Mommie Dearest

And now the rest of the story...
First let me say, that Nick is OK and he had a much better day on Saturday. After getting back from WalGreens, Nick took the new medication around 0115 hours (that's military time for 1:15AM) After we waited about twenty minutes, he was able to take his other anti-nausea medication and then we all hit the hay. He slept all night and had no more throwing up...yeah! Kate spent the night and stayed with Nick on Sat. morning until Aunt Elaine reported for duty. I was off to Kennard Dale High School for our first day of tech week, leaving a laundry list of things to watch for, who to call and whatever else I could think of to write on the notes I left all over the table before I left.

Nick spent the day Saturday reclined on the couch visiting with his Aunt, resting and rehydrating. This is where he has been spending most of his time due to headache, back pain from the LP's and efforts to keep the side effects of the intrathecal chemo at bay. Aunt Elaine did a great job pushing fluids throughout the day and slowly advancing his diet until he was able to eat real food for dinner without issue. I hope he feels even better tomorrow.

On Friday, it seemed that so much of the news we received was really not what I wanted to hear; which caused a lot of anger and frustration on my part to add to that which was already simmering beneath the surface of my seemingly well-developed coping mechanisms.

First of all, it is most likely that SARA is NOT a match for Nick's BMT. This was a HUGE disappointment. They have not made this news "official" but, it seems pretty final that she is only a half match, and therefore not a good candidate for the BMT donor. The doctor told us that they have already begun searching the donor registry for a match. Now the timetable has become a complete unknown. It could be next week or it could be three months from now, or a match might not be found. No one has actually even told us anything about the whole donor registry/ search for a match process...refer to the ever-popular retort of all the medical professionals..."Oh, don't worry about that." More on that subject later!

Second, the whole reason Nick had to return to the clinic again on Friday was to have a lumbar puncture and the placement of intrathecal chemo. Good news (yes, there is occasional good news) was that Nick's CSF showed only a few leukemia cells (like 3 out of 100 cells). Despite this low number of bad cells, he will have to be treated for this with LP's and IC (intrathecal chemo) at least once/week for 4 to 8 weeks. Now the bad news...if the fluid they took this Friday shows increased number of leukemia cells as compared to the the initial tap that was done in the hospital, he will have to have LP's and IC two times/week!! Based on his last response to the LP and the chemo, this will not make for much of a fun week. So everyone please say some extra prayers that he only has to get this stuff 1x/week.

Third, in speaking with Nick's doctor, he basically stated that Nick's leukemia is extremely rare and that there might be a handful of people in the world who have had this particular combo of molecular craziness. While this may be the stuff of which great research articles are written, it not particularly reassuring. The doctor told us that all the big wig oncology types were just the other day discussing Nick's case and the results of that discussion were..."Oh, don't worry about that."

Fourth, I got to meet Nick's "regular" clinic nurse and I was looking forward to meeting her and thought I would get a lot of my questions answered. Unfortunately, I once again got the same litany of comments, advice, and bad excuses for answers to my questions. I was quite beside myself by the time we finished "talking." I am sure I am coloring things to my own perspective, but, I really don't care, this is my perspective and right now, I don't give a good crap about anyone else's perspective! (except Nick's) Basically I was told many things that I felt were an insult to my intelligence and lacked respect for my knowledge as a nursing professional and as Nick's mom.

I know I am only "the Mom"...but, I know in my heart that my medical background will serve to keep Nick safer and will keep his medical team on their toes, whether they like it or not. I was told that it was best that we "try to stay off the internet." I was told that I might just get a call one day and be told, "Nick needs to come down to the hospital right now and just plan to spend the next eight days or so getting tested and worked up." And when get that call, we were to hop to it, drop everything and report ASAP, no questions asked, no teaching, no planning, no what to bring, no what will be done when you get wherever it is you will be going or why, and no explanation of how much it costs and/or how it will be paid for (the financial BS is a story for another post) ....I mean for God Almighty's sake.....I know somebody in that freakin' hospital knows the answers to these questions and I will damned if I won't find out the answers.

I was told I would have to learn to "fly by the seat of my pants." I flat out told the nurse, I was not accepting that! And then, part two of all this becomes, if I don't shut up and deal, I am just going to upset Nick...and now I am like a really bad stage mother in the Miss Junior Petite America Pageant or I have become Joan Crawford in "Mommie Dearest." NO WIRE HANGERS.....NO WIRE HANGERS EVER!!!!

The clincher was the comment that went something like..."I don't know what kind of nurse you were, but...." Well, I will tell you what kind of nurse I was, I was a DAMN GOOD ONE...and I do have two brain cells left in my head, and I can read an article about Gleevac or the Philadelphia chromosome, or biphenotypic CML blast crisis and I can understand what the hell is going on and I can formulate coherent questions that deserve to be heard and answered. So step off bi-atch, because you don't know who you are dealing with right now!

I was so angry...I had to leave before I did or said something that I would regret. I called Barbara and vented!!!!! A lot! Barbara was ready to come in and help me kick some oncology clinic butt!

Then ever since that lovely Friday afternoon, I can't even count the number of "you need to relax Big D" comments, suggestions and or advice I have received from well intentioned folks who are trying to help me. I am sorry, but, my personality is what it is and it ain't changin' now...something like this does not predispose one to relax. If anything, it just sends people like me into hyper-overdrive. I know this about myself, and I will deal with it and try to keep myself in check. However, it does not help me to have people telling me to chill! The only way I will be chillin' is if I move to Alaska or I start drinking heavily!

In the dance studio business, one thing you learn real quick is you don't mess with the baby cub unless you wanna deal with the Mama Bear! And it don't matter how old the baby cub is, because once a baby cub always a baby cub! And then there's the one about not "poking the bear with a stick." Well, I suggest they cease and desist poking this bear with their damn sticks before it gets really ugly. Don't they get it...Mama Bear says, "NO WIRE HANGERS!"

Now, if anyone is actually still reading this, well I guess I have had my first real blog RANT! I hope I did this one justice and I am sure I will have ample opportunity in the future to hone the craft of blog ranting! I don't know about anyone else, but, I feel better. God(s) bless to all and to all a good night!