke up with a sore throat and stuffy I hope that maybe since we have so much snow now, that maybe we can have a nice snow free Feburaury. I can’t believe I’m going to florida in 2 weeks. I hope it isn’t freezing down there!!!

We are going to try to post 2 pictures of me. One was taken on January 18, 2010 and the other was taken on January 18, 2011.

Hope you stay safe on your runs. Be careful on all that ice!!!

See you soon

-Brendan