Searching

Tossed on rough waters,
searching. A beacon that will
bring us back to shore.

It is sort of ironic that now that we know what is wrong and what is wrong is not good...now everything is calmer and we have a plan and we are moving forward. Not knowing what was causing Nick's illness was so frustrating and seeing him in pain and just not himself was also quite horrible. The last two days have been calm and quiet, a time for Nick to rest and recover from a long sleepless week. The headaches seem to be gone for the most part and with it the nausea and vomiting. Without the pain, there has been no need for all the narcotic pain meds, therefore, Nick looks more normal each day. His color has improved and his energy level is better.

They are taking Nick off the Gleevac and putting him on the next stronger one up the ladder. This new one is called Sprycel or dasatinib. They want him on this one because it crosses the blood brain barrier and therefore, will better fight any leukemia cells that are lurking there. There was confusion yesterday as to which exact drug because when I arrived the prescription written for Nick's discharge was a different one called Tasigna. Nick and Kate agreed that all three doctors said the Sprycel, so we asked to talk to the doctors. The attending was called and he spoke with me and got somewhat tudinal and told me none of the doctors ever said dasatinib and they wanted him on Tasigna. So Nick got his first dose last night, then this morning they "changed their mind" and said he was supposed to be on the dasatinib!!!! I swear to God it is always something. These are very serious drugs and still somewhat experimental i.e. - there is not a lot of statistical information even out there on these meds. Turns out the blood brain barrier crossing one was the dasatinib, so that's why they changed it back!! Just one more reason why Nick, Kate, & I are ever vigilant as to what is being said and then what is actually being done.

On Monday, January 5th, Nick will have two tests. The first being a lumbar puncture and his second dose of IT (intrathecal) chemotherapy. The second test will be his third bone marrow biopsy. Nick was not supposed to have another one of these until six months after the BMT which would have been at the end of February. However, with the appearance of cells in the spinal fluid, the doctors want to check the bone marrow now to make sure everything is still copacetic in this area. The current attending Dr. SW wants Nick to get IT chemo 3x/week, we are not yet sure whether Nick will be discharged to IPOP or clinic. To us, it really does not make a difference. Both places are equally overcrowded and understaffed (a story for the another post). I prefer that Nick go to IPOP, because I think he will be monitored more closely there. I am concerned about the switch over from Gleevac to Sprycel as this will effect all of his counts in the downward direction and they have to fine tune the dose to get the desired effect without letting his WBC or ANC to get to low. It can also effect platlet count and hematocrit as well. I don't want Nick to get into a situation where he starts needing a lot of transfusions, since he no longer has a line and will have to have an IV started each time.

I am hoping Nick might able to come home tomorrow. His discharge might be held up though due to inability to get his dasatinib prescription filled for his discharge. This drug is expensive and difficult to get and therefore most outpatient pharmacies don't keep this drug "in stock."
I am also worried it will need pre-authorization and his insurance might balk at paying for it. It is critical that Nick not miss any doses, so we must have his rx. in hand before he leaves hospital. When you are inpatient there is no problem getting the drug, once you are discharged you are on your own. So in the meanwhile, Nick is billed to stay in the hospital when he really doesn't need to be there. And people wonder why health care costs are soaring. I am not sure what Nick's medical billing is up to at this juncture, but, I would venture to guess it is easily past 150K.

I am still trying to come to grips with this new turn of events. I would not wish this journey on anyone. Tonight on the way home, Glenn & I stopped at the little desk where you get your parking validated. There was a lady there obviously upset, crying and in pain. Not physical pain...heart pain. She was talking about her loved one and she said "She is so sick and I really hate to leave her." The parking attendant gave her a hug and some gentle words. I watched her walk away to the elevator as tears that are always so close to the surface these days welled in my own eyes. As we waited, the parking lady told us that this lady was the Mom of a young girl who was up on Weinberg because her type of cancer is so rare they don't even know how to treat it. There was a homemade card on the counter with the girls picture. She looked to be about eleven or twelve years old. Recently they told the family that there is no cure for her.

Confront the dark parts of yourself, and work to banish them with illumination and forgiveness. Your willingness to wrestle with your demons will cause your angels to sing. Use the pain as fuel, as a reminder of your strength.” ~August Wilson