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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

10-6-18

A little over 10 months ago we were up in Wisconsin enjoying a little time away from work and school.  Brody had not been feeling well the entire time we had been there.  The Saturday before new years eve we decided to go to one of his favorite places to eat by the cabin, it was the all you can eat seafood buffet at the indian casino.  We went and he just picked at his food the whole time, he wouldn't even eat the ice cream buffet.  Something was seriously wrong.  4 days later he was 300 miles south laying in a hospital bed in Lurie's ER and was diagnosed with Leukemia.  Tonight we are back in Wisconsin (with the doctors OK of course) and we went back to that same seafood buffet and Brody proceeded to eat more food than I have ever seen him eat in his life.  He made it a point to try every single item at the buffet.  He had crab legs, mussels, clams, fish, shrimp, escargot, beef from the carving stating (4 times!), and everything else he then topped it off with ice cream, pie, and cake.  What a feast!

What a great night for Gina and I as well, to see our oldest son eating and acting so happy, just the way he should be.  After dinner when we were getting ready to leave an older gentleman dropped his knife on the floor. Brody picked it up and handed it to him.  The conversation that ensued was very nice.  The man shook Brody's hand and asked him his name and Brody told him.  The man said to Brody "that's quite the Q-ball you have there" the man was not being mean at all but very friendly, Brody smiled at him and just said "yep".  The man asked "have you been ill?" Brody told him "yes I have but I am getting better".  This moved the man, he got choked up and told Brody how proud he was of him and what a tough young man he was.  Brody stood a little taller and kept eye contact and told the man thank you.  The man looked at me and told me what a nice family I have, I thanked him and we were on our way.

That 2 minute interaction with the old timer eating by himself was one of the most moving interactions I have seen Brody in.  I am so proud of how he handles himself, seeing this man have a genuine concern and conversation with Brody was awesome.  No matter where we go I find that people are genuinely nice, especially when it comes to Brody.

 

So I know it has been quite some time since I have posted and lots has changed in the last month.  Brody ended up spending a grand total of 18 day in the hospital.  Towards the end there was some concern that he may have gotten a fungal infection.  He had to stay in for his counts to come up and then had to have a CT to check for fungus in his lugs and respiratory system.  Thank god all came back good. 

After coming home Brody stayed out of school the remainder of that week.  His second week home his counts had climbed high enough that he was able to go back to school.  The first week was tough, he was really tired and it was hard for him to make it through the day. Brody hasn't really been to school since last December. During that first full week back Gina drove and picked him up every day since his counts were not super high she didn't want to risk him taking the bus. He missed a day the first week just due to sheer exhaustion.  His second week back he not only made it through the week (except for his scheduled chemo) but he got to take the bus! Brody likes school and is so glad to be back with his friends, it makes a world of difference for him.  The only thing he has made a comment about was that he liked being tutored because he could do a week worth of school in just a couple of hours (can't say I blame him there). 

Things around the house have changed for Brody too.  He and Tyler are now sharing a room since Cole will be taking over Tyler's old room (very soon I hope).  They have only been sharing for a few days so it is too soon to tell how it is going to be.  Brody absolutely adores his new baby brother and is constantly talking, singing and kissing him.  It is really cute to watch all the boys together.

Brody's current protocol, which he is half way through, is called interim maintenance two and only requires him to go to the hospital once every 10 days rather than once a week.  He does still get 4 spinal taps, vincristine and PEG so it is by no means easy on him but at least it is a little more spaced out.  At the completion of this he will begin 2 1/2 years of maintenance therapy.  The first year of it will be the toughest he will get monthly spinal taps, vincristine and daily oral chemo.  The 18 months proceeding that are then the same but the spinals get reduced to once every 3 months. 

There is still a long road ahead for our little guy, but he has proven he is tough as nails.  He can and will get through it.  He is such an amazing young man, I am so proud to be his father.     

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