Category: Treatment

A Little Foggy

 

 

 

 

 

Hi Brendan,

I heard the news from your mom that you are on hold for chemo yet another week. I feel bad that you were not able to start. I know it is frustrating for you. She told me your numbers are looking a lot better and with some luck you should be able to resume your chemo next week.

Your mom also said your CD4 levels were much better than they have been so this means you are good for the DFMC party on Saturday! It should be fun and I’m looking forward to seeing you there. We have a big task ahead of us creating the marathon poster. Just to warn you, I am one of those people who think an 8 Count Crayola box already has too many crayons in it. I know how inventive you are with Legos, so I definitely think you will be the creative lead for our poster design.

I’ve had some trouble getting good quality training runs in lately. I only have 23 miles in this week. So I made sure I got out there this morning….for a spooky run.

Thanks to daylight saving time, the sun doesn’t rise until almost 7am again. When I stepped out of my house, I noticed the dense fog. It seemed thicker due to the darkness from no street lights. I don’t think I could see more than 20 yards in front of me.   Continuing along my way, I could barely see the houses and the sounds of nature seemed to echo of them. Just when I started to realize just how little I could see, I startled some nocturnal creature who then returned the gesture and scared the “you know what” out of me! That surely helped get the blood going.

Once I got on the main road it reminded me of some of the earlier snow covered runs. I had to make sure each of the cars saw me in the fog. I could hear my dad’s voice in my head telling me to get a light to wear while running. I should have listened to him because it would have come in handy this morning. I’ll have to add that to my shopping list.

Toward the end of my run the fog started to lift and the dawn sky started to brighten. Returning to my neighborhood once again, I thought how different it looked. It pretty amazing how quickly things can change for the better.

Hang in there.

-Patrick

RM: 8.25
WM: 23.25
TM:  318.25

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A long week

Hi Patrick,

I’m glad you were able to go to clinic with me last Thursday. Too bad it ended up being so quick with no Chemo.

I’m so glad that my biopsy seems to be negative, but I still need to get the final results hopefully Monday, and then we still need to have the Lumbar Puncture so they can check for CNS involvement. It was a really scary 24 hours!!

I hope you aren’t too sore after your run today. I can’t believe the marathon is a little over a month away. The family who my mom used to babysit for will also be at the Pasta Party, since there dad run’s for Dana-Farber every year.

Hope you have a good week. I’ll let you know what happens this week in clinic. Keep your fingers crossed that I can finally get my chemo!!!

Talk soon

-Brendan

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

More Chemo holds…

Hi Patrick,

Well I hope you are having a great time in florida and getting to do some running in the nice, warm, snowless streets. They keep promising it’s going warm up but I’m not sure they are right. It will be awesome once all this snow is finally gone!!

I had a great time in Florida with my mom and dad . It was a little chilly in the mornings but warmed up nicely in the afternoons. I got to meet my Great Aunt Debby, my cousin Jessica and her daughters Kendall and Avery while I was at the Magic Kingdom. It was so nice to meet them and they are actually coming to Boston next week!! I also got to see my grandfather who lives down in Florida and one of my mom’s friends from high school and her husband and kids. We spent the day at Epcot with my mom’s friend and her family. While we were walking through the world showcase,(well I was in a wheelchair, not walking) my mom’s friends husbands phone rang and Ray said it was for me. When I got on the phone, I was surprised to be talking to JOHN CENA, the wrestler!!! He is good friends with my moms friends and knew we were going to be together so he called to say Hi and see how I was doing. It was really cool.

I went to Universal studios also which was so much fun.I’ve never been there before. I LOVED Harry Potter World and the Simpsons ride. Twister was really fun too. Even though I was kind of sick with belly issues while I was in Florida, I had a great time!!!

Somehow this is the second week in a row my numbers weren’t good enough to get chemo, and the third time in the past 4 weeks. On the upside, I’m feeling pretty good and I finally got a negative result on my Parvo test for the first time last week and my mom is pretty sure this weeks and hopefully next weeks tests will also be negative since I haven’t had steroids in a while. Maybe I will finally be off isolation and not have to wear a mask when I go to the poster party in two weeks.

I haven’t done too much in the past few weeks since I’ve been home from Florida. It’s just been too cold and my mom wants me to rest some so maybe my numbers will be better next week and hopefully I can get my chemo again.

I hope you had as much fun on your trip as I did on mine. You’ll have to tell me how the cruise ship was!! Once my mom figures out how to download her pictures to the new computer, I’ll post some pictures.

Well, thats all for now. I’ll post again soon!!

Talk soon,

-Brendan

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

Endurance

I can’t wait to meet you in person too!  I RSVP’d to the DFMC Meet Your Match Party earlier today.  Your mom and dad should have received their invite earlier this week.  I hope you like Ice Cream sundaes like I do because that’s what there feeding us!

I didn’t know many of the procedures and drugs that you talked about.   I had no idea the amount of processes that needed to be done all at once.   I went on to the Dana-Farber website to educate myself and look up some definitions.  Here were some of the terms:

Intrathecal Chemotherapy
Emla Cream
Methotrexate
Cytarabine
Vincristine

Brendan, I’m in awe with your strength and endurance with such a positive attitude.  I wish you all the best tomorrow.  You will be in my thoughts all day.    

-Patrick

Another snow day,YAY!!

Glad you were able to run with all this snow!! Today was a snow day for me but also another day in the JFC (Jimmy Fund Clinic) to start yet another chemo cycle.  On the upside of staring another chemo cycle, it means i’m one more cycle closer to finishing my protocol. I didn’t actually start my chemo today like I usually would because I go in for a quick surgery in the morning to get an intrathecal chemo treatment into my spinal colum to help make sure no cancer cells devolop here or in my brain.

Tomorrow I will arrive at the JFC @ 8:00, Get my port accessed, have my vitals done, have emla applied to my lower back, be put under with ansthesia, then they will do a lumbar puncture (spinal) and give Hydrocortisone, Methotrexate, and Cytarabine into the spinal fluid. Then, once I wake up they will give me my Vincristine. And if ALL that isn’t enough, I start back on my oral Chemo at home later tomorrow night for the next 14 days! PLUS my Steroids start up again!!

So it’s a big, busy day for me tomorrow (one that will be repeated again in 9 weeks..) but I will post again tomorrow.

I’m really excited your running for me and we can”t wait to meet you!!!!

-Brendan