Daniel has been diagnosed with Sweet’s Syndrome. It is common with patients with blood disorders and those who take medications that boost production of white blood cells. Daniel falls in both categories. He is responding amazingly well to the steroids and I could see an improvement in the wound in a matter of hours, and it looks even better now. (If you google Sweet’s it talks of little red bumps, his lesions were a bit different. We keep joking that he always has to have the rarest things). He is still in pain but knowing what is going on and that there is an treatment plan has been great for him! This is not a chronic issue. They explained it is something that may pop up again later if there is a big change in his blood or immune system. Which can actually be the first sign that something is changing for some patients.
Sweet’s Syndome is a diagnosis of elimination which is why it took so long to determine. Also, it is rare. One doctor said he thought it was Sweet’s but he hadn’t seen it in over 20 years and it did look atypical from what you usually see. The researchers in the group will enjoy this, his case will be presented at a conference and possible paper.
We have a treatment plan in place which includes steroids.His immune system will be lowered from the steroids so we will have to follow some protocols to keep him from getting any infections but he should be healed up from the Sweet’s in a few weeks.
Then the focus will go back to figuring out the next steps for his MDS. More than likely they will do another bone marrow biopsy so they can determine what his MDS grade is, and then we will talk through all the options for treatment. Prior to the Sweet’s Daniel had been having increasingly worse weeks in terms of of his anemia and the MDS in general. The MDS also started affecting his white cells and platelets. For now we are taking it one day at a time.
So after 19 days in the hospital, 20+ doctors, countless bags of antibiotics, a couple dozen nurses, and lots of hospital food WE ARE GOING HOME TODAY!!!
God has truly blessed us in so many ways during all of this, providing for us in ways we didn’t know we needed!
Thank you for all the thoughts and prayers!