Yesterday Riley had her monthly chemo appointment, and it was also time for another spinal tap. Our appointment was at 7, so I was fairly certain we would be in and be out. I should know better than to EVER think that. The morning did go fairly well, Nenni went with us so we all had a good time being silly. Until we discovered that Riley's port was not cooperating...they couldn't get blood return.
I'm going to backtrack a bit, but promise it will pertain back to the story - Tuesday night of last week Riley and I enjoyed a late night trip to Texas Children's Emergency room. Riley had a fever of 101, which means an automatic trip in for antibiotics. We got there around 10:30, and were immediately escorted to an ER room...this was one time I was actually thankful that Riley is a "cancer" kid, there were people out there waiting 6 to 8 hours just to be seen by anyone. "Cancer" kids always get priority treatment...but that was where the "special" treatment ended. Everything else seemed to move in slow motion from there on, which was understandable after seeing the mass crowd of people waiting...meaning there were even more already in rooms needing attention and tests performed. So, long story short they did a chest x-ray on Riley because she had been having a persistent nagging cough...so they wanted to make sure there wasn't pneumonia or something else going on. There wasn't, and her counts were high enough...so at 4:30 Wednesday morning we were released back out into the real world.
Now, back to present day. After Riley's port would not work her doctor mentioned that on the chest x-ray report from last week, they had mentioned seeing a calcification on the end of the catheter that is inserted in her chest. This was why they could not get blood return. Dr. Dreyer was able to perform the spinal tap and could give the sedation medicine through her port, but had to give the chemo through a vein in her hand...there has to be blood return to be able to give chemo so they know the chemo is going into a vein, otherwise it could cause severe burns. They then scheduled Riley for a line study...meaning they did a flouro exam on Riley's port where they flushed it with contrast and watched on the "inside" if it was working. They radiologist did notice there was a fibrin sheet (I think that's what they were calling it, I never did get it clarified...so please don't correct me if I am wrong) covering the tip, but never said if it looked calcified. Dr. Dreyer ended up calling me once we were home, and said it was confirmed and Riley's port will have to be removed...it is basically useless to her right now. This calcification is caused by platelet particles creating a clot-type formation, and being that it has been there for a while without being noticed or taken care of, it calcified. So, now our decision is do we replace the mediport or just use IV's in Riley's hand for the remaining chemo treatments. There is a possibility of this happening again, if we do insert another one...but it's hard for me to justify not trying, versus Riley having to be stuck for an IV every month. And then if, God forbid, she has to be inpatient for anything - that would mean needing a couple of IV's. Dr. Dreyer said for us to discuss and let her know next week...there is obviously no urgency to get the mediport removed right now, so we have some time.
Other than that everything is going great. Riley's counts had dropped a little this week, from what they were last week in the ER. Her ANC is 800, last week it was 2200...but it was high enough to still receive her chemo for the month. There were some other numbers that were high, so this led them to believe the numbers were all on their way up. Here's hoping!
Tomorrow we are headed to Austin, Riley has been asked to speak on air during the Make-A-Wish radiothon. Please say some prayers that she will cooperate, because if not they said I will have to fill in...that will not be happening. They plan on buttering her up with some presents first, so let's hope that works! If you are in the Austin area listen to KASE 101 around noon or a little after tomorrow (Friday the 13th...yikes!), for Riley's big radio debut!! I will try and get a little video of it, for those not in the Austin area. Wish us luck!!
**I almost forgot to mention our favorite moment of the day - they had just finished her spinal tap, and Riley was feeling PRETTY good on her "sleepy"medicine. She looked up at me and stared for a while, I thought she was just trying to focus...but out of the blue, so serious she says "Mommy, when I look at your eye...I see 2 of them!!" It was hilarious!! I still laugh, just thinking about it. The girl cracks me up...
Riley and Nenni
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