I am going to try to keep this short as I just don’t have the energy or the perspective to really go into too much detail about how our last two and a half weeks have gone. The ACTH keeps her from sleeping much, so everyone in our house (Mom, Lance, and I) is sleep deprived from trying to keep up with her.
We have been injecting ACTH for 19 days now. After the first week, we were seeing some dramatic improvements and I actually allowed myself to think this drug might be Maddie’s miracle. After 6 days with no clusters, they reappeared on their same old schedule (every 3 hours all day). We were devastated. We upped the dose to 150 units. This is a massive dose of steroids.
Around the same time the clusters came back, Maddie seemed to be in pain when urinating. So despite being on an antibiotic to prevent UTIs, she had contracted one again. We began to treat it, but when the more detailed results of the urine culture came back, our oncologist felt we should get a better sample by catheterizing her since there were so many different bacteria in her first sample. So off we went to the urologist’s office Friday afternoon. It was incredibly strange; Maddie barely reacted when she was catheterized. Normally, she screams, flails, and cries and is basically traumatized by it. So her lack of reaction made me think she was feeling worse than I had previously thought.
So when we arrived at the oncologist’s Friday afternoon at 4 to drop off the new urine specimen, I asked her oncologist if we could draw a blood culture just to be sure the bacteria in her urine had not already made it into her blood. He took a quick look at her, listened to my description of her being somewhat listless during the catheterization, and decided Maddie needed to be immediately admitted to the hospital for observation. So completely unprepared, with no bags or any of her meds we headed over to the 11th floor of Levines Childrens Hospital for a minimum two night stay until we were sure her blood cultures were negative.
Her oncologist knows us well, and was worried because of her very precipitous decline last time she was on steroids and became septic. He felt it was unlikely that she had a blood infection, but that it would be unwise to ignore possible warning signs. So it was better safe than sorry.
So we spent our weekend at the hospital. It was the only weekend this month Brandon has been able to visit, so we got to enjoy some quality family time, just not quite as expected.
The good news is her cultures remained negative, so we got to come home yesterday. Unfortunately, the extremely high dose of steroids has not made much of a dent in her seizures. It also made it quite difficult for us to keep her happy overnight in the hospital since she barely sleeps. We also really missed her port in the hospital. She was stuck twice in each hand, once in one arm, twice in one foot, and once in the other foot in order to get a working IV and enough blood for the tests they needed to run. That was not fun at all.
We have a busy week coming up. The house we are moving into on base in Camp Lejeune will be ready for us Wednesday. Movers will deliver all our stuff Thursday. So if Maddie is up to it, we will head down there Wednesday and try to help out a little. We are really excited, as we actually plan to try to move there and live with Brandon soon. We had hoped to get some seizure control first so that our life was a little more “normal”. But that was not to be…..and we want to spend as much time as we can together as a family before Brandon deploys in November. So things may get crazy for awhile, but we hope to try to make the most of the time we have left together. At this time, we are not quite ready to move to the care of another oncologist (we love Dr. McMahon and we know he really cares about Maddie and knows her better than a new doctor ever could), so we will be traveling quite a bit to try to keep watch that her leukemia is not returning. We will be sort of splitting time between Charlotte and Jacksonville for awhile.
Of course, all of our plans depend on how well Maddie tolerates traveling. And while she is still on the very immune compromising ACTH, she can’t be in public much and at any sign of a fever or sickness we will be quickly en route to Levine Children’s Hospital here in Charlotte.
It will take us a long time to wean her off this high of a dose of steroids. We hope to keep her healthy the rest of the way through it. We have not completely given up hope that it could end her seizures, though it seems a longshot at this point. It is possible that the UTI had something to do with the return of the clusters, but as the UTI goes away with the antibiotics, we would expect to see some major improvement. And while we are seeing some improvement, I would not call it major yet. So I am currently waiting on the phone call from her Neurologist to see what med we will introduce next. We are trying to remain hopeful.
Love to everyone,
Liz, Brandon, and Maddie