It feels like a lot should have happened between now and the last update I provided, but in all reality not too much has changed on our end. We hang out together constantly, avoid public places as much as possible, he takes lots of medications and he still spends lots of time at the hospital. Nonetheless, we get to sleep in a real bed, I get to drink coffee from a real mug and we don't eat hospital food, which all is really, really good.
The first few weeks out of the hospital were rough for Brad, but unfortunately, as expected. He had bouts of vomiting, consistent nausea, no appetite and extreme fatigue. He lived on protein shakes and... more protein shakes. It wasn't that he couldn't physically eat, but more that food tasted terrible, cardboard is how he described it, and nothing agreed with his stomach.
He has lost 30 pounds since June 8th. It was only in the last several days that he has ben able to eat a full meal. Real food. Not everything tastes 'normal', but his taste buds are beginning to make their way back.
We are on day +39 from when Brad was discharged and he has been back to the hospital nearly every day since. The hospital visits range from a quick blood draw, to a bag or two of fluids and magnesium, a visit with his doctor or some combination of D. All of the Above.
As you all know, we are currently living in an apartment 10 minutes down the road from Moffitt as a precaution incase we needed to get to the clinic quickly. Due to COVID, the clinical teams have loosened up the allowable distance from the hospital post - transplant which technically makes our house 'within in range.' However, because we had already secured an apartment (and his doctor knew about it) and he has still had to go on a daily basis, we have chosen (and been told by his doctor) to stay close.
BUT - the good news - we got to come home two days ago and won't go back to the apartment until Monday! Brad is doing really well! In hindsight, I probably should have started the blog post with that statement... His appointments have started spreading out and since he doesn't have to go back until Monday, we will be at OUR home for 5 nights. FIVE NIGHTS IN OUR OWN HOME!
We think we might be home for good in August, but still to be determined....
What's next: he had his first chimerism blood test last week- or the test that identifies the genetic profiles of the recipient and of the donor and then evaluates the extent of mixture in the recipient's blood, bone marrow, or other tissue. We should hopefully get those results back next week. Then, he will also have another PET scan on Monday and get his central line removed on Tuesday!
Prayer request: I know I sound like a broken record, but we have to keep any illness away. Please keep praying for that. Pray that he continues to feel better day by day, that his energy continues to recover.
Thanks for hanging with us throughout this really, really long journey. Its hard to believe we have been on this path for nearly 8 months, but thankful to know that the entire time we have had the greatest support system behind us.
We love you,
Natalie and Brad