The rollercoaster continues.
When I woke up today, the plan was for Lorelei to return from Tahlequah tomorrow to begin a third round of RICE chemo on Thursday.
Instead, when I began calling doctors offices at 8:00 in an attempt to talk with someone who could actually answer my questions, I learned that the reason Lorelei needed a third round of chemo was to BUY TIME because there was no bed available in the small transplant facility at OU. I was told it looked like it might be 6 to 8 weeks till a spot came open! And this was new information to me. Apparently, it would not have even been necessary for Lorelei to have had a second round of RICE if a spot had been available.
Are you kidding me? This is our daughter's LIFE at stake! And you're just "putting her off" until she can fit into your schedule? But you are not informing us of this because if we had been informed of this we might have investigated out-of-state options for her transplant. I was so furious! (My fingers hurt right now as I type because I am hitting these keys so hard.) I don't know that the motive was actually sinister. But shouldn't someone have told us that we should expect to have to wait a considerable amount of time for an open spot for a transplant? Then we could have made decisions based on Lorelei's needs and not a hospital's convenience. We still don't know what the cancer is doing in Lorelei's body or even if her cancer has responded to the RICE and is not growing at the rapid rate it grew in July.
The events and phone calls of the morning are a little blurry in my mind because they were clouded by the raging emotions I experienced. But as it turns out, after a few phone calls and meetings the team at OU managed to find a spot for Lorelei to begin transplant this month and not in November after undergoing God knows how many more torturous rounds of RICE.
So, put away the soy sauce. No RICE this week!
Instead, Lorelei will have a bone marrow biopsy on Thursday. We still plan for her transplant to be "autologous" using her own stem cells. We just need to be sure it is still clear of cancer. If her marrow is not clear, we have learned that her sister Hannah is a match we could use. (Dustin and Gretchen did not match.)
We moved Lorelei's MRI (to look into her back pain) to Friday. Following the MRI she'll have a PET scan. This will be her 5th PET scan. Her first four were ALL BAD NEWS. So, needless to say, Lorelei has some severe anxiety about this one. We feel confident that this one will show that the RICE was effective at killing what the ABVD was not fully able to kill. But Lorelei won't know this for sure until after the PET. Please pray for her anxiety about this scan.
We also learned today that OU had not even begun to make the case for Lorelei's transplant with the insurance company. That was news to me. I didn't know that was something the insurance company had a say in. In fact, I am told they may not cover the transplant if the PET scan does not show that her cancer made a good response to the RICE. I don't follow the reasoning there. But then again, not much of this makes sense.
Tuesday the 18th Lorelei will have some final tests at OU. And well need to investigate if her Hickman catheter will work for the transplant. We've been told that OU would have preferred it to be a Quinton catheter instead since they are bigger and less likely to collapse. They even suggested we might need to replace it but I don't want to put Lorelei through another heart surgery if we can use her veins instead. So, please pray that OBI will find Lorelei's veins sufficient to draw out the blood for harvesting her stem cells. And if not, please pray that someone will find a way to make it work with her Hickman (even if it has to go slower.)
If everything lines up properly she should begin injections of Neupogen around September 28 and then go to OBI on Tuesday Oct 2 through Friday Oct 5 for collection of the cells for transplant.
So, to recap:
- Please pray for Lorelei's anxiety over the PET this Friday.
- Please pray they find Lorelei's Hickman to be acceptable for the transplant.
Posted on Tue, September 11, 2012
by Andrea Decker