This week is an especially important week which will dictate what our next plans will be. Tomorrow, August 28th, Piper will have a CT scan with contrast. She is due at the hospital at 8:30 am for an hour of fluids via IV. After that, they will administer a sedative and she will undergo the CT scan. Then, she’ll stay for four more hours for more IV fluids. It will be a long day, but it is critical we know if she has already developed any tumors.
The doctors will look not only at her kidneys, but also her lungs, which is where the Wilms tumors metastasize to. If she has developed one or more tumors, then that will speed up our plans to remove her kidneys as that will be the only way to remove a tumor on her kidneys. If the cancer has metastasized to her lungs, they can section that portion of her lungs. Thereafter, depending on the stage of the cancer, there may be additional treatment such as chemotherapy and radiation.
One of the great things we learned from Dr. Dome was that if she has cancer, but it is stage 1 and relatively small, then chemo might not be necessary.
Obviously, we are hopeful that the scan will come back clean and we can prolong her kidney removal a bit longer while we find her a match. My wonderful sister has offered to donate her kidney if mine is too big, and we’ve had several other of our closest friends offer to donate as well if necessary. We are lucky to have such caring people in our and Piper’s lives.
If she has developed a tumor, then we are hopeful we’ve caught it early enough to keep her off of chemo. She’ll have to wait at least a year for a new kidney, which will mean a year or more of thrice weekly dialysis, but no one is going to complain about that. That would also mean that by the time she could get a new kidney, she would be big enough to take one of mine, which would be ideal! Imagine the mileage I could get out of that!
“Piper, please finish you homework”
“Dad, I don’t want to!”
“You know, Piper, my one and only kidney is really starting to feel funny…”
The CT scan is not without some risk. The contrast agent they use is quite harsh on the kidneys and that makes us a little nervous given that we’ve recently learned that Piper only has about 50% kidney function. We are hopeful that the contrast will not do too much damage, but it is absolutely necessary to detect potential cancer.
I will have blood work tomorrow at AI and they will send that out for tissue typing to see how close of a match I actually am. I also have an order for an ultrasound to determine how big my kidneys are. I’ve heard quite a few people pray that I have small kidneys, and obviously, I hope that’s the case. I’ve done my part in this life to ensure that my kidneys have had to work hard enough so they haven’t grown too much!
I’m not sure when we’ll learn of the results of the CT scan, but I will be sure to update you when we do.
Since the last post, Piper’s medication has changed and she is now on Lysinopril twice a day for her blood pressure. Her diet has been restricted even more to limit her to extremely low amounts of potassium, phosphorus and sodium. Try finding food for a 15 month old that doesn’t include copious amounts of at least one of those substances. Yeah…it’s almost impossible. Thank goodness for chicken nuggets and Pirate’s Booty.
Once the medication change was made, Piper began waking up in the middle of the night ready to be awake and play. We’ve spent several nights trying to sleep while she tosses and turns between us in our bed. Usually we wake up in the morning and she is asleep on one of use or we have become a human “H”…Erin on one edge, me on the other and Piper laying perpendicularly between us! I do think we’re finally getting this under control as she has adjusted a bit to the new diet and medicine.
That’s pretty much all for now. Thank you again for all of your wonderful comments, thoughts and prayers.
Love, Chris and Erin
