I haven't done a long update in quite a while! The beginning of our summer was very busy medically. Raul started having extreme pain in his right knee in late-June, which led to us doing an MRI to look for bone infection after ruling out fractures in his leg and hip with x-rays. We had the MRI right before the 4th of July, and soon after I was called back to be with him in the recovery room (he had anesthesia for it), the nurse came and handed me a phone. It was his pediatrician on the line, and while he did not have a bone infection, she had been contacted by the radiologist as they were very concerned about how his bone marrow appeared on the imaging. The doctor said she was trying to get in touch with hematology/oncology to figure out how we could run more labs that day. I asked her directly, and she said they were concerned about Leukemia.
Luckily, Raul's hematologist/oncologist who manages his anemia was nearby doing a procedure along with another oncologist, and both received calls about Raul, so she was able to come over to the recovery room. She was able to get them to draw labs in the recovery room, and we had to wait about an hour to come back. They needed to make sure he was stable enough to go home for the weekend, and then would schedule a bone marrow biopsy the next week. We got his labs back, and thankfully were able to go home shortly after!
Later that weekend he started having issues swallowing, and by mid-week the next week we ended up going through the ER due to his choking on his secretions. The next day he had his esophogeal dilation and bone marrow biopsy/aspirate. A couple days later we got the first results, and they were negative for Leukemia, but we had to wait a bit longer for the full report. Thankfully those were negative for cancer as well, but were still quite abnormal.
eating ice cream after his esophogeal dilation
I consulted with the doctor that does the bone marrow transplant trial for EB to get his take on the results. He said that is would not be surprising for someone with severe EB to have these results, and that it could cause increased bone pain. However, Raul's pain is focal pain in his knee, so he said if there was an underlying deep infection that we missed, the quality of the bone marrow could continue to worsen.
This is basically where we are still stuck now. Over this summer, he first went 35 days between antibiotic courses, then 18, and most recently 9. Every time he stops the antibiotics the extreme pain comes back and he cannot fully function because of it. He has been on antibiotics since last Monday now, and is still in a fair amount of pain. We are considering a repeat MRI, as well as running more labs when he has his iron infusion next week.
Next Saturday we leave for Cincinnati! They have one of the few multidisciplinary EB centers in the U.S., and are the closest one to us. Our main goal in going is to address his non-healing wounds with the plastic surgeon, and hopefully do grafting. We also plan to see dental/have his teeth cleaned under anesthesia, pulmonary/a bronchoscopy, ENT, Cardiology, and do a whirlpool bath under anesthesia. We will be there about two weeks it looks like. Raul had his third birthday in Cincinnati, and will now have his 5th birthday there as well!
Raul has also been in school for a few weeks now; though missed most of this past week due to the pain as well as some fevers. The past few months, his speech has really been coming along amazingly! I was watching some videos from last year, and there is a huge difference with how he speaks now. He had to change classes this year, and I think that has been a bit of an adjustment, as on and off he has struggled with having to go to school. This year they have special class though (Drama, Art, Music, Science, and P.E.), and he seems to like that change!
For those that want more frequent updates, I do short updates more often on facebook: https://www.facebook.com/RallyForRaul