True strength....

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." - Christopher Reeves

My friend Hannah (we've been friends since we were 4 years old) sent me the above quote the other day. I posted it to my Facebook page and many friends reposted it to their pages too. Its such an inspiring quote and the words resonate with so many people. I think of this quote many times a day now and it literally inspires me to keep my head up because honestly, having a chronically ill toddler is a very trying experience. I thought it was worth sharing and I plan on posting it at the beginning of many more posts as a reminder that Brody is my true strength.

I'm so touched by all the people who reach out to show they care about this amazing little boy and our family. Thank you Kaili for the fun little care packages you dropped off this week for Brody & Kaelyn. Kaili also delivered a fun Melissa & Doug puzzle from Brody's Gymboree teacher, Leslie. Thanks Leslie! He loves it!

I have to admit, I'm exhausted. Its been hard this week to find time to write and to write in a manner that makes sense. Today Brody had his 4th chemo treatment in 10 days. His counts are absolutely wiped out and he's neutropenic so we have to watch him like a hawk this next week. He'll have his 5th treatment on Tuesday, at the two week mark, and if he can make it through this next 7 days without any infection or fevers then we are hopeful he'll start to feel a tiny bit more himself. I know, i'm not taking my own advice of one day at a time, but when I see little glimmers of my boy come out I get anxious to have more of him return. His steroids are also scheduled to taper for the first time on Tuesday and the doctor said it takes several days for him to adjust to the lower dose. Brody also had a blood transfusion today and that always puts color back in his cheeks and makes him perk up. He came home after his treatments today, which were from 9-4:30pm.. yikes, and ate and ate and ate for the first time in well over a month. It was just one meal but I told Jeff it was better than winning the lottery, seeing him eat a normal amount. He's so, so skinny.

Brody's pediatric dermatologist stopped by to say hello today while Brody was in day treatment. His skin is doing great thanks to Dr. Segal! She's moving at the end of summer and the community will miss you so much, Dawn! You've really been an amazing part of Brody's care team over the past 5 1/2 months and we thank you so very much for your daily visits when Brody was inpatient and the emails and phone calls to check in on him when we couldn't get in to clinic to see you. You've done an amazing job at caring for his delicate skin and we are going to miss you.

Oh, I almost forgot. The parking at Doernbecher. Ridiculousness! They make it so much more difficult than it needs to be. Both Emanuel and Children's have valet, which is a pretty big deal considering both places have MUCH better parking without valet than OHSU. Come on Doernbecher... join the valet party, its all the rage :).

Things seem to move a bit slower when you are out patient. Every little detail of care has to be pre approved by insurance so we've been slowed down in regards to moving forward on the BMT. Nykole and Allison at Doernbecher have been taking wonderful care of us and keeping everything moving forward on this front and we are hopeful that week after next we can meet with Dr. Nemecek to make a game plan and have better understanding of what the rest of our summer will look like. Allison did provide me with information regarding testing for possible marrow donations for those of you who've expressed an interest at seeing if you are a match for Brody. I'll post that information under a separate post in the next few days.

I cant describe how much Brody goes through on a daily basis and how anxious I am to get him back in to shape so he can be a kid again. I know this is a long process and a one day at a time journey. We just put one foot in front of the other and continue to march forward knowing that someday soon little B will be all better. Thanks in no small part to all of the love and support from his community of followers.

Love to you all,

Jeff, Tracy, Kade, Brody, & baby Kaelyn....