Back at the end of May Brynlee had a bladder study and renal ultrasound to see what is going on with her bladder. Spinal cord injuries usually affect the bowel and bladder, and since Brynlee is at potty training age we supposedly have to start getting all of this stuff figured out. The bladder study was done in an operating room, so we had to wait in the dreaded same day surgery waiting room. Gosh that place is horrible!
After waiting for what seemed like forever they came and got us to take us to the room. I had the privilege of wearing a white jumpsuit and blue hat for the procedure, which Brynlee thought was hilarious, but at least it allowed me to stay with her. They had a TV with Tangled playing on it and a disco ball, so it was quite the relaxed atmosphere for such an unpleasant procedure, and believe me, Brynlee did not enjoy the procedure, but she was such a trooper.
I don't understand everything about this procedure because I personally had been dreading it, and I tend to block out things that I don't want to deal with, and I do not want to deal with my spinal cord injury child's defunct bladder. Sorry, but I just don't. Anyway, how I understand it is they fill her bladder with some kind of fluid and then when she would pee they would take an x-ray to see if her bladder emptied all of the way and who knows what else. Basically Brynlee's bladder contracts any time it has something in it, but it empties all of the way. So it is good that her bladder empties, but it is not good that it contracts so quickly and so often. I thought the renal ultrasound was good because the radiologist told me that her bladders and kidneys were growing, but I learned today while talking to one of her oncologists that she has stage 1 hydronephrosis, so I am a little bit confused about the information they gave me the day of the bladder study and ultrasound as nothing was mentioned about it. The nurse practitioner from urology hasn't called to discuss this or follow up like she said she would, so I will have to look into it more. Basically Brynlee is going to most likely need to be catheterized and learn how to do this herself. Doesn't that just sound like such a pain? How do you manage that? I know they use medicines and whatnot and people do it, but we just find it to be such a pain. We are not looking forward to any of this, and we have been dreading this for awhile now. Spinal cord injuries suck!
Yesterday we had Brynlee's MRI. We had a little bit of trouble with her heart rate dropping after the scan because she wasn't given her atropine, but we were able to get it stabilized fairly quickly before it went super low.
We also had Brynlee's auditory brainstem test (or something like that). They do this while she is sedated and they stick a bunch of electrodes on her to test her hearing. The chemotherapy that she has had can cause hearing loss, so we test her hearing about once a year. So far, Brynlee has not had any hearing loss or change in her hearing, which is wonderful! One less worry at this point. She is getting old enough that we should be able to do some regular hearing tests in the clinic while she is awake in another year.
Today we had her MIBG scan, which is the scan where they inject a radioactive isotope that attaches to the neuroblastoma and lights up on the scan.
They are doing construction near the pre-sedation rooms, so it was awfully noisy in there today.
Brynlee's scan went well, and we didn't have any heart rate drop issues today. But most importantly, her scans showed no change and that her tumors are stable. The MIBG report wasn't ready when I met with her oncologists, so I don't know for sure the results of that scan, but the tech showed me her MIBG today and the previous one, and we both thought that it didn't look any brighter and that it possibly wasn't lighting up as much, which would be awesome.
We met with Dr. Staddon first and had to tell him goodbye. Dr. Staddon has been doing his fellowship for the past three years at PCH and will be finished at the end of the month and moving to Michigan. I wish I had a picture of Dr. Staddon and Brynlee when she was first diagnosed to do a comparison picture, but I don't have one. We gave him one of our Kickin' It With Brynlee bracelets, which he proudly put on, and wished him best of luck. Brynlee was one of Dr. Staddon's first patients here at PCH, so he has been with us since the very beginning and has come a long way with his bedside manners and confidence. We will miss him!
We then met with Dr. Fluchel briefly as we had already worked out everything with Dr. Staddon, and it was decided that we will space out Brynlee's scans to every four months instead of every three months. I can't believe that we have finally made it past every three months to every four month scans! We have had scans every 3 months, or more often while on treatment, for nearly the last 3 years. In some ways it feels like we might actually be getting somewhere with this cancer business, and we really are hoping that we are getting somewhere. We keep hoping those tumors will shrink and can't wait for that day, but we will settle for stable tumors yet again. Oh, and I have to mention that Dr. Fluchel is on that PCH cancer commercial, so watch for him. He's famous! :-)
So now, let our summer begin!
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