Tagged: Leukemia

Beads of Hope

Brendan,

Beads of Hope

I was looking at the pictures we took from last Sunday and noticed the Beads of Hope.  I was glad that even with all the excitement of the day, you were able to show us your beads. What an amazing way to show your journey while in treatment.  I couldn’t believe how big it was.  It was taller than you!

Remission

 

Thank you for showing us all the different types of beads and explaining what they represented.  There were beads for treatments, operations, hospital stays, and milestones.  I loved your favorite bead, Remission.The beads along with the size of the chain show us how much you had to go through during your treatment.  It is a little overwhelming when you see it all at once.  You should be proud of yourself.  You had the strength and courage to get through it.

End of Treatment

I think my favorite bead was the one you received just a little over a month ago.  The bead which represents that you have successfully finished treatment.Have a fun Easter!  (…and eat lots of candy too!)

– Patrick

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Watch Fox 25 Tonight

It’s a wrap!  Brendan and I were interviewed by Nicole Jacobs from Fox 25 this afternoon.  She was doing a segment on Brendan and the Dana-Farber Marathon Challenge program.

Nicole was great and made it nice an easy for all of us.  She started by interviewing Brendan. What a super star!  He looked a professional.  Brendan’s parents, Scott and Alexis then start down with Nicole for a bit to discuss Brendan and his treatments over the past couple of years.  They wanted a few running shots, so they had  me head outside for a few running shots before that sat me in front of the camera.  I’ve run hundreds of miles this training season, none as self-conscience as that few strides.

We can’t wait to see how it came out.  Let us know what you think!

Poster Party Partie Deux

Hi Brendan,

I had so much fun on Saturday at the Poster Party with you.  I think we did a pretty good job this year.  Your mom saved the day with the re-positional letters.  Not only where they better than drawing each letter by hand, we saved a lot of time.

I think my favorite decorations were the hamburger and fried stickers that you brought.  They were so cool!  I can’t wait to see the finished product at the pasta party on April 15th.

I can’t believe how many fellow DFMC runners know who you.  You are like a rock star!  So many people after the run were telling me to say “Hello” to Brendan for me.  I was able to talk to a few of them for a bit, and they were so happy to hear how well the past couple of months have gone for you.  At the time, I didn’t even know you have been removed from precautions; so even more great news.

Two of your biggest fans ask me about you every time I run into them.  They are Jan Ross and Jack Fultz.  Both work hard making the DFMC possible so people like us can team up for such an awesome event like the Boston Marathon (and to raise money to help doctors and scientist make cancer an endangered species!). Even with their busy schedule, they take the time to hear the stories and get know everyone involved, including you.

One of the many reason why I wanted to get involved with Dana-Farber was a night back in May 2010.  Nikki invited me to come to a Dana-Farber Leadership Council meeting hosted by Eaton Vance in Boston.  When I got there, I was given a name tag with a number on it.  The number represented which table I was to sit.  There were 6 tables.  Also attending the meeting were 6 Dana-Farber doctors leading various research initiatives.

I sat at my table with 9 others and the first doctor sat down and discussed who they were and what type of cancer research they were doing.  After 10 minutes we had an additional 10 minutes to ask any questions we wanted before a bell would ring and the doctors would rotate tables.

Time, money, ideas, politics, beliefs, egos, education all seem to be both roadblocks and catalysts for cancer research.  The one thing that was consistent with each doctor that spoke with us, was their commitment to their cause.  These people were the 1%.  Not the 1% percent that has been in the news lately over Wall St.  They was the gifted men and women who will discovery the next cancer treatment, vaccine and lifesaver.   But they realize that they can’t act alone.  They need 100% of us to be apart of the solution.

You are probably wondering how this all relates to you and the DFMC.  Brendan, you are the bright star in the sky leading us.  Your strength during your ordeal and willingness to share it with all of us makes me want work with Dana-Farber.  It empowers people like Jan, Jack and others to create opportunities like the DFMC.  It drives the doctors and scientists to find the answers to the why, what and how of cancers.

So buddy, shine on!

– Patrick

Keep That Train a Rollin’

Hi Brendan,

Today was a hard but awesome day for you.  I am still amazed for how courageous you have been during the past two years.  Now the road is cleared so you can move on to a new chapter in your life.  I look forward to seeing life returning to normal for you and your family.

It was a great surprise after today’s surgery you were able to talk to me tonight.  I was thinking I would just get an update from your mom.  It sounds like everything went well. Everyone that I talk with sends their love and wishes for a quick recovery.

I love all this positive news during the past few weeks.  Chemo…done! Port and g-tube..gone!  2 years cancer free…yea!  Pajama day in your honor…awesome!  We need to keep that train a rollin’.

Remember, we need to plan a night to head out to dinner to celebrate as soon as you feel up to it.

Patrick

 

I’d like to have the Fried Chicken, please.

On Thursday, I went to Dana-Farber to be with Brendan on his last lumbar puncture appointment*.  He greeted me with his always pleasant smile, excited to see me.  He looked a lot better than the last time I saw him over the summer.  Brendan was a bit taller and had a few more needed pounds.  His wheelchair was at home.

Brendan was excited to show me the new artwork across the street.  His mother, Alexis took me into one of the empty rooms to look out the window.  Across the street, a new addition to the Children’s Hospital was under construction.  On the fourth floor, the corner steel girder had the name BRENDAN in bright yellow along with other children’s names on various beams.  I told him that it was awesome!

The nurse came to get Brendan ready for his procedure, and I was quickly reminded how much he goes through on a daily basis.  To Brendan, this was just another day in the life of a child with Leukemia.  He and his nurse fly through the prep.  His doctor comes in to say hello.  Brendan and mom pass out some Christmas gifts to the nurses that have been caring for him at Dana-Farber.

We had about twenty minutes before the lumbar puncture and bone marrow biopsy.  We talked about school and video games.  Brendan showed me the new Lego Imperial Star Destroyer, which he has been saving up for that has over 3,000 pieces.  He tells me he is feeling ok, eating well and tired of the steroids.  I also find out the good news that if everything keeps going well, he should be finished with his chemo treatments by the end of February.  Yea!!

We all go with Brendan in the room where they will perform the lumbar.  Brendan tells me he can almost count to 100 before the anesthesia puts him to sleep.  The general anesthesia is a gas which Brendan gets to pick its scented flavor.  He said they have any scent you can think of, so I ask them if they had Fried Chicken.  He laughed and thought that sounded like a great idea but unfortunately was not a choice.  Brendan went with orange and proudly began to make his way toward 100.

Alexis and I left so the procedure can begin, and I tagged along as she went to the Dana-Farber pharmacy to get this month’s drugs.  It is obvious this was not your typical neighborhood CVS pharmacy and do not service your typical customers.  She asks the pharmacist for a 3ml syringe because the markings on a 5ml make it hard for an accurate ½ dose.  They did not have any.

As we walked back into the clinic, people were unpacking stuffed animals and placing them under the Christmas tree near the front desk.  Alexis ran into a friend.  She was getting two animals for her kids, her son is a patient at Dana-Farber.

We were able to go back into the room when Brendan woke up.  He was cold and still a little groggy.  Everything went well.  Brendan cannot wait to eat because he had to fast the night before.   I give him a hug and told him I had to leave to get back to work but I would talk him before Christmas.

On the elevator ride down, I replay the morning in my head.  I focus on how “normal” today was for Brendan, his mom, the doctors and nurses.  I think to myself, no one should have to have this normal of a day.

It is all of our responsibly to find a cure.

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