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Hope For Brody

This site was created to help our friends and family stay up on everything happening with Brody and his treatments for Leukemia It also documents our journey. Please shar[...] read more

Latest journal entry

1-14-19

First I am very sorry for this long gap in postings, time just got away from me I guess. I know many of you are wondering how Brody is doing. I want to start by saying he is doing much better lately. 

 

It has been just over a year that Brody has been battling Leukemia.  His path has taken him to two very prominent hospitals, visits with many brilliant doctors and other hospital staff, and through unimaginable highs and low lows. 

Brody is now in the “maintenance” portion of his treatments.  Maintenance will last roughly two and a half years.  It is a recurring 3 month protocol.  On or around the first of the month he goes to the hospital to get a spinal tap with Methotrexate and IV vincristine.  On that same day he starts a 5 day course of steroids.  The rest of the month he takes oral Methotrexate and 6MP.  Of the 3 months two are this way and the 3rd month he has no spinal tap. 

Brody is just about to finish his first 3 months and sadly it is not as easy as we had hoped it was going to be.  The steroids and all of the oral medication he takes seems to be effecting his stomach and is debilitating for him some days.  We had a misconception that maintenance was going to be a little easier, but it is still pretty rigorous, as a matter of fact the doctor’s recently told us that throughout they try to keep his counts depressed to the point where they will increase the chemo if they get too high.

It is not all bad though, with the exception of the first week (during and just after steroids) and a few random days throughout the month Brody has been doing really well!  He has started to grow some hair back and is looking extra cute these days.  He has been going to physical therapy several times a month for his neuropathy and doing his exercises at home.  His mobility has increased dramatically, the physical therapist at Comer is very impressed with the progress that he has made.  At some point unfortunately he will plateau until he stops the Vincristine (that is the medication that causes the issues.)

With his mobility and overall health better I am happy to say that Brody has been attending school regularly now.  He also has gotten to do lots of fun things over the last few month, the best of them just getting to be a 7 year old boy!  Brody had a really nice Christmas and after we were able to go to Wisconsin for a week where he got a chance to sled, snowmobile, and ice fish it was really fun!

Brody also was chosen to do a couple of really cool things courtesy of Bear Necessities.  First we got to go to Halas Hall (the Bear’s training facility) in Lake Forest where Brody was able to tour and then play and perform drills on the practice field.  The Second and probably coolest thing he has done in his life was be featured for the Blackhawk’s “Hockey fights cancer” night.  Our whole family was given a box at the stadium.  Brody was walked out on a purple carpet before the game and then was invited out onto the ice during the national anthem.  His face was beamed down onto the ice and his name announced over the stadium, I was so proud to see him down there on the ice in front of tens of thousands of people standing proudly with his hand on his heart, it was amazing!

Brody continues to take his illness and the challenges that come with it like a champ, still not a complaint out of him, he is incredible.  Watching my son handle this like a man has made me a better and stronger man.  He has inspired and taught me more at 7 years old than any other person in my life, I am so proud of him.  It is not just me he has done this for, our whole family Gina, Tyler and Cole are better people because of him.  Speaking of Tyler a funny story about him and Brody, I walked in and he was going crazy doing kung fu moves and I asked what the heck he was doing to which he replied “fighting Brody’s cancer” so literal but so heartwarming.  Like I said Brody has inspired us all.

A couple of nights ago Brody and I were laying in his bed and he was filling out his “dude book” (like a journal) one of the questions was “if you could let a robot live your life for you would you” and he answered “no way, my life is awesome” I had to leave the room because I was visibly moved.  Here is a kid going through something so tough and so miserable and he thinks his life is awesome, incredible (and I am so happy he feels that way)!

Hopefully the next couple of years blow by and he keeps his positive attitude.  Please continue your thoughts and prayers for Brody.  In this new year I promise I will be better about keeping everyone informed about Brody.  Right now life is good at the Swan house!      

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