It's been two long months since I updated! I kept meaning to, but life has been moving a mile a minute! Brody is overall a very happy kid these days but we've had our share of challenges this summer!

The prednisolone was a terrible med for Brody. Our sweet boy was so angry, had all this water weight retention, and was just not himself during the medication's course. Luckily we are way past that treatment now.  The meds Brody takes currently are:

-Cyclosporine (Neoral) - that's his big immunosuppressant
-Magnesium
-Hydrocortisone
-Poly Vi Sol (multi-vitamin)
-Singulair
-Amlodipine - blood pressure meds
-Bacdrum 
-Symbicort - inhaled steroid for his lungs

More recently, Brody developed a little red rash on his face first, and then it would get further exasperated when he would go outside or be in the heat of the summer for too long. We've been good about keeping him out of direct sunlight, but even just being outside would often inflame this redness, mostly on his cheeks but it would sometimes spread to his hands, feet, knees. It looks/feels similar to just extreme dry skin and our CHKD team was not entirely convinced it was GVH but Willie and I instantly knew that's likely what this is. 

We went down to Duke for a follow-up on Monday, July 31. We had not been back to see everyone since March! We had that hospital stay at CHKD back in May that ruined our plans of traveling, so it was a long overdue visit/checkup. The timing worked out too because of the rash. At Duke, Bro had a CT Scan with contrast, a Pulmonary Lung Function Test (they wanted to do this back in May), and then we were seen by the doctors. 

One of the nurse practitioners examined his head and confirmed exactly what we thought: GVH - mild for now, but could be chronic if not treated. She gave us a topical steroid oil treatment for his head and more creams for this body/groin area. This rash can be brutal, so we are back to lathering him up like a pig.  We experienced GVH back in September and got a good handle on it.  Here's to hoping the same happens this time around. 

She also explained this GVH complication can be seen often in patients who have had the anemia Brody had in May. It's always so comforting to see our Duke team because they are a transplant hospital and normalize almost everything Brody is experiencing because they have seen everything and more there.  It's hard sometimes at our weekly clinic at CHKD because they don't always have the exact answer or treatment plan ready to go. 

Another roller coaster ride we went on was the news that Dr. Prasad is leaving and taking a research job. At first, it was shocking and no one knew if he was still seeing patients. I spent an entire weekend pretty upset at the thought of never seeing that incredible doctor again. However, we learned this week that he will still be seeing his current patients on Wednesdays for roughly the next year as he transitions out.  That made me feel a bit better, but just imagine someone who was with you during your worst, most traumatic time just up and gone - it was devastating news at first, but we will see him this week! We're going back down this week for the team to look at his rash and luckily see Dr. Prasad.  

Also, our very favorite Fellow - Dr. Hicks - has taken an Attending position at DC Children's and while we are so happy for her, we are sad for us - we didn't get to say goodbye to that amazing doctor and friend to us. 

Another hurdle has been medications and the pharmacy crisis that exists right now. In short, it's been awful mostly because there is no pharmacy inside CHKD and many of Brody's meds are compound medications so they are challenging to get/find. We even had to go to clinic 3 days in a row just so they coud dispense a tiny medication there since no suppliers anywhere could get it. Shout out to Casey and Brenda Kyle for literally meeting me in Williamsburg a couple of weeks ago to hand me a medication (cyclosporine/Neoral) that we had to source in Chester, VA.  It's been a tough time and pharmacists have not been super kind/helpful which has been really disappointing. 

On a couple positive notes, Brody is LOVING physical therapy and speech therapy. Our therapists are incredible and very reassuring. We see them every Friday in our home and Brody knows them and plays with them while they are here.  We're making slow but steady progress in both of those worlds. And, Brody got to mee some of our Ohio family when they were visiting last week and he loved meeting new faces and snuggling with Aunt Adi who was in town from Boston the same week!

We also gave Bro his first haircut! It was so much fun to be cutting his hair for fun and not out of necessity/due to chemo. We might end up cutting his hair again if this little rash on his head doesn't subside, but we were proud of him and ourselves for getting to experience such a normal chore as a haircut. It felt like a little win. :) 

It's exactly one year ago to the day that Brody has his surgery to place his central line and we were admitted to Duke Hospital. I can't believe it when I think about it. It seems like a year ago and yesterday at the same time. My favorite quote I've been clinging to lately is "Only look back to see how far you've come." I'm doing just that.